I need advice please : Hi ladies 2 weeks... - Endometriosis UK

Endometriosis UK

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I need advice please

098765i profile image
10 Replies

Hi ladies 2 weeks ago I had an ovarian cyst removed and was diagnosed with endometriosis it came as big shock as I'm almost 39 with 2 kids i was given this decapeptyl injection and now I'm experiencing side effects its awful I've rang my GP he couldn't help me at all so rang consultant today but she can't see me until next Thursday has anyone any recommendations for over the counter medications to get me through i really would appreciate it thanks ladies 😢

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098765i profile image
098765i
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10 Replies
plotments profile image
plotments

I really feel for you I know exactly how you feel last year I was put on Prostap injections and things were horrid.....hot flushes night sweats bad joint pains and felt like I was going pottyI've been put back on prostap recently but new consultant has given me HRT as back up and so far things have been fine.....no symptoms.......but endo gone into overdrive which should calm down soon though.

My consultant couldn't believe I'd not been given Hrt to help support me last time.......they only give you a small amount to help with side effects but not enough to keep endo active

When you get to see consultant ask why this hasn't been an option for you and explain how hard your finding it.

What side effects are you having?

098765i profile image
098765i in reply to plotments

Thanks so much for your help and advice I have night sweats I ache all over even my eyes ache all I want to do is sleep I get these hot flushes during the day and I feel sick all the time

plotments profile image
plotments in reply to 098765i

Yep that's the side effects crap in it!!!I ended buying a portable rechargeable fan....never left my side

let me know how things go thursday

098765i profile image
098765i in reply to plotments

I will thanks must get a fan thanks so much 🙏

E-ZEE profile image
E-ZEE

Hi!Sorry to hear that!I have faced this situation even worst so can understand,in a mean time use papermint tea and lemon water for sickness ,let ur room window open for fresh air and I second the opinion HRT has been given with porstap although I was still bad with HRT but everyone is diffrent.If you cant bear the side effects dont take second dose however your doctor force you.Hot water bottle and hot bath with Epsom salt for aches but unfortunately cant advice anything for itching and I know its too bad.I wish you good luck for everything.

Lily1986 profile image
Lily1986

Oh no, I’m so sorry you are experiencing this.I have stage 4 and know how horrible the chemical menopause is. I had a course of injections before surgery (no hrt) and another (with hrt) recently to treat endo that continues to return. I had 3 injections with hrt and refused to continue my treatment- doctors don’t understand how horrible the side effects are - sweating, anxiety, moods, weight gain, exhaustion, feeling like a zombie, body aches, chills, forgetting everything, migraines etc etc. Not to mention the risk of dementia and osteoporosis.

Horrible and very strong drug indeed!

Were you given a 1 month or 3 month shot? If 1 month you can refuse another or maybe see if things improve after a second injection for me it didn’t but others it has.

I found sage tablets Menoforce helped with the night sweats.

Have they given you HRT? They aren’t allowed if you are expecting another surgery in near future but otherwise they can. If they have given you some HRT maybe the dose needs adjusting? It doesn’t get rid of all symptoms but helps a bit.

Exhaustion I literally just had to sleep and sleep and sleep for 12+ hours a day. This did improve after about week 6.

I was working first time around and needed time off while body got used to this horrible chemical and the second time round I’ve been signed off work since December last year due to intense pain every day so it was just as well really when having to deal with that injection again.

It’s awful that this is one of the only treatments they have available other than surgery.

Doctor told me my side effects were “strange and uncommon” but I knew they weren’t as I’d read so many other women who had or were having same problems.

I’m sorry I can’t be more helpful but I wish you the best of luck xxx

098765i profile image
098765i

Thanks so much ladies for your advice and support i really wasn't given a choice and was given no information about it but at least I know I'm not on my own that alone really helps 😉

ourmolly profile image
ourmolly

I had a hysterectomy at: 28, but no mention of HRT until I was 40+, when I saw a Consultant who thought I had Osteoperosis, of which I had. Hence, I was put on HRT. But I was taken off it: 7 years ago when my gynaecologist thought I had been on it long enough. I have terrible night sweats in the summer. Have you tried Ibruffen, it often helps with inflamation. I am now 65, but still have issues. I have had rectal bleeding for 40+ years, but cannot have a bowel operation as the lining of my bowel is so thin I could bleed to death. I also have a rectal ulcer.Plus I was medically retired 24 years ago due to back problems. I hope you get sorted out. Keep on at your consultant and GP, it is the only way. regards, Della xx

Chicken2012 profile image
Chicken2012

I have this injection and use Tibolone as add back. Have you been prescribed HRT.

098765i profile image
098765i

Hi ladies so had my appointment last Thursday which ended up being a phone call as consultant got called to an emergency have to wait until next Thursday she'll see me in person she told me half my symptoms weren't related to the injection so ordered a full blood work it's very frustrating I'm still in so much pain i think it's cruel to be left like this

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