Jacqueline Wolf - A Woman's Guide to a Healthy Stomach

Her examination was normal, save for a dark, raised round area on her neck and slight tenderness on the lower left side of her belly. Her blood tests showed borderline anemia. A repeat colonoscopy and upper endoscopy with samples of the bowel lining were completely normal. She was also tested for gluten allergy and did not have it. A review of the original rectal biopsy, when she was first hospitalized with bloody diarrhea, was consistent with an episode of infection.

These findings suggested that Crohn’s disease was unlikely to be the cause of Susan’s symptoms. Further history revealed that Susan always developed diarrhea whenever she was given the antibiotic clindamycin; not surprisingly, she had received clindamycin before dental work in the past, possibly just before the bloody diarrhea. Prior to her hysterectomy, she experienced rectal pressure, and around her menstrual period she would have diarrhea lasting up to eight days. The rectal pressure and diarrhea both resolved after surgery.

Because I really didn’t think that she had Crohn’s disease, I stopped all her medications. Off all meds, Susan reported that her diarrhea occurred up to six times per day after eating, three to four days out of the month, and was usually controlled by Imodium—a definite reduction from her previous bouts.

An abdominal CT scan was done one month after her second appointment, after all the records had been reviewed and the endoscopic procedures completed. This showed only a 2-by-2.5-centimeter round mass in the pelvis, close to the abdominal wall, the exact location where Susan felt her lower abdominal pain and where an ovarian cyst was found in the past.

Endometriosis as the cause for all her inflammatory symptoms was very unusual. Yet because Susan didn’t appear to have Crohn’s disease and was doing well off all medications, and because the CT scan showed an abnormality where Susan complained of pain, I referred her to a gynecologist who specialized in endometriosis. He performed laparoscopic surgery, which revealed a hemorrhagic ovarian cyst and scar tissue. The doctor didn’t see endometriosis, though. He thought the pain was due to the ovarian cyst and the scar tissue. He drained the ovarian cyst and cut the adhesions. Her abdominal pain improved after surgery.

However, seven months post-surgery she began to develop severe left lower abdominal pain monthly with what she thought was ovulation. The pain was accompanied by sores in her mouth and fever. She continued to develop ovarian cysts, which would rupture. She had cramping abdominal pain at other times (different from the monthly ovulation pain), which she controlled with dicyclomine hydrochloride, an antispasmodic drug.

Her gynecologist started her on Loestrin, an oral contraceptive pill, to try to suppress ovulation. However, she could “feel” ovulation and did not think it had been suppressed, even though her diarrhea decreased. To treat the irritable bowel syndrome with which she had been diagnosed as a teen, she was started on the tricyclic antidepressant desipramine, which is helpful for decreasing abdominal pain and diarrhea.

But two years later she again developed severe lower left abdominal stabbing pain and fevers. Her blood pressure spiked to 146/96, and the Loestrin was stopped. (Hormones will increase your blood pressure at times.) A pelvic and abdominal exam showed tenderness on the left side, in the area of the ovary.

Susan’s gynecologist performed yet another laparoscopy. Endometriosis was buried in the adhesions that were found. At that time, because of all her symptoms, the gynecologist removed both ovaries and tubes. Now, more than two and a half years after surgery, she has had no further abdominal pain or diarrhea. “I’m cured,” Susan told me recently. “I have begun traveling again and exercising. I eat what I want when I want. I feel like a normal human being, and I’m a mom to my children.” She thanked me for listening to her when no one else would.

If your ovaries are left at the time of surgery, endometriosis can come back. Women should discuss having their ovaries removed with their gynecologist, because doctors will often leave an ovary to prevent the menopausal symptoms that can occur after the ovaries are removed. If you have already had the children that you would like to have, removal of both ovaries may be a good option.

Why did Susan have to suffer for so long? Why was she misdiagnosed? The doctors didn’t listen. Or, if they did, their preconceived notions did not allow them to ask the right questions and think outside the box. Perhaps they weren’t knowledgeable about some of the side effects of medications, or perhaps they weren’t knowledgeable about endometriosis. Either way, Susan was treated with the wrong medications—medications that caused a substantial number of side effects. Prednisone could have caused her osteopenia (bone loss), joint pain, weight gain, high blood pressure and possibly the skin infections. Her doctor almost put her on Remicade—a potent drug that suppresses an inflammatory substance called tumor necrosis factor.

Importantly, medications given to Susan by physicians played a major role in Susan’s gastrointestinal illnesses. The Clindamycin, an antibiotic, likely caused the bloody diarrhea by inducing a Clostridia difficile infection, which was responsible for the bloody diarrhea. Nonsteroidal anti-inflammatory medications (NSAIDs), like aspirin, ibuprofen and naproxen, can also cause colitis. It would appear that one physician did not know what another physician had done. Susan tried to ask the right questions. She was more knowledgeable than most women, since she worked in the medical field. However, she wasn’t calling the shots—her doctors were. And her questions were rebuffed.

For doctors, it’s an easy trap to fall into. Once a diagnosis is given, it is often difficult to get that diagnosis changed. It’s often easier to fit symptoms into that diagnosis if they seem to “mostly” fit rather than embark on an evaluation for a possible new diagnosis. When all the results don’t fit—like in Susan’s case—a new way of looking at the old and new problems has to happen. Susan tried to foster that way of thinking. However, the sicker she became and the more she was told she had to live with her problems, the more despondent and hopeless she grew. Some of her symptoms were not typical for endometriosis, and this led her doctors astray. Susan was misdiagnosed and on drugs she shouldn’t have been on, and that caused side effects. I was at least able to correct the Crohn’s misdiagnosis, take her off unnecessary drugs that could have caused substantial side effects and refer her to a doctor who could take care of her problem.

The moral of this story is be vigilant—you know your body best. If something feels wrong, say so. If you’re left with more questions than answers after a doctor’s visit, speak up. Get a second opinion.

WHAT YOU NEED TO KNOW ABOUT ENDOMETRIOSIS:

1. Endometriosis is a condition in which the lining of the uterus takes up residence outside of its proper location.

2. It is common in women.

3. It often mimics common gastrointestinal conditions, such as irritable bowel syndrome.

4. Many health-care providers are not adequately informed about endometriosis. Be your own advocate—ask whether you could have it.

5. It is difficult to diagnose with standard radiology tests and often requires an examination with a scope inside the pelvis or abdomen (laparoscopy).

6. There are both medical and surgical treatments for the condition, but recurrence is high if a woman still has her ovaries.

7. It is associated with an increased difficulty to conceive, but endometriosis seems to improve during pregnancy.