Endometriosis UK
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Have you been recommended hysterectomy?

I have been reading this morning a couple of things that have arrived in my newsfeed on Facebook via the Endometriosis Association of Ireland and I wanted to share a particular link they posted this morning for anyone who, like myself, has in the past been told by a GYN that you should consider Zolodex, followed by a total hysterectomy, and HRT... but specifically hysterectomy, in particular, as a "treatment" for endo.

I was diagnosed an had my left ovary removed in one of two surgeries back on 2007, and last year I refused this course of treatment recommended me by a gyne consultant, who hardly even looked at me in the 15 minutes I was in her office, for completely uneducated reasons just because I didn't feel right about the suggestion that a hysterectomy would do anything for the pains I was feeling all over my abdomen, even high up near my kidneys, and the casual recommendation that I use HRT until my 50s (I'm just 40 last November). This is my life, and my health. I am not going to let doctors who don't feel like spending time with me investigating my particular case to gamble my future away just because this is what they have learned to recommend. Screw that.

If you are worried about whether or not hysterectomy is the answer, this is a good bit of knowledge: mjwcooper.com.au/patient-in...

Regarding the immunological aspects of endo that are being explored in endo research, Lindle, who has contributed invaluable information to this forum, has posted very interesting information regarding the immune and endocrine system's role in endo.


I highly recommend, if you haven't read Lindle's posts, do. healthunlocked.com/lindle?r...

Endo sisters, I can't express how important it is that as an endo patient, especially in the minefield of the NHS (coming from me, that's an extremely reserved assessment of our healthcare system!), get all the knowledge you can get your hands on. Learn everything you can, question EVERYTHING the doctors say to you (it's your body, it's your right), and don't just accept the first recommendation you get unless, of course, you feel absolutely right about it.

It may take longer to get to the right answer for you if you have find a consultant you trust and you get a plan you're happy to follow, but it will save you so much hardship later if you be strong and do that hard work now. And you have to, because unfortunately in this damned healthcare system you are your only advocate. Always, ALWAYS, know you have every right to ask questions and refuse treatments offered, and its your right under the NHS's own guidelines to CHOOSE what you want.

Be strong, and be well. You're not alone. xx

4 Replies

Molly - I can't tell you how good it is to hear you so empowered now, researching your condition, listening to your own body. There are some exceptionally good gynaecologists out there who know their own field but as we keep learning endo is a specialist field in itself and once we understand this we understand why so many inappropriate treatments are still being given. x


Here's another, Lindle


Great post Moxy. Thanks. Makes me feel less mad.

Do always trust yourself and your decisions. Your instinct counts as an educated reason in my book.


Hi, Moxyfilm

Thanks for this, I am still undecided as to what to do in terms of treating endometriosis.

The general gynea who I saw for diagnostic lap lightly suggested to have hysterectomy which I refused to do back in Dec 14.

Since then, I am trying to search the best option with more Endometriosis specialist in Plymouth but it has been taking a long time to see him after a CT scan.

As I am suffering from kidney/rib pain the most, my feeling is surgery to ensure kidney health but how much other surgery to be performed might become a debate and also, if I am to preserve one overly etc. etc.

Saying this, I guess I will need to be referred to urologist for more tests and consultation as well so it will be a long way with the NHS, especially with a hospital which is on the black list!


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