Adenomyosis and endometriosis help

Hi I saw my consultant today and he said I have some adenomyosis I had surgery last Ovt for endometriosis and he removed that but 3 months later got pain back again he has advised I have prostap injections for a few months then book for for surgery to remove uterus but keep ovaries anybody had this done and can give me some advice I'm scared 😪xx

[plotments]

I know how you feel I'm currently doing prostap before I see consultant to arrange a full hysterectomy and removal of bowel endoWill you be having HRT while on prostap?

[Hidden in reply to plotments]

Hi sorry your going through it too. I had prostap injections for 6 months last year and 3 months beginning of April this year and never was offered HRT. Did you find the prostap shrinks your ladybits? It did me I had minimal endo removal last year but pain returned then they found adenomyosis on my ultrasound so that explains the pain the consultant wants to remove uterus and leave ovaries in. Have you got a date for your next injection and apt with consultant I wish you all the best. Have you had surgery before ? Sorry for all the questions 😊xx

[plotments in reply to Hidden]

HiI did prostap last year for 3 months without hrt and it was awful, had second lap feb this year cyst, endo, bowel affected...bit of a mess inside to be honest.Have my 3rd injection next month but been given hrt this time to help with side effects and it's made such a difference than hopefully appointment with endo specialist wont be long and will have date for op

I haven't noticed any difference with my bits...hahaha

How do you feel about having another op?

[Hidden in reply to plotments]

Hi, I feel very scared about another surgery and the thought of having my womb taken out and my cervix's just sounds weird. what happens when I ovulate each month where does the egg go and will i produce endos, To be honest I have so many questions. and don't get me started on when you able to have sex again do you still have a hole up there 🙄. I need to do some research and find out why they want me to keep my ovaries maybe for health reasons my apt went by so fast yesterday xx

[plotments in reply to Hidden]

Your not the only one that's scared hun, I don't know what's more frightening having the op or recovery. Yes You'll have to check on why ovaries are being kept as endo is more likely to come back if there left in......I'm 47, never wanted children and consultant has advised me to have full hysterectomy, with a small amount of HRT after op till I'm early 50's to help with menopause symptoms and to protect bones.

if your having an op seems pointless to leave anything behind but maybe your Dr have their reasons you need to ask.

I started looking into what op involves....was wondering what happened when they remove your cervix (is there just a hole leading up into an empty space!!!) they do something called a vaginal cuff...close the opening over when they remove cervix.

It is all very confusing

[Pippajane]

Hi, I can only go by my experience, having endo and adenomyosis for years. I had a hysterectomy 18 months ago and they only took my uterus because of bowel adhesions, it was done in a small private hospital with no bowel surgeon present. Endo has returned with a cyst on my ovary and on a visit to a new consultant at a bigger hospital she said a woman of my age 49, should have had a full pelvic clearance including ovaries because as long as I ovulate endo can re occur and I should never have had this surgery done there and without bowel surgeons present to remove the whole lot. I am now waiting results for, most likely, further surgery to remove my ovaries and go straight into menopause. I don’t know how old you are and there may be very good reasons they are suggesting this course for you but I would suggest you get a second opinion and never be afraid to challenge and ask questions and write things down. It’s your body and nothing can be done without your consent so question everything so you know what your options and the outcomes, short and long term are. Good luck x

[Hidden in reply to Pippajane]

Hi Pippa Thank you for your reply I'm so sorry you have got to have another surgery. I am 40 and had my first surgery last year they removed endos from both ovaries and behind my uterus something called the pouch of douglas i think, my consultant said it was very minimal and I did have prostap injections for 6 months before my surgery which shrinks all your bits and bobs which did help with taking the pain away. I am confused what to do. I don't want to have children and when I'm ovulating it like constant pressure dull aches then stabbing pains on and off. They gave me more prostap in April this year which lasted 3 1/2 months and again it took the pain away I didn't get a period back until this October then the pain slowly returned they found on my scan its called adenomyosis but only a few bits around the uterus wall so the consultant said thats probably where your getting your pain. How did you feel after having your surgery and was it different down there? im super scared about the whole thing xx

[Pippajane in reply to Hidden]

Hi, I’m not familiar with Prostrap injections. I was on Mefanamic acid and tranexamic acid and naproxene for the pain. I had quite a lot of adenomyosis so when they took my uterus out it was a bit like a free tummy tuck as I wasn’t feeling bloated all the time. I had good runs pain free but it came back intermittently and I was still having a period (albeit much lighter) due to keeping my ovaries and having possible endometrial tissue at the top of my cervix which flared up each month. Still it was better for a while and the pain not as frequent but still bad at times. If you want to find out more about hysterectomy experiences there is a Facebook page called Hysterectomy Sisters which was a life line for me pre and post op as there’s so much advice and support. It is much better than it was before, most of the time, I’m glad I did it, however leaving my ovaries in I have now got cysts back and most likely have to have further surgery to remove my ovaries I wish I had had a second opinion or been referred to a hospital that could have supported this in one go as it seems now I should have done. You’re younger than me so will likely ovulate for longer before menopause so possibly more chance of it recurring but we just don’t know. The new hospital I am under has advised me they have a specialist endometriosis clinic and are referring me there. In the years since diagnosis I’d never heard of such a clinic. The only thing I can say is don’t be scared, be informed and find out their reasons for partial over full. If I can answer anything else please just ask, and keep in touch and let us know how you get on. Xx