I can hardly believe it has been four years since I last wrote about the treatment of endometriosis on this site. I was prompted to write because for the first time since I became a doctor 26 years ago, we have a new treatment for endometriosis available.
Once again, it is the end of March, Endometriosis Awareness Month. Since I have been treating endometriosis and chronic pelvic pain for over twenty years, I think about endometriosis all the time. But March always reminds me how many women are suffering in silence, how many women are suffering but speaking up and still not getting treatment and how many women are getting treatment but have not yet found the treatment that works for them.
Endometriosis is a condition in which the same type of cells that grow and bleed in the uterus to make a woman's period are found outside the uterus. These cells also grow and bleed but because they are not in the uterus, they create inflammation that can result in scarring and pain. We do not know why some women get endometriosis but most women do not. Exciting research is underway trying to determine if endometriosis has a genetic component or is a type of auto-immune disease or something else altogether. Unfortunately, answers to these questions are in the future. Fortunately, we have quite a few options for treatment in the meantime.
Endometriosis can be difficult to diagnose. Some women have no symptoms. If you are found to have endometriosis but do not have any symptoms, you probably do not need any treatment at all. Common symptoms are infertility, pain with and before your period, painful ovulation, painful intercourse, painful bowel movements, bloating and abdominal and pelvic pain. If you think you have endometriosis, you are best off seeing a specialist in endometriosis, especially if you have chronic pelvic pain. Whatever doctor you see, make sure your doctor takes the time to find out all your symptoms and chooses the treatment (or treatments) that are appropriate for your symptoms and your desires.
Lifestyle choices and alternative treatments have not been documented to decrease the actual amount of endometriosis present but they can certainly help to decrease both the intensity and the number of days of pain. Daily exercise is a must. Avoiding red meat and avoiding food products treated with hormones may be helpful. Acupuncture can decrease pelvic pain regardless of the cause.
Pregnancy and breast feeding both suppress endometriosis. If you are trying to get pregnant and are not having pain, go ahead and try to get pregnant. If the pain interferes with intercourse, or if you are not pregnant after trying for six months, it is probably time to consider a laparoscopy to evaluate the pelvis and remove any endometriosis found. Some studies suggest that laparoscopic removal of endometriosis not only improves your chances of getting pregnant on your own but also improve your chances of having successful in vitro fertilization (IVF) if you pursue fertility treatments. Other studies suggest that going straight to IVF is successful on it's own. Once you know your insurance coverage, cost sometimes becomes the deciding factor. Either way, your doctor should help you decide what is the best choice for you.
If you are not trying to get pregnant, there are many medical treatments for endometriosis. Most medical treatments are going to take at least three to four months to really work, so you need to be prepared to give each treatment a few months. Birth control pills, rings or patches are great first line treatments for endometriosis. Besides suppressing endometriosis, they confer numerous health benefits including preventing unwanted pregnancy, decreasing anemia, decreasing PMS symptoms, regulating the menstrual cycle and decreasing the chances of developing both uterine and ovarian cancer. Remember that you can have irregular bleeding when you start the birth control pill, patch or ring. By the third to fourth month, bleeding should be regular or minimal. Ideally, you should be able to skip periods and avoid bleeding altogether. When you do want to get pregnant, you can stop the pill and start trying right away--hopefully achieving pregnancy before any endometriosis symptoms return!
Depo-Provera is the three month contraceptive injection that is also excellent treatment for endometriosis and provides most of the same benefits as the pill, patch and ring without having to remember anything except to get your shot every three months. Irregular bleeding may last for up to six months with the Depo-Provera but the bleeding generally gets less and less with time. You should remember that it can take up to a year for fertility to return after stopping Depo-Provera so you want to plan ahead if your plans include pregnancy.
Progesterone intra-uterine devices are also great options to treat endometriosis. If you are going to use the IUD to treat endometriosis, you probably want to use the longer lasting and higher dose devices like the Mirena or Liletta. The device is inserted into the uterus in the office by your gynecologist. It provides direct progesterone suppression of the endometriosis. It is even more effective than the pill at preventing pregnancy and also decreases the risk of uterine cancer. This is a great option for women who want something that will last for 5 years (sometimes longer) and who don't want to have to think about or manage their treatment. IUDs are also immediately reversible so you can start trying to get pregnant almost immediately after having one removed.
Orilissa is the newest treatment for endometriosis. It is an oral gonadotropin releasing hormone (GnRH) antagonist that lowers estrogen levels to produce a pseudo-menopausal state. It is the only treatment that will generally provide pain relief starting in the first month of therapy. Like the birth control pill or an IUD, the effects of Orilissa are rapidly reversible when you stop taking it. There are two doses available so if your symptoms are controlled on the lower dose, you may have fewer side effects by keeping your estrogen levels a little bit higher. The most common side effects are hot flashes. Some women have headaches, nausea or mood changes. While on Orilissa, you must also use birth control. (See the progesterone IUD section above!)
Lupron is a monthly injectable gonadotropin releasing hormone agonist that also induces a temporary menopausal state with similar side effects to Orilissa. Lupron can take a few months to work. Of note, if you are going to use Lupron, you should be prepared for a worsening of symptoms during the first month because Lupron stimulates your hormones before suppressing them. There are also nasal spray GnRH agonists that can be used.
Danazol is a synthetic androgen that also suppresses endometriosis. Side effects can include hair growth, deepening of the voice and enlargement of the clitoris (all things that androgens due). While this may be undesirable for many women, there are others who may actually seek some of these side effects. This is where you really need to have a doctor who is willing to work with you to find the best option for you.
Women with chronic pelvic pain due to endometriosis may need other medications to help control the pain pathways in the central nervous symptom. Many of these medications are used for other disorders like seizure disorders, migraines, depression and anxiety. Amitriptyline, gabapentin, topamax and Cymbalta are some of these.
And, of course, laparoscopy to remove endometriotic implants is available. The only way to definitively diagnose endometriosis is with laparoscopy. If the diagnosis is unclear, if you were helped with surgery in the past, if you are trying to get pregnant or if you have tried medication and it has not helped, surgery may be the best option for you. If you are going to have surgery, please make sure that your surgeon is an experienced laparoscopic surgeon and that he or she is expert at removing (excising) endometriosis.
Finally, I always remind my patients and the residents that I teach of the following. You don't have to try one treatment, then another, then another. If one treatment works but not quite enough, you can add treatments on until the pain is controlled. You can have surgery, have an IUD inserted at surgery and follow the surgery with other medication and pelvic floor physical therapy. For all the women who are suffering, try everything until you find what works for you.
A good doctor who is an expert in the treatment of endometriosis and the treatment of chronic pelvic pain is a must for this very debilitating and frustrating disease. Your doctor should listen to all your symptoms and help you navigate the treatment options to find the one (or the combination of treatments) that is best for you.
Disclosure: Dr. Marin is paid speaker for Abbvie, the maker of Orilissa.