A rant about lady doctors….
Not female doctors, but doctors who specialize in the lady parts.
For the past eight years I have been on a medical roller coaster trying to treat what’s wrong with me. Nobody can give me an “official” right answer, but the true answer is that I have endometriosis and it controls every aspect of my life. In a very brief nutshell, tissue that is supposed to be inside the uterus is outside,floating around my guts and attaching itself to my internal organs. But it behaves as if it was still inside the uterus, so every time I have a period I have intense, crippling, vomit-inducing pain as I bleed internally and have cysts rupture and scar.
The only way to get an official diagnosis of this condition is to have an abdominal laparoscopy, which means that before you can get serious treatment, or access to pain killers, a surgeon has to stick a laser in a hole in your belly button, a light through a hole made at the bottom of your abdomen, and toss you like a salad. I had this procedure done for the first time in 2002, and I succeeded in getting access to this care only because we were so eagerly trying to have children. If I hadn’t been pursuing fertility, I never would have gotten in the door.
After the surgery I promptly lost medical coverage for the next three years while this disease grew back and rendered me disabled and bedridden. When I got coverage again and begged and pleaded for another surgery, the assface doctor took a quick glance around and decided I was fine. He refused to prescribe pain pills, and insisted that I see a psychiatrist before pursuing any further treatment. I decided to not look a gift horse in the mouth and see the psychiatrist already, who just told me to get a new doctor.
I got a new doctor, who was nicer, but also deeply skeptical about my claims. I managed to get her to start me on a drug therapy of injectable hormones that forced a chemical menopause, and it worked wonders. After six months of drug therapy I got pregnant twice, and ended up with Atticus out of the deal.
It’s now been two years since Atticus was born. Two years that we’ve been crossing everything hoping for another baby, but the symptoms have grown progressively worse and I finally admitted it was time to start over again. I went to a new doctor on Wednesday with medical records in hand, including a picture from the first surgery proving the diagnosis, and once again he was perfectly nice but apparently skeptical. Despite physical proof of two surgeries and my explaining that our goal was still fertility, he wanted to put me on birth control pills to manage the pain. When I said no, he asked about Depo-Provera. When I said no again, he relented to putting me back on the injectable hormones for a few months, but refused my request for a referral to a rheumatologist despite studies that prove endometriosis is an auto-immune disease just like lupus or rheumatoid arthritis.
When I tweeted about my frustration that this new doctor wanted to start at the very beginning, I had several friends tell me to just get a new doctor. But obviously it isn’t that simple. I’ve had countless doctors of every age and sex deal with this, and I’ve never felt confident that they were going to give me the treatment I’ve needed. I’ve had to beg and cry to get every pain pill I’ve ever taken, and many of my doctors were skeptical of the initial diagnosis despite the proof of my medical records. Obviously if I hadn’t had to move around so much and could have stayed with the first doctor ever, things might have been easier, but why don’t my other doctors believe my medical records?
This is a big fat case of the personal being political. You really can’t get much more personal than fertility, pain, and accusations of mental illness. But I think my struggle is an example of a much much larger problem with how women’s health is treated in America. We’ve talked frequently about concerns with birth and pregnancy being treated like diseases, but what about when pain and disease are treated like an exaggeration? It’s estimated that 1 in 10 women have endometriosis. That 50% of women have pain during menstruation so intense that their work and social lives are affected by it. And yet even after eight years, two surgeries, and more doctors than I can count, I still get figurative pats on the head and the message that periods are just supposed to hurt.
I feel your pain. I have endometriosis too and was diagnosed several years ago while pursuing fertility treatments - in our case my husband has issues as well, so we have the double whammy of both being infertile. Ahh, the togetherness….
I’m headed back to the RE soon, hopefully for another laparoscopy and then a frozen embryo transfer.
I’m sorry you haven’t been taken seriously by so many doctors. I have been lucky in that regard, I guess - I’ve never been told it’s in my head. Although I do think that it’s kind of weird that I’ve been told to take Ibuprofen for the pain (it doesn’t even really make a dent during the worst days) - whereas when I was in a very minor car accident and reported that my neck hurt “a little bit” the doctor dashed out a script for Lortab without a pause.
Comment by Chelsea — October 9, 2009 @ 8:58 am
I’m angry just reading this. How frustrating. I don’t understand what a doctor has to lose by listening to you or by referring you to a specialist. What kind of incentive does a doctor have to refuse the referral? Something to do with the insurance? Does he get a “bonus” if he doesn’t refer patients? All the doctors I have dealt with have seemed eager to refer because they don’t want to mess with things they don’t know enough about. Then again, none of it has been about “lady issues”, so maybe you are onto something with it being a much much larger problem with how women’s health is treated in America. Thanks for posting about this and getting the dialogue going.
Comment by Stephanie — October 9, 2009 @ 9:14 am
Why is it that I can chart the pain, nausea, uterus melting experience for 3 months and I get a 30 second breast exam/pap smear birth control prescribed visit, but my husband goes in with a little pain “down there” and they send him for 8000 tests to determine he has a pulled muscle. Do they think we are making it up or that the hormones are making us overreact? I don’t know, but I have yet to find a “girly-bits” doc that I am confident has actually taken my concern to heart.
Just frustrating in my opinion, but it somewhat comforting and disheartening at the same time to know I am not the only one who feels this “ignored”
Comment by britt — October 9, 2009 @ 9:14 am
From the time had my first period at 14 until the birth of my first baby at 24 I went through such searing pain at each period that it made my actual natural births a breeze. I had the equivalent of a birth at each period–complete with diarrhea, pushing, but the “labor” pains were much worse, as they were continual and sometimes seemed to be coming in two directions at once. The medical establishment didn’t do a thing.
Other people (other than my mom) also gave me those “just grin and bear it” talks. It made my teen years somewhat difficult, missing all that school and stuff, not to mention the 4-10 days of searing pain I was in every month. I actually didn’t understand how out-of-control my pain was compared to the ‘normal’ female experience until I had my first child. Wow. For years talking about the pain would upset me so much I’d start to shake.
I am so sorry to hear that the medical profession hasn’t figured out yet that our female bodies sometimes misbehave in incredibly painful ways. Your situation should be unthinkable. You have a diagnosis. Why can’t they just, you know, believe you?
Comment by djinn — October 9, 2009 @ 9:18 am
This is the very reason I switched doctors, and I don’t have fertility issues.
I got tired of everyone looking at me like “ya right you are in pain and have actually done research on it”. Most doctors realize that women are built differently but fail to TREAT us differently. I mean, come ON look at how a heart attack displays itself if in a man vs a woman. No wonder so many women die from them, they have no clue what is going on cause the doctors haven’t gone to the trouble of educating them in HOW they are different from men, not just in the genitial area… but the WHOLE blasted thing.
And the fact that studies have PROVEN that women generally have a higher pain tolerancy than men should raise HUGE red plags to doctors when a women says she is in great pain. I know there are a few wusses out there, but COME ON people, though we are not able to lift as much as men we CAN handle pain.
Luckly I found a great doctors that considers just these things, and a great sidenote is that she is a woman as well, so she has a clue about periods and all that messiness (not just someone elses discription of what it feels like). Period are SUPPOSED to hurt? Give me a freakin break. They are not.
Ugh. I feel for you. Hope you find a great doctor soon.
Comment by Aprillium — October 9, 2009 @ 9:38 am
I had that condition as well. The first laproscope enabled me to have my daughter; the second my son. After that I went on the pill for a while to control it. I then had a uterine ablasion which is the best thing ever (but you can;t have children after that so wait until you are done).
I recall that the pain was severe enough that I was put on morphine but time has dulled the memory (thank goodness).
Endometriosis is a very common medical condition. There are a number of doctors who are versed in this area.
Comment by StillConfused — October 9, 2009 @ 9:40 am
Wow. Deep, red anger here for you. Get the heck away from any condescending, son-of-a-gun who won’t listen to you and give your story some validity. There are plenty of good, professional doctors out there… I hate having to find a new dr (or a new mechanic) but dang it all, you don’t have to put up with this!!! Sorry, I know part of your frustration is that’s the advice everyone gives you and I also know it’s not that simple (I’ve got health/PG issues too and have had to switch Dr’s a couple of times) but dang, these people don’t deserve your money. Honestly.
Comment by sare — October 9, 2009 @ 10:07 am
Here’s a solution to getting pain meds for your condition, based on comment #1: borrow a friend’s old clunker car, have an little “accident” with a pole, then say your neck hurts!
(I’m just kidding. And aaak, I hate the condescension you describe.)
Comment by Vg — October 9, 2009 @ 10:38 am
re 2: Stephanie said: “I’m angry just reading this.”
Yea, what you said. I blame it on Freud. One Misogynist and now the whole Medical Establishment thinks its ok to diagnose all females with hysterical insanity caused, no doubt, by penis envy. Give me a break. I read a sci-fi book once in which some magic person decided to make the Pope pregnant. Gave him
a whole nuther attitude about the availability of birth control. I admit to have had more than one revenge fantasy like that - “Oh, you don’t know how it feels Doc? Here, I’ll show ya!” I’d be
merciful, just let him writhe on the floor for a few moments before I take the pain back and let him restart his diagnostics.
So sorry to hear your story Reese. Hope you find a great Doctor soon.
Comment by Betty Jo — October 9, 2009 @ 10:45 am
My roommate has gone through the exact same thing, minus the child — she had the same hormone treatments that put her into menopause at 24, the same skepticism that led to lack of treatment, etc. She had the laproscopic surgery and it was back within a few years. Her recent surgeon told her that she has the most severe form of endo.
However, she just had a new kind of endo surgery done in Atlanta, GA, at a special endo center. It doesn’t use laproscopy — the surgeon actually cuts out the endo. Only two surgeons in the US do it; one in Connecticut, and one in Atlanta. Email me if you want some more details about how she’s feeling now and the name of the doctors, if you haven’t already looked into this!
On a general note, I agree that it is horrific that this disease has so many medical professionals that dismiss it as ‘just bad cramps.’ The problem I know is that you cannot see it on an ultrasound or anything like that, but with surgical proof they should no longer deny you treatment. Anyway, email me if you want; I’m sure my roommate would be more than happy to speak with you - diana.teaches@gmail.com
Comment by Diana — October 9, 2009 @ 10:47 am
Shot in the dark, here, but have you tried using a midwife practice as your OB/GYN?
Because I have moved, too, I have used 3 separate midwife practices (each of which included a “real” doctor–an MD). In my experience, midwives and the doctors who work with them are much more likely to listen and are willing to let you make a lot of your own decisions–they give input, but every call is mine to make.
Midwives can prescribe and I know mine work with many many women who are not pregnant or even could become pregnant–their clientèle is as diverse as we are as women. Because I am now considered a high risk pregnancy, I work more with the doctor than the midwives near the end of the pregnancy, but she is every bit as awesome as my midwives. VERY willing to discuss my own ideas/research, very complimentary of the questions I ask, very happy to try a different approach, etc. It is a very customized medical experience.
Comment by ESO — October 9, 2009 @ 10:50 am
This is so maddening, Reese. I’m sorry.
Comment by Lorian — October 9, 2009 @ 10:55 am
I have doctors that do this to me with my hypothyroidism. They don’t look at symptoms for that disease, they only look at one tiny little blood test number–and most doctors in Utah *don’t* use the most current research and recommendations from the endocrinologist association, so they claim that my numbers are “normal” when in fact they’re high and they should be increasing my meds.
No amount of shoving research and actual numbers in their faces changes it, either–which drives me crazy. Seriously, how hard is it to look at how much better people like me do with proper treatment??
I have no idea if it’s because I’m a woman (though most hypothyroid patients are women, so it’s very likely), but I sympathize with what you’re going through.
Comment by stacer — October 9, 2009 @ 11:01 am
I too have felt the condescension, the pat on the head, when it comes to matters of my reproductive system, and I don’t even have fertility problems. Reading about the way you’ve been treated enrages me. Like Betty Jo (#9) I wonder sometimes if it’s grounded in deep-seeded misogyny in the medical community. If I get a cavity filled at the dentist, I can get a lortab, but you can’t even get anything for endometriosis, which is known to be very painful??? Ridiculous.
I agree with ESO (#11) about the possibility of switching to a midwife. My sister had a very rare form of uterine cancer and if she hadn’t been going to a midwife, I doubt if a doctor would have believed her. She ended up having a hysterectomy, but the alternative was certain death. After years of the pats on the head and the condescension, I’ve finally decided to make a switch to a new nurse midwife in my area.
I hope that you can find a doctor who will believe you and you will be able to conceive again.
Comment by Risa — October 9, 2009 @ 11:06 am
I totally hear you. I am on my 4 prescription for the pill trying to fix everything. I had the surgery in December, which finally confirmed what I had thought all along. I really just want my doctor to take out my left ovary. I do have good doctors, I wish you lived closer and could see. Both my primary and my GYN surgeon have done a good job of listening. I hate that you can’t get them to just read your chart, I mean actually read it. I have the worst kind too and part of me is scared for the next 20 years of pain I have to look forward to if we can’t get this under control. At least for me, I am grateful that we can’t have any more kids because it opens up my options. My problem is that the pill makes me horribly ill and doesn’t fix the ovary pain.
Comment by LCM — October 9, 2009 @ 11:07 am
I’m so sorry to hear about this, Reece. While I wasn’t diagnosed with endometriosis, my cramps from my teens through my 20’s and in to my 30’s were so excruciating, that I have, fainted, thrown up, became immobilized, and spent many hours just weeping and begging that I would die (really!). I found, that like djinn, I was experiencing some really strong contractions, like in labor! I had a standing prescription for codeine (and still do) although the pain rarely comes anymore.
I know you’ve been through so many, but please find another doctor who will listen and prescribe as you need. It’s not worth your suffering!
Peace and a pain free wish from me!
Comment by meems — October 9, 2009 @ 11:17 am
That sucks you’ve had to go through so many terrible doctors. I went through a somewhat similar experience with ovarian cysts–I had absolutely incredibly painful periods all through my teenage years. Finally in college I had a laparoscopy, and they were able to remove one cyst, and found lots of blood around the uterus from other cysts which had burst over the years. Later gynecologists have treated my statements of what the laparoscopy found with skepticism, telling me it is a myth that women with tilted uteruses have the blood flow out the fallopian tubes (which greatly confused me, as that’s NOT WHAT I SAID the laparoscopy found or what that doctor explained had happened–it was like these other doctors already had some pat answer in mind before I even fully explained the situation). Luckily, I’ve found a great female gynecologist who has been very helpful, and above all, she actually listens to me.
You may have already gone this route, but if not, there are two organizations for the support of those with endometriosis: The Endometriosis Center, and the Endometriosis Association. You might try contacting them to see if they have doctors in your area that they would recommend. The Endo Assn also lists support groups, if there’s one in your area, some of the other members might be able to also give you recommendations for doctors they trust. Good luck in finding a doctor who will listen and help.
Comment by de Pizan — October 9, 2009 @ 11:27 am
Weird, I thought I checked the links were in there right before I posted. Sorry about that!
Comment by de Pizan — October 9, 2009 @ 11:29 am
I also recently had an experience with a jerk of an OB/GYN. I’m a newlywed and I had been prescribed a birth control before the wedding by a doctor I wasn’t really thrilled with, but he was ok. But then 4 months later, I realized that maybe my depression and anger and extreeemely low sex drive had something to do with the pill I was taking. So, not being very thrilled with my last docter and desperate to get a new prescription as soon as possible, I scheduled the first appointmet I could with a new doctor.
Big Mistake.
I show up to this appointment and explain to the doctor that I KNEW my body was reacting poorly to this pill and that my life was really being affected. Daily fights with DH, DH being hurt because my sex-drive is non existant, etc. I explained to him that I just wanted a new prescription for a different pill because I had researched that sometimes pills just aren’t a good fit. You know what he says to me? “Its not the pill, its in your head” He then goes on to explain to me his theory on why girls in Utah don’t ever want sex after marriage and, even though I had a very high sex drive before (DH was the one putting the brakes on during our dating days), getting married simply removed the “mystery” and so I didn’t want it anymore. He says he sees this problem all time and that low sex drive is just a young utah girl thing in their heads.
The worst part of the entire meeting was that he then decided to give me some marital relationship advice. He said that even though I may not want it, I should still have sex with my husband several times a week in order to keep him happy and not resentful of me and just use a lot of lubrication. wow.
He eventually gave me a new prescription, but not without a lot of arguing and teeth pulling from me. I feel a TON better on the new pill, so I guess it wasn’t in my head. A few weeks later, I received a letter from my insurance telling me they weren’t covering the appointment bc the jerk doctor coded it as a “sexual dysfunction”, rather than simply a bad prescription.
Comment by bandgazebo — October 9, 2009 @ 11:54 am
I’m seeing red now. Bandgazebo, I know exactly what you are talking about re the pill. How hard is it for a doctor to just try a new prescription? Or two or three? Argh. What a jerk.
Comment by Stephanie — October 9, 2009 @ 12:00 pm
A little more information for more context:
My medical coverage is through Kaiser, which is either God’s answer to healthcare or the best reason for reform, depending on what you need done. They have been so aggressive in making sure Atticus gets every single bit of care available through every resource, that I couldn’t just pack up and find new insurance. They’ve been an absolute godsend for my disabled child.
But, since I have Kaiser, I’m limited in the doctor’s I can go to for myself. They do have midwives, but they want me to see a doctor who’s also a gynecological surgeon since they’re more trained in this disease. Allegedly.
This most recent doctor was at least open to giving me what I wanted most, and he was totally pleasant doing it, so I don’t know that I’m going to find much better out there unless I’m willing to write a blank check.
The psychiatrist I was forced to see told me that people usually go into OB/GYN so they can deliver babies, and don’t like dealing with anything else. I think a case could definitely be made for the industry being infected with misogyny. Think of the power a male doctor has over a woman’s body. It’s kind of terrifying.
Comment by Reese Dixon — October 9, 2009 @ 12:05 pm
First thing we do, let’s kill all the doctors.
Comment by Mark B. — October 9, 2009 @ 12:08 pm
Reese–so don’t see male doctors
Comment by ESO — October 9, 2009 @ 12:20 pm
What an outrage! I’m so sorry that you’ve had so much lack of care that you need. And how frustrating that you have to go without treatment or followup when you’re not covered by health insurance. I have yet to find a great doctor, too. Why is that such a hard thing?
I was so angry and dissatisfied (a little irrational) with the decisions made at my daughter’s birth 5 months ago (it was completely a you’ve-been-in-labor-longer-than-we’d-prefer-so-you-get-a-cesarean, no medical indications of distress or anything) that I chose not to even go to that doctor for the 6-week followup. I probably should have gone, but I really had no trust in her anymore. That’s horrible! I’m sorry I wasn’t helpful to you, either. I’m just sympathizing with your lack of finding a competent doctor you can trust with something so personal.
Comment by Ana Priscila — October 9, 2009 @ 12:20 pm
Sorry you’re having so many problems with doctors
As a somewhat tangential note, it’s not just lady doctors. It’s way too many doctors when they’re dealing with anything even slightly out of the ordinary.
When I was in high school I contracted something that was later diagnosed as chronic fatigue syndrome. For the first six months I was sleeping 17 hours a day. I had some decent doctors to begin with, but they couldn’t figure out what was wrong, and I ended up at Mayo Clinic. They’re supposed to be the best in the world, right? Well, they ran tons of tests, and when they couldn’t figure out what it was they decided it was all in my head (because I wanted an excuse to not get as good of grades as my older sister — really??). Luckily I knew that wasn’t true, and I was able to blow them off, but they could seriously damage someone by trying to convince them it’s all in their head when it’s not (especially a teenage girl). I did have a sleep study done about 6 months later that gave me some validation. Even though I was sleeping 13 hours a day, they said I had the sleep patterns of someone with sleep deprivation. My response, “Well, I feel like I have sleep deprivation.” (And an additional side note, I just saw a news story yesterday that suggests that many cases of chronic fatigue might be caused by the XMRV retrovirus.)
I won’t even get started on what doctors try to tell you when you’re trying to treat autism. Mostly, though, it’s some version of “We don’t have any idea what causes it, but we know _that_ has nothing to do with it!” It’s ridiculous.
Then there’s the pediatric GI I took my second son to. I’m pretty sure he has an EGID. I described his symptoms to the doctor (mostly chronic diarrhea and failure to gain weight), said what we’d done (taken out soy, dairy and gluten, which had made him go from 7 messy diapers a day to 4), and said what problems remained (still failure to gain weight, too much diarrhea, etc). The doctor *looked* like he was listening to me through all of this, but then said that his poop was probably a weird consistency because of the diet I had him on (but it’s better since I put him on the diet!), and that if I wanted him to gain weight I should give him dairy (seriously, did you listen to a thing I said?). He was the only pediatric GI within a few hours of us, so I just gave up and kept treating it myself.
Anyway, I know this was only tangentially related, but I always need a good place to rant about how doctors don’t listen to patients, so thanks. I hope you can find one who does listen!
Comment by Vada — October 9, 2009 @ 12:21 pm
Reese–you might bite the bullet and pay to see a doctor who is out of the network but will work with you. In my experience, doctors charge “self-pay” patients less than they charge insurance companies for identical services.
Also, maybe a general physician, rather than an OB? I have had excellent PAs and Nurse practitioners, too.
Don’t let Kaiser dictate your health. Take control.
Comment by ESO — October 9, 2009 @ 12:24 pm
Just to show that I know that some doctors really are good, I’d like to recount an awesome doctors visit we had recently.
Dr: “So why are you here today?”
Me: “We just moved to the area, and my son has a cashew allergy.”
Dr: “How do you know? Has he been tested before?”
Me: “Yes. We had an allergist where we lived before, I just need a new one here.”
Dr: “So it’s specifically a cashew allergy? What about other tree nuts?”
Me: “He didn’t react to the general tree nut sample they had at the other allergist, but I’m not sure what type specifically it was. He did react to the cashew sample I asked them to test for.”
Dr: “How did you know to ask for a cashew test?”
Me: “I’d given him one and even though he just chewed it and spit it out, he broke out in hives around his mouth.”
Dr: “Oh, so you knew he was allergic even before you had him tested.”
Me: “Yes.”
Dr: “Okay then. I don’t recommend retesting for nut allergies in children. They don’t usually go away, and it’s not worth the risk.”
Me: “Great.”
Dr: “I would suggest you avoid other tree nuts as well because of cross contamination issues.”
Me: “We already do.”
Dr: “Great. What about your prescriptions?”
Me: “That’s actually why we came in. The epi-pen scrip will expire soon, and I need it current so he can keep it at school with him.”
Dr: “Okay. I’ll write you a new prescription for the epi pen and the benadryl, and write a note for his school. Is there anything else?”
Me: “Nope.”
He listened to me, trusted me, and agreed with what I was doing. Then he wrote the prescriptions and notes I needed without any kind of fight, and we were able to happily go on our way. It was awesome.
Comment by Vada — October 9, 2009 @ 12:33 pm
My best wishes for you Reese, I hope you find help soon!
I’ll try to be brief with my off-topicness
#19- Reminds me of trying to renew my BC prescription at the BYU-I health center a year after I’d been married. The middle-aged gent on duty proceeded to explain to me in no uncertain terms that putting off birthing and nursing was almost definitely going to give me cancer (as a punishment from God I expect). I was young then, and pretty thoroughly terrified by the diatribe. I have since then gone to female practitioners at the health centers at both Y-I and the Provo campus. They screened to see if the pill was causing any problems, and calmly discussed the risks and benefits. I wonder if Gent #1 was dispensing advised based entirely on medical evidence, or if it’s because he ran absolutely no risk of gestating, giving birth, and devoting years of his life exclusively to child care and is a big fan of old school church policy. Hmm.
Comment by Moniker Challenged — October 9, 2009 @ 12:41 pm
ESO, I’ve been at this for eight years. Do I really come off sounding passive about this? Believe me, I’ve tried every single thing at my disposal, and no one is going to come up with a suggestion here that I haven’t tried. As I mentioned in my initial post, it’s not just male doctors. I’ve seen female doctors who were just as deeply skeptical. Surely you understand that not only men can be misogynist, and female doctors still have to answer to a misogynist system.
I have seen GP’s. I have seen NP’s. I have seen PA’s. The problem remains, because as soon as I say endo, the answer I *always*, without exception, receive is, “well, you’d have to go to OB/GYN for that.”
I am proactive and educated and through one battle after the other I’m making the system work for me. But obviously from the comments already left this is not just my problem, this is not just a Kaiser problem, and the solution is never as simple as “just find a new doctor.”
There is a strict divorce between women’s health, and the rest of the medical establishment, and that’s what I wanted to discuss, using my own experience as a way into the conversation.
Comment by Reese Dixon — October 9, 2009 @ 12:43 pm
And it’s things like this that make me want even more to become a doctor. I really hope that I will never be like that.
Now if only I can get a response to my prayers about whether or not med school is a good idea…
Comment by Elina — October 9, 2009 @ 1:04 pm
Sounds like everyone has some kind of horror story! Mine was that when I was 20 weeks pregnant I started having severe, sharp pain in my back and side. It felt exactly like a kidney infection or kidney stones (both of which I have had before). My OB had me go to the hospital to get checked out. They kept doing all these tests to see if I was in early labor, which I knew I wasn’t. Finally they just told me that pain in pregnancy is normal and to suck it up.
Fast forward 2 MONTHS of debilitating pain…I had meanwhile switched to a midwife practice (which, of course, some family members said was dangerous, as they would be unable to catch any problems). One day I was driving and felt such excruciating pain that I had to pull over and scream. I called the midwife and she immediately sent me to the hospital, where she met me and stayed with me the entire time. She listened when I told her I thought it was my kidney, and she insisted I have a renal ultrasound. Turns out I had severe hydronephrosis–basically, the baby was blocking my kidney from draining, and it was twice the size it should have been. I could have been saved 2 months of pain if the previous doctor had just listened to where I said it was hurting.
On a positive note, the urologist I began seeing was fantastic. While he recommended I have a stent put in to drain the kidney, he understood that I was worried about having surgery while pregnant. I was able to make it through 40 weeks of pregnancy with the help of some heavy painkillers (it’s okay to take those in the 3rd trimester, although I tried to only take them when I thought I was going to die). He left the choice up to me but kept monitoring me throughout the process. He made me feel like a total rockstar for dealing with this pain and wanting to protect my baby. He explained things in a way I could understand. And, when I returned to see him after my baby was born, he offered to let me use his private office to breastfeed her.
Comment by Sofia — October 9, 2009 @ 1:06 pm
You didn’t sound passive, but you did sound bound to your health insurance.
I don’t think this a a women’s health issue. While women’s reproductive organs are somewhat more mysterious, being internal, that is hardly the fault of the system. Personally, I don’t understand why anyone ever goes to a doctor for care of an organ/system that doctor doesn’t have. While I am sure there are fabulous male OBs and marvelous female urologists for vasectomies, I would like the common experience of having the organ to be treated.
In my experience, arrogance runs rampant in doctorville. I have a sibling in medical school, and I have seen that sibling become increasingly arrogant. Of course there are doctors not so afflicted, but those that are, I am guessing, are equally condescending to patients, male or female.
It is not a distinctly female issue to be dismissed. I think you want to argue that it is, but I disagree. I think there are a lot of variables at play in “being dismissed” medically, and the two most important are the patient and the doctor (insurance places a close third, culture fourth, medical history fifth, etc). That is just my take on it. Based on my experiences.
Comment by ESO — October 9, 2009 @ 1:13 pm
I agree. My bad experience with an OB was at a clinic where all the docs were female. However, in the history of medicine traditionally the male condition has been considered “normal,” and many medications were not even tested on women because their hormones were considered “abnormal” factors. While things have improved, some of that attitude still exists.
Comment by Sofia — October 9, 2009 @ 1:23 pm
19 - I am shocked at that behavior from your doctor.
Perhaps there is more to the story, but I would write the administrator and log a formal complaint. That type of advice is completely unprofessional and inappropriate.
And s_xual side-effects to the birth control pill are well known and established - since the 70s.
Comment by aerin — October 9, 2009 @ 1:39 pm
19-I’m shocked. I’m so sorry. I hope you have found someone who will listen to you.
Reese. I’m sorry you’ve been in pain. Why do doctors think they know our bodies better than we do? UGGH
Comment by britt — October 9, 2009 @ 2:08 pm
Guilty - I am totally bound to my health insurance. With my son having the medical needs he does, not only are we stuck with this particular insurance, but we also don’t have any additional money to devote to medical expenses. So I’m left fighting to get the care I need. If I wasn’t able to win the battles, I’d take other steps including a second mortgage if necessary, but since I can get enough of what I need if I scream loud enough, I’m left with that as the best option.
In my experience, gender can’t be counted on in determining the quality of an OB/GYN. For a long time it seemed like common sense to me that a female doctor would understand things better, but I’ve had female doctors be unbelievably dismissive of pain or weight gain because they feel like their own experience is universal. I’ve had some male doctors not get female pain AT ALL (the doctor that insisted it was psychosomatic was male) but then the two best, most understanding and sympathetic doctors I’ve had were both male. They both had the attitude that since they couldn’t feel my pain, they had to take my word for it.
I think you’re totally right about the many factors in a dismissive doctor, and I think arrogance absolutely plays into it. But I think that there are a couple other factors as well. It’s deeply problematic for me that OB/GYN issues are so compartmentalized. My endo is only treated as a fertility issue, despite all the other symptoms that just scream auto-immune disorder. I have to go to four different specialists for all the different symptoms instead of one doctor who can treat the entire disease.
I think how womens health issues are funded and researched is also dramatically different than other fields. It’s trite at this point to bring it up….but we have Rogaine and Viagra, and yet millions of women suffer from this disease we can’t even diagnose without surgery.
And then there’s the fact of how women are socialized. To be “nice”, to accept the voice of authority…it works against them being their own advocate.
Comment by Reese Dixon — October 9, 2009 @ 2:09 pm
I have endo and have been very lucky. I was diagnosed unofficially by the GI guy I went to and the obgyn believed me. My insurance however, believed that since I was not trying to get pregnant, surgery was unnecessary. I suffered 5 years before saying enough and switching to a doctor who specialized in laproscopic surgery. He knew how to write things so that the insurance company would pay and I finally got the official diagnosis, plus he burned off everything he could see. Still had problems, but better then before.
My big obgyn complaint was that I had pain during sex. I talked to numerous doctors about it and I was constantly told that it was psychological and typical for religious girls after marriage. Some also mentioned that endo might be affecting that, even though the pain was different. When I was giving birth to my daughter, the doctor looked up and said “you had a lot of pain with sex and a hard time getting tampons in, didn’t you (I had never brought up my problems with this dr because having been told I was a nutcase for years, it didn’t seem worth it)? I said yes, he said, ok, fixed that for you. Very minor problem, but caused lots of suffering for years and hurt my marriage. I kind of resent the years of painful sex that I could have avoided if drs hadn’t acted like I was a crazy lady.
Comment by Tami — October 9, 2009 @ 2:39 pm
To me, the compartmentalization, research funds, and socialization all are issues that affect both men and women. For example, a guy in my ward has had some severe medical issues that have plagued him for months (maybe years), and, quite frankly, have almost killed him because the doctors he was seeing were going after the symptoms and not the underlying cause. Just last week he got a new doctor who seems to be approaching his issues differently. Auto-immune issues are classically difficult to diagnose–talk to anyone with MS–most have been through many doctors before the diagnoses came up right. Not a female thing, IMO.
Research–you are correct about some imbalance here. Many examples of this. Still, there are some diseases that get more attention than others, and it is not necessarily a gender thing. Many cancer patients/researchers, for example lament the amount of money that goes towards cancer research (which affects so many) and the amount that goes towards AIDS research (which affects relatively few in our country now)–maybe that is an outdated example, but I think it is apt nonetheless.
Men are socialized to NOT seek medical treatment. I am sure we all have experience, even tangentially, with that.
So, to me, the issue is not gender, but it is still crappy. Personally, I think the fact that health care in this country is driven by profit is the real culprit. When someone can profit off my illness and pain, that is a seriously messed up society.
Comment by ESO — October 9, 2009 @ 2:41 pm
I don’t mean that there are no gender issues at play ever, or that there are none in your case. It could very well be that you have had women-hating/women-misunderstanding people working on your case. I am just saying that there are so many issues, (and some bigger than gender, IMO) that I would not want to peg it on a rather narrow source (misogyny).
Comment by ESO — October 9, 2009 @ 2:48 pm
It really bothers me that some doctors discount women’s sexual problems (i.e., pain during sex) as being some kind of psychological hang-up. Many, many women have real physical problems that make sex painful or unenjoyable for them. Meanwhile, men’s sexual problems are studied, Viagra and myriad other drugs are created, etc. Wouldn’t you just love to see a commercial for a women’s sexual enhancement drug, showing a coyly smiling couple, with the man saying, “This has made our marriage so much better!”
Comment by Sofia — October 9, 2009 @ 2:55 pm
My brother has an insane amount of health problems, and my family was on Kaiser for a time. Once a doctor confided to my mother that they are encouraged (monetarily) to not send people to the hospital or to specialists.
They are on different insurance now. I understand that Kaiser has really helped with your son, and I think that is fantastic. It’s just that this may be the reason for some of the doctors being unwilling to work with you.
Comment by Novice — October 9, 2009 @ 3:02 pm
I’ve known several women with endometriosis, and would confide in me, being a man.
The first one was a coworker who almost never got sick. But, she said she started being in horrible pain 2 weeks out of 4 weeks. At least her doctor recognized what it was, and tried hormones for a few months. That didn’t work, so she had a hysterectomy. Afterward, the Doctor said “that’s the worst one I’ve ever seen!”
But, that’s not a option for women who want (more) children.
I’m also on Kaiser. Some problems they do very well with, but others they lag on quality of care. The second woman I knew with endomy. was also having pain, but was written off as a mental case. She switched doctors & facilities, and finally found someone who diagnosed the problem right. But, no one at Kaiser wanted to say they were sorry they misdiagnosed it.
Comment by Mike H. — October 9, 2009 @ 3:17 pm
I feel so much solidarity with all of you. My son has Lyme disease of the central nervous system, a debilitating condition that causes him to be in so much pain and anxiety and is such a nightmare that he often begs for euthanasia. It’s heartbreaking. It’s a condition insurance companies have decided doesn’t really exist, despite the fact that he has a positive spinal tap. We have to fight with the system every step of the way to get him care. Doctors who will care for patients with Lyme Neuroborreliosis are punished by the insurance companies, and if they don’t comply they’re dropped. The medical board that decides what comprises standard care is heavily stacked by the insurance companies. Meanwhile my son’s life is in the balance. It’s infuriating. What do you do? Throw them all out and start over?
Comment by Tatiana — October 9, 2009 @ 4:19 pm
Reese- I’m sorry you’re not getting what you want and need out of your healthcare. Complicated disorders like endometriosis lie in a neglected no-man’s land stuck between medical specialties and insurance coverage, with little reliable research and lots of social stigma. I’m currently a medical student, and it breaks my heart to hear stories like yours. Women have been marginalized by the medical community for a very long time, and it’s better than it used to be, but we still haven’t caught up, particularly with respect to disorders that affect only women.
As terrible as it sounds, it has been my experience that doctors have a real tendency to shy away from complex cases. Endometriosis falls squarely into that category: it is a complicated disease that varies tremendously from patient to patient, and, as you know, it can be very complicated to manage and live with. I think your best bet is to find a doctor who is filling to fight for you and alongside you, which is easier said than done, of course. Ask around - do you know other women of reproductive age who use your same hospital? Do they like their doctors? If you can grab a nurse’s ear during one of your visits with your son (who is totally adorable, btw), ask him or her who s/he sees at the hospital for their care, or if they know of a doctor who is particularly well-liked by the patients.
I wish you the very best of luck!
Comment by Future-Doctor Jane — October 9, 2009 @ 4:43 pm
something interesting my mother brought up today about medical and insurance (she’s a social worker).
Did you know that if you have ever been a victim of domestic abuse your insurance company can deny you coverage? not just for now, but forever. What the heck is up with that!?!
Comment by Aprillium — October 9, 2009 @ 4:48 pm
Wow Reese, your story is so similar to my own, it’s uncanny. (I was actually given a literal pat on the head by one particularly memorable condescending doc. In fact, while we were discussing my treatment of “stretching exercises”, I noticed the cartoon drawing he had framed on his desk. It was a picture of his face with a perverted and sleezy grin, gloved hands reaching forward and center. It was sketched from the perspective of a woman on the exam table–stirruped feet and all. I kid you not.)
After finally finding a fabulous doc, countless surgeries, and years of seriously unspeakable pain, DH and I were blessed with beautiful twins–a girl and a boy–who just turned 16 yrs old. We had planned on having more children, but after 5 more years of surgeries and hell, my doc recommeneded a hysterectomy. Honestly the best thing I ever did for my health. Life, sans debilitating pain,is a beautiful thing.
I am sending well wishes into the universe for you and yours. I hope you are soon blessed with health, help and peace. So sorry for your situation.
Comment by Renee — October 9, 2009 @ 4:57 pm
I have to agree that lack of decent medical care and understanding is pretty common across auto-immune diseases and diseases that aren’t well understood. Autism, EGIDs and some types of allergies, and chronic fatigue syndrome are all very poorly understood and very poorly treated as a result. It is true that they’re all diseases that mostly affect women or children, so that might be part of the problem. Also, I think many autoimmune diseases are relatively new diseases, so they haven’t been studied nearly as much. It is interesting that the one I can think of that has been well studied is AIDS, which at least at the beginning primarily affected men.
Comment by Vada — October 9, 2009 @ 5:30 pm
I do not have “lady part trouble” But, I do have a disease that is mostly specific to women, and have been told that I was crazy and it was all in my head. One doc told me there was nothing wrong with me, and that the debilitating headaches and blurred vision was psycosomatic. It wasn’t until I was almost blind in my left eye, and went to my Optometrist in a panic, that anything was done! I ended up in the hospital, had two spinal taps in two days, 2 MRI’s, a Venagram and a week later, a VP shunt placed in my head.
When we recieved the bill from the Nuerologist, that told me it was all in my head, my husband wrote a sweet little note telling him to shove it! (If he had diagnosed me properly and listened to me, I could have gone on meds, instead of having to have a shunt placed and shaving my head. Love my scars!!)
Now doctors are telling me I am too fat, and that because I am fat, that is why I have this disease. (A friend was diagnosed at almost the same time as I was, has lost 40 pounds, and just ended up in the hospital for a shunt, so I think that is a load of crap) I can’t seem to lose weight, no matter what I try, so now they want me to have surgery to do something about that!
For people that are so educated, they certainly have no clues about how to treat people. I would love to find a doctor that is more like my optometrist, who listened to me, and then was proactive and got me treated!
Comment by Kshaw — October 9, 2009 @ 5:35 pm
note: I wasn’t accusing all Physicians of Misogyny. It’s just that guy Freud who seems to me to have been a fairly odd duck whose influence has done as much harm as good, and more harm to women than men. There are a lot of great Drs. out there, and we’d neither be alive without ‘em.
I read a thing about Angioplasty a while back, T’was an Eureka moment, years after the procedure became commonplace, when someone figured out that maybe the reason this procedure was far less successful and far more dangerous to women than men, is that woman’s arteries are smaller and one size stents designed by men for men do not fit women. Well duh.
Hillary Clinton pushed through the Woman’s Health Initiative early in Bill Clinton’s administration. The FIRST TIME anyone in the medical profession did ANY serious large study of Woman’s health issues and that was just a few years ago.
We’ve got a lot of catching up to do. Perhaps (I have hopes), one lasting benefit of the Internet will prove to be that those physicians suffering from arrogance are not going to be able presume ignorance from patients anymore. Might make ‘em more humble, or even better, more amenable to treating patients as colleagues with informed and valuable insight into what they think might be wrong with them.
Comment by Betty Jo — October 9, 2009 @ 5:56 pm
I was in a near fatal car crash Jan 08 and sustained pretty serious injuries. Two spinal fractures, 4 broken ribs, collapsed lung … and a partridge in a pear tree. I still have weakness, fatigue and pain as well as stomach problems from a partially paralyzed digestive system. I finally just quit going to doctors altogether because it was too much to deal with their garbage. Every one of them tried to put me on anti-depressants depite the fact that I have no symptoms or history of depression. When they tried to prescribe anti-depressants I told them I would rather have a prescription for medical marijuana. What the hell … that would probably make me feel good too and would make just about as much sense. They said that was for cancer and I did not have cancer. I told them I didn’t have depression either but they were going to treat me for that. They didn’t appreciate me pointing that out.
They seem lazy and disinterested in what is causing my problems or how to fix it. I do believe women in general are treated like mildly retarded children by the medical community and overweight women are treated even worse. I was nearly killed in a car crash and most of the injuries I sustained are ignored or glossed over during appointments but I am *guaranteed* to be lectured about my weight.
Comment by Twisp — October 9, 2009 @ 5:56 pm
Reese, I LOVE this post! I too have gone through a lot o what you have (minus the child). I had a huge cyst on my left ovary (they found it abt 1.5 months before I got married…but not at the annual ob/gyn visit that I had done the previous month). Anyway, I had a laporotomy (cut me open) 4 days after I got married. They removed the left ovary in the process. It turned into a kind of emergency procedure so I went with the surgeon that I could get to do it. (No exaggeration here: I went to the ER on New Year’s Eve with extreme pain etc. I was laying on the table the next day and the doc walks in and told me that I wasn’t “writhing in pain” so he was not going to operate that day. I was SO frustrated and mad and hurting that I just started bawling). Anyway, after that surgery the endo didn’t go away and I went back to the dr who did the surgery and told him that I wasn’t healing well and explained all of the symptoms (yeah, the surgery put me into surgical menopaus - I was 25 and having hot flashes, night sweats etc.). The dr told me that he was going to refer me for a MH eval. Clearly, not a dr willing to listen to his patient. But I had such bad endo that I couldn’t function very well, and not just during my period. I would go to work and come home and lay down on my bed or in a bath until I went to work the next day. Anyway, I looked into all of the treatments for endo (saw the auto-immune stuff, looked at lupron - I am guessing that is what you did? ). My husband found some very innovative stuff that they are doing with endo. A totally different way of operating so that you are not having lap after lap after lap. I was fretting about the money but he convinced me that qualify of life is worth the money, even if we had to take out a loan for it. I flew to another state, had the surgery in July 2007, and consider that the 3rd best decision of my life (besides marrying my husband and serving a mission).
I have wondered why there is SO MUCH FREAKING MONEY poured into viagra and things that like that for men and so very little understood about endo. The analogy for how the majority of ob/gyn treat it is - these doctors are mowing the lawn and so they have to keep mowing (my cousin has had 16 laporoscopies). Or you can actually weed, and pull it out by its roots. I can function, run again, don’t have to plan my life around when I have my period. If anyone suffers from endo and wants to know more about the surgery that I had please let me know. I know that I sound like I’m advertising but I can’t tell you how much my quality of life has improved now that endo is not ever even discussed at my house anymore.
Comment by Amanda — October 9, 2009 @ 6:07 pm
I also stopped allowing myself to be weighed at the Dr. visits after about the 4th one in a month. It really bothered the nurse and the doctor tried to talk me into it but I did not capitulate to their demands. The nurse told me it was so they could accurately administer medications. I told her if they were going to give me any medication I would get on the scale if they had not taken my weight in the last 6 months.
With the brutal judgments, moral indictments, etc. women get about weight in our society I think it’s unduly burdonsom to make a woman get on a scale in front of somebody else without a darn good reason to do so.
Comment by Twisp — October 9, 2009 @ 6:21 pm
I have very rare periods (every 4-6 months, if I’m not on the pill), but very painful. I’ll have horrible cramping, vomiting, diarrhea throughout my period. I only ever had one doctor believe me about the severity of my periods. He put in an IUD (even though I had never had kids), which only made the cramping worse–instead of getting cramps just on my period, I had them all the time. I finally got the IUD removed and my current dr has me on Yaz to manage my periods. Mostly she just has me taking the pills straight through so I only get a period every three months or so. It’s helped a bit, but when I get my period, it’s pretty awful.
Comment by ayw — October 9, 2009 @ 6:41 pm
Reese, I got to your 38 and had to finally jot down my comment. You made me think of the book “Taking Charge of Your Fertility” on your issue with women’s health care. Basically the book is written by a woman saying that not all women are the same. She has a chapter on his is more fertile an obviously it is the male as he produces millions of sperm in a day and women produce one single egg that can only be inseminated one-two days out of the month. She goes on to relate the funniest version of a male birth control. I have to write it out exactly so that you can get the full affect, but man… wouldn’t it be nice!
Sorry it is so long, but I died laughing. I read it to my husband and first he thought it was for real, and then he didn’t think it was that funny. Ya! I thought, do you know how much sh^t we women deal with, side affects, lack of education on women’s girl parts, non listening asshole doctors that think they are God and know more about my body then me, living in my own body? No, he doesn’t know because he has never had a period with such pain that you want to vomit, or a baby, or a baby, or a period, or anything remotely close to being in a woman’s body (okay, not that my husband would know these things, but I got a little bent out of shape because they don’t listen).
AHHHHHHHHHHHH! Again, I’m so sorry and I seriously want to go slap someone now!
Comment by Sunshine — October 9, 2009 @ 6:53 pm
#52
I’m sure weighing you all the time is hospital/clinic policy and serves an important purpose. Perhaps doctors would take more women seriously (as they should!) if they didn’t protest basic procedures like a simple weighing. I would believe that the medical profession was more oblivious to our needs if this was 1809 and women didn’t account for almost a third of doctors and a majority of nurses.
Comment by Marlene — October 9, 2009 @ 7:20 pm
It’s way too many doctors when they’re dealing with anything even slightly out of the ordinary.
That was my thought as well. Doctors are great for linear problems, not always so much with more complex or other issues.
I have faced this w. my chronic health issues. I’m not convinced at all it’s a female issue.
My most amazing, caring doctor was actually a male OB/GYN, who was thorough way outside his speciality, so I think it just depends on the doc. (I have heard some stories about Kaiser, though….)
I’m sorry about all your stuff. It’s so hard to deal with a body that doesn’t work right and not be able to get it fixed.
Comment by m&m — October 9, 2009 @ 7:40 pm
I detest when professionals discredit women’s knowledge of their own bodies, and minds, even when presented with documented proof (as if personal testimony is just not enough).
I know a woman who had to go before a magistrate at age 22 because she wanted to get her tubes tied. The surgeon had refused unless she had some sort of court hearing and a judges signature stating that she clearly understood the ramifications of selective sterility. She finally pointed out to the judge that she was single, had two children- with different fathers- and she didn’t even know if the second father was going to stick around and support his kid, or leave like the first one did. She got her surgery. This is just 3 years ago in a state where a 13 year old girl can get an abortion without parental notice (let alone consent), a surgical procedure that is appropriate/necessary in some cases but is not without its own risks.
I requested a hysterectomy at age 26. I was dealing with various issues, had already decided to adopt, and wouldn’t even be trying to use the trouble causing organ anyway. I was told that until the problems became much worse, it would not happen. A decade later, I’m up for surgery. I was able to finally find a doctor who listened. He’s a jerk (really), but he listened; and he has given me some non-surgical and various surgical options. I have adenomyosis where the uterine lining has invaded the muscle tissue resulting in prolonged excessive bleeding and excruciating pain for up to two weeks of the month. It subsides with menopause, but since no one in my family in recent generations has reached a natural menopause (they’ve all had hysterectomies by age 33), I’m not sure I want to suffer for another decade or so and have the problem get even worse.
My husband is kind of squicky on body issues that involve blood and/or fluids and does his best to be supportive but not directly involved. That’s a whole lot better than acting as if it’s all in my head. I have an in-family adopted teenage daughter who has never had a cramp with her period. I sincerely hope that she really does escape the mess the rest of us have had to deal with.
Comment by JC — October 9, 2009 @ 7:43 pm
I have no idea if any of these thoughts will be of any use, but I thought I might post them in case someone finds the information useful to them.
I have had most of the same problems that all the commentors have had with doctors in general, but I did find that the problems seemed to intensify as my son needed help from doctors. It became pretty clear early on that we were in trouble. So what we did was look at the statistics for the local physicians that are listed at the local hospital. We chose a family nurse practitioner because she tended to rate as “friendly, but a little insecure”. We used that particular nurse practitioner until she moved to Africa and then used her replacement. The major benefit to using a nurse practitioner in our experience is that even is you have something complicated (developmental delay, auto immune disorder, etc…) the provider can deal with it. Both nurse practitioners that we used for my son and most recently for myself had no problem referring out, fighting insurances, and more but most of all they had no problem saying “I really am not sure what is going on, would be the best things to do, etc..”. The other benefit to this is that if one specialist says my son needs something, his parents think he needs it, but another specialist says that he doesn’t need it, she will cheerfully order it anyway and there is no problem with having to discuss or argue. Many times she has ordered something simply because I as a parent wanted it and thought it would be useful. I do not know if that experience is the most typical, but using nurse practitioners has been really useful. At least once a month a parent will suggest that with my son’s problems he should be “seeing a pediatrician or at least a doctor”. But the doctors really were not useful and I think that is an inherent part of doctor training in a sense. Doctors ‘practice’ medicine while everyone else in the medical world has to follow protocols or lists of ‘rules’. So it is OK for a doctor to prescribe pain killers for someone who complains of toe fungus or suggest better sleep to control a heart attack. While neither of the solutions will work to solve the problem, doctors have a lot more leeway to make decisions than other providers. In a way, this can cause a doctor to become great.. or just terrible and arrogant.
Another thing that helps to find providers is to get an ‘in’ at your local hospital or clinic. If you have a friend that works there she/he can give you inside information on the physicians that they work with or near. When I needed to get a referral to see if I needed surgery, I used my ‘in’ to check on surgeons and chose the surgeon that was well respected, but didn’t perform surgery as often as the others. That way I felt like I got a surgeon that was likely to recommend surgery only if they really felt that I needed it. Getting an ‘in’ doesn’t have to be too hard. Find out where the people in your ward or your friends work, what medical problems they have, who they see, etc… Support groups can help as people will mention who they use and what they think of their care.
I hope many one of these ideas will help someone.
Comment by Sonia — October 9, 2009 @ 7:51 pm
Have you tried seeing a gynecologist who doesn’t do OB work to handle your endo? That’s what I did after we adopted for the first time. It was a tremendous relief after 5 years on the IF train, not just to sit in a waiting room with NO pregnant women, but to have a doc who listened about menstrual pain and prescribed a meaningful painkiller, counseled me about managing my periods until menopause, had a serious talk with me about breast cancer, and so on. And … oh yeah … the doc was a woman.
(Now I see a female OB/GYN whom I like a little less - she asks me every time if I’ve ever been pregnant and what I use for birth control, DUH, it’s called a partner with no sperm and a luteal phase defect, lovely combo! But I’m just there for annual exams so it’s no biggie.)
Comment by Ana — October 9, 2009 @ 8:56 pm
i went to doctors for two years for severe abdominal pain. I was convinced I had ovarian cysts; every single doctor I saw (5?) just told me that I needed to be on meds for anxiety. Of course. i was finally vindicated when a CAT scan revealed said cysts, as well as Crohn’s disease, the symptoms of which I had been told for the previous 7 years stemmed from…anxiety.
I simply cannot imagine that if my husband went to the doctor complaining of lower abdominal pain, the very first response would be Zoloft.
Comment by Zillah — October 9, 2009 @ 10:09 pm
Sunshine: At first, I thought that was real as well!
I’ve had epididymitis, which scared me good the first time I had it, since the symptoms of it match testicular cancer. Then, I come to find out:
Something they did not mention BEFORE my vasectomy! So, I hope it does not come back. I can sympathize with women who have reproductive disorders.
I have heard of some more progressive Med Schools having women perform a rough, quick, & quiet (non interactive) testicular exam on men attending there, so they know what it’s like for women getting examined.
Where’s Janet? I know she has some experiences in this department as well.
That does happen, but I still can’t believe that helpful info would be ignored.
Comment by Mike H. — October 9, 2009 @ 10:16 pm
I’m just going to add one little thing or I’ll have so much rage you won’t be able to stop my talking… but the Mirena (NOT the copper IUD) helped my endometriosis quite a bit. I still have ovarian cysts, but I haven’t had a period in two years, and those were half the problem. It doesn’t help everyone, but it’s been a real godsend because I haven’t had to deal with any *&^%$ doctors for awhile.
Comment by Kerry — October 9, 2009 @ 10:20 pm
There’s another fMh type who put in a plug for that product as well (on another blog), but I’ll let her identify herself. I though some years all IUD’s were banned after problems were found with them.
Comment by Mike H. — October 9, 2009 @ 10:42 pm
#45 That is because injuries from spousal abuse can be considered a pre-existing condition.
Comment by StarieNite — October 9, 2009 @ 11:10 pm
Elina (#30) — in my opinion, this post and the discussion it’s generated are a very tangible answer to those prayers.
Comment by Libby — October 9, 2009 @ 11:43 pm
Come to Cleveland! An unexpected and unwelcome work transfer to Cleveland this summer has resulted in the most amazing blessing–the Cleveland Clinic and University Hospital System. The specialists and coordination/communication between specialities seriously blows my mind. I’ve never experienced anything like it. My OB, maternal-fetal specialist, geneticists and women’s health specialists have been amazing…
Comment by Bree — October 10, 2009 @ 12:21 am
Hon, you need to get yourself a pain specialist. If your area does not have a chronic pain clinic, they can usually be found in spine centers. I have paid out of pocket for one for two years (she is very nice and only charges me $60 per visit, once per month.)
I have had chronic abdominal pain for two years, and have been fortunate in that even if they often scoff at the cause, the doctors never doubt my pain. I showed up in the ER on a weekly basis with escalating pain episodes until they sent me to a pain specialist. She is the one who confirmed that 1. I wasn’t crazy, and 2. she’d keep me as comfortable as she could until they (the g.i. specialists) could figure this thing out.
Two years later, I have only gone to the ER once in the last 6 months even with my pain, but I no longer panic as the episode begins, because someone believes me, and has armed me with hefty drugs at home (some are long-release for everyday use, but some she gave me for emergencies, so I don’t have to panic, feel pain, and feel helpless any more.)
Comment by mel — October 10, 2009 @ 1:32 am
I have to go to four different specialists for all the different symptoms instead of one doctor who can treat the entire disease.
I call this the fragmentation of specialization. Can be a good thing, but often esp w/ auto-immune type stuff, it’s a PAIN.
Oh, how I can empathize.
Again, I’m so sorry for what you are going through.
Comment by m&m — October 10, 2009 @ 1:51 am
#45:
Is this true? Can anyone cite a source for this? Would like to resarch it but don’t know where to even start.
#63:
My understanding was that with other pre-existing conditions, that insurance companies can only block coverage for 6 months. At least for employer-paid coverage. My agent says that individually purchased coverage can exclude pregnancy from coverage, and some other stuff that employer-paid coverage cannot lawfully exclude.
Comment by Christian — October 10, 2009 @ 2:40 am
Did my comment get lost in moderation?
Comment by Sonia — October 10, 2009 @ 5:25 am
I’m sorry. I’m getting to the point this year where I feel dumb talking to any doctor, as if I’m just begging or making things up, though I’m not, and I’m actually surprised that no one has referred me to a psychiatrist yet.
Comment by Michelle Glauser — October 10, 2009 @ 6:32 am
I’ve had endometriosis my whole life so I understand completely what you’re going through. I’d had the disease since I was 16 but didn’t know about it until I was 21, when a good friend of mine just happened to find a pamphlet from the Endometriosis Association about it for me. i wasn’t officially diagnosed until i was 25 and when I had my first laparascopy and the idiot doctor said that I had endo, I snapped, “Told you so!” I’ve had five other surgeries and was lucky to find good doctors wherever I moved. Eventually, I had one ovary removed and other additional “clean-up” surgeries. I was somehow able to have two kids thanks to Heavenly Father’s blessing.
Have you considered joining the Endometriosis Association? They can help you find a support chapter in your area. These fellow sufferers then can relate their experiences to you and give you a heads up on doctors who are compassionate.
National doctors I know of who are experts in this field of treating endometriosis are the Nezhat brothers in Atlanta and Dr. David Redwine in Bend, Oregon.
Hope this helps you.
Comment by belledame2 — October 10, 2009 @ 8:13 am
@62
IUDs have a string attached to the base that is used in insertion, removal, and checking proper placement. In early IUDs, that string was made of a cotton-based material that served as a conduit for bacteria into the uterus, a normally sterile environment, resulting in infection. IUDs now have strings made from synthetics, and are much, much safer.
The device you are probably thinking of is the Dalkon Shield, which was pulled off the market in the 1970s for faulty design. This was also in an era before routine STD screening for women receiving an intra-uterine device, making it more likely that bacteria could be introduced to the uterine environment.
An IUD is a great option for some women, and it is extremely effective. I’ve heard it described by several satisfied users as “reversible sterilization” because of it’s convenience and efficacy, and for women who choose to pursue pregnancy while using an IUD, it can be removed in one doctor’s visit. As with all contraception there are some risks, and but if you are considering an IUD and your physician agrees that you are a good candidate, it can be a good solution for your family planning needs.
Comment by Future-Doctor Jane — October 10, 2009 @ 8:31 am
Not all of 69 is a quote, just the first line…
Comment by Future-Doctor Jane — October 10, 2009 @ 8:33 am
I loved my IUD until I realized that it was what was causing my sickness. (This was after the shunt placement) After I had it removed, I immediatly stopped having headaches and nausea, and my energy has returned. Now I am just dealing with the after effects of the Shunt. Not fun, but definatly better then going blind.
Comment by Kshaw — October 10, 2009 @ 9:48 am
#65
http://www.miamiherald.com/news/politics/AP/story/1266054.html
You are right in regards to employer provided healthcare.
But when purchasing your own healthcare, it is an entirely different animal. In some states, being a battered spouse, or any other pre-existing condition is enough to deny coverage altogether.
Comment by StarieNite — October 10, 2009 @ 10:20 am
Instead of the leaders of the LDS Church being criticized, Doctors are the target.
It is amazing that people expect healthcare to be free yet they expect perfection from physicians. However, if there is a mistake, the doctor gets sued.
Next time there is an emergency, think about those “*&^%$” doctors. (My brothers are “*&^%$” specialists.) You do know that doctors enjoy causing patients pain and hurt. I think there is a class on the subject during the second year of medical studies.
Reese is only giving her side of the story. There are atleast 3 physicians who feel differently than she does. She may be right as there are stories of people who have been misdiagnosed. Conversely, she may be an abuser of pills and have deeper problems. If she is the latter, we can have another blog about those “*&^%$” doctors who cannot detect obvious abusers. It will be their fault that they fed her addictions.
Comment by .... — October 10, 2009 @ 2:11 pm
Asthma is another apparent “uninsurable” condition in this country. I’ve been dealing with applying for health insurance in the last several months, and have been denied because of my asthma–and even more surprisingly, because of my hypothyroidism, which only costs me about $25 a month for *generic* medicine without any sort of insurance. Who do they think they are?
The whole system is messed up. It’s the people who need health care the most who are denied the ability to get health insurance, and I’m sorry, but “personal responsibility” has nothing to do with being unable to afford $750 a month in asthma prescriptions.
Comment by stacer — October 10, 2009 @ 2:17 pm
65 - I hadn’t thought about it, but maybe you’re right! Thanks!
Comment by Elina — October 10, 2009 @ 2:18 pm
When you’re paying $1100 a month for health care, it had better be good.
And, there’s a difference between a minor mistake & neglecting the patient’s symptoms!
Comment by Mike H. — October 10, 2009 @ 3:21 pm
…. - Really unbelievable. Since your first appearance in our lovely website home, you have done all you could to spread unkindness and insults. Now you accuse me of being a liar and addict to prescription drugs. I can take a joke even better than the next girl, but your behavior is unconscionable.
If you would like to make a reasonable defense of doctors, that would add a lot to the conversation. Not every doctor I’ve had has been awful, there are certainly great healers that deserve every bit of praise the world has to give. But I’m not talking about those doctors, I’m talking about the doctors that stopped caring, if they ever did. If you have some insight into the pressures the doctors face, that would be great to hear about. It would probably even help those of us who have struggled with care to be better partners to our doctors in getting the best results. Believe it or not, there are permas who work in the medical profession, or are married to someone who does. There is no agenda here.
But to come in and just say I’m making it all up to feed my habit? There is no purpose to that other than to hurt my feelings or start an argument. One more outburst from you and you are banned.
Comment by Reese Dixon — October 10, 2009 @ 5:03 pm
Bravo Reese… I would like to add more, but all I can think of is 1) … is probably a he/male/man and has never had anyone look up into their private parts, stick a very cold something or other in there, leave it in there and walk out of the room and leave the door open will that dumb ass doctor attends to something more important than my genitalia. and 2) he’s probably a man!
But… I guess I could be wrong as there are many dumb women out there too, that also say, get a new doctor, adopt a baby, there’s more fish in the sea, isn’t the money worth it?
I guess my hormones have gotten the better of me yet again! (mumbles words that aren’t really appropriate to say online)
Comment by Sunshine — October 10, 2009 @ 7:04 pm
So to um…. go back to the original post– but er, anyway-
I don’t think the problem is limited to the United States; even with socialized healthcare where I live, to go to a specialist (i.e. ObGyn) it can be quite expensive for a condition like endo. I have a somewhat similar condition and have spent over $6,000 in medcial appointments alone in the last year- and that was with the government rebate! But money aside–
I wonder if doctors have a) power trips or b) paranoia or c) are feeling the financial pinch:
a) Power trips in that they don’t want to trust another doctor’s work, and if for some freak reason you have a specifically rabid case, they want the attention for “curing you”- i.e. write it up in a medical journal.
b) Paranoia- so IF they trusted another doctor’s diagnosis, but that previous diagnosis was wrong (it the condition has progressed to a worse state)- and they screw up- well, the patient will sue them. So- CYA.
c) Get paid for doing unnecessary procedures. I.e. a type of insurance fraud.
That being said, we cannot read what pain receptors another person is feeling. I have been in so much pain from the aches of the FLU (no kidding) that I was given the same pain meds as someone in labour. It finally helped me rest- and yes, they did all of the background checks to make sure I wasn’t just jonzing for a fix. Some people have sensitive bodies- and with women, usually hormones -for me- make me more sensitive to smells, meds, and even pain.
What it all boils down to is building a relationship with a doctor who you trust- and that is hard if you move around. At the moment, I drive 17 hours to go to my ObGyn. (over 2 days). It costs a lot of time and money, but the guy knows me, listens to me and listens to my body. Any way you can go back to the doctor you were seeing for Atticus?
Comment by spunky — October 10, 2009 @ 7:16 pm
#77- Considering that Reese’s story is pretty standard for endometriosis patients (check out the endometriosis support groups), it is hard for me to just blow her off as a druggie. That and having endometriosis, I know a little bit about the pain- and saying to control it with tylenol is a bit like telling someone with migraine to take some baby ibuprofen and then not getting it when they still lie there in agony. I felt so vindicated when I went to a doctor and mentioned my endometriosis and the dr whipped out her prescription pad and said what do you need?
Comment by Tami — October 10, 2009 @ 7:17 pm
. . . .’s comment doesn’t deserve a second glance. Reese, I think his purpose is to discredit you - with an unsubtantiated smear.
Comment by Stephanie — October 10, 2009 @ 8:50 pm
3 !#$^@*^% physicians can’t be wrong
Comment by britt — October 10, 2009 @ 9:36 pm
Hey, are we calling ob/gyns @#$^#$@ physicians now? I mean, I guess that part of their job deals with that, but isn’t that a bit limiting for them?
Comment by Beth — October 10, 2009 @ 9:58 pm
Stephanie - Isn’t Reese smearing the doctors who service her? Doctors are professionals who do take pride in their work. Her claims are unsubstantiated since she has been unable to find multiple Doctors who agree with her self-diagnosis.
Mike H - Neglect? Hasn’t Reese pleaded her case with several Doctors? She just isn’t getting the treatment that she is demanding. Who are those Doctors anyway? They only went to school for X number of years, interned, etc… while Reese has tons of internet surfacing experiencing. (Her research may assist, but she does not prescribe the treatment.)
Sunshine - Any man who has played a sport has been examined. The old missionary medical exam use to require a rectal exam. As men get older, they do get exams that require instruments to be inserted.
Reese - Your self chosen Doctors are the ones who do not believe you. I am neutral as I am not privy to the details. I am just trying to add balance since your Doctors are not represented in this blog. There must be some medical reasoning for them to come to the same conclusion. Are they right? Maybe not, but Vegas would put better odds on them.
I have a Autistic child who is self injurious. When I met with my child’s Psychiatrist for the first time, I told him that I think that ECT is the proper treatment but I understand that this is a treatment of last resort. As we progress thru treatments, I ask questions and challenge him. I have given him articles to read. He has recommended certain drugs, which I have countered with other drugs within the same family. I have a second Psychiatrist who reviews the work of the primary as it gives me some peace of mind. We are partners with a shared goal; but, he is the one who prescribes treatment.
Before I chose him, I did my research. I consulted with some of the Doctors in my community while I researched State records, etc…
Am I happy with the results? No. I want a fix. I wish there were a set of exact instructions. Am I happy with the approach and the execution of the approach? Yes. Will this lead to a fix or some sort of reduction in my child’s self-injurious behavior? I don’t know?
Today, people expect Doctors to give them a pill to fix the problem or atleast mask it. People still die and have pain.
We are fortunate to live in this age. In the old days, you took an Aspirin or got a shot of penicillin and that was it. Today, there are many treatment options. Do they cost money? Of course. Both public and private dollars have been used to find cures and both parties should benefit from their investments. You want cheap healthcare? You can always go back to the old days of medicine where there were few options. Maybe you can find a doctor who will take a pig for his services?
Comment by .... — October 10, 2009 @ 10:40 pm
…., your comment is extremely patronizing to both Reese and all women.
Comment by Stephanie — October 10, 2009 @ 10:57 pm
88- Reese was not self diagnosed. She was diagnosed by a surgeon cutting her stomach open and inserting a camera into her body. The camera then took photographs of the damaged area, documenting her claim. These notes are there, in her records. At that point, if a doctor is ignoring her, that is a problem with the doctor, not her. Imagine if your next several doctors not only would not do as you wished for your son, but denied there was anything wrong with him, told you the problems were just in your head. And frankly, Reese can prove she has endometriosis far more conclusively then you can prove your son has autism. Unfortunately, for numerous reasons, doctors seem willing to ignore photographic evidence and instead tell women that they are crazy. And sadly, her case is not isolated.
Comment by Tami — October 10, 2009 @ 11:20 pm
. . . . , and anyone else inclined to think Reese is just in denial:
It might help to understand a bit more of perhaps WHY the doctors are so skeptical of Reese’s claims, and thus why she is so frustrated. I add this just because I know of one helpful vignette and because I come at it from both the patient and the doctor side, since our fandamily has both.
When endo. spread really really far afield, it becomes harder and harder for clinicians to believe–even the good ones. They thus become more reticent to test and turf to shrinks. If you ever watch those nauseating medical dramas, you may have heard the expression ” when you hear hooves, don’t expect zebras. Expect horses.” (aka, common rather than uncommon explanations.)
Reese sounds as though she has “Zebra” endometriosis, and it’s pretty common for someone with that variety to go through many doctors until they finally get proper treatment. When DH was in medical school there was a patient like Reese, who had horrible pain IN HER CHEST every time she got her period. She insisted it was endo, the doctors hemmed and hawed, yadda yadda yadda, insulting of patient, yadda yadda. After a great deal of time and agony for the patient, somebody did a lung biopsy . . . which came back positive for endometriosis ON THE LUNGS. Gigantic zebra. That guck can really migrate, but the doctors didn’t want to believe it. Thought it was all in her head. They were wrong. As all doctors are sometimes.
Every once in a while the patient is right about the zebra, and the doctors have to eat crow. Doctors are, after all, fallible and fairly narrowly trained (a fact which my MD/PhD husband continually reminds me). As my own specialist admitted to me once, “Hey, I have to keep abreast of about 200 diseases in my specialty whereas you really only keep abreast of your own. To be honest, you probably know a lot more about your disease than I do. I’d be a fool not to listen to you.” That’s a good doctor. Like ” . . . .”’s clinicians who see him as a partner in care for his son, so should Reese’s. If they ignore her insight, they are arrogant fools.
A doctor’s or a blog reader’s assumtion that she’s a drug seeker says a lot more about the person making the assumption that it does about Reese.
Comment by Janet — October 10, 2009 @ 11:43 pm
….What about this? I had my annual exam done in October- nothing concerning (besides being told I prob had endo but no scope done so no diagnosis). Started having pains in November, couldn’t get back into my gyn to find out what was going on so had a ct scan done, discovered a large cyst that had to be removed. Got a new referral for an ob/gyn (b/c I couldn’t get through to my old one), had the surgery etc. Wasn’t pleased with the surgeon or the results. Went back to my original ob/gyn for a 2nd opinion…This is how that appt went: the doc walks in, doesn’t ask me a freaking question about my condition but lectures me about him being a 2nd opinion. He told me that he should have been the one to do the surgery, that there is a “medical code of ethics” and that I should have gone to him for the surgery. I explained that I tried getting in touch with him when I started having symptoms and I was told that it was normal and to not worry about it. He told me that he didn’t have any record of that phone call in my notes and that he should have been the one to do the surgery. Obviously, I wasn’t going to have that creep touch me and I and my husband walked out of there immediately. He later called and apologized and told me that “doctors have feelings too.”
Tell me that that is not a story of egotism, pride, arrogance etc etc. I guess I thought that as a doc, he would try to help me. But apparently, if I stepped on his ego, or didn’t pad his checkbook enough, his help was conditional….
Comment by Amanda — October 10, 2009 @ 11:56 pm
… I can’t believe for a moment that your argument is sincere. How can you claim neutrality when you have the facts so dang wrong? Did you even read my post? Where on earth did you get that I’m self diagnosed or that all of my doctors disagree with me?
Did you read the part about how I have photographic evidence?
I expressed that I’m open to hearing things from a Dr’s perspective, but that’s not what you’re offering. I have named zero names or practices and yet you say I’m smearing them by sharing a few bad experiences and paint me as a fraud.
If you shared a legitimate email address, I’d take this conversation offline, but since that’s a fake I have to tell you publicly - you’re banned.
Everybody else - if you’re unfamiliar with “….” this might seem excessive, but rest assured they’ve been given many many many chances and has a long history of this antagonistic behavior.
Comment by Reese Dixon — October 10, 2009 @ 11:57 pm
It’s about high time …. was banned!
Comment by Risa — October 11, 2009 @ 12:17 am
Reese — your doctor actually called and said “doctors have feelings too” because you had someone else perform surgery when he wouldn’t get back to you? Snort! It’s not like you sent him a nasty letter! Oh, ego. That story is both awful and funny, both. Sorry the surgery didn’t go well with the other doctor either, though. Ugh.
Comment by Janet — October 11, 2009 @ 12:28 am
Spunky: Sometimes it’s padding the bill, sometimes it’s Cover Your @__!
Janet: Nice to see you back.
While we’re at this general subject, a story of a woman I worked with: Her problem started when she carried her son, who had fell asleep in the car, into her house. She then started to cramp & bleed, not pregnant, not Menses. It went away, but came back on & off, then she was always flowing all but a couple of days each month! She saw her Gyno, & he told her it’s typical for women to cramp & bleed more than they might be used to.
She confided in me, & while I’m not a Gyno, I told her that was not normal at all. She switched to a woman Gyno, who tried hormones, but that failed. I suggested the “evil”, phallic transvaginal ultrasound (yes, thinking of your comments at fMh, Janet), but that didn’t see it, either. So, the Gyno used an optical probe & that found the growth, and took a biopsy. Thankfully, it was benign from the biopsy, but she had to come back in for a D&C. Not normal, but the first Gyno didn’t want to look into it.
But, what if it had been malignant?
That would be grounds for malpractice. So, some, but certainly not all, misdiagnoses & malpractice are self inflicted by doctors. One sister in our ward started hemorrhaging, I’m not sure if she was past menopause or not at the time, but she went right in to be seen, & it was ovarian cancer, & it was caught in time. I hate to think what could have happened if she had my coworker’s Gyno!
Good.
Comment by Mike H. — October 11, 2009 @ 12:53 am
Just a couple quick side notes to some of the comments. I “kind of” work in the medical field and not all the research out there is for male sexual dysfunction and other male problems.
Viagra and Rogaine were both discovered by accident. Both were originally blood pressure pills that didn’t work but had specific side effects. They were redeveloped to serve those side effects to what we have today.
There was a female sexual dysfunction drug out there to come to market (bremelanotide) in a nasal spray last year but they couldn’t make the functional dose to higher side effects ratio work out well enough and it didn’t make late stage developement.
If your disease is a “zebra” (I like that analogy) rather than a horse, university doctors is always a good idea.
Comment by NW Member — October 11, 2009 @ 2:38 am
I think so much of the confusion in how this disease is treated is in how it manifests in SO many different symptoms. I was officially diagnosed with endo after a surgery because I couldn’t get pregnant. But even after all the surgeries and drug treatments, my pain is not taken seriously and all the other symptoms - poor stamina, fatigue, asthma, aching joints, weak immune system - are completely ignored.
I think this disease is complex and definitely harder to work with, so that makes sense that all the other symptoms would be harder to address. But I still can’t understand why gynos are so frequently skeptical of pain, even after proof that this condition - understood to be painful - exists. I think we probably could have a whole different discussion about how the war on drugs affects doctors and what that means for the rest of us.
Comment by Reese Dixon — October 11, 2009 @ 10:58 am
I was diagnosed with endo 13 years ago and have been on hormone therapy, had 3 laparoscopes and 3 kids out of 5 pregnancies. I’ve had good doctors and bad but it’s always difficult being heard. I’ve found the best thing for me though has been to figure it all out on my own. My endo was getting so bad after having my last child 3 years ago and I did not want to start another round of synthetic hormones or surgery. I googled natural remedies for endo and found the best thing- the anti-inflammation diet. It’s tough to do, I can only follow it 80% of the time but it’s enough to make a huge difference in how I feel during the month other than the week of my period. I started it cold turkey and there was an immediate difference.
Screw the doctors and do your own research! They have NO IDEA the pain we are in so it’s up to us to take our healing into our own hands. I will never have surgery or do hormone therapy again!
Comment by Cher — October 11, 2009 @ 10:50 pm
This is an interesting discussion. I work in healthcare and interact with a variety of doctors all the time. Because the doctors refer patients to me (thus ensuring job security) even the ones I’m not so fond of I make sure I’m nice to. But as many have said here, doctors are human and come in all shapes, sizes, and personalities. I’ve been fortunate that most of the doctors I work with are great.
Anyway…what I really wanted to say is something that another comment already alluded to….research specific to women and specific medical conditions is very new. The National Institute of Health has only had a research area dedicated to women’s health for a short period of time….maybe 10 to 15 years. This means a lot of the research and treatments are not specific to treating women and is probably part of the reason why a lot of doctors treat their male and female patients exactly the same even though the newest research indicates otherwise. That does not excuse those who will not listen to their patients and take them seriously. I have been very blessed to have my last 2 doctors be very good at listening and taking the time as well as staying as current as possible on new research. And while doctors do spend a lot of time in school and do have specialized training its like Janet said…they can’t know everything about every disease and in this day and age we as patients have so much access to information (not just internet info but legitimate access to the same research doctors do) that we are often more informed to ask the right questions and insist on certain tests being done and the ability to find those who will listen to us….and we do pay the doctors to help us so they really should listen to us.
Comment by Darcy — October 12, 2009 @ 12:27 am
You should really call the people below. They have had great success in treating and often curing such conditions, and there rates are extremely affordable.
Windrose Naturopathic Clinic
(509) 327-5143
Spokane, Wa
Comment by anon — October 12, 2009 @ 10:02 am
Reese: For what it’s worth, I found this:
http://www.sciencedaily.com/releases/2009/07/090707201114.htm
Comment by Mike H. — October 12, 2009 @ 10:44 am
I have endometriosis and it’s horrible. The pain is as bad, if not worse, than childbirth. I have had doctors dismiss me and my pain (it’s normal - umm excuse me?!) and others that have not.
I finally found a specialist here in los angeles. He stopped delivering babies so he could focus on endometriosis. He put me on the pill continuously so that I did not have my period for a long time. It was LIFE CHANGING. My scar tissue cleared up, my pain went away and I felt like a “normal” person finally!!
if you can - go see Dr. Charles Dubin. He was extremely helpful in helping me find a way to deal with it AND he always believed me and what I was saying. It was a very healing experience in every sense of the word.
Hope this helps.
Comment by katie — October 12, 2009 @ 9:58 pm
One of the problems you have is being one of a vast sea of people who are seeking pain medication.
The other is that you have resisted the easy diagnostic and temporary step of being “on birth control pills to manage the pain.”
I realize your goal is fertility, but as katie notes, the treatment he suggested helps the pain, clears up the scar tissue and prepares you for fertility. If you don’t listen to a doctor who thinks that they are trying to reach your goal in the normal method, in a situation where fertility is not coming quickly or easily for you, and you ask for pain meds as a part of your response, prepare to have the doctor think you are really after pain medication and not fertility or treatment.
The doctor who got himself banned (who posted in comment 77) really typifies the ingrained attitude of doctors.
(a) if other doctors thought something, they are more likely right than the patient.
(b) distrust anyone who asks for pain medication.
(c) deny pain medication whenever possible (or why infants used to be operated on without anesthesia).
Is that fair or reasonable? No, but doctors have about a twenty second attention span according to a number of studies.
Post 91 really caught where that leads.
/Sigh.
Wish you the best.
Comment by Stephen M (Ethesis) — October 13, 2009 @ 8:26 am
I had an MTC companion who had to take to her bed during her period. I have bad cramps, but they’re controllable with ibuprophen, but I could not understand why anyone would tolerate such agony for 5 days.
But clearly, this thread demonstrates that since women are going to be treated as hysterical, we should switch from the Latin uterus to the Greek hystera for our lady parts, just so there’s no confusion about what’s causing our silly crazy lady issues.
Comment by marianne — October 13, 2009 @ 7:01 pm
Oops, in editing I deleted WHY my MTC companion willingly suffered through her terrible issues–because the nice BYU doctors told her nothing was wrong with her and suggested that instead of going on a mission she should get married and have a baby as quickly as possible because that would probably clear up the problem.
Comment by marianne — October 13, 2009 @ 7:03 pm
106: Seriously? She got diagnosed with greensickness? (If the link doesn’t work, greensickness - lethargy in adolescent girls, later discovered to be anemia - was thought to be cured by sexual activity. It gets mentioned a couple of times in Shakespeare, Romeo and Juliet for one, and I think Pericles, Prince of Tyre, but I could be wrong. Basically, the idea is that most of the health problems of adolescent girls can be solved by sex.)
I thought that went out with . . . humoral medicine? Burning witches? Curing scrofula by getting the king to touch it?
Comment by Beth — October 13, 2009 @ 9:14 pm
No, but a lot of m.d.s still believe that endometriosis type problems can be cured by pregnancy. Some women have theirs cleared up, temporarily, when they are pregnant. So it isn’t sex they are advocating, but pregnancy.
Obviously that doesn’t work for many, but it remains a common belief.
Whenever someone says a discipline is “art, not science” they are saying that it is “religion, not engineering” and that you should have faith, not logic as the way you relate to the practitioner.
Just for perspective.
Comment by Stephen M (Ethesis) — October 14, 2009 @ 7:31 am
I am going through this right now. I’ve been on the pill for possible endo since grad school. Same symptoms as you Reese–incredible pain, cramps, nausea and very heavy bleeding that last for 5-10 days and irregular periods. The pill did make my periods regular and far less painful.
My DH and I have been trying unsuccessfully to conceive for several years. Last spring I started bleeding uncontrollably. My obgyn told me to wait and see if it stopped and like a fool I did. It did, regular periods resumed, and HE said all was well. Nothing more was done.
This summer the continous and heavy bleeding started up again and yet again he waited to see if it would stop by itself. Finally 4 weeks into non-stop heavy bleeding my DH stormed into my obgyn’s office and said something had to be done. Doc finally took notice, performed an edobio and hysteroscopy and referred me to a specialist. They found large polyps and fibroids. My doc told me that I was simply going into early meno and but the specialist would remove the fibroids w/out damaging my uterus since I am (delusionally) trying to conceive.
My hormone tests have all come back at healthy levels and I am clearly ovulating but the specialist insists that my brain and my uterus might simply not be “speaking to each other”.
I am in my 30s and feel like I have been put out to pasture by men who are convinced that all our girl parts dry up and we are essentially dead to a natural reproductive life past 25 yrs.
There are few women obgyns here and most obgyn senior partners are men.
I have great health insurance (that I’ve never needed to tap before). But I am not sure I will be well under this kind of care.
Thanks for this post and thanks for letting me vent.
Comment by biologically dead at 30? — October 14, 2009 @ 2:57 pm
My mother and I both have endo and neither one of us have had issues getting treatment, bcps, pain meds, or surgeries. So strange…must be the area you live in! Maybe we’re in a more progressive area??? :/
Comment by anon — October 16, 2009 @ 1:12 am
I had the traditional laserscopic surgery in the mid 90s. It just grew back within a year and I was right back where I started. You should look at this guy: http://www.endometriosistreatment.org/ who has been doing an alternative surgery since the 70s where he instead of blasting it with lasers (which doesn’t always go deep enough on growths to ensure they’ve been stopped,), he actually does excision of the growths with tiny scissors (still laparascopic). This allows him to remove the tissue and do bioposies to be certain there isn’t a secondary issue and he claims that removing the growths in this way prevents regrowth. He found that many of the little blistery looking growths that med school taught him to ignore as not being endometriosis growths, were in fact, when he biopsied them, legitimate endometrial growths. The laparascopic surgery that uses lasers not only leaves behind many of the growths that they don’t believe are troublesome, but it also is pretty ineffective at actually fully burning off the ones that they do target. I traveled to Bend, OR specifically for this treatment and I was not alone. People from all over the world go there to get resolution to these issues. His success rates with his approach should embarrass the rest of the medical community that practices the laserscopic approach and ignores many growths that should be removed. I went there in 2005 and am very glad I did. I had to pay more out of pocket since it wasn’t in my network and put a lot of the cost on credit cards, but it was worth it to get no suffer and have a compromised life anymore, not to mention the ongoing cost of an ineffectively cured disease (which is what I was up against before I found him). Hope this helps.
Comment by me — October 16, 2009 @ 2:23 pm
This topic reminded me of an exchange between two characters from a British comedy taking place in a retirement home, Waiting for God. Dianna Trent, a spectacularly cranky woman of a certain age breaks her hip and her friend Tom pays a visit in hospital:
Diana: “…Quacks, useless for women. Before puberty they tell you it will all be cured by puberty. Then later, it’ll be okay when you’ve had a baby. And then, oh you’re of a certain age, you’ll be better after the change. Now it’s well, you’ve got to expect these things at your age. When is there a stage in a woman’s life where she’ll be cured of her ills without passing through some male-defined age barrier?”
Tom: “I don’t know…”
Dianna: “When she’s dead. Unless she’s a Buddhist, in which case they’ll say don’t worry, you’ll be better in the next life”
Comment by Moniker Challenged — October 21, 2009 @ 7:09 pm
I know this thread is probably dead, but I have a question for you medically knowledgable types out there: In July, I saw Dr. X, a family practice doc, re: some out-of-balance hormonal stuff. He prescribed 3 months of birth control. He also advocated getting a pap, but I couldn’t right then due to my menstrual period beginning. He told me to schedule one. Three months go by, I’m out of bc, so I call for a refill. A nurse returns my call, says Dr. X is out, Dr. Y is covering. Nurse says Dr. Y denied my bc refill until I get my pap done. I asked nurse about the rationale, the connection between the two. She says there is none, just that I need to get my pap.
I get that I need a pap, but I also get that Dr. Y (maybe Dr. X, too?) is a titch controlling and treating me like a child. You medical folks out there, is this controlling of patients normal? Is it ethical?
Thanks!
Comment by anon4now — October 29, 2009 @ 6:19 pm
I haven’t read through any of the comments but had to share my experience with endometriosis. I never did undergo a laparoscopy, I was fortunate to finally find a doctor who was not only willing do diagnose on an empirical basis but who was interested in doing as much as possible to preserve my fertility (I was 20). I first started having symptoms at age 14 & by 16 it was debilitating, I would miss 2-3 days of school many months. Worst of all, it was “just puberty hormones, they’ll balance out after a while”. Through internet searching after discussions with some female coworkers I came to the conclusion that it was most likely endo but ran in to the whole issue of docs trying to say it was irritable bowel or just in my head. Vicodin didn’t touch the pain, Celebrex worked & I was able to get an off-label prescription but I wanted a solution (not the put you on the pill to balance your hormones- the pill may temporarily mask symptoms but usually will make the condition worse) . So I finally found the right OB & started a 6 month Lupron injection therapy. 3 months in I started having terrible side effects & stopped treatment, it took a year for my hormones to recover & my body to function normally again. In the meantime a coworker who had an inoperable endo lesion recommended a book to me which I now recommend to anyone suffering from endo (PCOS too as there are a lot of similarities & the 2 often go hand in hand), Endometriosis: A key to healing through nutrition. By following the dietary guidelines in this book (different foods will be triggers & depending on your symptoms various supplements will help heal your body) I was able to figure out my triggers & start a supplement regiment that put all of my symptoms in remission. I have been blessed that I have not had a return of symptoms since having children & despite slacking on dietary restrictions.
Re: Anonymous & controlling docs… that is definitely unethical practice at the very least, get a new doc if you can.
Comment by Mell Fraze — December 7, 2009 @ 6:01 pm