Pain: Hi I have written a post on here for... - Endometriosis UK

Endometriosis UK

55,617 members44,620 posts

Pain

Chicken2012 profile image
Chicken2012

Hi I have written a post on here for a long time. I have been on Deceptyl for 12 months, I’m awaiting Hysterectomy, Total including ovaries. At first the injection worked well. Now I appear to have light bleeding pain left side.

I feel very unhappy and beginning to feel it’s been a long wait. Has anyone else experienced this. I have been on waiting list since June 2020 which they said 6/8 months m then they said March and now could be June plus. I can not afford private.

11 Replies

Sorry your wait is so long, have you chased it up recently? You should be near the top I’d have thought.

I had a hysterectomy in November with supposed removal of endo, but he made no real notes on checking the bowel, make sure they tell you exactly what they will be doing.

I have very recently. COVID restrictions unfortunately

Try not to let them keep that as an excuse, things are happening and more often now.

Hi, OMG u sound just like me (apart from my pain is right side!) I've been on decapeptyl for 10 months and was only ment to be on it for 6 months, I've not heard anything from my specialist, I just feel like I've been forgotten, I've been back and forth to the gp with my pains and they just dont know what to do anymore, I'm thinking of taking a break from the injection as it doesn't seem to be working aswell as it was, so I just dont see the point in putting it in my body anymore 😔🙄 like u I just cant afford to go private, so I feel for u, its just di crap! My husband thinks we should make a complaint to see if that makes a difference xx

Hi pure unicorn,

Friday I went to A and E , I’ve just had enough. If I come of the injection it’s so much more pain . I’m also not having any of the menopausal side effects at all. I’ve lost patience , it worked for 6 months and that’s when it’s licensed. I’m in the south west and seems to be like this all over. Covid has had such a big effect on us all with Endo / gynae issues. I’ve been told June plus at the moment.

Pure unicorn do you feel your body is now suppressing it , could be a reason why licensed for 6 months.

My pain is bad , the only thing it’s doing is making my bleeding lighter .

Hi, I'm in a similar situation. I've been on Decapeptyl for 7 months awaiting surgery, was recommended I get hysterectomy but I opted for bowel shaving but as time goes on I'm changing my mind. I went on surgery list Jan 20 and was told up to a year for bowel surgeon but due to covid they have no idea when it will happen. My pain had nearly gone for 4 months but then started to return, most of my pain is left sided, been spotting now for 4 weeks. I've been changed from monthly injections to 3 monthly just a few weeks ago. Slight improvement but not much. I really hope your surgery comes through soon xx

Yours to , my decaptyl is still monthly . I’m now making a pain dairy.

Thank you for your reply. Sounds like you’ve been through it .

Reading your post now fills me with dread! I was put on list this month! So I should imagine that I’ll be waiting until 2023!

There’s some research into the use of metronidazole as a treatment for Endo! It shrinks lesions in mice! I don’t know how willing your Dr would be to prescribe it, but could be an Avenue!

Xx

Oh no I hope you get a date soon. I’m just in pain and not so happy .

Have you all looked up the side effects of of the injection. Is this causing the problems?

You may also like...