Endo untreatable, hysterectomy advised

[Tewks1978]

Hi. I’m new to this forum (although probably should have joined years ago). I was diagnosed with endo in 2006. It was treated and for years I was ok. But in 2013/2014 I started getting significant pain again. I saw a new specialist (thankfully through private health insurance through my work or would have had to wait months/years for nhs referral). I had a laparoscopy and he said I had stage 4 endo. Really bad, across cervix, uterus, ovaries. He was able to treat and it gave me life changing results. However 7yrs on it has come back. I had an operation yesterday and was told it was now untreatable. My left ovary is no longer visible due to the amount of adhesions over it. My right ovary is full of blood. It is stuck to my bowel and bladder and behind my rectum (I bleed every month now when passing stools).

The only options I have now are a drug that puts me into a menopausal state, or the full hysterectomy. To say I am devastated is an under statement as I so desperately wanted to avoid this outcome. I am struggling to get my head around it all. I am 43 with no children.

What are peoples experiences with the drug? Because my endo is significant, will taking it help my current symptoms? Or will it just stop the disease progressing.

What are peoples views on having a hysterectomy? Mine would have to be a full one (cervix, womb and ovaries) via the abdomen. I couldn’t have keyhole because of the amount of scarring and damage in there.

Thank you for taking the time to read x

[Christin_a]

Hi as you have stage 4 are you being seen by BSGE centre? As with stage 4 you shouldn't be seen by regular gynaecologists. If you're unsure you can Google bsge and first see of the hospital your at our listwd then if the gynaecologists who did your surgery is on that list.

[Ilogn]

Hi I'm so sorry you're having to go through this. I too have stage 4 endo and suspected adenomyosis (pretty much confirmed on MRI) I was on the injections (they were called prostap) for about a year give or take. My results were mixed. For about a third of that time I had really good relief from my pain. (I'm 28) so still having periods and obviously they stopped on the injections.

The side effects can affect people to differing degrees. I'm glad I trialled it. I've now been advised a hysterectomy and to see if they can excise anymore of my endo.

I'm glad I tried the injections first. Like you I have no children so of anything it gave me time to come to terms with that and feel ready for a hysterectomy.

As already advised I would recommend making sure you are under a BSGE centre as you are stage 4. You can check the list online and ask you gp to refer if you're not.

Best of luck to you.

[Hidden]

Hi 🙋🏼‍♀️

So I’ve had 6 months with prostap and while so many people have a good experience with it, unfortunately I didn’t. I have the mirena coil fitted and my periods still didn’t stop. I saw a consultant in feb and am having a hysterectomy tomorrow. I’m 41, so a similar age. I’ve never considered having children so it isn’t that which bothers me, it is how my body will change after that bothers me.

I think you have to ask yourself which is best for you, but also what you have to gain from either option. Take some time, it isn’t easy. X