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

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Chicken2012 profile image
11 Replies

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.

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Chicken2012 profile image
Chicken2012
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11 Replies
Moon_maiden profile image
Moon_maiden

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.

Chicken2012 profile image
Chicken2012 in reply to Moon_maiden

I have very recently. COVID restrictions unfortunately

Moon_maiden profile image
Moon_maiden in reply to Chicken2012

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

Pureunicorn profile image
Pureunicorn

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

Chicken2012 profile image
Chicken2012 in reply to Pureunicorn

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.

Chicken2012 profile image
Chicken2012 in reply to Chicken2012

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 .

Cactus80 profile image
Cactus80

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

Chicken2012 profile image
Chicken2012

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 .

Heloo85 profile image
Heloo85

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

Chicken2012 profile image
Chicken2012

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

klc48a profile image
klc48a

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

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