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    All Endo, PCOS, Adeno, Hysto's, Pelvic Pain this is the link to our new Exchange. It will take some time to get everything re-entered...but WELCOME ALL!!!
    Endo/ bicornuate uterus and pain
    JenniBeth23 posted:
    Hi all- I'm new to this group and I wanted to know if anyone had a similar experience to mine or any advice for me.
    I was diagnosed with endo in 2011, but I have had pretty awful and painful periods since they started when I was 12. I'm 25 now and I've gone through ultrasounds at least twice a year for the last 13 years, and I've always been told there's nothing wrong with me. About 3 months ago I had another ultrasound to check the size of my ovaries, because my mother passed away from ovarian cancer last year, and the ultrasound tech's notes said I have a bicornuate uterus. I'm pretty shocked because I've had so many imaging tests and in addition I had a diagnostic laparoscopy in September 2011, and this has never been noted before. I even requested my doctor's notes from my surgery because she dropped off the face of the earth without letting me know she wasn't going to be practicing or that she was moving or anything, and she hadn't noted it in my chart.
    Since about 2009 my pain has increased quite a bit. It is to the point where no matter what I do, I am never comfortable. Nothing eliminates the pain completely, sometimes it hardly goes away at all. I have tried to just get used to it because I don't want to completely rule out having a family of my own since I'm so young, but sitting or standing for more than 2 hours at a time is almost agonizing. I take 10mg of percocet when I absolutely need it- which is about once a day- but my primary care doctor refuses to give me a new prescription, and the gynecologist I'm seeing now has told me that "it's not that big of a deal, there's nothing we can do." When I asked her about my bicornuate uterus in June she told me "Well, I don't know. But we can talk about it when you're ready to have kids. You're too young to think about it right now." I'm 25- I could have kids whenever I damn well please, and the fact that I can't get help or a straight answer out of any medical professional I've seen is ridiculous. I tried to get a referral to a specialist at UCSF and my insurance denied the claim because I'm not covered for infertility treatments. When I called to explain my situation, the woman told me if I had another problem, they could help me.
    I live in the CA central valley area, but at this point I'm willing to travel anywhere. I am going to lose my insurance in December because I'll be turning 26, and I'd like to have a treatment plan in place before then.
    My first laparoscopy didn't help at all- once I healed from the surgery the same pain came right back, and since the doctor who did it just sort of disappeared and overlooked the fact that my uterus is actually not the shape it is supposed to be, I'm not confident she did a competent job.
    I could definitely use whatever help anyone has to offer- if you know of a good gyno in the California central valley/ Bay area or anyone who deals with these issues, or if you have some treatment advice. I can't seem to get help from any doctor I've seen, and I don't know what else to do. I have seen 5 doctors about this and not one suggested I might have endo, I am the one who figured it out and asked for the laparoscopy. When I got out of surgery my doctor said I must have been in pain, because it was bad. I'm just really frustrated and I really need a doctor who can help.
    Thank you!
    brandib01 responded:
    that sucks that you are having all these issues \ and you are right you are technically in prime baby making age. and it is your choice. if my doc ould have said that i would have smacked him.
    i know there are quite a few docs out there and there is one specialist i will have to try to find his name again but he is pretty expesive but they will work with you.

    my first suggestion is to seek a reproductive endocronologist who specializes in endo. then you will not be going for fertility you will be going for a systemic disease which causes chronic pain. it's all in how you request it.

    my insurance would not cover anything fertility related so my doc coded everything under endo treatments where he could to get them to cover it.
    Brandi 28dx'ed.endo lap 09'
    JenniBeth23 replied to brandib01's response:
    Thank you! That is what he put on the request form, but I'm going to appeal because they covered my lap 2 years ago and my pain has been so bad I am thinking of having another one, especially since I will lose my health insurance at the end of the year. The woman I talked to at my insurance company was awful, she wouldn't even try to work with me.
    I finally found a doctor in my area who is a reproductive endocrinologist, but she can't see me for months so I'm seeing another doctor in her practice who I've been told is really good too. And the nurse I spoke with said if he can't help me, he'll be able to get me an earlier appointment with the specialist.
    I'm just grateful to have spoken with someone who wants to help, and doesn't just write me off. I'm so tired of being told to just suck it up and take some ibuprofen. If that helped I don't think I'd be curled up on the floor, sobbing hysterically because I don't know what else to do.
    Thank you for the suggestion- I am definitely going to go through all the requests and make sure they talk about endo specifically.
    brandib01 replied to JenniBeth23's response:
    great im glad you found someone and don't let the insurance lady get you down. just stay on them. that is their game if they can keep you from trying and pushing the subject they can save themselves the money. squeeze in as much as you can.
    Brandi 28dx'ed.endo lap 09'
    kingssqueenn responded:
    had ovarian cancer in 1994 i was only five years old . My doc did a partial hystorectomy and removed my 2 lbs tumor . I stayed at childrens hospital in dallas texas for months on end . I am now having a constant dull aching pain in my lower pelvic and lower back. The pain is present with my period mostly but it seems to bother me alot more now after sex. I also have trouble urinating almost having to push and its painful. I have a 3 yr old son and none of these symtoms were present when i was pregnant . Please someone if anyone some advice is this normal??o
    An_251574 replied to kingssqueenn's response:
    This is not normal! You need to go talk to a doctor and get an ultrasound if you haven't done so already pronto. Best of luck
    Survive29 responded:
    I hope that since this post you have found a resolution. I went through years of horrible pain and several doctors before I found one that actually helped me.. But there were consequences with that as well. I started with painful periods from the get go. My Obgyn prescribed pain meds and dolomite. It did not help. In college I revisited the issue again. I had a laparoscopy. I was told I had a bicornuate uterus and not to worry about it. Take pain meds. My pain continued to worsen. I usually vomited my entire menstrual cycle due to the severe pain and would lose about 5 pounds in a week. In my mid 20's it became so bad I went to the er once. They gave me a pain shot and they sent me home, but the nurse told me I was actually in shock and this pain was not normal, to keep pursuing it. In my late 20's I finally got an on/gun that pursued the issue. He asked me to come to the er next time I had the pain and have him pages. He examined me and could feel how swollen the uterus and the pain when he pal patted the mass I almost passed out. After many tests (laparoscopy, dye test, and exploratory surgery), I had a bicornuate uterus. However he second uterus had no outlet. It was filling every month but had no exit , hence the pain and swelling of the horn. Additionally that horn had endometriosis surrounding it on the exterior. Double the pain. We scheduled to have it removed. Best decision ever. I did have Lupron treatments after to prevent reoccurrence of endometriosis. I regret that as I did end up developing estrogen positive breast cancer 2 years later. My doctor felt the risk was minimal (even though I had a family history). My main uterus was healthy. 7 years after breast cancer I had my daughter and 4 years later my sonny painful menstruation went away within a few months of surgery. I was thrilled to be able to take a few Advil for the minor cramps that most women feel. Keep going until you find someone willing to find out what is wrong and do not let the insurance companies or doctors make you live with chronic pain.

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