Sever endo 16 years post hysterectomy

[Joonaspryte]

I am 58 and had a total hysterectomy 16 years ago, because I was told I had extremely bad pelvic inflammatory disease.

now after years and years of problems, bladder, bowels ( from which I also bleed a lot) , etc. i had an appendectomy where endometriosis was found on the appendix. I have since developed symptoms of thoracic endometriosis,.

Somewhere along my journey, I ending up keeping a letter meant for my GP, so I opened it, and discovered that I was also had had ademioma , seen after the hysterectomy,which I had never been told about.

My gynaecologist has told me to stop hrt as she says I will endometriosis in my pelvis and probably Bowles, I’ve just has a very very painful colonoscopy, where he said my bowels are stuck together. She also said she will see me in 12 months ,

When I came off the hrt, I went into severe depression which made me having silly thoughts and still having t

All endo symptoms, the gp put me on hrt patches, which have helped but I know gynaecologist won’t be too happy about. But to be honest, telling me to come back in 12 months, I don’t not think this is good enough.

I would love anybody’s thoughts. 😊😊😊

[Sunset-lady]

God you poor woman. This is awful and made so much worse by them just packing you off without HRT 💔 and expecting you to be fine. I've tried coming off HRT and I know those intrusive, scary, batshit, crazy thoughts you have and the catastrophic thinking that intrudes your day and takes over- you feel mad. I don't know what to suggest which is why your post floored me. A lot of us on here pray that a hysterectomy will be the answer but we know that endometriosis is a life long disease and it makes its own estrogen. Which is why coming off HRT is not the answer either although they probably think it' exacerbating the situation. I would perhaps explore a few things. Get in touch with Endometriosis UK and ask their advice. Ring your consultant's secretary and complain. You can put in a more formal complaint through PALS. You could see an endo specialist privately (I'm presuming you're under a specialist centre - if not, you MUST). You can get some anti depressants from your doctor which WILL help and you need that mental support right now or try the natural route through herbs. You may want to explore the work of Ray Peat and try progesterone therapy. There's a Facebook page called Balancing Hormones run by an amazing woman called Gemma whose story started post hysterectomy. I'm sending so much love and hope you get on the right track. Xxx

[Sunset-lady in reply to Sunset-lady]

Also explore estrogen dominance xxx

[Joonaspryte in reply to Sunset-lady]

That’s so kind of you to answer, i didn’t know which way to turn.

Consultants always have a way with them that makes you feel small.

I’m not under a endo specialist.

How would I go about that?

But to be honest, I’ve had three C-sections, partial hysterectomy , total hysterectomy , tubes taken and they literally had to peel one of my ovaries off my bladder and ended up cutting into it, I was sent home with a catheter for a month, they also pierced my bowel.

I then had gallbladder removed, the appendectomy, and two weeks after ended up with sepsis and a huge abscess developing which resulted in me having a bigger surgery to remove infected umbilical cord and surrounding tissue and drainage.

I do seem to get secondary infections after surgeries.

I’ve been seeing urologists for years over bladder problems, even though I have a strong pelvic floor, and have my bladder completely emptying itself in public, I have had Botox in my bladder twice for this.

Now I am really getting annoyed, and coming off hrt, and the gynaecologist had even said I may need to go on GnRH analogue, which I’ve researched and it’s a pretty drastic treatment and very rough on the bones and body.

I’ve written her a email, but have not heard anything back yet. ( I even put my title BSc hons psychology, to show her I’m no idiot lol) never usually use it lol

But I won’t go away quietly.

[Sunset-lady]

You do need to be under a specialist centre for endo so I would find the nearest one to you and ask to be referred or go private and pay £200 for an appointment with the consultant from the endo centre who will work privately at another hospital as they all tend to do. I am on Zoladex GNRH inhibitor and it has been a life saver for me as I hemorrhage all the time without it. I've stage 4 endo, fibroids and adenomyosis and my gynae tried to do a hysterectomy but it's all fused as they weren't expecting endometriosis. But the idea is that I'm on it until menopause! Whereas you have gone through menopause. Please read about progesterone therapy and good luck as you've had a hell of a time. Women with endo are true warriors xxx

[Joonaspryte in reply to Sunset-lady]

Brilliant advice, from someone who has and is also going through a tough time bless you ❤️ I will get onto finding a specialist Many thanks to you "hugs"

Julie

[Marcia71]

now you know you have endo it is fine to be on hrt but it must be combined and continuous hrt once you’ve had a hysterectomy. Generally progesterone is only recommended when you still have uterus. But with endo the progesterone can help stop the oestrogen feeding endo.

I had. A hysterectomy for endo and adenomyosis 9 years ago and only felt better after getting right balance of oestrogen and progesterone for me. That was 3 pumps on Lenzetto spray and 100mg of progesterone and finally stopped feeling suicidal and it controlled my hot flushes and night sweats. Good luck with finding right balance for you.