I started prostap yesterday, what can I expect?

[sam_naylor]

I had my first prostap injection yesterday im having one a month for 6 months. What can I expect? I know the general idea of what can happen but the Internet doesn't really tell you the whole thing. Can someone who's been through it let me know how they've gotten on.

[Evezy]

I had 'Prostap' for 4 months. (4 injections over 4 months). The only problems I had with it was the hot flushes after the second injection and each month thereafter, which really didn't bother me. - All I used was cold packs on my chest and upper back if I got too hot. I had the jabs over the summer months - great timing!

The main side effect and I think you will find this with everyone is the 'Flare Up' after each injection for a few days. ( I also had this a few days before jab was due) the only way that I can describe my own personal experience of this is agony! Worst endo pain ever. Check out 'Inpatient' members posts, she gives an excellent description as to why it happens. Because of these painful 'flare ups' I looked into the 'Prostap' that can be given as 1 dose that lasts for 3 months, therefore you should only get one 'Flare Up'.

However, I did get pain relief from it, but I couldn't over do things as I would aggravate the pain. I didn't realise how much relief it gave me until the course finished! I'm now really suffering and waiting for surgery. I had mine for

I wasn't warned of this pain so it was a real shock. If you were to follow this route I would strongly recommend you getting some serious painkillers to cover you over those few days after the jab.

If I was having another course I would definitely look into having the injection that lasts for 3 months. The monthly one that I experienced was a killer

Also from what I understand it is only your gynaecologist that can prescribe the 3 monthly jab, as the GP's are restricted to only prescribing the monthly one.

[CharlieSays]

Hi, I had 3 of the one month jabs, foloowed by a 3 month one last year, to reduce cysts (I've since been diagnosed with endo). I didnt have any flare-ups, like other ladies have mentioned, but diid have flushes, mood swings and some insomnia. However, all these were preferable to the pain - i had an almost pain free year while on the jabs, even my 1st 2 periods after the jabs wore off were bliss - a first for me! My only real problem was I ended up with depression and a complete loss of libido, but I didnt take HRT so that could be why.

[sam_naylor in reply to CharlieSays]

Even though it's only been a couple of days I've experienced hot flushes and I'm struggling to sleep well whereas usually I sleep brilliantly. The injection itself actually hurt. &im dreading the next one. Thanks for the replies ladies.

[CharlieSays in reply to sam_naylor]

the injections hurt me too - I had the first one just above my buttocks & nearly fainted, it hurt so much. I mentioned it for my next jab and they did it into my stomach instead, which was better. I seem to remember the flushes got fewer after awhile. good luck!

[Impatient]

The day of the injection is what i called bee sting days. because it certainly does smart a bit for severalhours afterwards and fels like you have been stung by bees inside. But rest assured it does calm down in 24 hours. The key is to leave it alone..don't rub or scratch where it went in as that causes bruising and takes longer to recover from.

I was on zoladex (a similar drug in the GnRH family of drugs) and that is implanted in the stomach alternating sides each month. It does leave a red dot mark wher it went in, and these will disappear after many weeks, but are still visible by the time of the next does so the nurse can see where it went in before.

Side effects wise the lare stage is the 1st to hit you - this is when your bod is 1st bombarded with chemicals to such an extent that everything flares up, the endo, the bleding thepain and so on. It will last a week or so and then once you have overdosed on chemicals it causes the pituitary gland in the brain to shut down.

This gland controls body temperature ane short term memory and any other aspects of your body so when it starts to shut down is when the unwanted side effects begin to kick in.

It also has as a side effect the stopping of sending hormone signals to the ovaries so initially they get too many hormones and work in overdrive through the flare then no more hormones and they shut down (which is aa good side effect as far as endo is concerned as it puts the endo to sleep mode.)

The numerous other side effects are not so good and how they affect you and when varies so much throughout each and every day. Sometimes its just one or two side effects that you are acutely aware of, but at other times could be 7 or 8 side effects and on those occasions you really can be feeling very very unwell and miserable.

It can also play havoc with your moods and depression is common but so in very quick temper moods, anger frustration, falling out with family members, saying things you don't mean to, and you have no control over these horrid moods and angry spells.

You do need to alert your loved ones to what the drug may do to you so they can give you a wide berth and keep clear of you when you get like that, also to be more sympathetic because you character can change in an instant.

It ca also get utterly exhausting not having quality sleep for weeks and months on end as the hot flushes, weird pains, delerium, and all the rest of the side effects prevent you getting a decent few hours sleep.

Other side effects are blurred vision which can come and go, but usually when it is there stays for several hours at a time. Hair loss from any part of the body, head hair, pubic hair, underarm hair, eyebrows etc can all thin out and sometimes this can be quite a shock to the system - it does grow back after stopping treatment.

the drug can raise your blood pressure and give you heart palpitations, bone pain muscle pain even vein pain - it's very hard to describe till you have experienced it - but this is not the same as endo pain but can be just as debilitating and need pain killers for.

Skin rshes or severe itches under the skin like ants crawling round the body - frustrting and annoying but not painful.

Upset tummy and digestion, feeling dizzy, feeling sick - best stay in bed on those days.

Dry mouth, dry vagina, no natural lubrication down below, zero sex drive (it's the last thing you will want to be doing anyway when you feel that grim) - but if you must have a sex life then use plenty of vaginal moisturisers and added lubrication to avoid injuring yourself down below with friction burns. The drug is not a contraceptive and it renders contraceptives useless, except for barrier methods so if you must have sex then you must use a condom or cap every time to avoid falling pregnant while the drug is in your body and this is for about 3-4 months after the last dose you have. After it has time for all the residual drug to leave the body then it is safe to have unprotected sex should you be wanting to try and conceive.

Because your short term memory can get knocked out, it is important to have someone at home to make sure you are eating and drinking healthy foods and at regular meal times and that you reduce portion sizes if you are not able to be as active as you usually are because you are in bed and not feeling so well for much of the time.

The most important thing to remember is tht this is not ever a cure for endo. It is supposed to give yo a break from endo pain (with side effects) and if the side effects are worse than you expected them to be, and your quality of life on the drug is actually worse than just putting up with endo and endo pains for the same few months (which you can to some degree control with appropriate pain killers) then you can stop the treatment whenever you want to stop. Just don't have the next dose. That's all there is to stopping.

It then takes a few weeks as the side effects ease off gradually and the pituitary gland begins to wake up and start working again to control your body temperature and stop the freezing chills and hot flushes. Your ovris will normally wake up too - the average wait is 5 months - so half of ladies return to periods quicker than 5 months and half take longer.

In a tiny number the ovaries don't wake up again - but it really is a small percentage.

My main advice is to plan ahead - let your employer know you are on chemo as you will be able to take time off work as and when you need to (and there will be days when you need to just spend the day in bed if for no other reason than to try and catch up on sleep, but when and how often varies with each of us). pin a list of the side effects to the fridge - you will be visiting the freezer section quite often to cool yourself down, and also tell mum and dad, siblings, boyfriend/partner, best friends and grandparents and anyone that might unfortunately become victim of your moods and anger episodes - because with the best will in the world you have no control over them at all, and will probably say and possibly do things that you would on no account do in normal life. And it's a lot easier to apologise and blame the drugs if yo have warned them all ahead of time as to what may happen.

If you have kids or pets that rely on you for their daily care - then without hesitation arrange emergency carers to step in and help out as short notice.

e.g. you wake up with blurred vision - you cannot read anything not even the text messages on a phone or phone numbers - or the internet. You cannot drive a car and nothing you do seems to stop the blurred vision. What would you do then?

Who would walk the dog, feed the cat? get the kids to and from school? prepare your meals?

So having back up help a phone call away is essential if you find yourself really incapacitated by side effects all of a sudden.

I am not saying this will happen - but there are so many side effects and none of us know how we will react to the drugs from one minute to the next and these drugs are in your system for a very long time. it's not like taking tablets where after a bad reaction you don't take the next day's tablets and you're okay again in several hours. these drugs are in you for weeks at a time whatever they throw at you.

You may be very lucky and suffer very little - but each of us reports a different experience and a great percentage have a miserable time and do end up quitting because of it. There is no shame in stopping, as i said it is prescribed to improve your qulity of life and if it doesn't do that then there is no point at all in putting yourself through hell for no good reason. it sure doesn't make aany difference to the endo which wil wake up and reactivate once you have stopped the treatment and the ovaries wake up again.

Expect the worst, hope for the best and prepare yourself and your family for some very strange experiences in the weeks ahead. These GnRH drugs are very powerful indeed.

[Jenaust1985 in reply to Impatient]

Thank you for your post, makes me feel like Im not cracking up. I have just begun the prostap journey and 5 days after first injection feeling rather rough!!

But heres hoping this will ease in time 🤔

[TayaBuck7 in reply to Impatient]

Is it a chemo? Sorry start it Thursday and just reading so I no how to prepare

[Janeyjane20]

I had prostap for 4 months should have been 6 months but I stopped just before my 5th jab . I had no symptoms apart from heavy bleeding !!!! I was taking northisterone too I’m stil taking northisterone but stopped injections had a scan yesterday waiting for treatment I have quite a few fibroids and one large one xx