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As many of you know, I spend a fair amount of time involved in social media outlets, particularly with efforts to support and educate women struggling with endometriosis. Women with this condition are fortunate to have access to a variety of very active and vigorous advocacy and education groups, and in these groups there is a lot of great information. At the same time, I occasionally note in these groups that there can be some passionate views, and at times I think that there is some incomplete information being passed around. Perhaps the biggest area I see this in when the topic of hysterectomy for endometriosis is discussed.
Typically the exchange goes like this:
“I have been struggling with endometriosis for X years and have Y symptoms, and my doctor has recommended a hysterectomy.”
Very quickly (within seconds usually) there will be the response
“Hysterectomy does not treat endometriosis”
or even “HYSTERECTOMY DOES NOT TREAT ENDOMETRIOSIS!!”
This always rubs me the wrong way. This is not because it is wrong, but because it is incomplete.
When a woman comes to see me for endometriosis care, I tend to think that she is coming to me because of a set of symptoms. The most prominent symptom is pain. Women may also come for infertility they believe is related to their endometriosis, and sometimes also for other symptoms that are peripheral to endometriosis disease (bowel function issues, urinary symptoms.). The important thing in helping a woman with pelvic pain is to really consider what the source of the pain is. And in some cases, she may have endometriosis yet still may benefit from a hysterectomy.
In the past, endometriosis was believed to be caused by “retrograde menstruation”, or bleeding backwards out of the fallopian tubes. In this theory, endometriosis develops because the cells of the endometrium come out of the fallopian tubes during menstruation, set up shop in the peritoneal cavity, and go on to create the invasive disease we call endometriosis. If this were true, one might think that hysterectomy was a great idea for women with endometriosis, since it would stop the retrograde menstruation and therefore the ongoing deposition of disease. The problem is that this theory probably does not describe the true origin of the disease. There is a lot of evidence to suggest that endometriosis is actually laid down in the pelvis during embryogenesis, and is not deposited over time. Some of this evidence makes it almost impossible that retrograde menstruation is the answer (ie endometriosis present in premenarchal girls, or even in unborn fetuses).
And this is where it gets a bit tricky. I think that to some extent, some of the endometriosis advocacy community has taken a desire to vigorously refute retrograde menstruation as the source of endometriosis and decided that in order to be consistent with that they must also refute hysterectomy as a potential treatment for pelvic pain. This is unfortunate.
The things is this: while hysterectomy does not end endometriosis related pain, many women who present with severe pelvic pain do have pain that is originating from their uterus. Many women also have severe bleeding that harms their quality of life. In either case, a hysterectomy can be entirely justified as part of management.
When a woman sees me for pain and I believe she has endometriosis, I consider complete removal of her endometriosis to be a very important part of her treatment in most cases. That said, removal of her uterus may also be an important part of the treatment.
So who needs a hysterectomy as part of their care for pelvic pain? First, we have to start with the group of women who don’t need their uterus anymore. There is little reason to consider a hysterectomy in a woman who desires future fertility. If such a woman has uterine source pain, we can consider presacral neurectomy ( a procedure that removes much of the visceral sensation from the uterus) as part of her treatment.
In a woman who is done with childbearing, we have to consider the source of her pain when deciding if removal of the uterus is justified.
She may have adenomyosis. Adenomyosis is a condition of endometrial glands growing in the walls of the uterus. In some cases it is the result of uterine lining damage from the placenta during pregnancy. In other cases it may be congenital, created in the same way that endometriosis may be laid down as part of embryogenesis. Adenomyosis causes very heavy bleeding and severe pain in the menstrual cycle. If a woman with adenomyosis also has endometriosis, resection of her endometriosis is not going to completely resolve her pain. If she is done with childbearing, it makes sense to take out her uterus while resecting endometriosis. Women with adenomyosis alone without endometriosis (usually characterized by cyclic central pain and heavy bleeding) will generally be entirely cured with a hysterectomy. They may also get somewhat better with a mirena IUD, or in some cases with a uterine ablation, though neither of these treatments works 100% of the time for 100% of women.
She may also have uterine fibroids. Fibroids can dramatically increase the amount of blood that is lost during menses, and can indirectly increase the amount of pain felt as well. Fibroids can be treated with myomectomy (removing the fibroids) or via hysterectomy (removing the entire uterus). The bleeding and pain associated with fibroids can also be treated with medicines or a progesterone IUD in some cases.
There are even some rare cases where there are uterine malformations that cause pain. Some women have double uteruses, where one uterus does not properly drain through the vagina. In these cases there is almost always pain, and this pain can be entirely cured with removal of the part of the uterus that does not drain. There are also a variety of other uterine malformations that may have a “blind horn” that needs to be removed to relieve pain.
There are also cases where a woman has such severe endometriosis that it seems technically impossible to do a truly thorough excision of all disease while preserving the uterus. While these cases are rare, they do occur.
So if we can agree that hysterectomy can be a justifiable thing in some women with pelvic pain, what about removal of the ovaries as a treatment for pelvic pain?
This is another hot topic issue. The “complete hysterectomy”, or removal of the uterus and ovaries, has been a traditional treatment for endometriosis. The reality is this: If a woman with endometriosis has her ovaries removed, she is will probably see some improvement in her endometriosis related symptoms, and in some cases will see complete resolution. That said, women with deep infiltrating disease may continue to have symptoms despite oophorectomy.
I occasionally see online the idea that oophorectomy is pointless because "endo makes it own estrogen". In my opinion this is taking one small piece of information and extrapolating it to mean something it doesn't. Yes, there are some papers that show that some deep infiltrating endometriosis lesions express aromatase, and thus create their own estrogen from transformation of circulating steroids. But that fact does not obliviate the fact that many women with endometriosis do experience a dramatic decrease in symptoms when they are in a low estrogen state.
The real issue in all of this is that if a surgeon is capable of doing thorough resection, oophorectomy will probably never be necessary, at should not be offered as a first line treatment. After thorough resection, it may make little difference if there are ovaries or not because the endometriosis is gone. Women need estrogen for their health, as well as progesterone and the other minor hormones that the ovaries produce. Early loss of ovarian function is associated with bone density loss, bone fracture, heart disease, poor vaginal health, and possibly early dementia as well. For that reason, we should not be quick to remove ovaries from a woman who has endometriosis. Instead we should endeavour to remove her endometriosis, so she can have pain relief while preserving ovarian function.
So in summary, let’s not be so dogmatic about this disease. Hysterectomy is not a cure for endometriosis, but it does help some women with pelvic pain. Oophorectomy made some sense when nobody knew how to resect disease, but with modern treatment is no longer a first line therapy, though sometimes it is still justified.
So if a doctor says “you have endometriosis you need a hysterectomy”, you should probably find another doctor. But if a doctor says “you have endometriosis, which we are going to remove in surgery, but I also think you need a hysterectomy to achieve your treatment goals”, you should probably listen to them.