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Endometriosis? Ladies I Need Input!

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Posted 3/12/2010 6:01 AM (GMT -8)
Okay...time to change my profile.  Sigh :(  I went a glorious 6 months without a period and even put weight on from not having flares during that time of the month.  Wham, March hits like a lion and I have excrutiating pain over my right ovary for 3 days.  Went to the Gyno and I'm awaiting biopsy results.  I know there is also a ileal endometriosis that can mimic Crohns as well.  Had my Gastro checkup the week prior (which would have been the week of ovulation).  The CD looks under control except for some pain under the pelvic bone kinda left of center.  The Gastro took it as rectal pain and gave me some steriod creme, however, the pain is higher up in the typical lower intestinal area from my experience.  I only feel this pain when having a formed stool (which is also common for endometriosis).  I did not associate the two types of pain together until after leaving my biopsy.  Anyway, my greatest fear is that since my so called CD has been controlled (loosely translated) through meds and surgery since Jan. 2007 and I felt wonderful during the 6 months without a period.....that there is a possibilty that my diagnosis could change to ileal ednometriosis.  I know that would be GREAT news compared to Crohns...but the treatment options would change drastically and what if they are wrong in the diagnosis and it IS Crohns and/or BOTH!  Any input would be greatly appreciated from those with experience.  I have searched healingwell for other posts and read them....just wondering if anybody has anything new to offer.  Laproscopy is something I would seriously consider doing (if the Gastro lets me) even though I'm on the brink of menopause.  Gyno wanted to do a hystorectomy years ago but Gastro said no because of Crohns.  The pain this last time like to have KILLED Me!  Sorry for the long post mods!shakehead  I don't know what to do!
Posted 3/12/2010 8:44 AM (GMT -8)

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.

Posted 3/12/2010 9:09 AM (GMT -8)
I've never been diagnosed with endometriosis, but I've had horrible periods since my early thirties. I was put on B/C pills to help me absorb calcium for my bones and was taking them continuously so no periods for months, it was wonderful! But last summer I got terrible pain. I ended up seeing just about every kind of doctor in a matter of 3 days, all emergency appointments, and tests after tests. I had a UTI and was told that I had a sacro illeac joint dysfunction and had to go to physical therapy for months. But in the course of all the testing they found some polyps and fibroids. My GYN swore that in no way was that the cause of the pain, but they needed to come out. So I was scheduled for endometrial ablation. The first few days after I was wiped out from the anesthsia and the pain was a bit more than I expected, just really bad cramping. BUT the really intense pain that started the whole odyssey was gone. Something told me that all the doctors were wrong and that the polyps and fibroids were the cause of the pain, and I was right. I no longer take B/C pills (my bones are stable) and my periods are about 36 hours long and getting short each month.

Endometrial ablation is easier than a hysterectomy on the patient. It can't be used on anyone who wants to have children, but if you are past childbearing age, you might want to look into it. But if most of your issues are outside the uterus it might not be the solution, but it could be part of the solution.
Posted 3/12/2010 11:33 AM (GMT -8)
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!
Posted 3/12/2010 2:31 PM (GMT -8)
I'm just sayin' that not one of the many doctors were willing to admit that the fibroid was the cause of the pain I was having, but I am a long term Crohnie and I can take pain BUT this pain was something else!!!!! When the doctor took the fibroid out, pain gone, done, over, caput! So don't tell me it had nothing to do with it. I had pain for months then, gone a day after surgery, I didn't just fall off the turnip truck. I think you may be on to something with the fibroid.
Posted 3/12/2010 3:46 PM (GMT -8)
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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