Do I have to have a hysterectomy?

[SunnyKB]

I have quite severe endo with adhesions and pcos. I’m 41 and I guess I’ve finished my family. I’ve been advised to have a hysterectomy but I really don’t want to. I understand it increases risk of heart disease which runs in my family. I’d like to go through menopause naturally as I’m a very active full time mum. I guess I can live with the pain I already have, as I feel rubbish for 2 days of the month but otherwise feel good. I just don’t want the endo to lead to any other problems like bowel issues or rheumatoid arthritis. Am I being too optimistic that I can take another route?

[luthien]

That's all understandable, and makes sense.

Have you been seen by an endo specialist? Have you had a recent laparoscopy to see the extent of your endo?

If not to either of those, is it general gynae whom have said you need a hysterectomy? General gynae quite often don’t have the experience / knowledge regarding endo to know there are other treatments. Also consider you may be offered a hysterectomy because according to the NICE treatment guidelines you may not want any more children. However the guidelines are something all doctors should work towards It does say that excision of endo should be performed at the same time if not before a hysterectomy is offered to reduce the risk of endo regrowing.

nice.org.uk/guidance/ng73

A hysterectomy even complete (with removal of ovaries) comes with it's own side effects, which I'm sure you're aware of, but also because we all produce low levels of oestrogen even males, endo once present needs this to grow and so it will always grow if present already, and produces it's own oestrogen when in large enough amounts so accelerates it's own growth.

It's now known that a hysterectomy doesn't stop endo growth if endo is already present / has been present in other areas of the abdomen - a hysterectomy will only remove the reproductive structures and the endo on there. It can however help reduce the pain in some women. Perhaps look at trying a chemical menopause - to see if it actually helps your symptoms as that may give you an idea of whether an actual hysterectomy is the way to go, it's also non permanent but of course comes with it's own side effects.

So in summary to answer your question; yes you could ask to see an endo specialist and ask for an excision of your endo via a laparoscopy then see how you cope after say 6 months - full recovery time - to check your new "normal". An endo specialist may want to consult with other specialists regarding your family history to look at the risks of a hysterectomy and they may advise against it whereas a general gynae may just do it as it's routine for them. But it's still a huge operation.

Hope this helps somewhat and apologies if I assumed anything! x

[HopeRed]

Good morning I was offered the same and I refused and seeked another opinion from endo specialist. I have been offered removal of endo as I am happy with as I knew a hysterectomy is not a cure for endo. Happy to help if I can. I am awaiting date of my op.

Best wishes

[CelestialFluff]

Hi. I'm currently in a v similar position. I have adenomyosis and suspected endo (my symptoms are consistent with the endo though no lap to prove). I'm in low level constant pain and periods are v painful.

I'm 41 and have 2 children and work.

The specialist has suggested either a lap to remove what adhesions and endo they can or a hysterectomy.

I'm really torn as operations and their side effects scare me and I'm trying to decide if I can live with the pain or if it will get worse.

Sorry - no advice! Just empathy and understanding for the dilemma. X

I'm wondering about hormones (eg mini pill kind of thing) to see if that helps with the period pain and it will presumably reduce the growth of the adeno and endo?

I'm worried by the number of people who seem to still have pain after their operations and the potential for more pain if extra adhesions form.

But constant low level pain (despite strong painkillers)...

Anyone want to make the decision for me ?!

I was advised there are different kinds of hysterectomy including a partial that leaves ovaries and cervix intact. May be an option?

Hope you find the right solution for you. Xx

[endopositive]

I tried the chemical menopause first on Zoladex. It was horrid, extreme night sweats, no sleep, very emotional and even suicidal. I had no pain but I still would not have the hysterectomy because i know it may not help prevent the endo growing back and I don't want to feel like dying again. Try it first you may react different. I'd rather have the pain, Visanne has been my best option from overseas, minimal pain and only slight menopausal side effects. Good luck hun, do your homework