When is hysterectomy a woman's only option for treating endometriosis?
Hysterectomy used to be a much more common treatment for endometriosis than it is today. However, it may still be necessary when other avenues of treatment have failed. Many times, physicians will also recommend removal of both ovaries (bilateral oopherectomy) at the time of hysterectomy because some studies suggest this results in greater long- term pain relief.If you spend any time with women who have this disease, you realize what a difficult decision this is. I've heard positive hysterectomy stories as well as negative ones. At our most recent meeting, one member told me she felt that having a hysterectomy was the only way she could get her life back. Another member had a different opinion and felt she had traded one set of problems for another. Unfortunately, there are no right or wrong answers with endometriosis treatment, only difficult decisions.
Having a hysterectomy is often very emotional because women may view it as a loss -- not only of reproductive organs, but also as loss of control over our bodies and this disease. Even after definitive surgery, many women still have health- related issues to contend with, the most significant of which is hormone replacement decisions. There is a theory among some endometriosis specialists that hormone replacement should be delayed for a time following hysterectomy and removal of ovaries to allow the endometriosis lesions to "die out." (Estrogen is usually thought of as the hormone that influences the growth and development of endometriosis.) But other specialists don't agree, and begin hormone replacement immediately in order to take advantage of estrogen's heart- protective and bone- protective benefits. Women in the support groups have discussed the merits of natural hormone replacement for endometriosis, but little data exists on this topic.
There is also the question of whether hysterectomy is the answer for everyone. In our support group, we have a few members who continue to suffer with continued symptoms and documented existence of the disease even after hysterectomy and bilateral oopherectomy.
I have personally found the following chapters from The "Endometriosis Sourcebook" to be invaluable in my own decision making process regarding this issue: Hysterectomy and Endometriosis: Overview (p.101), Hysterectomy: The Loneliest Decision of All (p. 109), The Thorny Issue of Hormone Replacement for Endo (p. 125), and Does Hysterectomy and Removal of the Ovaries Offer a Cure for Endo? (p. 130)
Does endometriosis cause infertility?
Clearly, when endometriosis affects reproductive organs -- such as when adhesions block the fallopian tubes or when an endometrioma on the ovary prevents ovulation -- then fertility is compromised. However, endometriosis can also be very subtle in the way it affects our bodies. Some recent studies show that the mere presence of endometriosis (at any stage) may be responsible for implantation and immune system problems in some women. Whether Stage I or Stage II endometriosis causes infertility has been debated for some time, but a recent study gives more definitive evidence that minimal or mild endometriosis can affect fertility. The study showed that laparoscopic surgery performed on infertile women with mild or minimal endometriosis does enhance fertility. (Reference: Laparoscopic surgery in infertile women with minimal or mild endometriosis, S. Marcoux et al., New England Journal of Medicine, 337:217-222)Researchers have also found that women with endometriosis are at increased risk for elevated levels of APA (antiphospholipid antibodies), which has been linked to recurrent miscarriage, intrauterine growth retardation, and pre- eclampsia. Apparently, the antibodies don't cause the problems, but their presence indicates something is wrong with the auto immune system. Women can be tested for these antibodies, and treatment usually consists of aspirin or low- dose heparin. Additionally, research has linked beta- 3 deficiency with endometriosis (beta- 3 is needed for implantation). A few labs can test for this. There are other, even more subtle things that endometriosis might do. It may increase the macrophages (natural scavenger cells) in our peritoneal fluid which may kill off sperm, egg, or embryo. One study linked endometriosis with production of poorer quality eggs.
However, not all endometriosis women are affected in these ways. And even among those who are, many are still able to conceive. In fact, the majority of women with endometriosis can get pregnant if that's their desire.
