Hugs, Leah. That sounds terrible. Sorry that you had to go (and are still going through!) so much. Meh.
I find it a horrendous double standard that a cosmetic surgeon would happily suck fat out your gut, slice your boobs up, implant buttfat in to your face, but a medical doctor won’t remove a womb for a medical reason.
(NB When I say ‘you’, I mean ‘one’)
Where do you stand legally? Is there a a legal angle you could take? Anyone willing to champion your cause?
And otherwise, much sympathy for your pain, I wish you a resolution whatever it is.
Wow, I don’t even know what to say. 
All I can do is offer my heartfelt condolences and my outrage at the treatment you’ve received from your doctors. They’re your damn organs, not theirs! If they’re causing you so much pain and you want 'em gone, that should be the end of the discussion. Keep your head up, though: you’ve endured a lot for a long time, but if you persevere, I’m sure you’ll come out on top in the end.
That is horrible, both your pain and the way you’ve been treated by your doctors. They should be ashamed of themselves. I’m so sorry. I don’t have any useful advice, I just really hope things get better for you soon.
I do second the doc recommendation through endo support sites and psychologist suggestions. That could make the difference, if you’re able to get in to see them (and afford them).
A very close friend of mine was in your position a few years ago. She was “lucky” because she had an extremely caring OB/GYN who tried so so hard to make her better.
She also had a hysterectomy at 23. She had to get approval from a panel of OB/GYNs, a psychologist and a pain management specialist.
Try to switch doctors, try to find someone on your side, and start hounding “who do I need to talk to get this crap removed, who needs to sign off.”
And many hugs, I’m so so sorry, that’s not fair at all and I wish no one had to go through your experience.
What century is this? Your doctors refusing to consider a hysterectomy sounds ridiculous. I second the idea that you find new doctors, even if you have to travel. You might look for recommendations on an endo forum.
Not really my area of expertise, but I’d bet you could find a doc to pull your uterus if you paid cash. I’m not saying that’s right or fair, but you might have better results arguing with the insurance people than the docs.
Everyone who responded – thank you. I didn’t expect such an outpouring of support, and I really appreciate it.
It’s also given me a few ideas to turn over in my head as to how / where to proceed next.
I’ve mostly learned to ‘live with it’ at this point, and like someone mentioned, now I’m getting ‘you’re fat, so you have problem XYZ now’ issues, and it’s really frustrating.
Leah, I went through a lot of what you describe there only I never bothered to get the surgery for endometriosis. I had a doctor who was happy to prescribe any amount of pain meds without much hesitation so at least I wasn’t fighting the medical establishment. I agree, you need a new doctor and a new endocrinologist and possibly a little chat with your state’s medical board about their crappy patient care.
What finally helped me though was switching to Depo-provera for BC. With Depo, you get a shot once every 3 months. Lots of women on Depo never have periods at all and I’m one of them. With no monthly period, there’s been no monthly pain & vomiting exercises. No monthyly migraines either. I know depo’s not for everyone but it’s been a godsend for me. It’s something you should discuss with your new, better doctors.
If there’s a Planned Parenthood near you, they might be able to help you. PP handles all aspects of women’s reproductive health. They can dispense birth control and all around might have more experience with severe monthly issues than your male doctors so far.
Good luck!
Merneith, thanks for the tip. I haven’t tried that particular kind of BC, so maybe it will help. I’ve also never been to a PP, but I’ll look and see what I can find in the area.
You might also ask them about patient advocacy or legal help. They might be able to at least point you in the right direction. Call the national number if you can’t find a location near you.
The next time a doctor tells you that the pain is in your head, kick that doctor in the balls and say, " Does that hurt, because I didn’t feel a thing."
This will only work on male doctors.
Which is why they stand away and turned a little bit away from the patient. To protect the hanging brain.
I am so sorry that you are enduring all of this.
I wonder why this policy is in effect: is it because doctors really do think you’re going to change your mind one day, settle down with a nice boy, and have ten babies, or is it they’re scared of being sued in case you do change your mind and blame it on them?
I think the latter reason has some validity, though it’s not the whole reason.
What is wrong with those doctors???!!! I can only imagine how frustrating it must be for you to try and get some relief from your pain and having them tell you it is all in your head. I am so sorry you have been going through all this. I don’t have any advice, just my wishes that you can find a sympathetic doctor and a solution to your medical issues.
Leah M, I’m sorry to hear that you’re having such an awful time with your doctors.
There is something wrong with a medical establishment that declares that a woman is old enough to decide she wants children in her late teens, but isn’t old enough to decide that she doesn’t want children in her late twenties. Particularly when quality-of-life issues are involved.
I am so sorry you are having to suffer all this. I have had reproductive issues all my life, though honestly right now I’m thanking my lucky stars I haven’t gone through what you have. I had the excruciating, vomiting pain starting at 13, but the problems were significantly helped by getting on the Pill and it was several years before I began having really bad symptoms again. This last year was hell but it had more to do with the very poor decision on my part to have an IUD put in. Now it is out and I am hoping a new Pill will help me get my life back. I am, however, getting to the point where I believe a hysterectomy may be necessary as my symptoms are getting increasingly worse. I have already ruled out childbirth as a possibility–if I have kids, they will be adopted. Only time will tell.
I don’t know where you live, but my immediate instinct is to get you into a well-known, excellent health-care system, preferably through a university with a liberal ideology so that you can get the reproductive health care you need. This may require travel and extra time and expense, but I imagine some relief would be wroth anything. I suggest University of Michigan healthcare system if possible because they are nothing but wonderful about reproductive health.
Well I know you said you were venting and didn’t want advice. I just know somewhere there is a doctor out there who will approve that hysterectomy. The current system you are in is dangerous to your health!
Ok, stopping with the advice. hugs
Good luck dear! From one dysfunctional uterus to another.
More hugs and best wishes, and advice from a non-doctor, but one who has a firm belief in patient advocacy:
You don’t have to live with this.
It took me almost 10 years to find a doctor who would listen. Mine wasn’t gyno but rheumatic, but many doctors don’t believe in anything they can’t prove with a test. I was diagnosed as “clumsy” and “lazy” until they found that I could dislocate my hips by walking up stairs. Now I’ve got treatment and physio, with pain able to be controlled with OTC meds. I found a doctor who believed me, and I’ve never felt better.
At your age, I second the visit to the psychiatrist, but not for the reasons the doctor gave. The psychiatrist will be able to certify to any doctor who says “You don’t know what you want” that you, in fact, do know what you want, and that you aren’t insane for wanting your baby-factory removed. They will also be able to help verify that you aren’t drug-seeking. Be clear, be firm, and be consistent.
Combine that with a willingness to travel to find a doctor who is willing to listen, and you’ve got a start on potentially changing your life for the better.
I also second the recommendations to shop the endo/PCOS support groups for sympathetic doctors. Also, phone interview doctors to save time and copays. A few questions before making an appointment can save a lot of heartache.
[ul]
[li]“About how many endo/PCOS patients do your doctors treat in a year?” [/li][li]“What course of treatment do your doctors recommend for endo/PCOS patients?”[/li][li]“Do your doctors ever perform/recommend hysterectomies for women with severe endo/PCOS?”[/li][/ul]
Also, you have a right to review ALL of your medical records. Request them from all your doctors. You can also challenge anything in your record- if they noted “referred to psych for eval of drug-seeking behavior” you can get that redacted from your record. You don’t have to start fresh for a “new” diagnosis and the same old treatments which don’t work when you visit a new doctor.
If you don’t feel strong enough to advocate for yourself, get a friend, family member, or hire an advocate. Their job is to be there for you and talk to the doctors when you can’t, and make sure you are getting the treatment you need.
Best of luck on your search.
Kalea, that’s actually really helpful, so thank you for the tips.
Up until very recently I was pretty limited because I couldn’t drive (I was just terrified of driving, and put off getting my license for a long time). That changed two weeks ago, so hopefully I can have better access to doctors that aren’t right here, but might come recommended.
And no worries, olivesmarch4th. I don’t mind the advice, I just tend to give that as a general disclaimer even when venting to my friends, because otherwise they think I’m looking for a real, concrete answer and I just really want to kind of purge emotions.
My mother was taken in for an apendecectomy when I was 2yo; she was in excruciating pain (even after back surgery and with 50+ years history of bad bones, she still says that was the most pain she’s been in). The doctors opened, found a perfectly healthy appendix, removed it anyway “since she’s open already,” rummaged around a bit, found a cyst the size of a Navel orange on her right ovary, called a Gyn Surgeon. My brothers are both from the left ovary - and amazingly, Mom’s periods never again hurt as much as they used to hurt every other month, for several years before the “apendecectomy.”
One of my HS classmates used to have enough pain on her periods to make up for every other girl in the class who got good ones. One of the guys once asked “but does it really hurt that bad?” “Well, not us, we’re lucky, but her? Hell yeah, nobody gets that shade of green if they’re faking.”
I do hope you find good doctors soon.