I've had such a long journey (my story is on my profile) and I've eventually started on some form of treatment plan. I was supposed to start zoladex last month but there a ridiculous mix up, causing a 3 week delay and I've ended up getting decapeptyl instead. I've found it quite hard to find people's experiences of this and I found it quite an unnerving process to do I thought I'd share what is been like for me.
The consultant gave me a request for the prescription that I had to hand in to my Dr. My GP then wrote the prescription that I collected and took to the pharmacy. I then had to collect the decapeptyl which a pack with 2 syringes, a bottle of liquid and a bottle of powder. I then had to make an appointment with the nurse and take the medication with me. I have no idea why this has to be so complicated and why I needed to be the middle man but that's what the process is apparently.
The injection was into my bum muscle. I'm really scared of needles and usually cry but this was really not that bad. I've never had an injection in my bum before and other than feeling a bit weird standing with my bare bum, it was really fine. Not all that painful at all.
It's been 24 hours since I've had it and I'm feeling pretty awful. I feel like my body is too 'buzzy' like I've had caffeine. I felt this way all night and didn't have a very good sleep. I also feel like I'm getting the cold so I'm not sure if that's in addition to all this. I'm ridiculously thirsty. I drank about 2 litres of water through the night and still feel like I can't get enough. I've been having pain in my ovaries that I usually get around ovulation. I just don't feel right and think I'll be spending today in bed.
I'll try keep posting about what is like.
I have been on decapeptyl now for four and half months, as I have tried everything else and nothing worked. I have a big chocolate cyst removed in May and still have terrible pain so I had the mirena coil, progesterone tablets and handfuls of pain killers every four hrs and nothing stopped the pain or periods so im now trying decapeptyl and pain killers. I can't say its been an easy ride and I have bad side effects from the drug, feeling dizzy, bad hot sweats etc but the pelvic pain was a lot better, try and stick with it - I definitely thinks it helps with the pain. The first few weeks weren't to bad, although I had a flare at the beginning, things did settle down. After the second injection my emotions were all over the place but that settled down now too. Still on pain killers every 4 hrs but I think it helps. I hope that helps xx
Thanks for replying. It's good to hear other people's experiences. It sounds like you've had a really tough time of it.
I've got a huge cyst too and I'm on this to shrink it for surgery, hopefully. My pain is bad day to day but better than it was. It was getting unbearable until I started using cbd oil 2 months ago. It's still there but nowhere near as bad. Have you tried it?
I really don't do well on painkillers so it's been a lifesaver. I had been taking codeine quite regularly and I think it s making me more sensitive to pain, apparently opiates can do that.
What's your plan for after the decapeptyl? Are you being seen in a specialist BSGE centre?
Xx
I haven't tried CBD oil yet but a lot of people swear by it, where do you buy it from and what strength do you take as they seems to be lots of different strengths/forms of it? I hate taking pain killers too but im on oxycodiene atm as they seems to help slightly.In terms of plan I don't have one atm as I can't seem to get anyone to talk to, im at my wits end. Any recommendations as to what I can do ? I don't have a life at all at the moment except struggling through work and bed. any advise would be great, even if its private and I pay for it?
That's no good that your stuck with all this. I don't think it needs to be this way but unfortunately I think we often need to get quite involved to get proper care, which is really hard when we're exhausted and in pain!
For the cbd, I take a brand called 'we thrive wellbeing'. I took that one because a friend recommended it and I didn't really know where to start. I did a bit of research and for pain, you're wanting to take a type called indica (not sativa) which usually helps pain, sleep and anxiety. Start on a low dose and build up gradually. I started with 10% oil, taking 1 drop in the morning and 1 at night for week 1,2 drops week 2 and so on. I kept at 4 drops for a while but have just increased it slightly again as I was getting a bit more pain with my last period. When I'm finished my current bottle, I'm going to start using 15% so I'll to reduce the drops again. It's a bit of trial and error but I noticed benefits after 1 week with my sleep. It took about 4 weeks before my pain was noticeably better. If been thinking about trying it for a year and wish I'd started it sooner.
As for getting help, I think I was in a similar position of feeling totally stuck. I didn't like how my gynae was dealing with me and I felt I was being dismissed. I eventually requested my medical notes and started trying to make sense of it all myself. I realised I hadn't been told everything, in fact I'd been lied to and I definitely wasn't getting the most appropriate treatment. So I wrote a letter to the Head of the BSGE endo Centre in my area with a complaint of how I'd been treated and a request to be seen by them for treatment (rather than general gynae). I got help to write this as I really struggle with fatigue just now (I'll dm you with the site that helped as I don't think I can say here). The endo specialist replied a few weeks later agreeing with me and offered to meet me. I met him at the beginning of Dec and he spent about an hour going through everything with me. He was amazing. He's now taken on my case and I've got an agreed treatment plan, which I feel 'happy' with (it's pretty brutal so I'm not happy in that sense but happy that I trust this Dr).
I think women with endo are so often dismissed. It's shocking. There are lots of options for us but they have to be done by specialists. General gynaes should not be dealing with endo.
I hope this helps.