Endo Diagnosis, Hysterectomy, Surgical Menopause…..Where do I Start?

[amee86]

Hi All,

I am feeling so completely overwhelmed and confused about where to start following my endometriosis diagnosis…I am just really hoping someone could point me in the right direction.

I was diagnosed with endometriosis last year and am currently on the waiting list to have a hysterectomy and both ovaries removed, before starting on HRT afterwards.

I had suffered for years before this, had seen multiple doctors and was told on many occasions that this was all in my head. I am finding it really difficult to go from a place where I was begging for people to believe me to now facing surgery and going through surgical menopause in my 30’s. I think I was so taken aback when I found out, I never really thought about what I should be asking the consultant!

If anyone has any advice, I would be so grateful!

[Purple_Badgers]

Hi! Completely understandable reaction to an overwhelming situation and unfortunately a very familiar story for many, I’m sure 😔

How have they decided on a hysterectomy for you? Do you feel like you were part of the discussion and given choices?

Hysterectomy is not a cure for endometriosis, as endo can create its own oestrogen and actively continue after menopause.

Having a hysterectomy is a huge decision with many implications for physical, mental and emotional health. It’s only fair that your gynae team ensure that you have access to all the information and support possible before going ahead.

I have severe endo with bowel involvement. I have made the decision to have a hysterectomy because a) due to my age, fertility is no longer an issue b) I’m currently in a chemical menopause and can’t imagine suffering periods again whilst waiting for natural menopause c) everything is pretty badly stuck together, so having one operation to remove my reproductive organs, remove endo, and unstick my bowel just makes the most sense.

My other options were to either a) continue to try to manage symptoms with medication (only semi-successful so far, and becoming less effective as time goes on) or b) have a smaller surgery, leaving womb & ovaries in (which I think would be more difficult and more risky, then possibly lead to further problems & more surgery down the road.)

So, there are always choices and you are allowed to take your time, research, ask questions of professionals and fellow sufferers etc, to help you weigh it all up and come to the right decision for you. You can also search this forum and the hysterectomy forum for previous questions and answers, if you don’t quite know what to ask!

Personally, I usually trust NHS sources for health info, but now I also bear in mind that their advice on endometriosis can be a little out of date… xxx