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Endometriosis

Open content for all who have questions or comments on woman's health issues, ... more

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JenniBeth23

Joined: 09/02/2012

My Story:

Hi! I'm Jennifer, I was diagnosed with endo in September 2010 when I had my first lap, but I've been dealing with the agonizing pain for about 13 years now, since my first period. I've never had regular periods, when I'm not on birth control they happen about once every eight months. Currently on bc I have my period every 4 months, and it's pretty ridiculous as far as pain goes. I take percocet for the pain, and I have one or two ultrasounds a year to make sure nothing else is going on because my mother passed away from ovarian cancer in April of 2011 and my doctors are monitoring for that as well.
I am trying to find a doctor in my area that has any experience dealing with endo- nearly every doctor I've seen has told me to suck it up or take ibuprofen before I start my period. That's been the most frustrating part for me- constantly being told there's nothing wrong, that it's all in my head. Because my mother's ovarian cancer went undiagnosed for two years despite her persistence and follow-up, I document every little thing when it comes to my health. I finally have an appointment with a doctor who hopefully can help me, but I don't have a whole lot of options left.
I am optimistic that eventually I'll find someone who can help me, and I'm looking forward to a day when I'm not in excruciating pain most of the time. I can't wait to use my heating pad for other things, rather than additional pain management. Mostly I can't wait to go more than a day without a pain pill because I don't need them, not because I ran out and my doctor won't refill my prescription.

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Reply: adenomyosis, cysts and birth control, OH MY!

That sounds horrible!!! I am so sorry for your incredibly long and difficult ordeal-...

Posted by JenniBeth23

5 Replies | Reply | Watch This DiscussionReport This| Share this:adenomyosis, cysts and birth control, OH MY! That sounds horrible!!! I am so sorry for your incredibly long and difficult ordeal-...

Da Vinci lap vs. traditional lap for treatment?

So this will be my second surgery for my endo- the first was in September 2010- and my...

Posted by JenniBeth23

1 Reply | Reply | Watch This DiscussionReport This| Share this:Da Vinci lap vs. traditional lap for treatment? So this will be my second surgery for my endo- the first was in September 2010- and my...

Reply: Endo/ bicornuate uterus and pain

Thank you! That is what he put on the request form, but I'm going to appeal because...

Posted by JenniBeth23

5 Replies | Reply | Watch This DiscussionReport This| Share this:Endo/ bicornuate uterus and pain Thank you! That is what he put on the request form, but I'm going to appeal because...

Endo/ bicornuate uterus and pain

Hi all- I'm new to this group and I wanted to know if anyone had a similar experience...

Posted by JenniBeth23

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!View Thread

Posted byJenniBeth23

5 Replies | Reply | Watch This DiscussionReport This| Share this:Endo/ bicornuate uterus and pain Hi all- I'm new to this group and I wanted to know if anyone had a similar experience...

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