Taking Prostrap and still in pain - Endometriosis UK

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Taking Prostrap and still in pain

BecciBritt profile image
15 Replies

Hi everyone i need some advice, Heres my story, i was sterilized in 2009 with filschie clips as i had 2 children and all contraceptives made me depressed. However after being sterilized for 6 months i started getting pain in my left side. After constantly going to different doctors they didn't know what it was, at one point i went to a&e where the admitted me for possible appendicitis, which did not have and they sent me home still in a lot of pain, they said it was just ovulation pain, eventually i walked into the doctors and broke down to which they finally referred me to a gynecologist. I was given a laproscopy on November 30th 2011 to which they found that i had endometriosis which had fused the filschie clip on my left tube to my pelvic wall and i had a lot of fluid in my pouch of Douglas which i had drained. They removed 15mm of my left tube along with the filschie clip. I started pro strap 3 weeks ago now and i am also on livial, i am still in a lot of pain and im starting to feel depressed again, has anyone else who has been on pro strap had this happen, i am totally exhausted and fed up of feeling like this now, any advice would be really helpful x

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BecciBritt
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15 Replies

Hi, I took prostap for 6 months, it can take a couple of months to feel any difference. Everybody is different and reacts to it different. I didn't notice much improvement while taking it. I hope you have a better outcome. Good luck. Sarah xx

hknight profile image
hknight

Hello becciBritt, I've been on prostap now for. 6 months now for very severe endometriosis. The first month I took it, I actually felt even worse than I did before I took it, but hang in there, as you do eventually feel much better and half normal again. I'm dreading coming of mine now, I'm waiting for the last injection to leave my body now. Good luck hun x

BecciBritt profile image
BecciBritt

Hi thankyou for your responses, two very different responses, i am having the worst pain at the moment i have ever had, the cramping is extremely painful to the point i feel im going to pass out. i went the doctors last night and he has put me on antibiotics as he thinks i have infection due to brown discharge. He has also suggested putting me antidepressants but i really do not want this. He has booked me in to see gynae today to talk to her about my options if i stop prostrap. I am stuggling to come to terms with this at the moment, Im thinking of just having a full hysterectomy just for some relief :( But i have been reading stories that endo can still grow after. What are the options if i stay on prostrap for the 6 months, what will happen then? will it just return again once stopped?

Paper_Butterfly profile image
Paper_Butterfly

Hi

Sorry to hear you are having so much trouble. I would really suggest you stick with the Prostap, it really takes about 2 or 3 months for it to really take effect.

However, I think what is causing your pain and bleeding could be the Livial you are taking with the Prostap.

I had the same problem with the Livial as it is a HRT with can actually feed the endo and make it worse. You can always find a different HRT tablet.

As you have only been on it 3 weeks you don't really need to take the HRT for brittle bones etc just yet.

I hope this helps?

Best wishes

X

bophead profile image
bophead in reply to Paper_Butterfly

HI,

Just wondering did you take any other HRT while on prostap or any natural alternatives? I didnt get my livial repeat after the first month as as my fiance described I was 'a bit crazy' lol. Ye I was angry, emotional and moody. I had my 2nd 3 month injection last month and I am about 80% pain free most of the time. I'm feeling really rubbish, bad skin / hair, night sweats / hot flushes etc .

Thanks :)

BecciBritt profile image
BecciBritt

I understand that it might get better but i cant cope with the depression again, i suffered quite bad in the past with it and it was all on contraceptive hormones, to the point the lady at the clinic drove me back to the doctors who sent me straight to psychologist. If i was to continue on pro strap and i did take anti depressants after the 6 month treatment wouldn't the endo start to grow again? Im so confused with it all :(

Fletch profile image
Fletch

Hi BecciBritt,

I'm in a semi similar position as yourself, in that I have had 3 Prostap injections so far and am still in pain. I, like you, had been thinking a bit more seriously about having a hysterectomy. I'd reached a point where I lost all hope, and couldnt cope anymore. So, I went to see my specialist and told her how much I was struggling, and that I wanted to speak about having a hyseterectomy. But, she wouldnt even entertain the idea. She told me that if the Prostap injections arent working, this is indicative that a hyseterectomy wouldnt work either. She said that it is more likely that my endo has spread elsewhere, outside of my uterus. This might be the case with you. She has refered me to see a bowel specialist to see if the endo is there. If not, the bladder. If not the abdomin. Im waiting for referals. You might be in the same position as me, so maybe you should ask for other referals than gynaecology. You just need to pust the GP's. They wont do anything unless you nag at them!

Hope this helps a little.

Aimee

BecciBritt profile image
BecciBritt

Hi, just been to see gynae and he said it hasn't kickedin yet and that he only wants me to take one more injection and if in 6 weeks time its worked and stopped the pain he will book me in for a pelvic clearance. If it hasn't then they will have to refer me to a different dept as itcant be endo . He explained everything to me in great detail, he was the best doctor I've see ever, he wants me to only see him now which I said yes too x not enough doctors understand this condition! Thankyou all for your great advice has really helped xxxx

BecciBritt profile image
BecciBritt

The prostrap hasn't kicked in x

Lucylu88 profile image
Lucylu88

I am on Zoladex, which I think is the same as prostrap. I have had 2 injections, next due tomorrow, but now I am on morphine. I am also struggling, I had pain for about 2 weeks per month b4 zoladex, now I am in constant pain, can't eat, have lost a stone! I am at my wits end and do not know which way to turn! I hope you don't suffer like I have and really hope it helps you soon xx

chatterboxcharlie profile image
chatterboxcharlie

I have been reading these comments and i like yourselves am in the same position. i have suffered from the age of 11 and i am now 21. I have also been put on prostrap and HRT and have been on it about 2 months and it doesnt seem to be working. i am getting pain more frequently too and it seems to always be at the top of my stomach as well as my uterus and ovaries.

I am curious to know what did the doctor you saw say would happen if it has spread as i have a very strong feeling mine has :-(

I am so down with it all as i feel no1 listens or understands. would be grateful for some info if you can. thank you

Charlie

xx

Lucylu88 profile image
Lucylu88

Hi Charlie, I am waiting for a scan on monday (my birthday) but as you probably know this won't show endo. I have been back to the docs several times, as pain is severe.

I am due zoladex tomorrow and don't know what to do. The morphine and codydromol mean I am managing the pain, but I have 2 children and they are with family as I cannot look after them.

Like you I do not know what to do as painkillers are not going to solve my problems. I had adhesions in my last surgery and I am convinced that the surgery has caused more adhesions! I understand totally what you are going through, I just wish the doctors would understand and help us more!

I don't really know where mine is as 1st doc said not on bowel, 2nd said it was!

I find this all so confusing and cannot see an end to it

I will help as much as I can xxxxxx

BecciBritt profile image
BecciBritt

Hi, my doc never said anything about spreading, although i thibk mine has too, was looking up side effects of prostrap earliar, and one of them is abdomen pain!how ridiculous that they give it to women with abdomen pain! Bit confusing really, my pain as eased slightly today. Thank god however feels more painful in my hip bones for some reason. Got my next gynae appt on 6th march, so they can book me in for pelvic clearance although I'm slightly scared of having it done, I hopefully will see an end to this god awful pain.

Fletch profile image
Fletch

What is this pelvic clearance? Ive not heard of it mentioned before?

BecciBritt profile image
BecciBritt

hi, sorry took so long to get back, its a hysterectomy i have found out, i wen back to hospital last week and was basically told no i couldnt have one as i was too young, things got rather heated with yet another new doctor, getting really fed up with seeing different ones everytime i go :(, anyhow they want to keep me on prostrap till july which i am not happy about as im still having pain, i had 12 days in total since feb 8th with no pain. When i was at the hospital i broke down because he would not listen to me, i ended up walking out in a wreck, the next day the gynae secretary called me to check that i was ok, and if i want to i could ring them and book an appointment with the head gynae whenever i want. Feel totally let down once again, its like two steps forward 3 steps back! Im going back to my doctors friday to get him to refer me to a different hospital as i want a second opinion. Totally had enough, this is no life, really depressed right now and future looks bleak, feel sorry for my family for having to deal with me lately x

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