Any advice 😔

[Pureunicorn]

Hi all, so I've been on decapeptyl forabout 6 months and HRT for about 3 months, I'm not sure how long I'm going to be on this as I'm waiting for a hysterectomy, I've been mostly pain free for about 5 months but for the last month or so I've been getting pains on my left and right side, and the other day I got the worst pain like labour contractions across the top of my stomach and going down my left side, the pain was so bad I took 2 codeine, naproxen and then morphine which didnt seem to touch it. I've got an appointment with my specialist on 12th Nov and the endo nurse said I my need to take a break from the injection which terrifies me as before this my pain was so bad and I couldn't find anything to help 🥺

Has anyone had something similar happen and what have you been like on decapeptyl injections.

Sorry for the long ramble but I just dont know what to do anymore.

Thanku in advance xx

[MMich15]

Hi Pureunicorn - I’m surprised they’re telling you to take a break from the injections. My understanding is you’re not advised to be on them longer than 9 months but if you’re taking HRT I’ve heard of women being on them for 12 months! Also, the gynaes I’ve spoken to prefer the patient to be on GnRH injections up to and just over surgery dates because it reduces blood in the womb (makes it cleaner for surgery so they say).

I’d push back a little and see if they’ll give you another injection. Try and remain optimistic because it’s the doctors responsibility to find you an alternative if they can’t keep administering the injections - they can’t just let you go on in pain with no treatment at all. Hope they’re able to help x

[Pureunicorn in reply to MMich15]

Hi MaryMichaels,

Thanku for ur reply, I raised my concerns about how long I'll be on the injection and was told I can be on it till whenever I can have my surgery (as I'm taking HRT!!) the way things seem to be going that's not looking like anytime soon 🙁 I'm just so fed up of feeling like this with what seems like no end in sight! And it's so crap at the mo as u cant take anyone with u to appointments x

[Chicken2012]

Hi Pureunicorn ,

This feels like the same situation as me. I’m on deceptyl and Tibolone. Been on for 6 months. Have pain in my lower back and groin today and waiting for gp to call, I think it feels like a prolapse.

I took a break and the pain was so bad this was in August. On waiting list for Total Hystrectomy. Not very helpful but I’m in the same boat. Rang Gynae and I could now be waiting another 9 - 12 months. Just so fed up with all this.

[Pureunicorn in reply to Chicken2012]

Hi Chicken2012,

Thanku for ur reply, it's so frustrating isn't it! I had my laparoscopy in June 2019, my endo was so bad they just packed me off to another hospital and I think I started bk down at the bottom of the list, I'm just so fed up with pumping stuff into my body, I think the lack of sleep isn't helping as I get terrible pains under and what feels like inside my ribs, it doesn't matter how I try and lay 😔 its nice to hear from others so u know ur not alone. Today at work I had and still have this pain on my right side (which I know is my worst side) and it feels like it's getting worse! Let's see what they say next week 😒🤞 but I'm not expecting anything different! Would be nice to keep in contact x

[Chicken2012 in reply to Pureunicorn]

Hi Pure unicorn, mine is now groin pain but told it can’t be Endo because of the injection. Seeing Gp tomorrow as I also have pelvic inflammatory disease. Please keep in touch. There is only one hospital in my area south west , and surgeries have been cancelled and they are still playing catch up with the last lockdown.

[Chicken2012 in reply to Chicken2012]

Hi pure unicorn , went with the dragging feeling and bladder pain to my gp. Possible vaginal dryness ?? Given some lub to try and also possible Thrush. Feel like I’m going around in circles. Lower back pain not related to Endo but bad back apparently .