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When Marci came to me, she was very distressed about her previous physician interactions.
“My gynecologist told me that I must be under stress since my affect was ‘flat,’” Marci said. “I told her that I was in quite a bit of pain and that it was definitely affecting my mood. She spent an hour asking me about the stress in my life, and then she told me I should go to a mind/body clinic! She said nothing was wrong with me.” Marci’s gynecologist brushed off her fears when Marci told her how hard it was for her to insert a tampon because of pain; her gynecologist also failed to biopsy her ovarian cyst. Clearly, by the time Marci reached my office, she was very frustrated—not to mention physically miserable.
My examination revealed only tenderness below the navel and on the left side of her belly. I examined her colon again by colonoscopy, and while I could see traces of her previous colitis, nothing could explain the pain that radiated down her leg. I also ordered an MRI for her spine, which was normal, and a pelvic MRI scan.
Once I got those results, I felt like we were getting somewhere: The pelvic MRI was abnormal, showing a small amount of free fluid in the pelvis and an area that suggested that there might be unexplained nodules. Her colon took some unusual sharp turns, which suggested that the colon could be stuck to adhesions (scar tissue). Adhesions are caused after surgery from inflammation (such as diverticulitis, “pouching” in the colon) or from the bleeding of the lesions of endometriosis. Taken together, my findings suggested the possibility of endometriosis.
The only way to be sure was to look in that area. This was done by a laparoscopy. (See above for a description of this procedure.) There it was—endometriosis with scar tissue, with involvement in her colon. Her lesions were cauterized (burned off), and she was started on Lupron (leuprolide) to reduce her estrogen levels.
Marci developed hot flashes due to a lack of estrogen. This was actually a good sign, as it meant there wasn’t enough estrogen to stimulate the endometriosis to grow back. (Menopausal women experience this all the time.)
However, estrogen can be protective, especially against osteoporosis (loss of calcium in the bones, which makes them brittle). Marci’s doctor thought that a low dose of estrogen could prevent osteoporosis without making her endometriosis rear its head yet again, as had been shown in studies. Therefore, her gynecologist prescribed an oral contraceptive pill. Unfortunately, within a week of starting the oral contraceptive, Marci began to suffer uterine bleeding. This was unexpected—Lupron should have stopped her periods entirely. (Marci’s treatment isn’t as strange as it might seem. Despite the fact that she did not have a period, her fertility wouldn’t be permanently affected; once she stopped Lupron, her proper menstrual cycle and, hence, her fertility would return.) Even though this bleeding was clearly out of the ordinary, Marci assumed all was well, and she continued on her treatment. (Think this is weird? It isn’t. I’ve had patients come to me after having ignored bleeding for years. Don’t make this mistake!)
After three months of treatment, the bleeding became constant, so heavy that Marci went through a tampon every hour. For two weeks she went through a box of tampons every day. Her pain also became progressively severe. It was impossible to ignore any longer. On the advice of her gynecologist, she stopped the oral contraceptive pill. The bleeding stopped within twenty-four hours. The pain lessened after a few weeks but then returned, shooting down her left leg. Ibuprofen didn’t help. The endometriosis was clearly back.
Now, five months after her first laparoscopy, an MRI scan showed a new lesion between her rectum and her spine on the left side. After she endured two months of exhaustion and increasing pain traveling down both legs, despite the Lupron, more laparoscopic surgery was considered.
She underwent another laparoscopy ten months after the first one, performed by a new gynecologist. Now she had endometriosis on the right ovary and additional endometriosis in her pelvis. Further evaluation showed new lesions in front of the spine and also between the rectum and bladder, which would certainly affect her bowels. She was told by the operating gynecologist that nothing else could be done for her—short of a hysterectomy with removal of the ovaries. At thirty-one, still hoping to start a family, she refused to accept this outcome.
At this point, it had been a year since she’d begun her journey. I had kept in touch with her via phone during her long saga. She now returned to my office for a GI follow-up. She told me her bowel movements were coming only once every three to four days, pelletlike and incomplete. Because constipation can accompany endometriosis, and especially given her new lesions, I thought the endometriosis was likely one reason why her stools were so odd. For the constipation, I recommended that she take Benefiber pills (guar) and add flaxseed (whole or ground), one to two tablespoons of each per day. I also started her on lactobacillus tablets. (A study in rhesus monkeys, which I talk about below, suggests that those with endometriosis had fewer lactobacilli. The benefits of lactobacillus supplements aren’t definitively known for humans.)
Most troubling, though, was the pain that resulted from her deep endometriosis. She couldn’t have intercourse or easily insert a tampon. I switched her to sulindac, a nonsteroidal drug, which I thought would work better than the ibuprofen.
Marci didn’t like the sulindac, because it made her dizzy, and so she returned to ibuprofen for pain, sometimes taking up to eleven tablets every day. The ibuprofen made her more constipated, though it did somewhat address her pain. When she decreased the amount of ibuprofen at my strong suggestion, her constipation improved. She decreased the ibuprofen and put up with her pain.
Over the next eight months, Marci continued to have constant pain in her pelvis, although she was able to make it through her busy day, through a delicate dance of medication management. The pain caused exhaustion; she told me she’d crawl into bed at the end of a long day, praying for a pain-free night’s sleep.
In spite of two surgeries, medical therapy and opinions from several surgeons, she continued to suffer. She had a choice: should she undergo hysterectomy, with the removal of the ovaries, which would likely take away all her symptoms? This is a difficult choice for a young woman, of course. Interestingly, if she did get pregnant in the future, the endometriosis would likely regress during pregnancy, though we don’t know why. (Getting pregnant in the first place, however, might be difficult without IVF [in vitro fertilization].)
Before resorting to hysterectomy, she was seen by another gynecologist, who found tenderness on the pelvic exam consistent with endometriosis. He referred her to a gynecological-oncological surgeon, who was very experienced in complicated surgeries as he specialized in cancer in the female organs. The best time to operate was thought to be when Marci was bleeding during her period, since the endometriosis lesions could be more easily identified as they would be active. Therefore, she stopped further doses of the Lupron and surgery was scheduled when her estrogen levels were at their peak, meaning the endometriosis would be at its most visible.
The surgery was a success. The visible endometriosis lesions were cauterized (ablated) or removed, and the scar tissue was cut (lysed). Now on continuous birth control pills, Marci has been almost pain free for over one year.
How is endometriosis treated?
The goal of the treatment is to reduce pain, improve the chances for pregnancy and reduce any associated side effects from the endometriosis. Estrogen is a major factor in stimulating the endometriosis to grow. Therefore, treatment is aimed at interfering with estrogen stimulation.
Endometriosis can be treated medically and surgically. Your doctor should discuss the treatments with you in detail, as every treatment has possible side effects. Here’s what he or she might suggest:
1 Oral contraceptive pills (cyclical or continuous).
2 Androgens: These are male hormones, like testosterone, which is the opposite of estrogen. A medication like Danazol increases testosterone and lowers estrogen. Beware—androgens can cause weight gain and masculinizing effects, like hair on your upper lip.
3 Gonadotropin-releasing hormones: These prevent the stimulation of the ovaries by your innate (natural) hormones and produce a low-estrogen environment. Lupron, leuprolide acetate, (given to Marci) is one such medication.
4 Progestins: Progestins stimulate progesterone receptors, helping to prevent ovulation and to lessen menstrual bleeding.
Are the symptoms the same for everyone?
The course of endometriosis varies from person to person. Marci’s odyssey was severe. In fact, one-quarter of women don’t have symptoms and might not even suspect a problem until they try to get pregnant and have trouble. Of those women with symptoms, pain can be mild or intense, like Marci’s. The pain can be cyclical, occurring in relation to the menstrual cycle (often before your period), or it can be constant.
In up to one-third of women, the intestinal tract (usually the surface of the small and large intestines) houses these rogue cells. When endometriosis involves the colon or the small intestine, 40 percent of women experience constipation; 33 percent, diarrhea; and 5 percent, both diarrhea and constipation. Rectal pain during a bowel movement can be severe, and bleeding from the rectum can occur. It’s little wonder that the diagnosis of irritable bowel syndrome is so often made in women who actually have endometriosis. A woman might even mistakenly be given the diagnosis of ulcerative colitis or Crohn’s disease when she has bleeding from her rectum due to endometriosis.
Where does this pain come from?
The pain brought on by endometriosis is due to a variety of causes.
1 Irritation of the nerves occurs. When the endometriosis grows, it acquires a nerve supply and irritation of the nerves can cause pain.
2 Blood is an irritant. When the endometrial tissue bleeds due to hormonal stimulation, the blood can cause all sorts of inflammatory cells to migrate into the affected area.
3 Inflammatory cells release compounds that can cause pain. These substances stimulate nerves or cause pain directly by inducing inflammation, just like when you get a bad cut that develops inflammation around it. There are medications that act directly against the formation of these substances. These include aspirin, ibuprofen (Motrin), naproxen (Naprosyn) and sulindac (Clinoril). We use them to prevent menstrual cramps and for other aches and pains.
Do women with endometriosis tend to get other illnesses more often than women without endometriosis?
According to a survey conducted in 1997 by the Endometriosis Association, many conditions are found to occur more frequently in women with endometriosis. The most common coexisting conditions are allergies and asthma. Women with endometriosis also have a high prevalence of hypothyroidism, fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, systemic lupus erythematosus, Sjögren’s syndrome (dry eyes and mouth) and multiple sclerosis.
Is there a diet that I can follow that can help the endometriosis?
Maybe. The data suggest that diets may help, but there are few good studies. Here’s what I know.
In Japan a study showed that women who ate dietary soy isoflavones, which come from soybeans (tofu, for example), had fewer cases of advanced endometriosis, but the consumption of soy isoflavones did not affect the risk for early endometriosis. Soy isoflavones have estrogen-like activity but also can have weak antiestrogen properties. In this case, it was speculated that the antiestrogen properties decreased the risk for advanced endometriosis. Fish oil decreases the size of the endometriosis lesions in animals but hasn’t been shown to decrease the risk for endometriosis or the size of endometriosis lesions in women.
Do probiotics help?
I wish I could tell you definitively, but I can’t. The only evidence that suggests they might help is that the types of bacteria in the guts of monkeys with endometriosis are different from those in healthy monkeys. In monkeys with endometriosis, there are fewer lactobacilli. Whether or not endometriosis can be improved by taking probiotics containing lactobacilli just isn’t known.
Are there any alternative treatments that work for endometriosis?
As any woman with severe endometriosis will tell you, it’s worth trying anything! But there aren’t any solid trials evaluating alternative treatments. In a self-report of 1,160 women responding to an Endometriosis Association survey, many different treatments were highlighted, including whole medical systems and energy medicine (including acupuncture, traditional Chinese medicine, candidiasis treatment, homeopathy and naturopathy, ayerveda reiki), mind-body medicine, biologically based therapies (including ingestion of dietary supplements, diet-based treatment and ingestion of herbs), and manipulative and body-based therapies (including exercise, chiropractic manipulation and massage therapy).
Biologically based therapies (use of substances found in nature) (52 percent) and manipulative and body-based therapies (based on manipulation and movement of one or more parts of the body) (41 percent) were commonly used. The self-reported improvements were 74 percent for therapy with mind-body medicine (techniques to enhance the mind’s capacity to affect bodily function and symptoms) and 53–66 percent for therapy with many of the whole medical systems (complete systems of theory and practice), energy medicine (use of energy fields) and biologically based therapies. The manipulative and body-based therapies overall were reported to be less helpful, with 35 percent of women reporting improvement. However, without good studies, I can’t recommend the alternative therapies just yet.
I have endometriosis. Do I have to worry about getting cancer, too?
If you have symptoms that are unusual or bothersome, certainly get them checked out. You should also have the routine recommended screening tests for cancers, such as PAP smears, mammograms and colonoscopies. There are some differences in cancer rates for women who have had endometriosis. In a very large study from Sweden that looked at the rate of diagnosis of cancer after a hospitalization for endometriosis, the overall rate of cancer was not increased. However, some tumors were slightly more common, and one—cervical cancer—was less common. The cancers that had about a 25–37 percent increase in incidence were ovarian, endocrine, thyroid, brain and kidney cancer, and malignant melanoma. Colorectal cancer was not examined but may be slightly more prevalent. Breast cancer was barely increased, possibly due to the fact that we screen so vigilantly these days.
Lately I’ve been needing to pee—constantly. Judging by my sex life, I’m sure I’m not pregnant. My mother wants me to get tested for ovarian cancer, just in case. I had no idea constant urination was even a symptom! Could I have it?
Probably not. Frequent urination is more often a symptom of other problems. It could be a symptom of a urinary tract infection or diabetes mellitus, or it might be associated with irritable bowel syndrome or interstitial cystitis. Burning with urination also occurs in almost half of all women with endometriosis. It’s important to make sure that you don’t have an infection by getting a culture of your urine and to make sure you don’t have diabetes mellitus by having the sugar checked in your urine or blood. In the United States, females have a 1.4 percent lifetime chance of developing ovarian cancer. More than half of the deaths from ovarian cancer occur in women between the ages of fifty-five and seventy-four years. Still, it’s important to be aware of the symptoms. If something feels unusual for your body, please tell your doctor! Many symptoms overlap with gastrointestinal issues. See your doctor if the following symptoms are constant or worsening:
Bloating throughout the day, especially requiring a larger waist size on your pants
Pelvic or abdominal pain
Difficulty eating, feeling full quickly or weight loss
Urinary symptoms (urgency or frequency)
Frequent pain with intercourse
If I decide to get tested for ovarian cancer, what’s going to happen?
It’s important to remember that we want to rule out the zebras—or more unusual diagnoses—in the hopes of finding what we call horses, or more common ailments. Here’s what you can expect.
Pelvic exam: Your doctor will feel your cervix, uterus and ovaries. She may do a Pap smear, which evaluates for cervical and uterine cancers or changes in their cells, but not for ovarian cancer.
Pelvic ultrasound: This will take a “picture” of your ovaries and analyze what might account for that full, bloated feeling. It does not involve any radiation, just sound waves. Usually part of the test involves putting an ultrasound probe in the vagina, which may show the ovaries better. If there are growths, the ultrasound can’t always determine if these growths are likely to be cancer.
CT scan: This test uses X-rays to examine part of the body. It allows smaller problems to be detected. It visualizes the ovaries and uterus, as well as the bowel, lymph nodes and the spaces around them. A CT scan for ovarian cancer often includes an examination of the abdomen, as well as the pelvis. In that case, oral contrast is given to you to drink so that the bowel will stand out from the surrounding area. When the abdomen is examined, the liver, kidneys, spleen and pancreas are also seen. Often the radiologist doing the test will want to better visualize the blood vessels. This is done by an injection of dye into your arm. The dye contains iodine. So if you are allergic to iodine-containing substances, be sure and tell the doctor, as you will likely be allergic to the dye. Also, if you have any problems with kidney function, be sure to tell the doctor, as he or she might not want to do this part of the test.
MRI scan: This scan uses a magnetic field instead of X-rays to view the internal organs. It sees soft tissues very well. The best test is done with an enclosed scanner, where you’ll hear a lot of banging. (If you’re claustrophobic, speak up.) An injection of gadolinium (an element used as a contrast agent in MRI scans) is often done to see the blood vessels. Your kidney function should be confirmed as normal before you are given gadolinium, particularly if you have any problems that could affect the kidneys, like high blood pressure, diabetes mellitus, lupus, dehydration or kidney diseases.
Blood tests: A blood count (CBC) looking for anemia and liver function tests are commonly done. In fact, there is a blood test (CA-125) that had been touted to diagnose ovarian cancer. Unfortunately it is not a good screening test and has not been recommended as a routine screen in most people. CA-125 can be falsely high in someone who does not have ovarian cancer and falsely low in someone who does have ovarian cancer. On the other hand, CA-125 is often used to detect early recurrence of cancer in someone who had a high CA-125 with the original cancer and has had her ovarian cancer treated.
Laparoscopy: This is an even more precise test, in which a thin viewing tube (called a laparoscope) is placed through a small cut made in the abdomen. Using the scope as a guide, the surgeon takes a sample of fluid and tissue from the growth. These samples are then tested for cancer.
Every month around my period, I get bloated, I cramp and I have horrible diarrhea. I don’t mean to be a big baby, but how can I deal with it without letting it ruin my life?
Well, first remember that you’re not alone: about 85 percent of women suffer from some form of PMS each month, whether or not they have endometriosis. PMS, as defined by the American Congress of Obstetricians and Gynecologists, is “the cyclic occurrence of symptoms that are sufficiently severe to interfere with some aspects of life, and that appear with consistent and predictable relationship to the menses [menstrual period].” Only about 3 to 8 percent of women have severe symptoms. PMS symptoms may include upset stomach, bloating, constipation or diarrhea, appetite changes, mood disturbances, joint pain, headache and acne.
Changes in bowel habits during menstruation are reported by many women (34 percent in one study), and the symptoms are cyclical in almost 30 percent of women. At the time of menses, gastrointestinal complaints that women report are increased gas (14 percent), increased diarrhea (19 percent), and increased (11 percent) and decreased (16 percent) constipation.
One big tip—get enough calcium! A calcium supplement with vitamin D helps ease some symptoms of PMS. If you’re between the ages of eighteen and fifty, you need at least 1000 mg of calcium per day. If you’re older than fifty, you need 1200 mg. Eat plenty of fruits and vegetables, and get enough whole grains. Avoid alcohol and caffeine. They’ll exacerbate your troubles.
For the bloating, try enteric-coated peppermint capsules before meals, although if they cause heartburn, you should stop. Loperamide (Imodium, one half to two tablets) could help treat or prevent the diarrhea, though too much can cause constipation. Pepto-Bismol is also worth a try—two tablespoons or tablets up to four times per day. Remember your stool and tongue may turn dark or even black after using it, but this is a harmless side effect.
I’m going to have a hysterectomy, and I’m worried that it might affect my bowels. I am already somewhat constipated. Will I get worse?
Probably not. Chronic constipation after a hysterectomy, unless it is an extensive operation for cancer, is not common. One study reported less frequent bowel movements, more laxative use, harder stools and constipation after hysterectomy, but this was not statistically more significant than in women who have not had hysterectomies. In more recent studies, no increase in constipation occurred in women without GI symptoms who underwent a hysterectomy. Furthermore no increase of IBS occurred after a hysterectomy in women without GI symptoms before surgery. Overall, movement of the stool through the colon does not change as a woman gets older, but the signal to let you know the stool is waiting to come out does decrease with age, unfortunately.
Can endometriosis come back?
Unfortunately, the likelihood that endometriosis will return is high. Five years after a patient has stopped medications to treat endometriosis, the recurrence rate is over 20 percent. Endometriosis and the pain associated with it can even recur after a successful ablation (cautery) or hysterectomy. The recurrence rate after surgery is higher when the ovaries (even one) are left or the endometriosis was severe, in which case it recurs in 30 to 47 percent of women. Of over eleven hundred women who had endometriosis diagnosed by surgery and who responded to a 1998 Endometriosis Association survey, 42 percent underwent surgical procedures for endometriosis at least three times.
You always have to be aware that recurrence is a potential problem. A cure of the endometriosis can only be assured if all estrogen, which can stimulate the endometriosis, has been removed. This occurs if a woman has both of her ovaries removed or goes through menopause. However, if one ovary is left behind after endometriosis surgery to prevent a woman from getting hot flashes or other symptoms related to menopause, the endometriosis can continue to be stimulated.
This problem often goes unrecognized. Women are told that they had a hysterectomy and that should “cure” the endometriosis. Not always! They don’t know that a hysterectomy can involve removing only the uterus or removing the uterus with one or both ovaries. If you switch to a new physician, it’s important for him or her to know right away what kind of hysterectomy was performed.
One such blunder happened with Susan, a forty-one-year-old woman who came to me with abdominal pain and diarrhea. Susan was a tough lady: a survivor of child abuse, she acted largely as a single mother to her handicapped son and her daughter while her husband traveled on business. She also worked full-time in a doctor’s office. An avid athlete, she’d begun to curtail her activities because of her bowel problems, and her weight was fluctuating wildly. “I’m no use to anyone,” she cried on our first meeting. “I feel like I’m in the twilight zone.”
She was referred to me for a second opinion regarding her diagnosis of Crohn’s disease. (Crohn’s disease is a chronic inflammatory bowel disease. Crohn’s can affect any part of the GI tract, and symptoms vary by patient depending on where the inflammation occurs. Symptoms can include constipation, diarrhea, abdominal pain, vomiting, weight loss or weight gain, and gastrointestinal bleeding.)
When I met Susan, she was clearly at a low: She’d have just a sip of water, then suffer diarrhea. She was having six to ten yellow, watery bowel movements every day, in spite of taking Imodium daily. Plus, she often woke up with fevers, which caused headaches and confusion. She was still able to work as an office manager at the doctor’s office, but her weekends were consumed with sleep. Her eyes were inflamed, and her back was afflicted with arthritis. She also had hip, neck and leg pain, as well as sores in her mouth and a sore on her neck.
Susan had developed abdominal pain, rectal pressure and cysts in one of her ovaries after a hysterectomy for endometriosis a few years prior. She was treated with a large amount of Anaprox (a nonsteroidal anti-inflammatory drug like aspirin) for pain. She tried to tell doctors that the rectal pain reminded her of how she felt before her hysterectomy, but they brushed it off.
Shortly thereafter, Susan began to experience bloody diarrhea. She was admitted to her local hospital. A colonoscopy showed inflammation in her rectum at the end of her colon, and she was told that she had ulcerative colitis. She was treated with a steroid, prednisone, which has many possible side effects, such as diabetes, acne, and weight gain with short-term usage and bone loss and cataracts with long-term usage. Susan’s symptom complex of abdominal pain, rectal pressure or pain and frequent stools occurred almost monthly. She was taking up to nine medications per day and still having a minimum of six bowel movements every day, too. She was also seeing an array of doctors, including a rheumatologist and an ophthalmologist, for side effects brought on by the steroids. Her weight was also fluctuating between 110 pounds (without steroids) and 150 pounds (with steroids). The steroid was eventually tapered down and stopped, and Susan was changed to a nonsteroid compound. She did well for a while, until she developed diarrhea, a whopping twenty-five times per day. She was treated with steroids yet again, despite the fact that she didn’t even have colitis and had experienced side effects previously.
“I now have eye inflammation, arthritis and decreased calcium in my bones,” she told me at our meeting. “Both specialists, a rheumatologist and an ophthalmologist, say it’s from all the steroids and various other drugs. I am seeing a total of six doctors! Why can’t I get better? The steroids are killing me. Still, I take them, then taper. My weight is going up and down. My old GI doctor is insisting that I have to comply and take the drugs. I tried to ask if it was endometriosis, but he’s insisting it isn’t.”
Susan was somewhat lucky; thanks to her medical background, she knew what kinds of questions to ask. Still, she was seeing so many doctors and taking so many different medications that it was tough to get a clear picture of what was going on. And her doctor had overlooked the strong possibility of endometriosis, which I began to suspect.
I carefully considered her family history: a mother with breast cancer; two aunts with endometriosis, breast cancer, colon cancer and ovarian cancer; another with uterine cancer. Susan also had six older brothers, one of whom had Crohn’s disease and another who had adult-onset diabetes mellitus and obesity. Susan herself had suffered from irritable bowel syndrome as a teenager.
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.
