The Pill?

Ok, so I was diagnosed with Endo in October 2011 in Ireland after a lap and was put straight on decapeptyl (The Menopause) That was a truly horrific experience one that I hope to never repeat (I will be a 90 lady on HRT), and my periods returned 10 months later with as much gusto and unpleasantness as every before. Now living in the UK my GP prescribed me diclofenic and codamarol. This was making it just bearable enough to stay at work during my cycle while I wait for a Gynae appointment. (I had asked to be referred straight to an endo clinic but I have been informed that the collectively agreed course of treatment in Herts is to offer the pill, painkillers and a gynae consult before further referral). On my last visit she again asked if I would try the pill and that it had shown several benefits to the treatment of symptoms. Not to be one to pass up an opportunity to feel even the slightest bit better I have agreed. I am now on my 12 day and boy am I having fun. First of all I've been spotting and peeing blood everyday since. The depression over the first 9 days was stiffling and I am just about getting my head back. I have been having pains everyday and while they are not as bad as a proper full on 4 day period the fact that it has been happening for two weeks now is getting the better of me. On top of this I am now experiencing a horrible sharp pain in my vagina. I have had sharp pains down there before but never so frequent. I would love to know if anyone else has gone through this and if you went on to get to a place where the pill has changed your life like my GP expects. I'm seriously considering just calling it a day on the pill, at least when I have a period I know what day its coming, how long it will last, how to make the pain more bearable and that on day 5 it will be gone for another 25 days, I do not have the same control at the moment

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  • Hello sorry to hear ur having such a shit time. I've been told I can't take the pill due to migraines so not sure what ur choices are. I would like to ask u about decapeptyl if u don't mind as I've just bn on it over a week and I see u had a terrible experience with it. I have had side effects since the first day but I've also been taking hrt livial. I've had a rash which is clearing up, joint pain, disturbed sleep, craving food, moods up and down, stomach and back pain and sharp pains down below too. Fed up already. How long did side effects start with you and how long did they last? When did night sweats start? Sorry for all the questions but I've bn given this with no information. Did u have a period after starting the injection? Really hope u can get some relief and it works out for you. I'm worried as from most things I read the endo comes back very quickly after an op. xx

  • Just wanted to add, I spent two years on zoladex which is a very similar drug and it helped me enormously - not only my endo symptoms but also my chronic fatigue improved immensely. It's only licensed for 6 months but my consultant kept me on it as it worked so well - this was probably an error as I now have ongoing issues with my hormones. However, I don't regret taking it as its the most well I've been since I was diagnosed. The side effects weren't pleasant but I got used to it.

    In terms of the pill, have they tried you on one with a low dose of oestrogen? I get migraines too but still take the pill - I struggled with a few types but once I found one that worked for me I didn't have any problems with it.

    Also, in some women endo does come back very quickly after an op but other women have years of relief - unfortunately there's no way to know how you'll react to an op or to any given treatment, but you may be lucky :)

    x

  • I don't believe it, just spent 10 minutes typing out a big long answer on my phone and the internet lost it!!! Love when that happens, I mean its not like I'm not already a woman on the edge!!! Basically my experience of Decapeptyl was crap. I had the night sweat and hot flushes about 2 weeks after the first injection (Had 2 11.25mg 3 months apart) In the end I stop fighting the insomnia and sleeplessness by doing housework and ironing and generally being a crazy woman. My moods were erratic and my tolerance was at zero which was not easy on my 4 year old. The joint pain was horrible about 2 months in, get used to not bending your leg under you because straightening it up again will be like having it broken! The worst of all was when the injection started to wear off after 10 weeks, my body played out 14 acts of Jekyll and Hyde trying to decide if I was in the menopause or actually 28 and fertile! The final kick in the nuts was when my period came back again and all the pain was as bad and still had clots in my stool (sexy). There should be more research done into the side effects of decapeptyl and the usefulness of it actually "reducing" endo. My doctor sold it to me as the miracle drug but in fact it just stopped my period for 10 months. I hope your experience is better than mine and that you are not under the illusion that this will "cure" you. That was the most dissapointing of all, to go through it and then be right back at square one :(

  • Ffs you know it happened to me aswell, feking phone wouldnt even send my reply so had to put comp on!! Nippy.. Anyways thanks for replying. I am glad to hear ur story but sad to hear how shit its bn for you. Its 2wks this wed since my 1st injection and fed up already, On edge is awful, mum pissed me off earlier and wasnt even that bad but i went upstairs to cry, up n down like a yo-yo! Had my lap done just in nov there and my periods were just as bad, no relief at all and apparently had alot of endo removed and burned, organs put back where they should be. I have read on the internet that the injections dont help endo or abrasions which confused me, i have read alot of stories on here or reviews on the net that everyones periods were never any better after being on a temp menopause. Im back at gynae in april for check up after 3months and if its still as bad im not doing anymore! Did you get put on hrt aswell? Also pissed off that i was sent away to get this injection with no info about it at all or even knowledge of any side effects and found out by reading the leaflet that comes wth them. thank god for sites like this. xx

  • Hi, I've suffered with endo for over 10 yrs. I have been on many different pills but none of them have helped. In fact the only thing that did help me was the decapeptyl injections. I have also tried the implant, the injections and mirena coil all to no avail. My periods came back with a vengence within 3 weeks after my decapeptyl course finished. I'm now booked in for a hysterectomy. Sorry my reply isn't much help but I hope you know you're not alone xx

  • Hi there

    I'm sorry you're having such a rough time - I've been on pills that have made me worse and pills that have been fantastic. It seems we each react to different pills very differently.

    It seems as though the pill you're on may not be strong enough to control your cycle completely, or the dose of oestrogen is too low for you which could he causing an oestrogen withdrawal bleed.

    I would suggest you go back to your GP and change pills ASAP as clearly this one isn't working for you. I usually suggest Loestrin 20 or 30 to people, since the progesterone contained is norethisterone which lots of us have been given on its own to stop bleeding completely. Loestrin 20 contains a lower dose of oestrogen so is preferable, but it may be you need the Loestrin 30 to control your symptoms. There's also a pill called Binovum which is often prescribed for people with irregular bleeding, or microgynon is the most prescribed pill as it seems to suit lots of women.

    Also, if you're peeing blood, it could be endo inside your bladder or ureter, but there are other potential causes so it's really important that you let your GP know - it may be a bladder or kidney infection which would need treating. Did you have this when you were on no hormones or only since you started the pill?

    The pill can be a great treatment if you find the right one for you, but I think lots of women understandably get fed up with it and only try one or maybe two, and then of course there are people that can't take it because of other problems, and there will be some ladies who don't suit any pills. However, if you find one that suits you it can be a great way of controlling your periods and endo symptoms without the side effects of other treatments.

    I was on the pill from the age of 14 until I was diagnosed at 21 - in the last 10 years I've tried every kind of hormonal treatment, and I currently have the mirena. I'm waiting to have it removed and when I do I'll be going back on the pill as its the only hormonal treatment I'll ever take from now on. When you find one that works for you, you can tricycle it and only bleed every three months - it reduces my periods from ten days to three or four, with no breakthrough bleeding. I've been extremely depressed since the coil went in but I don't get that way on the pill (I did try a couple in the beginning that didn't agree with me, but since then I've had no problems with it).

    If you can, try a couple more and see if you can find one that works for you as it could make a big difference to your quality of life. I know it's difficult in the meantime, but if you persevere and find one that works for you, you can control the bleeding without the awful side effects of other treatments.

    What I would say is, when you see the gynae, if they want to do another lap, the RCOG guidelines state that you shouldn't be on a hormonal treatment for three months before a lap to avoid under-diagnosis and treatment, since the hormones can make the endo more difficult to visualise and remove. Therefore it's worth speaking to your gynae about this and seeing if they want you to stop the pill before the lap - I've had some gynaes say no as it won't make any difference but it really has (I've had five laps and the only one where they found a lot of endo was when I'd taken several months off from hormone periods - they managed to remove a lot and I had a lot more relief from that op than I have from the others). If you have extremely severe endo, the gynae may actually give you a course of treatment before the op to shrink the endo and make the removal easier or may ask you to continue with the pill. Personally, unless there is an important medical reason not to, I wouldn't take hormones for the few months before a lap again - in my experience, the endo doesn't go away with these treatments, it just becomes inactive and possibly shrinks, so it can't be seen as easily of maybe at all. Once the treatment stops, it all flares up again - by having a lap when the endo is active, it means they can get more of it removed and you have a better chance of success. Obviously I'm not a doctor so you should speak to your gynae and decide what's best in your particular case.

    Sorry if I've rambled - I'm on loads of pregabalin at the moment and I'm a bit out of it!

    X

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