Possible intestinal endometriosis

[bkj]

I'm 48 and not menopausal.  I had a hysterectomy 20 years ago for extreme pain and heavy bleeding.  Had just uterus removed.  Did OK for 10 years then cyclical right lower abd/pelvic pain.  Laparoscopy showed endo but Dr. couldn't laser.  2 years later increasing cyclical pain turned to constant unbearable pain.  Specialist in endotriosis did laparoscopy and lasered endo on right uterosacral ligament and adenomyoma right ovary as well as appendix.  Still have left ovary. Did well for 2 years then began having right lower abd/pelvic pain somewhat different in nature than previous.  Also had diarrhea and feeling poorly.  Thinking it was again endo had the specialist perform another lap but it didn't show anything, bowels looked OK.  Went to Gastroenterologist and had CT abd/pelvis, UGI with small bowel followthru, colonoscopy.  All test normal.  DR. dismissed me so I tried to uncover cause of problem.  Thought it might be related to food allergies I kow I have so I went strictly off gluten and actually felt better and pain decreased.  Then 2 years more and pain accelerated. Also started having neuro symptoms.  Negative workup for anyting neuro and all labs normal. Restricted diet more to exclude dairy and neuro symptoms greatly improved.  But pain became excruciating.  Went to ER and CT scan normal.  I'm now waiting for another Gastroenterologist visit.  Before seeing me he did do an endoscopy which was normal.  Before procedure, he mentioned my pain may be related to intestinal endo.  But the endo specialist did not see any 2 years ago.  Since I'm going out of my mind with this pain, I thought I would try to get some insight into the possibility this could be intestinal endo.  I have diarrhea usually but it isn't a great problem.  My intestines make a great deal of noise and especially in the right lower abd. down by my lower hip.  The pain intensifies about an hour or two after I eat.  I feel slightly nauseated but do not vomit. I am losing weight. I feel terrible. I can't take pain pills due to reactions so I am living a miserable existence till I can get to the bottom of this.  Any insight you may have of intestinal endo and how to determine if it is would be appreciated.  (My other problems are asthma since 1 year ago, chronic migraine headaches.)

[Shiann]

A related discussion, I NEED HELP was started.

[luckless]

It seems that most surgeons would rather leave the adhesions alone unless they cause complete bowel obstruction. What else would convince a surgeon to operate. Mine does not seem to concerned about my reoccurant belly pain.

[Knightowl]

It is an interesting comment made that a visit to a surgeon about adhesion removal is a good idea.  I get a lot of pelvic abdominal pain as had surgery on small intestine and sigmoid colon removed.  Comments have been made that adhesions could be causing problems.  But no-one wants to look in there and remove them.

What should be done?  Is it better to leave them??  Some of my doctors think that while removing them they create more???  Any comments would be appreciated.  Apparently pulling them apart causes more bleeding and perforations which need stitching back together...   Thank you...

[Kevin Pho, MD]

There has been a comprehensive evaluation performed, including CT scans, UGI series and colonoscopy.  In addition to endometriosis, you may want to consider irritable bowel syndrome (especially with the presence of diarrhea), fibromyalgia, and interstitial cystitis.  

You may want to consider laparoscopic pain mapping.  This refers to laparoscopy performed under local anesthesia in which the tissues are probed and pulled with surgical instruments while the patient is asked about the severity and nature of any pain she perceives.

Empirical sequential treatment with nonsteroidal antiinflammatory medications, oral contraceptives used in monthly cycles, oral contraceptives used in long cycles, GnRH agonist analogues (eg, nafarelin, leuprolide, goserelin), and antibiotics are often successful in the treatment of pelvic pain of gynecologic origin, especially endometriosis.

If the GYN referral is not revealing, I would consider being treated for irritable bowel syndrome.  As surgeon has commented below, a surgery referral to evaluate for possible obstruction is also a possibility.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

Barbieri.  Chronic pelvic pain.  UptoDate, 2003.

[surgeon]

Another laparoscopy would be the most direct way to find endometriosis, whereever it might be. You also could have a chronic partial small bowel obstruction due to adhesions from prior surgery. It might be that a consultation with a general surgeon would be a good idea.