22yr old Decapeptyl

[Jellybelly32]

hi I’m a 22 yr old who got diagnosed with endometriosis stage 2 in November 2022 through a laproscapy ablation. I had a terrible month after surgery and was back on a NHS ward 2 weeks after the surgery. Since then nothing had got better and I was really unwell for 6 months with bad abdominal pain being sick and not being able to poo for days. I went back to my private doctor and was sent to a gastroenterologist who found nothing. I had to go see a different gynaecologist who put me on decapeptyl to see if it would work in October. Since then my insurance will no longer cover me and I’m waiting for an NHS appointment. I’m in my 4th out of 6 months of decapeptyl and was wondering what happens when I have to stop as I have about 3 weeks before I see a gynaecologist on the NHS and have no idea what to expect or what to do. Any advice or hints on how to get through would be amazing

[1Poppy1234]

When I finished decapeptyl at Christmas (I'm 51). I bled within two days and was awful so I started the desogesterol mini pill straight away they e just doubled my dose as I've had two weeks of bad pains period etc. I had Oramorph ready as I was dreading it. Hopefully you will be fine but for me it was dreadful quite quickly. Do you have a plan b? Mini pill etc. I've got Adenomyosis too.

[Jellybelly32 in reply to 1Poppy1234]

I don’t my only plan is to ride out whatever happens till I see the new gynaecologist or I guess A and E. I just wanted to know as it might be a convosation I can have with my GP but wanted to just see what other peoples experience has been

[1Poppy1234 in reply to Jellybelly32]

You can get help from the GP with the pill etc definitely, just that not all GPs seem to understand it.

[Jellybelly32 in reply to 1Poppy1234]

I see, mine is really nice about it but doesn’t want to interfere to much but is helpful to know so we can have the conversations now just incase

[Lindle]

Have you had scans?

[Jellybelly32 in reply to Lindle]

I’ve had a load done last July a few MRIs and ultrasounds. But nothing since then as I don’t have a gynaecologist atm

[Missfifij]

How was the decapeptyl injections? I'm about to start it but I'm scared of making the move to have the injection. I'm 39 and just been diagnosed with endometriosis. Did you have any side effects etc?

[Jellybelly32]

hey I had mine after a laproscapy to take out the endo. But it’s the best I’ve felt for years I still have a few bad days but I feel like I’ve got my life back. The main side effect is the hot flushes and sweating which have been really manageable I just stand outside and tiredness but better than it was. I’ve had a few times I’ve been sick out of nowhere but clears up and it’s made me a bit crazy at times. I don’t know what it’s like for everyone this is just what I’ve experienced. The only thing I’d say is really think about it as it isn’t a little thing it does feel like a big change but for me the risk and side effects felt like nothing compared to what I was going through, and have a long talk with your doctor as there are different things they can give along side to help. I hope this helps