an ouch rant, i'm in complete agony :'-(

hi ladies,

i really need to vent off, well not even vent off, just have a big moan. I have had my fourth and final prostap injection over 3 weeks ago. My pain symptoms had practically gone finally after 3 months of waiting, today though all that has reverted back to its old ways and an awful lot worse.

My dad had surgery on his neck this Wednesday just gone, he is already paralysed from the waist down and the surgery on his neck was to prevent his arms going the same way. After surgery unfortunately his left arm was lost to us, he had no feeling or movement in it, thankfully today he managed to lift his thumb and wiggle a few fingers, we were beyond elated to say the least. That was at this afternoons visiting so its safe to say i couldnt wait to go back this evening to see him do it again. Thanks to this stupid disease ive been unable to go. I am doubled over, i struggled to drive home from my parents less than half hour ago and their house is literally 3mins from mine.

Last night I went out to a bar with a very good friend, we sat on sofa's so i didnt have to stand on my heels but could enjoy the music and drink. we got in just before 3am and got to sleep at half 6 due to special cuddle time. I was aching after as usual so thought here we go again (im so used to it that i just put it to the back of my mind) but no not today, 8hours later i could just about hide the pain, he felt awful, 12 hours later i am walking like an OAP. i dont go out from month to month - I am 24 and shouldnt have to think i cant live my life because of this stupid disease. I have shed a few tears and im not a teary person. Its killing. On top of it i think i have a water infection and have nothing in my house except water and squash which 3 pints later hasnt helped :-(

I feel awful that i couldnt go and see my dad, my parents are sympathetic but its just not fair, yes i am throwing my toys out the pram but im in that frame of mind. I have a dog and usually i walk him for hours when im having a down moment but down moment + severe pain = feeling sorry for one self. My stomach has also become so swollen. Ive always been a size 8/10 with a washboard stomach which is all thanks to my gymnastics days, i am currently sat with my back up size 14 pj trousers on as my normal ones are too tight. The pain is just, well words cant describe it. its like someone is pulling it in all directions, its a dull ache but extremely greater than normal combined with shooting and sharp pains on both sides. When i walk it sends me through the roof.

anyway, i will leave it there, im going to watch beauty and beast to try to cheer me up.

Thank you for reading/listening, i know none of it makes sense and is all gobble-dee-gook, lol. I hope the rest of you are doing something more exciting on a saturday night xx

3 Replies

  • Oh hun, really feel for you, I had a god-awful night too. My 3rd prostap this week and absolutely no change painwise!! Hugs. Xxx

  • Hi

    Some people need to be on Prostap long term and it took me 3 or 4 months of Prostap to be pain free. I would tell your GP to put you on the 3 monthly prostap injecton and to be on it long term. I've been on it over a year now fully. If I come off Prostap I start with the Endo pain straight away. Just found out my doctor only gave me a monthly injection at the end of May, 4 weeks ago I started with pain so I spoke to my GP about experiencing endo pain again and he admitted he'd given me a monthly injection and that I should of come back for prostap at teh end of June (even though I thought end of august was my next Prostap Injection) however I was only ever prescribed for a 3 monthly Injection so my GP admitted his mistake, I thought Prostap wasn't working for me any more but it wasn't the case.

    Told everyone on here before I was suffering for at least 9 yrs and at one point I was 5 stone 10lb and I totally sympathise with Digger because If I was to move around if would set my pain off and I use to be doubled and because my pain was that bad I would end up vomiting with the pain. I use to get called a Morphine addict, anorexic because I was painfully thin and everyone could see I was in pain but I was misdiagnosed for years with IBS but I wouldn't accept that I could be in so much pain with IBS. So for everyone on Prostap hang in there, ask to go on the monthly injection and get Prostap long term because with Endo your pain will come back straight away as I've tried coming off Prostap myself.

  • Ladybird i do hope that they do ease off for you soon, i know mine were no different until my final one, i had almost 3 weeks pain free :-)

    Jubbly, thank you for your advise, I shall deifinitely speak with my Gynae at the end of the month to see what he thinks. I know they said they would only put me on the 4weekly ones for 4months max as before my 2nd lap my left ovary had stopped working and they didnt want to encourage this again. I will mention it though and see what he says. They had mentioned IBS to me over the years and - i dont know if its the same with you - but my gut instinct was telling me it was something else and they'd got it wrong.

    It annoys me though that i had to increasingly suffer over 8 years before getting a diagnosis, its just under 10 years now that ihave been suffering and im 24, i hate that they kept sending me away saying i had a low pain threshold - taking into consideration i was a gymnast, represented the city, had russian coaches and trained for 24hrs a week after school and weekends, was passing out in the gym some months but no i had a low pain threshold. i havent started on Morphine yet, but if it gets worse i may have to just so i can earn a living. i just wish they would have dealt with it sooner. my friend was recently diagnosed with Endo within a year of her making her symptoms aware to her gp. I dont resent her for it by any means, im more relieved that she doesnt have to fight for herself but it just gets to me that hers has been spotted early, she has stage 1 and im at stage 4 and riddled with endo and adhesions. I know that has just gone off it a little but sat at home Saturday night, not able to visit my very ill dad in hospital just got me thinking.

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