"Ask Dr. Cook" is a series of questions and answers regarding endometriosis. The current subject and answer can be found on Current Ask Dr. Cook web page. The questions may represent a summary of questions I have been asked by several different patients. I hope you find this information helpful. If you have a question you would like answered, please Submit A Question.

How is Endometriosis Treated?

Question:
I am eighteen years old and I have had tremendous menstrual cramps since the age of twelve. Within the past six years I have seen approximately four or five doctors who I feel did not take me seriously. I have been given drugs such as Anaprox and Ponstel that did not help at all. Within the past eight months I have been put on three different types of birth control pills, none of which have decreased my pain or menstrual flow. Every month I have so much pain that I cannot even move. My doctor told me each time that the pills would decrease the pain and flow, but they have not. I have pain throughout the month and during my menses I have to miss class and work because I simply cannot function. I even missed my prom because of this. It seems as if everyone thinks that I am exaggerating about the pain, but I am not. A friend of mine thinks that I might have endometriosis. If I do, how can I get rid of it and start feeling like a normal person?

Answer:
First and foremost listen to your body and trust your feelings. Women with endometriosis usually look fine on the outside, even though a horrible disease is eating up their insides. Do not let anyone try to dismiss your feelings. Pain that interferes with your life is serious. Unfortunately it sounds like you have had to deal with this for quite a while without the support you deserve. It is important to find a physician that truly understands pelvic pain and knows how to treat it. If you do have endometriosis, the pills often help decrease the symptoms, but as you know this is not always the case. In general, the basic options for treating endometriosis fall into the categories of (1) live with the symptoms, (2) medical treatment, (3) surgical treatment and (4) alternative medical therapy.

Do Nothing
Unfortunately this is what some women have done for many years.

Medical Treatment
   -Nonsteroidal Anti-inflammatory Agents (Motrin, Anaprox etc.)
These are probably the best first line treatment of menstrual cramps and mild endometriosis pain. One method that works fairly well, is to start Anaprox DS twice a day two days prior to the onset of menstrual cramps. This will often help reduce the amount of bleeding as well as the amount of pain.

   -Narcotic pain relief
If the nonsteroidal anti-inflammatory agents do not control the pain then the next step in providing relief of the pain itself is narcotics. While this may relieve the pain or make you so drowsy that you do not feel the pain, the obvious drawbacks include altered mental status (especially important if taking care of kids, trying to drive, work etc.) and can result in dependency or addiction to the narcotics.

   -Birth Control Pills
Birth control pills often help reduce the amount of pain and bleeding associated with mild to moderate endometriosis pain. While the pill does contain estrogen, the overall amount of estrogen a woman receives from the pill is much less than her own body produces during a month. This is why most women experience about a 50% decrease in the amount of menstrual bleeding while on the pill. This usually helps the symptoms for a while, but the pain usually progresses over time to the point that the pain is as bad on the pill as it use to be off the pill. Taking the pill continuously (start a new pack immediately with out taking the sugar pills) is one variant that may help some women. The primary advantage is that most women do not have a period with this approach, which is great if most of your pain is with your period.

   -Depo Provera
This will stop your period, although unpredictable spotting or bleeding is not uncommon. If you pain is primarily with your period it may help reduce the pain although I personally have not had great results with this approach. Depression is a possible side effect of Depo-Provera. The effects of the Depo-Provera last for several months and possibly up to a year.

   -GnRH agonists (lupron, synarel etc)
This is usually a temporary fix (FDA has approved a maximum lifetime usage of 6 mo), can have significant side effects and you need laparoscope first to make the diagnosis of endometriosis. GnRH agonists work by creating a medical menopause. They turn off the signal in the brain that normally sends the message to the ovaries to produce estrogen. The theory is that endometriosis requires estrogen to grow. While estrogen can stimulate the growth of endometriosis, temporarily removing the estrogen does not kill the endometriosis. The endometriosis responds in a similar manner to the GnRH agonists as does the endometrium (the lining of the uterus). It's grow is suppressed but actively returns at completion of treatment as the estrogen levels increase. It is also a misnomer that all endometriosis related pain would go away with GnRH treatment. While GnRH agonists temporarily reduce the activity of the endometriosis, it does nothing the scarring and anatomic changes created by the endometriosis. Unfortunately, I have seen some physicians use GnRH agonists as test to determine if the pain the patient complained of (maybe she's just crazy) was a caused by endometriosis. Finally, GnRH agonists can result in significant bone loss. This is especially important in women who have not achieved an average peak adult bone mass. Treatment of these women with GnRH agonists may place them at a higher risk of osteoporosis, a diseases with potentially devastating consequences.

   -Danazol
Danazol is a treatment that has been around for a long time. It is a modification of a male androgen hormone. It works by creating a hormonal environment that is dominated by androgen effects in place of an estrogen environment. As you might guess the primary side effects are male hormone related, oily skin, body odor, excess hair growth, smaller breasts, possibly lower voice, etc.

   -Megace
This is a medical alternative I have occasionally had success, especially with patients who have exhausted all other medical treatment options and could not or did not what to proceed with surgical treatment. Basically Megace is modified progesterone (the other female hormone). It is most commonly used in the treatment of breast and uterine cancers, but has also been effective in helping endometriosis symptoms as well. It works by tipping the balance to a progesterone dominated hormonal environment. It does decrease estrogen production centrally (at the brain), but not to the same extent as GnRH agonists. The most common side effects are weight gain and nausea, but if experienced wear off quickly after discontinuation of the drug.

   -Fish oil supplement
At least one study has shown a decrease in menstrual cramps in women taking fish oil supplement over the control group (those taking a placebo). I don't know of any studies specifically looking at this treatment in endometriosis patients, but it is an over the counter treatment that can be tried with few side effects.

   -Calcium channel blockers
One study showed a decrease in menstrual cramps in teenage patients with the use of calcium channel blockers. The theory is that some women experience spasm of the uterine blood vessels, in essence cause angina of the uterus. This is not a proven treatment for endometriosis, but patients with endometriosis can have more than one cause of their pelvic pain. This treatment is more likely to help women who have primary dysmenorrhea (several cramps from their first period as a teenager).

Surgical Treatment
   -Laparoscopy (diagnostic &/or therapeutic)

A laparoscope is a surgical instrument that looks like a metal rod that is 1/4 to 1/2 inch in diameter. A laparoscope is used in the diagnosis of endometriosis, but a laparoscope does not diagnose endometriosis. A laparoscope does not treat endometriosis. It is just an instrument. The surgeon uses the laparoscope to make the diagnosis of endometriosis and often to treat endometriosis. The quality of the laparoscopic evaluation and treatment is based on the skill and experience of the surgeon. Not all surgeons are created equal. If the surgeon were an artist, some create masterpieces, while others struggle to finger-paint. If you have a laparoscope performed, have the surgeon video tape the entire procedure. Only then can you and others judge the quality of the evaluation and treatment provided by your surgeon. If the surgeon will not video tape the procedure or will only videotape selected portions of the procedure, why?

   -Laparotomy with microsurgical laser vaporization of endometriosis
If all of the endometriosis can not be removed laparoscopically, then the patient should undergo laparotomy with microsurgical laser vaporization of the endometriosis. The microsurgery allows a more through evaluation and treatment of the endometriosis. It is rare that the uterus or ovaries need to be removed. Some women are told they need a hysterectomy to treat the endometriosis. The uterus itself is rarely involved in endometriosis. Why take out a healthy organ to treat a disease growing next to it? In my experience when a patient undergoes a hysterectomy to treat the endometriosis "because it was so severe" the surgeon is concerned that they are not getting all of the endometriosis and trying to maximize the chance that the patient will not return with painful periods. On occasion, a woman who has finished her family and has experienced recurrent endometriosis following well-documented thorough surgical treatment of endometriosis, may benefit from a hysterectomy. But this is the exception rather than the rule and this very personal decision should be made prior to the surgery. For a more detailed discussion of the surgical treatment of endometriosis please read Surgical techniques in the treatment of endometriosis - "To excise or not to excise".

In conclusion, with the degree of pain you are having you should at least have a diagnostic laparoscopy to help identify the cause of your pain. If you have endometriosis and it is treated your symptoms should improve but you may still experience a fair amount of pain with your periods. Women who have always had painful periods (primary dysmenorrhea) will often continue to have painful periods even after the endometriosis is treated. In this situation I recommend (but do not require) a procedure called presacral neurectomy. This can be performed during treatment of the endometriosis and is effective in decreasing mid line pain (pain in the middle of your pelvis, but not the sides). Good Luck!

Updatede October 29, 2005