During Endometriosis Awareness Month, it's helpful to get accurate facts out there about the disease and to dispel the common myths about endo. The myth I'd like to tackle today is this - that hysterectomy cures endometriosis. Obviously, this is a topic of particular relevance for me.
You see it on the message boards and email lists - women saying, "My doctor says I need to have a hysterectomy because of my endometriosis." They post looking for assurances that this major surgery will solve their problems at last and that they will be cured.
Hysterectomy does not cure endometriosis. Nothing cures endometriosis. I can't be any more blunt that that, folks. Up to 40% of women who have a hysterectomy will experience a recurrence of endometriosis within five years. The key with endo is the removal of the disease, not the reproductive organs. Endometriosis can continue to grow even after hysterectomy.
If you have endometriosis, you're going to have to become your own best advocate. Find an endometriosis specialist - no matter how much you like your regular ob-gyn, this is not a disease for a general practitioner. You will need a skilled, experienced surgeon who is up on all the current research and who will treat you with compassion and respect. You deserve nothing less, and should settle for nothing less.
I personally would never recommend a hysterectomy to anyone who has endometriosis. In my case, I was also dealing with adenomyosis and had exhausted my other options for treatment. I made the decision to have this major surgery knowing full well that it was not going to cure my endometriosis, but that it would resolve some of my other issues. My surgeon removed every last bit of endo he found while performing my hysterectomy - and now we all cross our fingers and hope. And that, my friends, is the way it goes with endo - surgery, and then hope.
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My mother had endo & a hyster at 28, she still suffers with what she feels may be endo.
ReplyDeleteI've heard of other women, too, that have went for the hyst only to go under years later and find endo still in their bodies because of estrogen replacement.
I was to have a hyst, but didn't. If I ever do have one it will be for uncontrollable bleeding. For pain, as my doctor put it, you'll just replacing one pain for another - adhesions, hot flashes, mood swings... etc.
--endochick
http://www.endochick.wordpress.com
You're absolutely right, endochick.
ReplyDeleteSometimes it comes down to desperate measures, and all you can do when you hit that point is make sure you have done all your research and are prepared.
Wishing you pain free days...
Hi, I just started reading your blog.. have a quick question. How exactly did you know you had adenomyosis?
ReplyDeleteI've had 2 unsuccesful laps (one with an excision specialist) and now contemplating hysterectomy. I'm thinking maybe the surgeries didn't work due to possible adeno.. but I heard we can't be sure of that until AFTER the hysterectomy. Maybe you can shed some light on that particular diagnosis for me? Thanks much! xx