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Questions and Answers
Q: In 2002, the surgeon found endometriosis on my uterus and removed the uterus, although I retained my ovaries. Recently, I have had difficulties with urinary tract infections. How does a doctor determine if any of the endometrial tissue has grown back? I worry this may be the cause of the urinary problems I have been experiencing.
A: Hysterectomy is not the traditional treatment for endometriosis. The primary reason is that it is not a cure for the disease, which is the growth of uterine tissue outside the uterus. That tissue is stimulated by estrogen, the majority of which is released by the ovaries. The uterus doesn't release any estrogen. The only reason I can think of for performing a hysterectomy because of endometriosis is if the endometrial tissue on the outside of the uterus was so severe that removing the entire organ was the only way to resolve it.
However, what's done is done, right? Nonetheless, it is important that you understand that removing your uterus doesn't mean your endometriosis is gone. It can exist in numerous other areas throughout your pelvic cavity. Yet while there are reports of endometriosis on the urethra (the tube from the bladder to the outside of your body through which urine passes) and even on the bladder itself, it is pretty rare. Thus, it is highly unlikely to be the cause of your UTIs.
If you're having recurrent urinary tract infections, talk to your health care professional about other causes. These could include not emptying your bladder enough; frequent and intensive sexual activity; even wearing underwear that is too tight. All can allow the introduction of bacteria into the bladder, leading to a painful UTI.
Share your concerns with your health care professional, particularly your worries about endometriosis causing the UTIs. Also talk about what you can do to prevent further UTIs. A few things that might help: Try to urinate every two to three hours, even if you don't feel you have to. This keeps urine moving through the urethra, keeping bacteria at bay. Also drink a glass of cranberry juice every day (the less sugar the better). Cranberry juice actually helps prevent UTIs by making the urine more acidic and, thus, less hospitable to bacteria. You can also talk to your health care professional about the possibility of prophylactic antibiotics that you take to prevent a UTI.
Between your health care professional and you, I'm sure you can get to the bottom of this problem.
Posted 6/18/2008
Q: I am 24 years old and have been dealing with endometriosis for four years. I have had four laparoscopies and have been on a slew of medications with little relief. My doctor has mentioned removing my ovaries. Are there any benefits to this surgery? What are the drawbacks, particularly given my age?
A: Wow, you have really been through a lot for someone as young as you are. Although I do not know the specifics of your case and so cannot comment specifically on it, I would urge caution before agree to anything as drastic as removing your ovaries. The use of hysterectomy (removal of the uterus) with bilateral oophorectomy (removal of the ovaries) is extremely radical surgery and is rarely performed in women your age who do not have cancer.
That's because removing the ovaries immediately puts you into surgical menopause. Surgical menopause can cause much more severe hot flashes, night sweats and other menopausal symptoms than natural menopause, which typically occurs around age 52. You will likely require supplemental estrogen for nearly 30 years to manage those symptoms and prevent osteoporosis and other conditions that can occur when your body's supply of estrogen is suddenly cut off.
Then there are the risks of the surgery itself. Studies find that women under 30 who have a hysterectomy for pelvic pain and endometriosis are more likely to report residual symptoms, such as painful sex and urination. They also report a significant sense of loss and more overall disruption in their lives than women over 40 having the procedure. In addition, women who have their ovaries surgically removed before age 65 have a shorter lifespan on average. Finally, any endometrial lesions left after hysterectomy could continue to cause you pain, particularly if you take supplemental estrogen.
One of the most important things to consider, of course, is that removing your ovaries and uterus means you can never carry a child of your own, not even with the help of assisted reproductive techniques.
You say you have been on a "slew" of medications; has your doctor suggested trying an IUD that releases progesterone? Studies find its use reduces pain and bleeding, even up to a year after it is inserted.
Before you do anything, please see another doctor and get a second opinion. One thing that is important to consider is whether your pain may be the result of other medical conditions. Studies find that even in women with evidence of endometriosis, other medical conditions may be the cause of their pain. This could help explain why the therapies you've undergone have not worked.
Take your time and consider all your options carefully. Unlike medication, a hysterectomy and oophorectomy cannot be reversed, and you are very young to be making such a life-altering decision.
Posted 5/21/2008
Sources:
Martin DC. Hysterectomy for treatment of pain associated with endometriosis. J Minim Invasive Gynecol. 2006;13(6):566-572.
Q: What is the best way to talk to my health care professional about my pelvic pain? Sometimes my symptoms make me feel like I'm crazy, and I don't want to sound crazy when I describe them.
A: First, know that you are not crazy, although I'm not surprised you feel that way. Surveys find that it often takes 10 years between a woman's first symptoms of pelvic pain and a diagnosis and treatment. During that time, women often see several doctors and often have their pain minimized. Here's what one woman wrote in response to a researcher's request for narratives about chronic pelvic pain after she had been referred to an ob-gyn: "That's when I really felt like a hypochondriac. He was lovely, and I am sure that he did not mean to be condescending. 'Hello Mrs. N, you seem to be a mystery. You've certainly done the rounds on seeing doctors so you have ended up with me to find out what's causing this pain.' Here we go again; he thinks it's all in the mind."
This particular study found that women felt their version of "reality" was not believed, that the doctors failed to acknowledge their pain, and that the doctors were "dismissive in attitude." Bottom line: Many women with chronic pelvic pain feel their health care professionals do not "hear their stories."
So here's my advice. First of all, if you feel that your health care professional is not listening to you, and you have made this clear, it may be time to find another provider. You deserve to have your pain taken seriously, even if no overt cause can be identified. Having said that, it is important that you do whatever you can to help your health care provider identify any possible causes of your pain. A good idea is to track your pain in a monthly diary, ranking the level of pain from 1 to 5, with 5 being so excruciating you can't function and 1 being the level of mild menstrual cramps. Also note anything you were doing that might be related to the pain. For instance, did the pain occur during or after intercourse? After eating a large meal? During menstruation?
During the conversation with your health care provider, remain calm. Bring notes with you if you think that will help. Even try writing a narrative of your story, from the time the pain first began to the help you've sought and the steps you've taken to address the pain. And don't be afraid to tell your provider what you think is causing your pain. Did you have pain like this during a previous ectopic (tubal) pregnancy? When you had an ovarian cyst? This gives your health care professional a starting point for diagnosis.
It is also important to talk honestly with your health care professional about any abuse or sexual trauma you have experienced in the past or that may be occurring now. Such trauma can be a cause of pelvic pain.
Finally, don't give up! There are good options for treating chronic pain, regardless of the cause, and you deserve relief.
Posted 5/1/2008
Q: I have endometriosis. Does this increase my risk of breast, ovarian or uterine cancer?
A: You ask a very good question. First, let's look at the similarities between these cancers and endometriosis. All are related to estrogen. Estrogen stimulates cell division in the ovaries, breasts and uterus. Over time, those constantly dividing cells might make a mistake, leading to cells dividing uncontrollably, i.e., a cancer. Endometriosis, on the other hand, is the presence elsewhere in the body of tissue that normally lines the uterus. This tissue also grows in response to estrogen, and the disease itself is dependent on the presence of estrogen.
Let's start with breast cancer. A major study evaluating data on 114,327 women seen in the hospital or in an outpatient setting in Denmark found that women whose endometriosis was diagnosed before age 40 actually had a reduced risk of breast cancer, while women whose endometriosis was diagnosed between age 40 and 50 had a risk of breast cancer about 14 percent higher than women the same age who did not have endometriosis. Women diagnosed at age 50 or older, however, were more than twice as likely to develop breast cancer as women the same age who did not have endometriosis.
As for ovarian cancer, another large study looking back at data from more than 700,000 women found those with endometriosis were 43 percent more likely to develop ovarian cancer and non-Hodgkin's lymphoma. Women who had endometriosis present on the ovary had the highest risk of ovarian cancer. This study also found that women with endometriosis had higher risks of breast, brain and endocrine cancers, such as cancers of the pituitary or thyroid glands, but a reduced risk of cervical cancer. They did not have any increased risk of uterine cancer.
Rather than being frightened by this information, you should take it as a warning to be hypervigilant about cancer screenings like mammograms. You should also be very aware of the early signs of ovarian cancer: bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly and feeling a frequent or urgent need to urinate. If you've had any of those problems nearly every day for more than two or three weeks, see your health care professional.
Also make sure you tell all your health care providers that you have endometriosis, and that there is some evidence of an increased risk of certain cancers with the condition. This will help them to be on their toes when it comes to evaluating you for possible cancers—and you will also know to be vigilant.
The other thing you should do is follow all the recommendations for reducing your risk of cancer: Eat a diet high in fruits and vegetables and get some form of physical activity most days of the week for at least 30 minutes a day.
And remember: These risks are all across thousands of women. Your own individual risk is the only one you should worry about, and it may be quite different than what these studies found. My best advice: Make an appointment with your health care provider to discuss your own personal risk of breast or ovarian cancer.
Posted 3/3/2008
Q: What is ovarian remnant syndrome?
A: Ovarian remnant syndrome (ORS) occurs if any ovarian tissue is left after surgery to remove both ovaries and fallopian tubes, called a bilateral salpingo-oophorectomy. The syndrome occurs if this ovarian tissue causes severe pelvic pain and/or a pelvic mass.
The condition typically occurs because of the surgical technique used to remove the ovaries. Although ORS is considered fairly rare, its incidence appears to have increased in the past 40 years, possibly related to the increased use of laparoscopic surgeries.These surgeries allow the surgeon to operate through two or three tiny incisions instead of a large abdominal incision.
Certain factors increase the risk of incomplete ovarian removal, including a history of endometriosis, pelvic inflammatory disease, previous abdominal or pelvic surgeries and pelvic adhesions. Adhesions are scar tissue that forms after pelvic or abdominal surgery and "sticks" to organs and other tissue. Adhesions make it difficult for the surgeon to completely identify and remove the ovaries because of the fibrous tissue that binds an ovary with the other structures or with the peritoneum, the membrane that covers the inside of the abdomen and pelvis.
If any ovarian tissue is left in your pelvis, it can, in some instances, continue to produce hormones.
The most common symptoms of ovarian remnant syndrome are constant, chronic pelvic pain, difficult or painful intercourse, cyclic pelvic pain, and painful urination and bowel movements.
The condition is diagnosed based on a careful medical history. One sign that there may be residual ovarian tissue is if after your ovaries were removed, you didn't immediately start hormone therapy but didn't experience menopausal symptoms, such as hot flashes. This would suggest that you may still be producing estrogens. An alternative situation is if after surgery, you started hormone therapy and then discontinued it for some reason but didn't experience these symptoms.
Your doctor may also perform an ultrasound, CT scan or MRI to identify any ovarian tissue or pelvic mass and may measure blood levels of follicle-stimulating hormone (FSH) and estradiol. Estradiol is produced by the ovaries and FSH by the pituitary gland in response to hormonal signals from the ovaries. Levels of estradiol should be very low and levels of FSH should be very high after both ovaries have been removed.
If your doctor does find ovarian tissue remnants, you may be treated with medication to suppress any ovarian function, surgery to remove the tissue, or, as a last resort, radiation to destroy the tissue.
Posted 2/15/2008
Q: I'm 32 years old and have been diagnosed with endometriosis, which is interfering with my ability to get pregnant. I've been reading about the influence of free radicals in endometriosis. Can you explain what this is?
A: First, let's define free radicals. The simplest way to think about them is as the byproducts of living. They're like the exhaust your car releases after burning fuel, only in your case the fuel is oxygen. So every time you breathe, move, eat, etc., your system creates these rogue molecules. I call them "rogue" because they're missing an electron, so they're very unstable, like a four-legged table that's missing part of one leg. To compensate, they go looking for electrons to steal from normal molecules. Since molecules make up cells, this can damage cells throughout your body.
Luckily, your cells have developed mechanisms to protect themselves from these electron-stealing molecules. They inactivate the free radical, rendering it harmless, limit their production or repair the damage free radicals cause. Other compounds called antioxidants (think vitamins A, E and C, beta carotene and the mineral selenium, as well as certain enzymes) play a major role in helping your body minimize this free radical damage.
You have a problem, however, if you produce more free radicals than you have antioxidants. This can occur in situations of inflammation, illness, excessive stress, etc. This imbalance is believed to play a major role in numerous diseases including heart attacks, rheumatoid arthritis and other immune system disorders, cancer, even aging. Now we're finding they probably also play a role in the development of endometriosis.
Endometriosis is believed to be triggered by inflammation, which occurs when white blood cells rush into an area to get rid of what it believes are threats to the overall safety of that particular part of your body. Some attack the suspected pathogen, others clean up the damage and start the repair process. You've experienced inflammation every time you cut your legs shaving. As the cut heals, a scab forms, the injury may get red and even warm. This is inflammation at work.
As you can imagine, the inflammatory process throws off quite a lot of free radicals. And it seems the antioxidant process in women with endometriosis may be substandard. Laboratory studies find antioxidant enzymes in the uterine lining of women with endometrium don't work properly. Other studies find lower levels of the antioxidant vitamin E in the fluid surrounding the reproductive/abdominal organs of women with endometriosis.
This whole process—inflammation, high levels of free radicals and the resulting oxidative damage, and inadequate antioxidant protection—can affect fertility.
So what does this mean for you? For now, the best advice I can offer is to do what you can to increase your body's levels of antioxidants. The best way to do this is through your diet. Fruits, vegetables and whole grains are your best sources of antioxidants—not vitamins. While a daily multi-vitamin probably won't hurt, a growing number of studies find that taking large quantities of antioxidant vitamins actually backfires, increasing inflammation and free radical damage.
As we learn more about the role of free radicals in endometriosis, expect to see medications developed that address this issue at the cellular level. But until then, you would be wise to follow your mother's advice and eat your vegetables.
Posted 2/5/2008
Q: I had endometriosis for years. Now that I'm past menopause, is there any reason I shouldn't use hormone therapy?
A: If you've had endometriosis for years, then you probably know that it is a condition in which cells from the lining of the uterus—the endometrium—grow outside the uterus. These cells are activated by hormones (estrogen and progesterone) produced by the ovaries in your body. When estrogen is high, the cells are stimulated, causing pain and other symptoms. That's why women with endometriosis find their condition greatly improves once they reach menopause and their body's estrogen production drops.
There are few studies on the effects of supplemental hormones (known as hormone therapy or "HT") after menopause on women previously diagnosed with endometriosis, and the few available focus on women who had surgical menopause (in which the ovaries are removed) or premature menopause (in which the ovaries stop working earlier than normal). Most of these studies show a greater risk of relapse in women who use hormone therapy than in those who don't, although the risk is relatively small (about three percent). The actual risks might be related to the dose of estrogen given; higher doses will increase the risk of recurrence more so than lower doses.
So, bottom line? Talk to your health care professional about your interest in and concern about using HT and about other options for managing any menopause-related or other symptoms you're having. For instance, certain antidepressants can help with hot flashes, while lubricants and targeted hormone therapy (such as vaginal tablets) can help with vaginal dryness. There are also lifestyle options that can make a difference, including something as simple as exercise.
Posted 6/14/2007
Q: My periods have been getting more painful. What could be causing the pain?
A: Pain during menstruation is very common, affecting 40 to 70 percent of menstruating women. The pain, called dysmenorrhea, usually feels like cramping in the lower abdominal area and typically occurs just before or during menstruation. There are two types: primary and secondary.
Women with primary dysmenorrhea find that their pain began soon after they started menstruating in adolescence. This type of menstrual pain is present in otherwise healthy women. Researchers theorize that prostaglandins released during menstruation cause increased uterine contractions, resulting in pain. It seldom lasts for more than two to three days, is often associated with other premenstrual symptoms such as bloating and nausea, and can usually be relieved with non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin or ibuprofen. Some women with primary dysmenorrhea have pain that is caused by an underlying medical condition called endometriosis.
Secondary dysmenorrhea is likely related to an underlying medical condition such as endometriosis, pelvic inflammatory disease (PID) or uterine fibroids among others. It may begin at any time, although it's more common in women aged 20 to 40. It may persist for several days and may be worse when you go to the bathroom. Over-the-counter pain medication usually doesn't help.
If you think you might be experiencing secondary dysmenorrhea or primary dysmenorrhea that is uncontrolled by over-the-counter drugs or oral contraceptives, I urge you to see your health care professional for a complete medical examination. You may have a condition called endometriosis, in which the uterine lining grows outside the uterus; non-cancerous tumors called fibroids; pelvic inflammatory disease, an infection of the fallopian tubes; or an ectopic pregnancy, in which the embryo lodges in the fallopian tube. Other possibilities include ovarian or endometrial cancer, adhesions or other problems of the reproductive tract.
Once your doctor makes the correct diagnosis, there are a variety of treatment options available to relieve your pain, including pain medications, oral contraceptives, hormonal treatments and, as a last resort, surgery. The first step, of course, is identifying the problem.
Posted 3/5/2007
Produced with financial support from TAP Pharmaceutical Products Inc.
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