Endometriosis diagnosed 30 years ago and have had nothing done since then where do I go for help support and advice.

[Elena1234]

I was diagnosed over 30 years ago with endometriosis and have had problems with polyps, fibroids and cysts with painful periods since being a teenager at 15!but am now 2 years into the menopause at 53 and still having problems. how do I get a private hysterectomy done as I am still in agony. What do I do when a consultant thinks a hysterectomy won’t help. Do I get a second third or fourth opinion. I am wanting a full hysterectomy as I am in so much pain with a bloated tummy like a pregnant woman and sex is too painful. I don’t seem to be getting anywhere fast no one understands how awful it is and i am just being fobbed off. My partner will pay privately for a radical hysterectomy but I can’t seem to get a consultant to take me seriously I think my drs think I am making a fuss over nothing. Please advise

[Pinkprincess22]

I’m so sorry to read what you are going through

My suggestion if you are wanting to go down the private route is to find out what hospitals in your local area are private and then look on their website for what specialists they have that you can then phone to make an appointment.

I’m going through private medical via work and I believe if you find someone who’s a specialist in this area they will operate on you because you are paying for it. NHS it seems to be a battle to be taken seriously.

I am sure if you get an appointment with a private specialist and explain your history they will be happy to operate.

Good luck I hope you get sorted soon x

[StefaniaJW]

A hysterectomy won't reduce endometriosis pain unless you get both a hysterectomy and FULL EXCISION during the hysterectomy. So my advice would be to contact a great endometriosis excision surgeon and get everything done with him.

You can find both amazing surgeons privately and through the NHS. Just contact me to get their names (there aren't many amazing endo surgeons in the UK, maybe 4 or 5).

[MTL2008]

It is my understanding that hysterectomy is not the answer to endometriosis. Ask for an endo specialist before doing any type of surgery. I haven't been diagnosed with endo yet, although I have some symptoms, but I read a lot about it (books) trying to figure out what's wrong with me. There is some good literature out there with some advice to try to ease the pain. I know how it is when the doctors don't give you any answers. I wish you the best.

[Gwen172]

I just wanted to say that hysterectomy alone will not cure endometriosis. I know from experience having had one over 25years ago and have lived with pain ever since. I still have endometriosis you don’t get rid of it. Sorry to be so honest but I am going in my own experience. Excision done properly seems to be the gold standard. Do you know what stage you have? Also, try and see a specialist in a bsge centre who know what they are doing. Any questions feel free to ask. Are you on oestrogen Hrt.

We are all at different levels of this disease and still the medical profession are quite ignorant and have little understanding of the impact it has on your life. Wishing you all the best. X