Prostap injection - anyone else?

[bumhead]

I am not sure if this is in the right section but I guess it is.
I have PMDD (severe PMS) and was put on 30mg Citalopram to deal with it.
It's a hormonal thing not a depression thing but the Citalopram helps a little, it isn't solving the monthly problem.
So I was referred and the Consultant prescribed 9 months of Prostap (like Zoladex) injections, to put me into medical menopause. After which I will be looking at a Hysterectomy and removal of my ovaries.
Had my first injection yesterday in my stomach which is bruised and hurting today,
Has anyone else had this and any side effects?

[Missbopeep]

Gosh that sounds drastic intervention for PMT.

How old are you?

Sorry if this is no use- but presume you have tried all kinds of other treatments including complementary etc before resorting to a major op?

And presumably you will be going on HRT for a while otherwise you will be plunged straight into the full menopause rather than a natural wind down- which won't be a picnic!

[kiwigirl42]

I've been on Prostap last 4 mths and are on list for hysterectomy, for my chronic migraine. It has helped a bit in that i get days off between migraines now. I've put on weight since starting inj but no other side effects really. I've been thin all my life until now but would rather be fat and headache free by a long shot.
really hope it helps you. I'm terrified about my upcoming hysterectomy though!

[bumhead]

Thanks for you replies!
I am 40 and I know it seems drastic but the PMDD is debilitating. It's the form of PMT that makes women kill themselves or their husbands (has been known!)
I've tried all sorts MissBoPeep, acupuncture, hypnotherapy, mirena, bio-identical Progesterone, Estrogel, anti-depressants... you name it!
I'm a bit scared of the Hysterectomy, my DH doesn't want any more DCs and realistically we are neither in a financial position nor a general position to have any more but it's so final having my ovaries etc removed. I'm worried I won't feel like a woman any more (I know it sounds stupid but it's just how I feel)
I can only have the Prostap for 9 months and this was my first injection so I think when I go for my next one they will prescribe HRT.
Kiwi are you on HRT? They didn't really talk to me about side effects but I've got the mother of all bruises on my tummy and feel rough today.
Migraines are no joke :( I had them when I was school age (so again hormonal) and used to spend days blind in a dark room throwing up!
When are you due your hysterectomy and did they talk through with you how long the recovery would be?
Sending hugs! (I know not very Mumsnetty but it's a shitty thing this hormone malarky!)

[Missbopeep]

I hope it goes well for you it just sounds barbaric ripping everything out to get rid of PMT- I know you don't have " ordinary" PMT, and I don't want to underestimate how you feel- but have you had a few expert opinions?

[bumhead]

Yes I have, this form of PMT (honestly leaves PMT in the dust) has me suicidal for 3-4 days a month before my period starts then lifts the day after. It's nothing like feeling a bit crappy and reaching for the biccies.
This is the end stage treatment.
Women have murdered people whilst in the grip of their PMDD and my Consultant has known 4 women kill themselves during it. It is Hell alive.

[kiwigirl42]

I know having a hysterectomy is the right thing for me, even without the migraines I have a history of really heavy periods so will be glad to be shot of the old giblets. Even a coil and Prostap have not stopped me bleeding! I'm not bothered about losing my womb (I've made sure I've invested in skin care etc though so things don't go south too quickly post op!) but just the size of op and recovery worry me. But I have no other choice.
I do find I get really tired the day of and a few days after the injection. The first time I had it in my arm and it really hurt. Now I have it in bum or tummy and hardly feel it.

[bumhead]

Kiwi what have they told you about the recovery time?
Someone I know had a Hyster about 5 years ago and she was off work 3 months! :( I know they can do it keyhole now though so I'd have thought recovery would be better.
I never even thought about skin care etc. Guess I'd better get ahead of the game hadn't I?

[Jb43921]

I am due to have my first prostap injection on Friday for menstral migraines. I saw a gynaecologist on Monday and finally think after years of suffering that i have been diagnosed with PMDD.

My migraines and moods have been getting progressively worse over the last 9 months and I am at my wits end. Are you starting to see any improvements from the injections yet? Have you seen any other improvements in your mood, as this is another problem for me. I am suffering from depression that is definitely worse the week before my period. I am hoping after the 3 month trial of this injection that the gynaecologist will agree to give me a hysterectomy as I cannot go on the pill and I have tried the coil and that didn't work for me, anti depressants and numerous preventative drugs for the migraines. Nothing seems to work.

I seriously feel suicidial at times!

[bumhead]

Jb - I know just how shitty things can be, you're actually the only other pMDD sufferer on the same course as me!
I am due for my second injection later today.
I know it was only month one but I do think there was an improvement so far. From what I understand, the second injection is when things start really kicking in.
What I've found this month: intermittent period (not heavy), a couple of hot flushes (but these have been in the past week), I felt like I had the flu a couple of times and in the days just after the injection and occasional headache but in the days in between I've felt GREAT!!

I don't mind feeling fluey, bleeding, headachey, or hot if it stops me feeling pmddy every month!!

I am looking at a hysterectomy too after this 9 month course.

I know exactly how you feel believe me. And it's so hard to get help!!

x

[Chihuahuas]

Hiya

I'm two years post hyst and removal of ovaries for Pmdd. I had mine at 39. At my worst i was on 60mg of citalopmam them 40 mg of proxac then 49mg duloxatine. I tried every combination of things going but at the end of the day pmdd is caused by intolerance of progesterone so the womb and ovaries had to go! No ovaries means no progesterone is produced and no womb means i don't have to take replacement progesterone to protect the womb from cancer. Transdermal Oestrogen only hrt is far safer option too than oral or combined hrt.

Took me a loooong time to balance my hrt and remove nearly all menopause symptoms but finally managed it. I take sandrena gel 2mg and testim gel daily. I feel good although I still get more tired out than everyone else.

I didn't have suppression like you. I was too far gone mentally and couldn't face taking any more progesterone. Too suidical on it. Was getting harder and harder to fight the overwhelming suicidal urges.

Have you been offered any add back hrt to go with your suppression. Sure your aware that you will now enter chemical menopause ? (Or hopefully if the jag does its job).

I'm always around if you need assistance. I'm a member of a post op for Pmdd group and moderate an early meno group.

Hope your feeling that the end of Pmdd is in sight.

X

[Chihuahuas]

Oh and I had keyhole and I would def say 12 weeks recovery time is needed then your body will adjust to its new surgical menopause state over the next year. Recovery is a subtle process. I wouldn't change a thing though. Never felt happier. Around 5 percent of women have pre menstrual dysphoric disorder. I had it for 7 days pre period and would fade on day 5 of period. I had a really short cycle so was a constant roller coaster of suidical thoughts and rage and self harming :(

[bumhead]

Hi Chihuahuas!
It's always good to hear from other PMDDers (although not good that you suffered with this too, it's a living hell!)
Thank you for your posts, I feel like I am struggling to find other ladies in the same boat as me. It's lonely sometimes!
I had my 3 month jab last week and this time the Doc said I should only have 7 months of jabs then surgery and not 9. Not having any add back HRT at the moment. She said there was no point stopping my hormones then adding them back at this stage.
Am having hot flushes by the bucket load and waking up bathed in sweat on a night. :( Also fluey feelings whenever my hormones would be rising and falling normally (ovulation, pre period etc) This is only month 2 though so hopefully it will get better!
I just want to feel 'normal' if that makes sense.
Can I ask where the post surgery PMDD forum is please?
Like I said I feel alone in this a lot and am fed up when going to my normal GPs them googling PMDD because they don't know what it is. :( It just seems to be a battle all the time to get help!

[kiwigirl42]

It just seems to be a battle all the time to get help

I so know what you mean. I paid privately to see a gynaecologist when my migraines really kicked off who wouldn't agree with me that they were hormonal. Its taken 6 fecking years to get them to try Prostap etc and finally agree. Basically its wreaked my life. I 've lost a lot of faith in Dr's and the NHS - unless its 'exciting' they just don't want to know. Just another middle aged woman with a health problem was the impression a lot of them gave me.

Still haven't got a date for my op. It is supposed to be this month so am on tenterhooks!
I hadn't realised how bad hot sweats could be until now. Horrible things. And I smell funny - like an old lady! Need to try drinking loads and try to flush it out. I seem to get thrush every month as well since starting Prostap. Nice

[bumhead]

Kiwi I had to go private too because my GP practice were next to useless.
My private doc is marvellous and he suggested the Prostap so wrote to the GPs telling them to give it to me.
They claim they don't do it there (EVERY GP practice does Prostap but somehow mine is special! ) they referred me on again and the consultant I saw this time (was actually at a private hospital) sorted out two injections on the NHS and wrote a strongly worded letter to my GP practice demanding them to stop messing about and give me my further injections. They haven't even bothered replying! so I have to start hassling the practice manager one month before my jab is due and if no joy then get back in touch with my consultant! It's a joke! How many women with PMDD and up killing themselves because they can't get any help or their Drs are obstructive??
How are you feeling about your op now?
The hot sweats are awful aren't they? I've taken to wearing a vest and cardi so if I'm flushing I can remove a layer but I do worry about smelling :(

[Chihuahuas]

Hi ladies. It's a Facebook based group. We are an offshoot from the naps forum which since it closed down for 6 months and then reopened has never been the same. If you want to message me and your on Facebook I can add you.

The early menopause group where I moderate is also on Facebook and was started up by a Pmdd survivor called Donna Barrowman and a women's health specialist who had the op for Pmdd herself. On both groups we've helped lots of women.

Ps your gynae is wrong about not having hormone replacement. If your def having the op then you should be able to take oestrogen only and vaginal oestrogen will sort out any thrush and uti type feelings. 9 months isn't that LNG to go on unoppsed oestrogen. Why suffer unnecessarily? Unfortunately most ladies still have to battle to get hrt post op which is just silly as British menopause society guidelines state there is no evidence of risk taking oestrogen replacement up to normal menopause age. As long as benefits outweighs the risks oestrogen will always be on my shopping list.

I also saw a private gynae who specialises in Pms works from Londonbthen transferred my care to an nhs gynae. I bypassed my gp as she said I was just a depressive person.

Everyone who knows me can't believe how much ive changed.

Hot flushes are under rated. When I used to get them I got palpitations, awful feeling of doom and anxiety then vomit then get hotter than the sun then colder than the North Pole bleugh.

X

[Chihuahuas]

Ps there are guidelines that all gp practices should be aware of too for managing Pms. A collaboration between naps and my gynae.

[Dreamdorset]

Hi,

I have just been offered prostap injections for the next 3-4 months withthe view of a full hyst due to PMDD. Was wondering how you are getting on?

Thanks

[Bowwow123]

Hi,
Just found this discussion as I have been browsing the net looking for ladies having similar experiences to my own. I have pmdd and have had it really rough over the last 4/5 years. My symptoms changed from anger and aggression, which I could deal with, to anxiety/fear etc (add that to the hormonal migraine and heavy prolonged periods and I had definitely had enough!!)any way as a last result I asked for a hysterectomy, I'm 41 got three lovely kids and knew I could not try any more drug therapy. I've had everything from the mirena to six months of norethisterone six months off cycles, numerous pills and then more recently citalopram for the one half of my cycle and then hormone therapy for the second, which worked for just over a year till my own hormones took over again! anyway I just wanted to say that I have been on prostap for 19 months and think it's brilliant. I know longer wake with panic attacks and confusion and other than struggling with my weight all of my other symptoms have gone. I had a small break of two months about 9 months in and begged to be put back on them as all the ugly pmt symptoms hit me like a sledge hammer almost immediately. I am now and have been waiting for my hysterectomy and can't wait for my hospital to catch up with their waiting lists so I can finally get on with my life. btw I started kliovance add back hrt approx. ten days into starting prostap and was told it was definitely needed to keep my body ticking over (bone health etc) so please do speak with your doctor to make sure you get yours. I hope this is helpful to anyone starting the prostap journey. the risks of the med far out way the misery of the dreaded PMDD!

[Flojobunny]

I have just found this thread. I have had my first pro stap jab for PMT, I'm on day 21 of cycle and have started to bleed so was looking to see if this is normal or if I need my next jab earlier or something?
Glad to see it has helped, scared about the side effects, especially since I was having depressive symptoms and all the info states how depressed it can make you.

[CARROTSATNAVBEN77]

Hello; My Daughter is 35 she had prostap injections 14yrs ago and now she cannot talk, walk, eat ,write, properly and now doesn't talk hardly this is what its done to her .

[sunflower1093]

I have severe PMS also and have spent years suffering .This became worse around the age of 40 im now 43 .
Finely I was referred to a Consultant and prescribed 9 months of Prostap injections along side HRT add back to put me into medical menopause. After which I will be looking at a full Hysterectomy or removal of my ovaries.
I have to say its saved me starting this treatment.Feel like I have my life back .
Im due what should be my last three month injection on the 9th Oct .Seeing the consultant on the 21st Oct where I will be having a scan again and discussing which operation is best to go with.
I have had a few scares on the way ,one being womb lining becoming thicker and bleeding .I cant fault the speed in scanning ,blood tests and the tests to rule out womb cancer.This is why im being scanned again this month to check on the lining again.
Mentally I feel well as I do with all the physical effects that I was having.
My weight is under control but I have put weight on.(Hoping this will go after the injections stop).
If anyone has since stopped their injections and has gone a head with an operation please can you let me know how your getting on.
I will remain taking the add back after my operation.
Thanks for any of your input
x

[Lisamngirls]

Hi there, is the anyone still around on this thread. I have been on prostap for a couple of years now for pmdd.......not sure whether to make the final leap for the full hyst? Would love to chat about this, Lisa xx

[Sleepy46]

Hi, is anyone still reading this thread who has been on Prostrap injections with Livial add back. I am 48 and have suffered for years with severe PMDD, absolute nightmare every month, as you all probably know, two weeks of the month I am full of energy, happy, confident woman and then the next two weeks, cant bear to go over the doorstep, no energy whatsoever, depressed mood, migraine, aching from head to foot, the list is endless. I am constantly off work and worried I am going to lose my job. Have tried all kinds of herbal remedies over the years and the ladycare magnet, but nothing seems to work. I have now reluctantly decided to start Prostrap injections with Livial HRT and am due first injection at the end of March. I wont lie, I am absolutely terrified to take it, after all the negative horror stories I have been reading about it. Please, does anyone on here have any positive experiences of this and has it improved their quality of life. I need some hope here... help!!

[LadyMuck44]

Hi Ladies, I've had problems all my adult life with my periods ie being excruciatingly painful, very heavy & short cycle! For the last 15 yrs or so (I'm now 45) it also became unbearable between periods with the pain. I've been hospitalised numerous times from it but all any of the NHS Drs or GP would say is that there was nothing wrong with me medically & thought I had irritable bowel!! I was at my wits end as I knew it was something to do with my ovaries/ hormones/ menstral cycle.

Anyhow to cut a very long story short my husband has BUPA through his work & we decided enough is enough & to use it to seek a private consultation with a gynae. I was seen immediately by her & told her all about my medical history. She ran a few basic tests & established that she was certain it was hormonal as well as having loads of fibroids & if I wanted a long term solution that she would if I wanted to, give me a full hysterectomy! I was gob smacked that it was that easy to have one. I advised her that I just wanted the constant pain in my abdomen & womb/overies area to stop permanently.

It was that easy, after fighting the NHS for all these years & being dismissed to "take a paracetamol if in pain" from NHS Dr's. I first saw the private gynae 4 months ago & have been on Prostap injections monthly since to prepare me for a hysterectomy.

Well I'm pleased to report that having the Prostap injections has changed my life!!!! I haven't experienced any pains whatsoever through the month, not even a twinge. I feel FANTASTIC!! When I told my gynae when she asked was I experiencing any menopausal symptoms I can honestly say I've not had a single symptom ie no hot flushes/weight gain/lethargy etc etc. my gynae is amazed as normally Prostap will induce an early menopause. My gynae has agreed to keep me on Prostap long term as it seems to be working for me. We have decided if having Prostap injections keeps my pain at bay then I can stay on it & not undergo a hysterectomy at all.

Hooray for husband having BUPA as without it I would still be suffering terribly having to use the NHS who clearly failed me in this instance.

[Sleepy46]

Well after all the negative stuff and horror stories I've read about Prostrap, the last review has really given me hope. I feel a bit more positive about having it now, fingers crossed I will feel fantastic too. Thanks LadyMuck44.