Endometriosis? Ladies I Need Input!

oh bless your heart. I will give you my experiences, but that's all I can tell you. The Dr.s tried to Dx me for about 2 years and during that time, my husband noticed that every time I went to the ER, I was having my period. I spoke to my GI about it, and he thought that maybe it was endometriosis mimiking Crohn's. After a million different tests, they didn't find any and I don't think they actually believed it was Crohn's until I had my resection in 2006. I am premenopausal, so during the times I didn't have a period, no flares. Hmmmm...

After the resection, I haven't had flares during my periods. (about 3 last year)

Now, a few years before the stricture was bad, I had excruciating pain in my right ovary. When I called my Gyno, he said it was a cyst that had burst, perfectly normal for premenopausal women and that my body would absorb it and it would be fine. It did and I was.

I'm just wondering if this could be a cyst. Usually I think (if I can remember that far back) it happens more during ovulation that during your actual period, but I might be wrong about that.

Oh, one more thing...

Every Dr. from Gyno to Internist, to GI told me that having your period does not effect a flare. Don't believe it!! Ask the women on this board and you'll get a resounding YES!!! Every time I have my period, I flare.

Good luck and I'll be thinking of you.

I had the lovely transvaginal sonogram the day after the endo biopsy. Let me tell you the saline flush was just wonderful on top of the biopsy site! :( Grrrrr! She found a 2.5 cm fibroid at the top of the inside of the uterus. That was it! The uterus & ovaries otherwise looked good. While it could have been a burst cyst she didn't "see" any indication of that. However, it was 3 days after my "attack" before the sonogram was performed. If it was a burst cyst....would the pain levels been the same for over 48 hours? Kidney colic only lasts for about 18 hours each attack unless you have a stone you can't pass. So befuttled here. If something burst it seems it would have felt better immediately (except for soreness). I'm still waiting for the biopsy results. Since endo can occur anywhere there is scar tissue and God knows we ALL have had our share of pelvic "trama", in my case I question the following: When they did my resection in 2006 they also stented my ureter and removed a 4.5cm (Crohn's) cyst from the right ovary which was blocking the ureter. So if it's endo, wouldn't it be possible that the scar tissue from removing the prior cyst, stenting the ureter and the resection area itself be open to endo tissue attaching itself? I have read even though laproscopy is the "definitive" diagnosis for endo of any kind, there is also some articles whereby endo tissue was "seen" by an MRI. Ergo....unless the MRI will not show behind the ovary and in front of the ureter...it seems less invasive to try this first. I know I'm rambling here, please "bear" with me. By the way Skeptical...the resection did not stop my flares :( and yes, no one can tell me that Imuran, 6mp and the like medications don't affect your hormonal levels and/or fertility! Just try coming off the stuff for awhile and see what happens! Pitter, patter, pitter patter....I'll just have to wait until the phone rings...huh! Thanks for holding my hand today and keep the comments coming....except for you Randy!

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Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones, Carpel Tunnel & POST-menopausal (Hurray)

Suzanne- I have a very high pain tolerance and a history of nasty periods 5 yrs. prior to my CD diagnosis. In fact, I had been barking up the Gyn tree so long prior to the CD and NO ONE paying me any rabbit $%^ mind if you get my drift. This accompanied with the fact that my CD did not present ANY bowel symptoms during that 5 year period. I had seen a physician's assistant at my regular GP office and presented with pain during bowel movements. That's when the blood in the stool showed up and the rest was history....resection, appendectomy, blocked ureters, blah...blah.. within 6 months. It could be that the "fibroid" she found at the top of the uterus was causing the left of center, behind the pelvic bone pain. Kinda hard to believe anything of that size during uterus contractions wouldn't be painful.

I always had hard, fast and heavy periods for the first three days and then light the other four days. That's when the first of the pain began (this time actually before the bleeding started). I used to question whether all was well with my LH and FSH hormones throughout all of this too (which they never tested).Also, I only had 4 hours hard labor with each of my 3 children. The periods actually follow about the same duration/course as the labor did too.

I don't know...I'm a little PO'd that she didn't get back with me today, however, I do know she was trying to talk with the Gastro. I think I've decided I want to push for an MRI next if I do have the endo. I don't think my insurance would have a problem with that over the lapro but I probably need to check that out too. Thanks for being there for me today and yes, that pain rates right up there with a lodged kidney stone!!!!! It was horrible! Maybe all of this will help another CDer/Endo patient down the road. That's part of why I'm posting it.

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Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones, Carpel Tunnel & POST-menopausal (Hurray)