With one hospital, can you ask to be referred to another? Also can you request hysterectomy?

[NatAbad]

Hello all,

I am 43 and have severe endo. I exercise loads and try and eat sensible endo diet. No children due to Endo. Have had four laparoscopies, two hysteroscopies and numerous procedures and a life saving emergency laparotomy 3 years ago after I got infection from elective surgery/laparoscopy for recto-vaginal endo removal. The infection meant I had had three multiple haemmorhages in a week, and the last one nearly fatal as wound site internally had eroded hole in womb wall and main artery around my womb burst. Nineteen pints of blood transfused that saved my life so am very grateful to all the wonderful staff that got me through. Anyhow, since then been on Cerazette which has been pretty good until about 8 months ago where pain increasing again. To that end, back to the same hospital and scan showed endometrioma growing again on ovary after 3rd time as well as endo elsewhere. Going back in 5 weeks for next scan to see how my ovaries are. My question is this: despite my hospital in SE London being brilliant, but I had a bit of psychological trauma from what happened and thought of being in same ward for more surgery is making me jittery. Can I ask any of you ladies, if you are already with a hospital can you get referred to St.Thomas'/Guys instead for example? Do I have to go back through my GP?

Also regards to hysterectomy can you ask for it or does it come from the doctors suggestions in general or can you request one?

[JeanOsborne]

Hi the hospital that you are at is a BSGE centre? I ask this as you say you have severe endo and this should only be treated at one of these centres. It is you choice of where you go fo treatment, but I think you would need to go back to GP to get a referral. As for the hysterectomy it sound to me like it would be of benefit to you so it would be worth discussing with consultant, but it must be your decision. They can only advise. I had a total hysterectomy, removal of both tubes and ovaries along with excision on 3rd March. Also had work done on bowel and uteras. Apart from some bowel spasms where I'm healing, I actually feel pretty good. Hope this is of some help. If you have any questions just ask.

[NatAbad in reply to JeanOsborne]

Hi Jean,

Do you know I have no idea whether Kings is a BSGE centre and what does that stand for? How can I find out?

Thank you for your hysteroctomy advise. I trust and wish you a speedy recovery. I'm still mulling it over.

Very best wishes Natalie

[JeanOsborne in reply to NatAbad]

Hi I've just looked on the BSGE website. If you're at kings college then that is on the list for accredited endometriosis centres. BSGE stands for British society for gynaecological endoscopy. So at least you are being treated by a specialist centre which is a good thing.. But if you feel uncomfortable with this centre there is no reason you shouldn't request a referral to another.

[NatAbad in reply to JeanOsborne]

Many thanks Jean. Sincere apologies I didn't reply sooner. Thank you for passing on that info. Best wishes Natalie

[JeanOsborne in reply to NatAbad]

That's ok Hun. Just want the best for you. Good luck and take care.

[Michmh]

If you werent happy in the last hospital tell the doctor to refer you to another one. Nowadays if a girl has endo they seem to be advising hysterectomys like sweets instead of trying to make the problems better for women to concieve. Its a shame you had to have so many laps and no kids at the start as some women have concieved after a lap all with womb ovaries uterus all clear. They say that hysterectomys the only way of getting rid of the problems but actually ive heard the endo doesnt go away just bleeding or pain but its a blood disease how would it disappear? Even after the menopause ive heard weve got it for life!!!!!

[NatAbad in reply to Michmh]

Thank you Mich, yes I'll see...not really keen on the idea of having everything taken out to be honest, but not sure how much more I can take. Endometriosis is like an unwelcome house guest! Lets see. Thank you for taking time to reply.