Can Prostap somehow trigger endo when no symptoms existed before that?

I know the use of hormone treatment to try to "control" endo, and that on stopping hormone treatment, the endo can come back, but putting that aside, is it possible hormone treatment can TRIGGER endo once the treatment stopped?

The Poll about how old you were when had first endo symptoms got me thinking - When I was 35 years old I had 3 monthly Prostap injections (completely unrelated issue), periods returned 3mnths later and my very first endo symptoms started a couple of months later! (then had Lap and diagnosed with endo).

Until the injections, periods had been a bit on the painful side, and I know endo symptoms can come back when hormones are stopped but I didn't have these symptoms before the injections! Is it possible the hormones could have triggered something somehow cos it seems a massive coincidence. What does anyone think? Sara

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  • Yes it could. In theory. But you would have had to have endo already there, the drug causes a flare stage when you 1st re put on it, this overwhelms your body with hormones, and boosts everything to be extra active, which then results in the piruitary gland shutting down, due to the overload.

    So if you did already have endo, but it wasn't causing you noticeable pain before, (due to luck more than anything) then this boost of activity could in theory cause the endo to be more active than usual in the 1st couple of weeks and that may be enough for the nerves near to the endo to start getting irritated and sending pain signals back to the brain.

    But you would have had to have endo already in place for that to happen.

    Remember that not all endo causes pain. The pain is caused by scar tissue and also by bleeding that irritates other tissues. It is possible to have masses of endo and not feel that much pain each month if you happen to be lucky that the endo is not affecting sensitive nerves. This is why the disease is so insidious, it can go undetected for a long time, but also it can be masked by the pill, or pain killers.

    So the poll was asking when you first experienced the symptoms of endo?

    If you didn't notice before you were 35 and had prostap then put 35+

    I certainly had symptoms from as soon as my periods began aged 13, and mum took me to the GP when I was 14 about it. And I was told it was 'normal' it would settle and so on.

    but that was a long time ago, and countless doctors ago. All have fobbed me off till I was in my 40s and a move of house to a new GP surgery and wow things were finally taken seriously and by then it was a serious situation.

  • Impatient - thanks so much for that - it all makes sense, cos like I said I DID have periods that were on the painful side so that was actually probably my very first symptom, then the prostap caused flare etc etc. Aaahhh, all makes sense! I didn't know it could cause I flare up. I'm really pleased you replied cos I'v wondered about this ever since my "real" (you know what I mean) symptoms started after the prostap. Do you know, I even suggested this to a doctor, yes a doctor, who should know, and she insisted it was a coincidence and that Prostap couldn't do that! Anyway, you've explained that brilliantly and I'm very grateful! Sara xx

  • Cant explain this any better than impatient ! Can confirm though,from my recent experience that stopping hormonal treatments c auses a huge flare.I have been on lots-pill,decapeptyl,synarel and now depo provera and each timneI have stopped I have ended up in hospital with a huge flare and unbearable pain.My most recent was Dec 2013,when I came of Depo ,or more accurately was delayed a week in getting jab due to not getting a nurse appointment on time.In hospital I did have burst cyst and kidney infection,but pain has continued even though I went a week later to have Depo jab.Consultant in hospital said it can take 3-4 months for brain to adjust to either starting or stopping hormonal/anti hormonal treatments.Also all all treatments -the pill,depo,gnrh agonists are not cures -they only supress and dampen down pain -endo is still there albeit in an inactive form.This can also explain why you can have a lap,soon after a treatments and no endo is seen.It takes a skilled surgeon to see the signs of inactive endo.I have had 2 laps taken right after stopping treatments ( which controlled all the pain) and in both it was said the endo was in an inactive stage.

    As lots folk have mentioned on this forum -the only possible cure for endo is total radical excision- getting every single bit of endo cut out and this is only performed by a minority of skilled surgeons.

    Hope this helps.

  • Hiya Daffodil - I had Lap Apr last year but they only burn it off. Was practically pain free for 2mnths then all gradually started coming back, noticeably worse with each period. I can't have any hormones ever again due to health reasons, so all I can do is keep getting it removed - not ideal I know but hey. Can I ask to be sent to perhaps a different hospital where they DO cut it out? I don't know how it works. Don't really fancy a Lap every year til the menopause (I'm 38). Thanks again. Sara xx

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