Endometriosis UK
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Thought things were getting better...

Hi, not sure where to start really but it's 3am and have been woken up bevause I am in so much pain and bleeding. Wouldn't mind so much except had 3month dose of prostap 9days ago (first ever dose of it). Up til now thought it had worked as was pretty much pain free and no bleeding for first time since June. Have been signed off work for past 6 weeks and actually yesterday felt so good was beginning to see light at the end of the tunnel but now feel like this has come out of the blue and I have been unceremoniously dumped back at square one. I have had endo symptoms since age 11 although took until 28 to get diagnosis. I am now 30. No kids but have boyfriend who I love dearly and who has been a huge support particularly over the last few months. I am employed as a teacher but the way I am feeling (and have felt many times in the classroom as I want to lie on floor and cry with pain) is that maybe I really have to choose another job as I cant go on like this and am sure stress of the job doesn't help. I just bought my first place this year and have been enjoying making it home now feel like will have to try and sell it if I can't go back to work. Feel like my life is being stolen from me. Wanted to come here when I had something positive to write...any thoughts/advice on prostap positive and negative would be appreciated. Also still have mirena coil in place but that due to come out next June. Thanks xx

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Hi - I'm sorry you had such a horrible night, and I hope you are feeling a bit better today.

I've never had the 3 month Prostap dose, I have the monthly injections, but I suspect they probably work pretty much the same.

When the Prostap starts to 'kick in' your body tries its best to fight back which results in that initial surge of the symptoms you've gone on the Prostap to get away from. It is disheartening, and it may take a little while to settle, but unless you are exceedingly unlucky it will stop. On a six month course I usually have to give it a couple of months to get itself sorted out but after that it's brilliant.

Give it a few weeks to get into your system properly and in the meantime remember that the endo hasn't won, it's just putting up a fight until the Prostap shuts it up.

3am is a crap time of the night when you are in pain and alone; everything is dark and cold. I'm not sure it's possible for anybody with endo to be totally positive about everything 100% of the time, but don't let it beat you down. Yes, some changes might be necessary, but do it on your terms; this disease already dictates so much to us.

Take care, and lots of love

C xxx

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Hiya Chrissie,

Thanks for your message - I took a lot from it. Once I felt more awake this morning I did some more digging around on the internet and realised that probably my body hasn't quite settled into a pattern yet. It's just such a help to hear from someone who understands where I'm coming from. Thingd seem to have settled a bit now and only needed two lots of painkillers and a heat pad but feeling a lot better now. I think it's partly the unpredictability of it all and even though two and a half years since diagnosis it's only been in the last few montjs that I've made any attempts to get my head round it. You will undetstand the double edged sword of things like hormone treatment when you want it to work so desperately but on the other you are almost scared to hope that it works because you've had hopes raised and dashed so many times. That's bad of me to say though as I feel a lot happier and more at ease tonight. I hope tjat all made sense! TFingers crossed this time I've found a solution. Thanks again for your message and hope you are keeping well too. xxx

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I think a big part of dealing with endo is acceptance. And by that I don't mean not having the occasional day when we're screaming "THIS IS NOT FAIR!" or "WHY ME??!" because we wouldn't be human if we didn't do that!!

I was diagnosed in 1992 and since then I've seen loads of things change in terms of how the disease is treated, and for the better, but the one thing that has remained constant is the unpredictability of the disease itself. I had my left ovary taken out about 8 years ago because it was constantly developing big cysts and in the end, after all the ops to remove all of the cysts, the ovary was ravaged and probably not doing its job anyway, so out it came. Since then, my right ovary has been completely quiet and well behaved in terms of cysts (I have scans every six months to keep an eye on it because of how the other one behaved) but I have been on and off Zoladex/Prostap for the general pain during that time. Last year, three months after I had finished a 6 month course of Zoladex, I went for one of my routine scans expecting it to be just that, routine, and completely out of the blue a 5 cm cyst had developed on my remaining ovary. I was absolutely gutted and so was my gynae, because the state of my insides after years of poking and prodding means that any surgery now is going to be a big deal involving bowel and bladder surgeons, but I went straight back on to the Zoladex for six months and it zapped the cyst away completely, there was absolutely no sign of it, which was again something we hadn't expected.

I think nowadays because everything is so 'instant' people think that there must always be a quick fix for everything, but endo won't play that game. And that's what I mean about acceptance being a big part of it all; there's no point getting cross at consultants or doctors for not being able to do anything to fix us because endometriosis is still very much a mystery to them, for the most part. As Nosh has said below, everything can be going really well and then boom, something happens and you're off on the roller coaster again. Or conversely, like me and that cyst, everything can look really black and then something totally unexpected happens to make things better. There's just no second guessing it, and that's really frustrating, but that's just how endo is. It's a pain in the backside (quite literally, sometimes!) but once you've got your head around the fact that is IS so unpredictable, it makes everything so much easier to deal with.

Have you seen the book Endometriosis For Dummmies? I love those Dummies books anyway, but the endo one is brilliant, it gives you all of the information you need about endo without scaring the hell out of you like some of the more weighty books do. Even after all this time, if I'm feeling a bit out of sorts I'll go and flick it open and have a read to remind myself that I'm not going mad, I just have a disease that's playing silly buggers with me. Have a look on Amazon.

Good luck with the injections, I'd be really interested to hear how it works out for you, particularly as you're having the 3 month ones. Feel free to message me if you want to :)

Take care, and lots of love

Chrissie x

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Hiya Chrissie, wow endo jas put you through the mill!! I know you are roght about the acceptance thing and the funny thing os up until the doagnosis I don't know if acceptance would be the right wotd for the way I dealt with all my symptoms but after in my teenage years because I had to come home from school so often, sometimes in so much pain I had to crawl from bedroom to bathroom I was just determined that my periods wouldn't stop me and they havent in the sense that I have travelled, taken up mountain climbing (literally) gone to uni and achieved my teaching qualification but I always in my heart hoped and believed there would be a 'fix'. As you say the major thing apart from the pain and unpredictability we have to get our heads round is that there is no 'fix'. I'm getting there on that one and I did get the 'for dummies' book. Like you I really like that seroes anyway so when I saw that they had one on endo I knew it was a book I had to read. It helped me come to terms with/explained a lot of the langiage used after my lap and also helped me to form a lot of questions for my next app with gynae. It also made me realise that as a teen (and now) I am not going mad. The other night I think I had reached a point where I didn't want to accept that the prostap wouldn't work and I know now that it might just be a blip until things settle. I also in my head know that prostap isn't the last option but I know if it doesn't work the list of possibilities gets smaller. I can't thank you enough for taking time out to write to me. It really does help to have someone who can offer advice and support and who understands where you're at. I'm teally glad you have found something that worked for you and that for once endo gave out a nice surprise. I will let you know how I get on. Today is better, spent most of the day asleep and am still bleeding although not like yesterday and a wee bit twingy but nothing that can't be forgotten whilst mind is occupied on something else. Be good to have positive news to report soon! Fingers crossed!

Does this site have a way of sending messages other than on the main blog boards? I am new to this site so still finding my feet a little.

Thanks again and hope you are keeping well.

Lisa

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aw love that is so awful to hear im so sorry! but i totally understand i was teaching abroad and had to come back home because of it :-( and also the times i start to feel better too i think omg the endo is away and then it comes back with vengeance. i was taking hormone tablets everyday and for about 3 months everything was great then after that i was the same as u now. i just came off them and dnt ever wish to take hormones again - coz by the sound of what people have said and by own experience with any sort of hormone treatment the symptoms go from so good to so bad, without them the pain is kinda balanced for me. I know what its like to be alone too i have no one to help even when the pain is horrendous i need to do everything on my own - not that im feeling sorry for myself or anything but just to say we all know how u feel and your not alone even though it feels like it!

i dont think anyone can understand not even doctors if they havent experienced it, no one listen to me anymore when i mention the word pain however when im say im fine everyone is here! ppl r so great!

how are you feeling now? hope your a lot better!

N xxx

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Hi NoshB,

Thanks for your message and support. As I said above the best thing about this sitr is that people understand whst you're going through and can offer support and advice and it's such a relief. I am feeling much better again now so I hope that everything has settled down more permanently. I hope you manage to find some relief too and that you are well today.

Thanks again for your message. L x

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