Thoughts on Prostap?: Hi Ladies, I was... - Endometriosis UK

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Thoughts on Prostap?

HeidiBoo75 profile image
18 Replies

Hi Ladies, I was diagnosed with Endo in November 2013 by laparoscopy, I had a Mirena coil fitted in February 2014.. I've since had another lap in July last year to remove endo and adhesions. Today I went to visit my consultant for a 3rd time as I'm in a great deal of pain again and constantly bleeding. I've been put in the waiting list for a hysterectomy which should be around September time, but in the meantime he wants me to go on Prostap for three months as a 'test' to see if that rids me of pain. Any thoughts or experiences of this please?? I'm due my first injection on Monday.

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HeidiBoo75 profile image
HeidiBoo75
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18 Replies
PupleUnicorn profile image
PupleUnicorn

Hiya, I'm about to have my first lap next week, but I've been really bad with my endo. Day to day life was hohorrendous, my Dr said I was the worst case she'd seen in years. I've been on morphine for months plus other "painkillers. I had the prostop injection a couple of weeks ago, it basically induces u with the menopause- I had a rather bad experience with it in the first week or so, I was falling in the shower, unable to go the toilet on my own, night time especially I was being carried to bed as I'd lost complete use of my legs and my mood swings were awful. I wish you every success with what you decide And with your hysterectomy xx

Leesac21 profile image
Leesac21

I had 3 months of prostap - my side effects were like menopause hot flashes etc and gave me bad migraines as I'm a sufferer of them anyway

They eased my pain slightly but not a lot x

Hope all goes well for you

Live_Life2dMax profile image
Live_Life2dMax

i had prostap for 4 months to attempt to reduce my bleeding pre op which sadly did not work at all. i chose prostap over zoladax which serves the same purpose and has the same side effects, because with prostap you can have it in your arm or thigh which is far less traumatic than the abdoman plus it is a smaller needle (makes the world of differance). i suffered too with intorriable hot flushes so was put on a low dosage hrt alongside it. i felt the hrt helped my reduce the intensness but got other side effects such as acne, headaches, weight gain and irritability. i am unsure if these were because of the prostap or hrt. i am having a hystorectomy next month too and incredibly anxious. good luck sweetie. hope all goes well. xx

Tina32 profile image
Tina32

Hiya, I've been on prostap for 11 months now. I also take the add back hrt tablet livial/tibilone which has kept the menopausal symptoms at bay. I had a flare up about 4 months into the injections but things settled down and I really haven't had any major problems on it thank God as I did read all the horror stories before starting the injections.

mrsmcbain profile image
mrsmcbain

I was on Prostap for two months. The first injection, I had, I took a terrible reaction to it & ended up in hospital. Just be aware that your pain will increase dramatically at the onset of the injection but then it eases off. It never got rid of all my endo/adeno pain completely but in retrospect it did help ease them. Prostap can cause lots of other psychological & physical side effects which are very unpleasant & can be long term.

I had been off it for eight weeks & am waiting on a hysterectomy but my consultant wanted me to have a further three month injection to tide me over until then, so yesterday I had a three month jab of Decapeptyl which I believe is pretty much the same as Prostap. It took a two weeks of humming and haaying about it to finally make the decision too go ahead & have it done, but I felt I was stuck between a rock & hard place!!

Some ladies get on well with it & some don't. But you won't know until you try. I wish you the best of luck & I would be interested as to how your getting on with it. Xx

HeidiBoo75 profile image
HeidiBoo75

Thank you for your responses so far, I've heard good and bad on this, bit like when I asked for advice about the Mirena coil, which I still have in place at the moment. my main concern is how it's going to affect my mood as I have experienced horrible mood swings with the Mirena, that side of things seems to be quite settled at the moment,just have pain and bleeding. I'm guessing that because it's only a 4 week dose if I decide I can't get on with it I just won't continue after 4 weeks.

dk1136 profile image
dk1136

hi heidiboo, i too am waiting on a hysterectomy should be before august, i was on these injections for 7 months and it was amazing no pain what so ever.

let us know how you get on.

sending hugs

x

Ajiw85 profile image
Ajiw85

Hey

I'm in a very simelar situation I was diagnosed after open surgery to remove a cyst last year feb 2014. I was off work for 8 weeks then put on provera tabs to rest my body and hopefully boost fertility. However this didn't work and I continued to suffer daily with pains and constipation not to mention longer more painful monthlies. I was injected with Prostap 3 just over 3 months ago now and can say it's been great with regards to pain. It's stopped completely! I still had my period in the first month but haven't had one since. The only negative here is the immense hot flushes and night sweats which lead to hardly any sleep. The hot flushes come around every 20-30 mins so an average of around 30 in a day It sounds like a hell of a lot but they generally last no more than 3-5 minutes. I had a gynea appointment today and my gynaecologist seems to think its worked based on my symptoms but overall it's not been too bad. If u do have it maybe ask about hrt treatment to prevent so many of the side effects! I'm just 30 and am facing a hysterectomy if I don't fall pregnant in the next 6 months. Most women have had children and are older I don't have any children yet but I hope this helps you out. I have to say this treatment has made me feel completely normal like I did just a few years ago.

Good Luck

HeidiBoo75 profile image
HeidiBoo75

Well I've taken the plunge and had my first Prostap injection, I strangely feel great, like I'm buzzing! I'm not in pain today now which is good, I'm not putting that down to the jab though. I've been told that it'll be at least 2 1/2 - 3 weeks before I see any affects, is this the case for other ladies to?

shazzzy70 profile image
shazzzy70 in reply toHeidiBoo75

Hi hun on reading this i thought i would answer this for you.I had the injection 3 weeks ago today and i still hvent felt the benefits from it still in lots of pain.Last week I had a really bad period and only came off yesterday pain was horrendous.I am due to have another injection on the 1st June as it is bank holiday next week the day i was due to have it.I spoke to my gp last week and he said usually you feel the benefit from the injection on the 2nd one.Dont be surprised if you see a period and feel like shit for a week.I have been having aches and pains all over my body like i have been in a boxing ring.I hope they gave you hrt pills to help you with the side effects of the injection if they did start taking them straight away..Take care xx

Hi in your post you refer to a 'test' what do you mean by this? I know prostap is turning the ovaries off but what is it testing? And what if it doesn't stop the pain? I'm confused I'm month 2 and feel crap, I don't bleed or have clots or contractions but I'm so so tired and my legs and back kill :(

Rach8 profile image
Rach8 in reply to

Hi, I was offered this treatment without a concrete diagnosis. The only option I was given. The consultant said it would tell him if I had endo if my pain eased up. I haven't agreed to the treatment as I think it is a bit extreme, still waiting on a GP appointment do discuss. I'm glad that it has helped some people and I'm glad I saw this post.

HeidiBoo75 profile image
HeidiBoo75

Ck13, like RachaelP, I've been put on Prostap to make sure the pain I'm feeling is endo pain, and not something else.. I'm assuming it's protocol to do this treatment first as my consultant said he can't perform a hysterectomy without doing this first. My endo nurse also said i would feel the benefit from this treatment until after the second injection, when I said affects, I meant side effects like hot flushes etc. I feel like I've crashed a bit this evening, have pelvic pain again and need my heat pad.

Hi Heidi I'd say the side effects started about a week after the first injection, I have been having constant hot and cold flushes for a month solid now

It has stopped my period and therefore stopped clots and labour pains which is awesome but I still have my other pain which is frustrating, I have adenomyosis so maybe my womb is just now too heavy and causing the pain

I feel more hormonal now then I ever have before and it's not cool :(

HeidiBoo75 profile image
HeidiBoo75

Day 3 post injection #1 and all pain is gone.. Still. Feel good.. So far! Lol 💪🏻 xxxxx

HeidiBoo75 profile image
HeidiBoo75

I'll be two weeks post injection tomorrow and apart from one day of cramping last Wednesday, I've felt amazing!! I can't quite believe it, I've had no endo symptoms but no side effect either?! Do I feel blessed or should I brace myself for things to come? I've read some bad stuff about Prostap but I can't believe I'm not suffering anything at all?!

Lisag1977 profile image
Lisag1977

hi all . been on prostap for 11 months now which is quite concerning as I was told no more than 6 to be administered. nurse and pharmacist not happy to supply or give . but nearly after a year still waiting for hysterectomy. my concern is what does long term usage do to your body and organs. very powerful drug .

pbplz profile image
pbplz

Hi Heidiboo, I amhave just come across your post and am wondering how you and the other ladies who responded to this post are doing now? I am doing a lot of research about Prostap, Lupron and Zoladex in terms of the long term side effects as I have been left virtually disabled by 3 Prostap injections I had for ivf treatment. If you are still suffering, pelsee join the Facebook group Lupron Warriors and find our page Poisoned by Prostap/Lupron/Zoladex to find a really lovely supportive community of people who have been affected. Much love xxxxx

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