Financial Supports & Decapeptyl troubles

[Quackers9]

Hi all,

This is my first time writing here but I’m at a loss right now and don’t know what to do.

I had my diagnostic laparoscopy in October where I got diagnosed with Endometriosis, Adenomyosis and PCOS. This comes after 12 years of pursuing answers to why I was always in pain and had a mix of symptoms.

Following the surgery I was put on Decapetyl and livial. The first round of HRT was a week after my surgery and I’ve not been the same since. I am due my next shot on Monday and really don’t want it as I feel like it has completely ruined me mentally. Physically I’m also in a lot more pain daily than I was prior to the injection and surgery.

I’ve been off work here and there since the surgery and HRT because I’ve been struggling. I have now been signed off by my GP starting at 4 weeks, due to my mental health plummeting. She said based on what’s going on it’s an expected outcome.

I just don’t know what to do regarding financial support. I’ve no more sick leave to use at work and I’m feeling so much pressure to get back to work due to the financial strain but my body and mind aren’t cooperating.

I am originally from Ireland but based in Scotland right now so I’m not sure how anything works over here regarding the supports.

Although given everything that’s happening right now I’m more than likely going to leave and move home to Ireland as I need my family and friends right now but I still need to support myself some how until I can make that move again.

I’m booked in for an appointment at the end of January to dicusss benefits support but I’m worried about this also as by the time the appointment comes around I’ll be a month without pay.

Does anyone have any advice or experience with Decapeptyl, and if so what do you make of it all ?

And if anyone had any idea of supports for people in this situation to try and cope with the financial strain these conditions bring ?

Thank you ❤️

[Quackers9]

Thanks so much, I’ll look into this and I’m so sorry you ever had to go through this. I’ll sign your petition ❤️

[JulesUK]

Signed. x

[atealdeer]

Hello. I'm sorry you're suffering so much. I started Decapeptyl and low dose HRT at 39 and was on that for nearly three years. I found the first three months a total nightmare and the rest of it brilliant for pain reasons - and anxiety and OCD symptoms I'd suffered over the years. I think some doctors don't prepare you for this, but the Decapeptyl puts everything into overdrive at first, so you should expect your symptoms to be worse than ever for the first month, they'll gradually improve until they all hopefully go away. This is exactly how it worked for me and I seem to have been really fortunate to have seen a doctor who explained that to me beforehand. Three months in and my life had changed for the better. It's been like a holiday from all the pain and life being dictated by ovulation and period week pains. I went from being incapacitated two weeks out of every four to living a normal life.

I have been off the treatment for a few months now and am waiting for my first period, already have some symptoms back. I'm seriously tempted to go back on it, which my gynae is happy for me to do if I feel I cannot cope. I would advise you to hang on if you can, but I also know that advice wouldn't have helped me when I tried different things to help. It's all very personal.

I'm afraid I have no advice about accessing benefits as I was self-employed and home based during the worst of times, so I didn't deal with the benefits system - but was very poor, but you can at least put in a claim for PIP (and maybe ESA, but not sure about that now) and make sure you talk about your worst day, not your best day. I wouldn't want to get your hopes up as it is very hard to get. If you can hang on for the chat with the benefits advisor.

I know it must be incredibly hard being away from home going through all this. I have to say, if your main issue is endometriosis then my understanding from my Irish family is that provision for endometriosis treatment over here is far better than in Ireland. But sometimes you just need your family around you. I really wish you the best of luck with everything.