What do I do next 😔

[Pureunicorn]

Hi all,

So I've been waiting to hear back from my specialist.......and I'm still waiting! I've tried emailing & calling (message left) and I've not heard anything! I'm on the decapeptyl injections (monthly) I've been getting bad pains on my right side, ribs, my legs ache n I've now got this redness from my ankles to bottom of my calf, I'm so worried, I've managed to spk to my gp and I have an appointment with them on Monday, im thinking of taking a break from the injection, but I just dont know what to do, I cant keep going with everything 😭 as anyone else suffered with anything like this? Or have any advice on what I should do! Thanku for reading xx

[Chicken2012]

Hi again Pure unicorn. I would get your redness on your calf checked sooner then Monday. I have replied to you before and you have with myself. I have been on the injection for over 12 months. I have thought about coming of it due to a returning cycle. Gp and consultant has advised to stay on. In normal circumstances I would had my surgery. I have pain in my left side and I seem to be going through a cycle. The British National Formulary states 6 months but they say it’s ok. I have my worries about it and have considered a break before my hysterectomy. But it’s a chicken and egg situation as I was in a lot of pain before, but then I found it worked for six months. I’m so sorry I can’t advise you further you sound like your in the same boat as me.

[Pureunicorn in reply to Chicken2012]

Hi chicken2012, How have u been? I had to do an online form as they offered me an appointment for the 12th of April 🙄 Monday was the earliest! I'm just so over this! I just want to speak to someone about my worries, I feel crap n I either ache or hurt, I know if I come off the injection I'm probably going to feel worse but I'm starting to worry about the changes I'm having, I was hoping to speak to my specialist about them but I cant even get hold of them and there not returning my calls! I think I'm going to call pals and see what my next step is as I cant/ dont want to carry on like this!

Hope u are having more luck then I am at the mo xx

[Chicken2012 in reply to Pureunicorn]

Hi , that’s a shame , I would get your calf checked. I feel ok for now , I’m trying to stay positive. As last month it got me down, tearful felt like pmt. I have no menopausal symptoms which is weird. Just trying to trust advice from Gynae at the moment, whilst I wait. Everything is just on hold for my hysterectomy. I don’t make any definite plans and take week by week.

I’m monitoring my pain as I seem to be having a cycle, but it’s lighter but lower pelvic cramps and stabbing to my left, like an ovarian cyst.

I would use PALS as they could act as an advocate for you and give you support.

Keep me up dated.

[Pureunicorn in reply to Chicken2012]

Hi, me again! So I went to the gp and they are going to email my specialist and see if they get a response 🤞 they are also going to request an ultrasound to see if anything has changed or if there is something else causing the pains (I'm worried it's the cysts getting bigger!). I called pals no answer so I left a message, hopefully they will call me back soon! How are u feeling? I know what u mean by living week by week or even day by day, its just crap and no life at all!! Xx

[Chicken2012 in reply to Pureunicorn]

Hi that’s good you have got a scan, cysts are horrible. Are you waiting on surgery ? I’m ok just work 3 12 hour shifts in row so tired today.

I think I may have had an endo flare last month so touch wood I’m ok so far.

Pals is a good. I think it’s all covid that has distributed things .

How’s your calf ? X