is this endometriosis - my OB says diff dx includes a lot more

[duck64]

-29 years old -off BCP for about 2 years, actively TTC (charting, etc) about 7 months. -always have had very heavy, clotty, long periods (about 6-7 days, days 1-3 heavy, then fairly light). 28 day cycles. -pelvic pain with deep penetration during intercourse -chemical pregnancy history x 1 -uterine fibroid ("small" per GYN) on ultrasound -retroverted uterus on ultrasound, which was done right around ovulation time -chronic back pain (may be musculoskeletal) bilateral flank/kidney pain every morning,  -diarrhea and constipation around period -PAINFUL bowel movements (rectal and pelvic) on days 1-2 of menstrual cycle, some R hip pain around 1st day of period - very strange location (not really in joint but very deep),

MD has taken the stance of: -lots of women with endo can get pregnant (doesn't want to consider lap until TTC 1 year) - wants to refer me to GI doc for ? IBS and says that if this were endo, I would experience constipation/pain with BMs month-long (not just period) -says she could refer me to urologist for kidney pain -says lots of women have retroverted uterus and can still get pregnant -says if this were endo, my period would have gotten worse (mine has ALWAYS been bad),

Any help that is out there is appreciated. I am grateful for your responses in advance!

[Narisha]

hi there, sorry to say. I've that kind of problem to and i allready diagnose with an first stage endo. The good thing is i get pregnant twice but get misscarriage twice also. In My country, if you have an endo you can diagnose it by only having a bllod test. So good luck to you

[duck64]

THANK YOU FOR THE REASSURANCE! I'm going to a new doc next week and can't wait - he sounds proactive. I really appreciate your feedback. :)

[HopefulWM]

I don't wan to worry you, but it sounds to me like you have it. I've had it since 01' (diagnosed at 21).
The good news is I got preg. 2x, the bad news is miscarriage and ectopic. Both of which have nothing to do with endo--endo's two main set backs are pain and infertility.
I had a lap in 01' and my pain has been very managable since then (being on the pills).
I can assure you that this is something you can live with and you can still get pregnant. I take evening primrose oil 2x a day and that also helps.
Good luck all is not lost, I promise.

[duck64]

Thank you so much Deesgal - I didn't think I was going crazy. Great to hear a success story too. :) Yeah, my bum hurts a LOT during AF but OB said it was probably some kind of hormone, or my uterus (that is retroverted) pushing on my bottom. OUCH!!!

I think I've found a new doc - one who is reportedly a lot more proactive and engaging than the one I had been going to.

Thanks for giving me some hope!

[Deesgal]

OMG! I have just read my past symptons! The only bit that I felt that you haven't mentioned is.... when I was on it felt like someone had just stuck a size 12 boot up my bits. My GP told me I was suffering from period pain, it wasn't until a friend walked in one night and I was curled up crying in pain that I got to see a different doc, who diagnosed straight away endo. I had the lapo to confirm and was put onto provera ( sent me nuts). So if any help for now try STARFLOWER capsules 500mg, they worked a treat on me and I have a 9 year old son to prove just how well it worked. After my son was born sypmtons did return and I ended up with a hystorectomy, but that was best for me as I now had 4 kids.

Stand your ground hun sounds to me as thought you have it.
Good luck fellow sufferer x

[Forum-M.D.-SP]

Dear duck64. I agree that your pain symptoms  may very well be indicative of endometriosis. Your heavy bleeding symptoms may be indicative of a polyp or fibroid within the uterine cavity.

Regarding your testing, my answer is that which tests should be done would depend on your needs and symptoms. For the heavy bleeding in someone trying to get pregnant, I would consider either an ultrasound or even more accurately a saline ultrasound to evaluate the uterine cavity.

Regarding a laparoscopy to diagnose endometriosis, if the pain you experience is severe and affecting your activities of daily living, then a laparoscopy could be done sooner rather than later. Approx 50% of the time, laparoscopies for pelvic pain find endometriosis, so your ObGyn is correct that endometriosis is not always the diagnosis. If endometriosis is found, laparoscopic treatment of endometriosis by an experienced laparoscopic surgeon will result in improvement in pain symptoms 60%-70% of the time, but not 100% of the time, and often only temporary before symptoms recur again.

Regarding a laparoscopy to look for endometriosis causing infertility, an important question is how long have you been trying. If it has been two years of unprotected intercourse and not trying to avoid conception, then it may be that you have been infertile longer than 7 months. It is also important to understand that laparoscopic treatment of endometriosis has only a very small beneficial effect on chances of getting pregnant; fertility drugs with intrauterine insemination, and ultimately IVF if inseminsations fail, are likely to get you pregnant at age 28 more assuredly and more quickly than surgery. Thus, even though your symptoms are suspicious of endometriosis, and even if you had surgery confirming endometriosis, the benefit of surgery to get you pregnant more quickly is not a strong benefit.

To summarize:

1) Consider a saline ultrasound to evaluate your heavy periods
2) Consider laparoscopy of your pain symptoms are disruptive
3) I am unsure of the benefit of laparoscopy to diagnose endometriosis as a means of making you get pregnant faster.

Hope this helps!