What is it?
Endometriosis is a common female gynecological condition that occurs when cells from the lining of the uterus grow in other areas of the body. The condition can lead to irregular bleeding, pain, and difficulties getting pregnant. Endometriosis is typically diagnosed between ages 25 – 35, although the condition probably begins about the time that regular menstruation begins.
Every month, hormones are produced in a woman’s ovaries that tell the cells lining the uterus to swell and get thicker. These extra cells are removed from the uterine lining each month when you get your period.
Endometriosis results if these cells (called endometrial cells) embed and grow outside the uterus. Women with endometriosis typically have these growths on the bladder, ovaries, rectum, bowel, and on the lining of the pelvic area. They can also occur in other areas of the body.
Unlike the endometrial cells found in the uterus, the tissue implants outside the uterus stay in place when you get your period. They sometimes bleed a little bit. They grow again when you get your next period. This ongoing process can create adhesions, which are bands or sheets of scar tissue that can form around your fallopian tubes, ovaries, uterus, bladder or bowels and leads to pain and the other symptoms of endometriosis. Adhesions may cause pelvic pain, and they may reduce your fertility or make you infertile if they interfere with an egg getting into your fallopian tube, or completely block one or both tubes. They are most dangerous if they interfere with the function of your tubes and you could be at risk for a tubal pregnancy (ectopic pregnancy).
The cause of endometriosis is unknown. One theory is that the endometrial cells shed when you get your period travel backwards through the fallopian tubes into the pelvis, where they implant and grow. This is called retrograde menstruation. This backward menstrual flow occurs in most women, but researchers think the immune system may be different in women with endometriosis.
Symptoms of Endometriosis
- Pelvic pain, typically increasing throughout the month over time
- Painful periods
- Pain during or after intercourse
- Pain with bowel movements
- Pain or cramping before and during menstrual periods
- Pain in the lower back during menstrual cycle
Diagnosis of Endometriosis
The diagnosis of endometriosis depends very much on whether or not you are trying to conceive as well. Some women with early-stage endometriosis have little or zero pelvic pain or fertility issues. We used to diagnose these women when they had a laparoscopy to tie their tubes (there are now less invasive ways to block the tubes in women who are done with childbearing).
The ‘gold standard’ for diagnosis is still to perform a diagnostic/operative laparoscopy, an outpatient surgery performed under anesthesia where a small incision below your belly button allows us to pass a surgical telescope into your abdomen and pelvis and look for endometriosis and often destroy or cut out endometriosis if we find it. More advanced endometriosis may show up on pelvic ultrasound (a sonogram which is best performed with a transvaginal probe), but early-stage endometriosis will not show up on ultrasound. If you are trying to conceive, a hysterosalpingogram (HSG) does not ‘see’ endometriosis but looks for blocked tubes or scar tissue around the tubes, which can occur in women who have endometriosis, as well as for other reasons like past infections.
If you have just been diagnosed with endometriosis and are ready to conceive it is recommended that you see a Fertility specialist no matter what your age is, or how long you have been trying so far. Even if the endometriosis was diagnosed by laparoscopy and treated at the same time we will check out your ovarian reserve (the number of eggs left in your ovaries). Even some women in their early 20’s with endometriosis have badly reduced ovarian reserve. This can be tested by a sonogram of your ovaries looking at the size of your ovaries and number of small egg-containing follicles (Antral Follicle Count), and blood tests including FSH, Antimullerian Hormone (AMH) and the Clomid Challenge Test. You may look great on these tests but it’s good to know either way rather than try for a year then find out there’s a problem.
If you were diagnosed with endometriosis by laparoscopy your MD may have done a dye test of your tubes (chromotubation) to make sure both sides are open, as well as checking for scar tissue (adhesions) around the tubes or ovaries which can make it harder to get pregnant. If not, an X-ray dye test of your tubes (hysterosalpingogram or HSG) should be done.
Endometriosis and Infertility
Many women with endometriosis will conceive, but some will have a harder time getting pregnant. It depends on how bad the endometriosis is, and whether or not the endometriosis has caused low egg supply (diminished ovarian reserve), or caused scar tissue around your tubes or ovaries or blocked tubes. Some women get both low egg supply and tube problems.
Some women with endometriosis have no problems getting pregnant (for example a woman with 3 kids getting a laparoscopy to have her tubes tied may have a couple of spots of endometriosis inside her pelvis), and some women with endometriosis have a very hard time getting pregnant and may need more aggressive fertility treatment compared with women their age without endometriosis.
Treatment of Endometriosis
The treatment for endometriosis varies depending on whether you are trying to conceive or not. If you’re not trying to conceive and your main problem is pelvic pain, while it’s more satisfying to have a ‘proven’ diagnosis, it is acceptable to treat the pain with medications (Depo-Lupron shots) without performing a laparoscopy first.
Birth control pills can help with the endometriosis symptoms, and are often the ‘first-line’ hormonal treatment for endometriosis. Birth control pills contain estrogens and a progestin – progestin is an artificial form of progesterone which can reduce monthly growth of the uterine lining (endometrium) and can reduce growth of endometriosis implants which are outside the uterus, in your pelvis. Birth control pills reduce your ovaries’ estrogen production, and estrogen hormone is known to stimulate the growth of endometriosis. This treatment does not make endometriosis disappear, but is trying to make the disease less active, hopefully reducing pain.
Androgens (male-type hormones) also suppress endometriosis but may have bad side effects, such as deepening of the voice (rare) which does not get better if you stop treatment – so they are not used much anymore.
The ‘gold standard’ (best available) hormonal treatment is Depo-Lupron. This is an injectable medicine which can be given every month or every 3 months at our office. This puts you into a temporary, reversible menopause-like hormonal state where your body stops producing much estrogen from your ovaries – this takes away the hormonal stimulation of the endometriosis and can really make it ‘go quiet’ but not permanently go away. Side effects, include hot flashes, irregular bleeding and then no periods. Bone loss (osteoporosis) can be reduced by taking a daily progestin pill, with calcium and Vitamin D supplements to reduce bone loss and bone scans to monitor bone density if long-term treatment is needed. Some of our patients are pain-free for months or years on this treatment.
An alternative to Depo-Lupron is a pill called an aromatase inhibitor such as letrozole (Femara). This blocks estrogen production by your ovaries and the endometriosis tissue itself (which has the ability to ‘make its own estrogen’). This is a daily pill, and is easy to start and stop compared with Depo-Lupron. It can also be given along with a progestin.
In the near future we will have pills which have a similar effect to Depo-Lupron shots (oral GnRH antagonists) giving us another option …
If you are trying to conceive, having endometriosis may change the course of your treatment in subtle or obvious ways. Having endometriosis (and surgical endometriosis treatment) may cause diminished ovarian reserve (low egg supply), scarring around the tubes or pelvic adhesions (scar tissue), or both. Some women with endometriosis need in vitro fertilization (IVF) to deal with these issues, and Depo-Lupron shots before IVF may improve success rates.
When is surgery required to treat endometriosis?
In general, you only need endometriosis surgery if you –
- Want to have kids and have a large endometrioma (endometriosis cyst within the ovary as well as severe pain)
- Are completely done with wanting kids and wish to have definitive surgery – removal of both ovaries (with or without hysterectomy).
Surgery rarely ‘cures’ endometriosis unless the surgery is removal of both ovaries (with or without hysterectomy). Removing both ovaries takes away most of a woman’s production of estrogen hormone which stimulates endometriosis tissue and causes it to grow.
Any other surgery (laparoscopy with laser treatment or cautery or excision of endometriosis, and/or removal of endometriosis cysts) may not remove all the endometriosis in your pelvis – even if your surgeon destroys or excises all visible spots of endometriosis on the surface of the uterus or behind the uterus, on or in the ovaries or on the pelvic side wall, there may be deeper areas of endometriosis not visible on laparoscopy which are missed. Endometriosis may also be hidden underneath areas of scarring.
Because of the above, some women get good pain relief after surgery to treat endometriosis, and some women don’t get good pain relief after surgery. Women with significant endometriosis (more than just a few spots on the surface of the uterus or ovaries) often do better with surgery to confirm the diagnosis and to treat visible disease, followed by Depo-Lupron injections to suppress any endometriosis that’s left behind, than with surgery alone. Surgery alone may provide short term relief of endometriosis pain (a few months up to a few years) before the disease and pain symptoms recur. Women who undergo multiple laparoscopies may get diminishing returns, with less and less pain relief with each successive laparoscopy.
Depo-Lupron can be used on its own without laparoscopy too – it also (but reversibly) takes away most of a woman’s production of estrogen hormone which stimulates endometriosis tissue. If you have pelvic pain symptoms suggesting endometriosis and your pain goes away with Depo-Lupron you are at least 80% likely to have endometriosis.
If you want to try to conceive and you have only small endometriomas, or early stage endometriosis without any endometriosis cysts visible on ultrasound, the surgery may do more harm than good by damaging some normal ovary tissue, which can reduce your ovarian reserve (the number of eggs left in your ovaries). Most people with endometriosis do not need surgery – it is only definitely needed for big endometriosis cysts or women who are done childbearing and have failed other treatment options. Unless you have both ovaries removed cure is unlikely, but you may get benefit in terms of reducing your pain for a period of time. Medical treatment with Depo-Lupron after surgery often gives better pain control than just surgery. Depo-Lupron can be used on its own without surgery, too.
What should I do if I think I might have Endometriosis?
Our board certified physicians have extensive experience diagnosing and treating endometriosis. If you think you may have endometriosis, or have been experiencing any of the symptoms of endometriosis, you should contact us to set up an appointment.