Follow Up Appointment / Flares

[MeganR93]

Hi all,

I haven't posted in a while, not since I started having my prostap injections - which I have since completed back in August, I got my period back in November so that was a relief. However I've noticed over the past few weeks that my pain is back and it seems to be worse than ever! I'm having to have a hot water bottle on pretty much all the time and the only thing that takes it away is Tramadol I was wondering if anyone else has any advice or info after they've finished their course of prostap? I have a follow up appointment next Wednesday so I'm going to beg them to operate again because the last time I had a lap they couldn't burn away the scar tissue due to it's placement. They did say they might be able to cut it out so fingers crossed! Any info would be appreciated because I am really low at the moment.

[MaraudingManaged]

Hello!

I'm sorry to hear that you're struggling with the pain at the moment, I know how awful it can be.

Unfortunately, when on injections like Zoladex or Prostap, it doesn't actually stop the growth of endometriosis. It can slow it, and reduce pain symptoms, but nothing can physically stop it whilst the endometriosis is present and it will continue to grow - it has it's own oestrogen supply lines that aren't strictly linked to the ovaries, from my understanding of a few medical publications I've read has been.

As such, realistically you will need excision surgery to cut away and fully remove as much of the endo as is physically possible by a trained gynae who has an interest in endo, or at a BSGE centre depending on severity or level of recurrence. Ablation, or burning away, is useful in some more delicate areas like on the ovaries, in areas of soft membranous tissue like the bowel and bladder, but excision can and should be used wherever safely possible to ensure as much is removed as possible. As you might know, ablation only removes endo to the flat of the surface and if any sections remain below the surface of the pelvic wall, just for example, they will still regrow.

One thing I would recommend is going back to your GP to look at different pain medication. Opiates, like tramadol, can make you feel more depressed than you usually would be - especially on long-term use. In fact, long-term use of any opiate is generally a bad call because tolerance is built up and then you need a stronger one to get the same level of relief. They might want to look at more appropriate NSAIDs, or nerve-based painkillers like amitriptyline, duloxetine, gabapentin or pregabalin. All come with their own side effects but they're something worth discussing with your GP or in your follow-up appointment.

I hope this doesn't read too stiff/formal haha! I just get into a zone and we had a big discussion in the support group I run for Endo UK in this month's meeting about pain management with some notes I had made from a specialist talk

Lexi x