Can't do it anymore

Hi ladies. Hope you are all well today.

So I went the GP surgery today to have my third Decapeptyl injection and ended up having a full on panic attack at the thought of having this horrible drug inside again. The GP advised me to stop having it as it's been making me feel so awful but I can't help feeling like I'm letting everyone down.

I just want to be my normal self and not this depressed, tired, snappy person who is difficult to live with.. Never mind the other side effects I've had like hair loss, weight gain, acne, UTIs and bleeding. But now I know that the pain is going to come back and I feel like I'm in a lose-lose situation.

Have I given up on this drug too easily? Feeling like a total failure.

2 Replies

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  • No you have not given up too easily and you are certainly not a failure.

    Research shows that at best these meds serve only to dampen down the symptoms of endo whilst on them. They do not treat nor cure endo and research also shows any shrinking of endo is minimal. When you take this into account coupled with the side effects (some of which have the potential to be long term and/or permanent as I have personally experienced) then you have to question why you should continue with the injections.

    Thorough excision surgery (ie cutting the endo out not burning it/ablation) is the gold standard in the treatment of endo and this needs to be done by a skilled endo surgeon.

    If you are in the UK you have access to a BSGE accredited endo centre. These centres have been set up nationwide to treat endo as it is recognised that is a complex disease requiring skilled surgeons not just general gynaecologists who tend to only focus on the reproductive organs whereas endo can, and often does, effect other areas too.

    You can find a list of the centres at the following website: bsge.org.uk and then request a referral from your GP or gynaecologist as is your right to do so under NHS choices.

    Unfortunately not all BSGE centres are equal with some being better than others. Whilst we are not allowed to discuss individual centres on this forum unless through PM only, you can do so on a Facebook group called Endometropolis so it may be worth joining if you have not done so already to get some feedback on any centre you are considering requesting a referral to.

    I hope this helps.

    Best wishes, Jo

  • Hi Jo. Thanks for your reply. I'm not being seen at a specialist centre but my Gynae is a highly experienced surgeon who specialises in minimally invasive surgery including robotics and he performs excision for endo. I had some excision done in March this year but the issue is the large nodule that I have in my pouch of Douglas which is starting to invade my rectum. I'm currently on the waiting list to see a colorectal surgeon as my next step is a bowel resection. All of my issues are with my bowel. X

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