Decapeptyl, when to get help?

[Carla-B]

Hi, I have been on Decapeptyl for x6 months and my only real symptom has been hot flushes but during the last x5 days, I have become really ill. It started with back pain and lethargy… I called the Doctor who said it’s muscular but if it gets worse, go to the OOH’s. Needless to say, I went to the OOH’s who said that I had traces of blood in my urine and prescribed me antibiotics but they take time to work… if they get worse go to A&E. By the third day, I was so disoriented that I went to A&E. There was no blood in my urine and they decided the pain was down to my muscles compensating for the side effects of the Decapeptyl. I’m so lost, I need help…

[AllthatGlitters]

Hi, sorry you are so ill and struggling with health professionals, if it were me, as it’s Monday tomorrow I would call my GP and ask for an appointment for tomorrow, you can still be seen in surgery if they feel like you need to be looked at by a doctor 😀I am on decepeptyl and have bleeding on and off, I don’t think this injection suits everyone and I can’t wait to come off of it x

[Carla-B in reply to AllthatGlitters]

Thank you for your reply, I’m going to call my the specialist tomorrow and see what they can offer to help. How long have you been on the injections? They have worked wonders for me up until recently xx

[AllthatGlitters in reply to Carla-B]

I have had 5 of them now. Monthly. Are you on them until you get a hysterectomy? I am x

[Carla-B]

I have just had my x6 injection… my operation has been delayed because of Covid 😭 xx

[AllthatGlitters in reply to Carla-B]

It’s awful isn’t it when we are waiting, I am waiting for my consultant appointment which should be now and not had a letter. Here we go again, having to chase things. Are you having a full or partial hysterectomy? X

[Carla-B in reply to AllthatGlitters]

A partial hysterectomy but depending on the damage, they may take it all.

I have just been to the Dr’s, there is nothing more they can do, I just need to speak to my specialist who I can’t get hold of 😭. They said that they will write to them again xx

[AllthatGlitters in reply to Carla-B]

I feel your pain, it’s like going round in circles isn’t it x

[Carla-B in reply to AllthatGlitters]

I have finally spoken to my specialist... they wrote a letter to the Dr's x2 weeks ago telling them to prescribe me HRT!! My specialist thought that I was taking Tibolone to manage the menopause symptoms but they stopped it when I got headaches after the Covid jab and so I have slowly become depleted to the point it made me ill. My specialist has asked them to give me Oestradiol patches 50 mg and Provera 5mg if the Tibolone isn't working. I have been to my Dr's x2 this week and told me there was nothing that they could do... I'm so angry that I am making a formal complaint xx

[AllthatGlitters in reply to Carla-B]

That’s ridiculous to be told there is nothing they they can do, i waited 8 weeks to get HRT. Nothing seems to be done urgently does it, however to us we are sitting waiting all the time x