After being diagnosed with stage 2 ive have been told ill need prostrap and livial to allow my body to heal naturally. If that doesnt work il need to go in for laser treatment. I hope it works as i dont want lasers near my bladder or bowel. Ive already put on weight and lost lots of hair after coming off yasmin so im a bit worried. what experiences have others had did it work and should i be aware of any major side effects ?
Prostap and livial proscribed, what's you... - Endometriosis UK
Firstly each persons experience of prostap is different. They do 2 types 1 monthly injections and 3 monthly injections.
I have stage 4 endo, the first time I was one prostap I was given 6 months course of the 1 monthly injections. I had hot flushes and night sweats but other than that not really many other side effects. The livial made me have break through bleeding and I actually had a period 4 out of the 6 months. So I don't think it actually worked.
I then had a laparoscopic procedure where the physically excised 10cm of endo tissue over my pelvis. I still have 30% left on my bowel and need a further op so I have been given prostap injection of the 3 monthly dose. It's like I've been given a completely different drug. I have about 5 hot flushes an hour, sex drive has disappeared, I have lost my short term memory function. I go into days of deep depression and anxiety. For this reason the doctor has suggested I don't get any more injections.
As I said everyone has different experiences, but if you do get any of the above know they are normal and won't last forever
Your stage 2 endo will not be cured or killed by GnRH drug treatment. It simply doesn't work that way. You can only get rid of endo by having it surgically removed and GnRH drugs are not ever an alternative solution for surgery.
They are used to prevent further spread of endo before you have surgery and they certainly do always have side effects.
Reseach this thoroughly. Key words to look for are Lupron (Prostap is the uk brand name), GnRH, Lupron side effects, Decapeptyl, Zoladex are othr GnRH drugs.
They all work the same way by overflooding the pituitary gland in the brain and causing it to shut down. That stops half a dozen or more hormones being produced.
That lack of hormones is what causes side effects.
HRT like livial adds back some of those missing hormones which can alleviate some not all of the side effects.
These drugs are cancer treating chemo hormone drugs, the most powerful drugs you are ever likely to put in your body. They will not work like any other drugs you have ever taken before. They cause side effects throughout the time you are on the drugs and for some time afterwards and sometimes those side effects are longterm.
Do not start the drug till you are sure you know what you are letting yourself in for, and have informed your family and friends support network and your employer in case of times you may need to be off work.
You are entitled to time off work when you need it while on chemo so be sure to let your boss know you are starting this if you do decide to go ahead.
Your surgery is not dependent on trying the drug, nor do you have to try it, nor do you have to stay on it once you start. You can stop and not have the next dose if you prefer not to.
The drugs are toxic to pregnancy and are not contraceptives and render hormone based contraceptives useless, so if by any chance to with to have sex while on the drug then you must use condoms or caps as barrier contraception.
To be honest, with zero libido, a dried up vagina and feeling so grim, it is unlikely you will want to have sex, but if you do, then use plenty of lubricant and condoms to try and avoid injuring yourself down below.
The list of side effects is huge, because the number of hormones that are stopped actually have a huge role to play in regulating so many body functions you take for granted.
There is a huge amount of info on lupronvictimshub.com/
lawyersandsettlements.com/a... has lots of 1st hand experience written after the article
I listed the hormones on a post a couple of days ago
Rather than type out everything yet again, use the search box on the green bar at the top of the page and type in GnRH, Lupron, Prostap, Zoladex or Decapeptyl and you get a huge amount of 1st hand experiences to read through there as well.
The sheer volume of articles and 1st hand experiences on the internet in the english language alone, gives you ever reason to be extra cautious about deciding if this is something you want to risk.
Surgery is essential for removing existing endo and that is what you should be pushing for. There are better ways to stop your periods before you get a surgery date through. Ones with far fewer side effect risks and no long term risks.
Give yourself plenty of time to look in to this and keep a notebook to jot down the key details.
Look up the patient advice leaflets for Prostap, Lupron, Decapeptyl and Zoladex, they are each explaining the situation in a different way.
Thanks for that. I knew it wasn't the 'cure' i was told it would be. I'm not due to start it for a few weeks. I refused to take it before my holiday. I was told when i came round from my lap that it would let my body heal from my current Endo and recover.
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