Had lap and they couldn't remove any and now on prostap!!

Had a lap 2 weeks ago and hey told me my endo to bad and it couldn't be removed, now I'm on prostap for 6 months. My doc hasn't really explained anything, what happens after 6 months? Another lap or nothing? 2 weeks ago I thought my troubles were ive and the endo was getting burned away now I have 6 months of injections then god knows what.

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  • For me, coming off Prostap was a nightmare. It had helped to temporarily resolve an endometrioma but once off and I was allowed to have periods (which i'd not had for many years) I was in a lot of trouble.

    I don't mean to scare you but I think it is extremely important that we prompt long term care plans with the hospitals in which we have care, not just options until the next appointment. Prostap is not a cure, it is short term relief and so your symptoms will return over time. Please push conversations with your dr that encourage them to consider the implication of the treatment for the next 5 years.

  • My periods didnt stop with the endo I was regular just very painfull and heavy. I'm not looking forward to the symptoms you get with prostap. Endo is just horrible. Do u still suffer with it? X

  • i had my first lap last week and i was told the same thing.....too much endo to even try :/ and surgeon just said hysterectomy and ovaries or try the injection for 6 months. he told me this just minutes after coming round from anasetic so was hard to take it all in.

    from what i can see these injections that they do for 6 months is just fake menopause, but if you can only have them for 6 months as its not deemed safe for any longer, then its just delaying the inevitable if you've been told to have a hysterectomy, which for me is fine, i dont have a problem with it as long as they remove the endo at the same time, as i would've thought the whole op is pointless unless they do remove it.

    i've had my next appointment through already with the consultant so i will hopefully be a little bit better informed then, but i almost feel a little cheated from my lap, when you get told you're having a diagnostic/treatment lap but nothing gets done, and my endo pain seems worse than it was, my op pain is gone really.

    make sure you ask some more questions, like sj above has said get them to say what they have planned for the next few years for you, or to at least give you all options xxx

  • Hi, the prostap injections do induce a temporary menopause and I know there are lots of horror stories out there but for me they have been a lifesaver. I had 6 months then a break for 6 months, it took 6 months for my period to come back which was a bad one, so I went straight back on the injections. Without them I literally can't walk to the bottom of the street and I have a 6 year old to look after so that wasn't an option. I have now had another 6 months and can have them indefinitely until my next op is sorted out.

    Without HRT it was very difficult but with the HRT I don't find it too bad in comparison to what I was like before so it could really help you. They are normally given for no longer than 6 months but can be given for longer as long as you take the HRT, this is because of the risks of bone loss. I think you can have bone scans if you are worried too but i haven't.

    Like you I am waiting for a hysterectomy but I am hoping to have excision done at the same tome to save having 2 ops which seems ridiculous to me.

    Give them a try, if you don't like them you can always stop. There are side effects but you have to weigh benefits against them, for me it's worth it! xx

  • Hi thanks for these comments I feel like I know more, like you they told me as I just come round and I haven't a clue what's gone on or what it was like, they have already given me my first prostap before I left the hospital and my next consultant appointment is not for 3 months, so 3 months of not knowing and 3 injections later... I haven't been offered hrt I am so worried of the side affects. I went in hospital thinking no more pain and everything was being sorted finally and now I'm more in limbo than ever :( no one around me understands as they don't feel the pain so your comments mean so much. Thank u x

  • I am shocked to read form others that they were told there endo was too bad so didnt remove it. I would suggest getting a different gynaecologist. I had my first lap in nov and had severe endo, organs stuck together and ovaries covered in cysts. I had most of mine removed but it has unfortunately caused me more problems and pain. I was put on temp menopause but suffered severe side effects so have now been put on a different one and again having bad side effects. U can have the treatments longer if they gynae thinks it will help but make sure u know all info about what ur going to do if u decide to because if i knew what these hormone treatments could cause i would defo not do it. There is no cure for us im afraid and probably more ops to come. Hope ur all ok tho xx

  • PLEASE go here and find an endometriosis specialist in your area bsge.org.uk/endometriosis-c...

    I've been through being told my endo couldn't be removed but now I'm seeing a specialist who is more than willing to do it. Hysterectomy is not our only option and is not a cure.

  • Hi, this is the link I saw somewhere on here, which shows Plymouth as a endo centre but on your link it doesn't show Plymouth, so now I'm really confused lol, just wondered am I missing something xx

    bsge.org.uk/ec-BSGE-accredi...

  • Ah I think the one you posted is more up to date than the one I posted, they're adding more centres all the time :-)

  • Oh I really hope plymouth is a proper endo centre as its close to me xx

  • I didn't know if maybe they worded in different ways, that maybe plymouth was heading to be a specialist centre or something, hope that makes sense lol xx

  • I could've written this myself!! I had a lap in sept last year for unexplained infertility have (two girls and was trying to concieve for three and half yrs)which showed stage three endo and my consultant didnt treat mine either.i was drowsy and nauseated when he explained my next option would be prostap which I started believing it would help.Despite hideous side effects,night sweats,hot flushes and awful migraines I completed the treatment of six months. My last jab was in feb and I only saw my consultant again yesterday. Apparantley the prostap was to give my body a rest and much to my disappointment will not help my fertility!! Total waste of six months in my opinion and they keep referring to my age (35) like I'm past it.Feel old,useless and pissed off that everything takes so long and yet they keep telling me I'm not young anymore. Endometreosis is a curse!!

  • Hi choccyholic, reading your comment is really making me re-think taking any more prostap, it has been 3 weeks since had lap and prostap and I'm still bleeding, my body doesn't feel rested at all and if its not helped you I'm thinking is it really worth taking the risk? I'm 30 in may were not old and past just the dreaded endo..... I have 2 kids and now I think I have to realise I prob won't have anymore xx

  • Hi tina29!! sorry to sound so negative re prostap but I struggle to think of anything positive about my experience apart from being period free!! I won't ever have those injections again personally but did bear with it as I'm stubborn!! Was annoyed that it won't affect my poor fertility but that's my issue I need to deal with.im struggling to get my head around no more babies!! Every one keeps telling me I'm already blessed and I'm so aware of that but it hurts like hell still.think that's why I persevered with the injections so I didn't have to think about

    things for a few months.what I would suggest is going to see your gp and getting them to explain prostap.im regretting not doing this and ended up just reading the leaflet that came with the jab.pretty poor when I think about it,I'm a nurse myself and like to think people deserve to know exactly what treatment they face,side effects and of course other choices.

    Good luck to you x

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