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Prostap v marina coil. What are people's experience with prostap?

Bluetit profile image
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I've been given the option to have prostap injections for 6-9 months but this would mean taking out my coil. I've only had the coil in for 6 months but I don't seem to be able to control the hormones. I've always had difficulty with hormones and have yet to find something that helps but the coil seems to make them worse. I was wondering what people's experience with prostap has been to help me make a decision. The coil has been brill pain wise but I'm not sure i can cope with feeling depressed, tearful, worthless and tired every two weeks that I seem to get now. Sorry if this doesn't make sense but I am a bit all over the place at the moment! I've also tried the implant, mini pill and combined pill so I feel this is my last hope.

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Bluetit profile image
Bluetit
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Impatient profile image
Impatient

I had the coil installed during my surgery then next day was started on zoladex (pretty much th same as Lupron/Prostap) to tide me over till the mirena could get to work. In the end I only had the one period between the endo of the zoladex and then the mirena stopped my periods after that for well over a year before i had another period type bleed. then a nother 4 weeks later and since then no more (touch wood).

There is no reason to have the mirena removed while on Prostap.

It will not work as a contraceptive device but if you want to see if the prostap triggers the mirena to start working properly and stopping your periods then it is perfectly possibl to have both the Prostap and the Mirena at the same time.

It worries me when you say " I'm not sure i can cope with feeling depressed, tearful, worthless and tired every two weeks"....when i was on zoladex it really made my depression and moods far worse than anything i had ever encoutered before on any meds and there is no escape. we are not talking just two weeks a month here , but all the time.

Once the drug is in you that's it, come hell or high water till it starts to wear off properly.

You cannot escape it.

Add to that all the range of other potential side effects happening pretty much at the same time, bing on Prostap or any GnRH drug is no picnic.

Some ladies do find it agreeable and they can cope but not one of us knows if we will have a decent reaction or a dreadful one, and unlike many other meds if you do turn out to have a bad reaction to it you are stuck with that for weeks if not months.

It certainly is not a drug to take lightly. please please do your homework, expecially in the light of you already suffering depression symptoms, the prostap will NOT improve that aspect and may may it a lot worse especially in the flare stage in the first 2-3 weeks when your brain is bombarded with chemicals to overload and shut down the pituitary gland.

The following is the Patient Overview of the drug:

.SIDE EFFECTS: Mild burning/pain/bruising at the injection site, hot flashes (flushing), increased sweating, night sweats, tiredness, headache, upset stomach, breast changes, acne, joint/muscle aches, trouble sleeping, reduced sexual interest, vaginal discomfort/dryness, vaginal bleeding, swelling of the ankles/feet, increased urination at night, or dizziness may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.

Infrequently in men, shrinking of the testicles, breast tenderness/swelling, and reduced sexual interest/ability may also occur as a result of lowered testosterone levels. Talk to your doctor if these effects occur.

In girls, when this medication is used regularly, it is expected that the menstrual period will stop (or decrease to light bleeding/spotting during the first 2 months). Tell your doctor promptly if regular periods continue after 2 months of treatment with leuprolide.

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

During the first few weeks of treatment, your hormone levels will actually increase before they decrease. This is a normal response by your body to this drug. This may result in a temporary increase in your symptoms for a few weeks.

In men, an increase in testosterone levels at the beginning of treatment may sometimes result in new or worsening symptoms for a few weeks. If you have prostate cancer that has spread to the spine or caused urinary blockage, you may require closer monitoring by your doctor, especially when you first start treatment. Tell your doctor immediately if you experience any of the following serious side effects: bone pain, numbness/tingling/weakness of the arms/legs, blood in the urine, painful/difficult urination, unusual weakness, inability to move.

Tell your doctor immediately if any of these unlikely but serious side effects occur: mental/mood changes (e.g., depression, thoughts of suicide, mood swings, aggression in children), new/worsening bone pain (in adults), easily broken bones (in adults), increased thirst/urination.

Get medical help right away if any of these rare but serious side effects occur: chest/jaw/left arm pain, irregular heartbeat, weakness on one side of the body, slurred speech.

Rarely, a very serious problem with your pituitary gland (pituitary apoplexy) may occur, usually in the first hour to 2 weeks after your first injection. Seek immediate medical attention if any of these very serious side effects occur: sudden severe headache, sudden severe mental/mood changes (e.g., severe confusion, difficulty concentrating), vision changes, severe vomiting, fainting.

A very serious allergic reaction to this drug is rare. However, seek immediate medical attention if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.

This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.

...also have a read on the very comprehensive Lupronvictims hub. there is plenty of advice on that website, with which you can make an informed decision about whether this is the right next step for you to take.

lupronvictimshub.com/aers.html

I would urge anyone with PMT/PMS anger issues, depression even mild depression to steer clear of it. Even with HRT add back therapy it can really mess with your head and your moods and you will not be in any position to stop getting angry and frustrated and more and more exhausted which doesn't help one bit.

Yes it can be great for pain relief..but so can the right dose of pain meds as and when you need them rather than having these drugs working 24/7 even when you would ordinarily be able to cope with your endo illness.

Definitely something to investigate and decide what you want to do.

It doesn't cure you, it just pauses the endo situation which will wake up and carry on as before after the ovaries wake up again.

The benefit really would be to possibly kick start that mirena in to working whicle you are on the Prostap, but if that is coming out anyway then it is at best scenario only a short term pause in the life of your endo. 6 months (if you last that long) is not a very long time in the big scheme of things and what do you do then? Or what do you do if you do have to quit sooner?

if it is any consellation, I did find that once the mirena had got to work and settled in, and stopped my periods it also stopped all my mood fluctuations too. Quite a nice bit of a bonus I wasn't expecting. I was just hoping it would stop the monthly bleeds to be perfectly honest. 6 months is still quite early in the life cycle of a mirena. From my own experience i would allow it a couple more months at least to see if things do improve mood wise on the mirena, before even attempting the GnRH Prostap route of meds.

All of us who have had success with mirena have advised on this forum that it does take time to settle down to working properly, and if you can get through the early months then it really can make a huge difference. Ultimately it is your decision whether to keep it or whether to switch to GnRH for a few months...or try both at the same time.

Bluetit profile image
Bluetit in reply to Impatient

Thanks for the info I think I need to do more research but I have 2 months to decide before I see the consultant again. It's the hormones and mood swings i need to control and this seems to be the only option as anti depressants do not work for me. Thanks for sharing

Sailorgirl profile image
Sailorgirl

I've just been given the ok by my gyne to use Zoladex long term, with add back.

I also have a mirena and have already been on Zoladex for 9 months.

I have a history of severe depression, which I have received hospital treatment for.

I've found Zoladex better than anything... I'm actually having the mirena out because its not helping (or I don't think it is!). It was inserted after my last lap, and I actually think it is causing me daily pain. (13 months and it hasn't settled!)

All these drugs affect everyone differently, an differently at different times (my last mirrna was a godsend!) and aside from the hot flushes Zoladex has been (and is!) amazing for me... Much more stable moods, no periods and little pain!

I'd steered clear of it for nearly 10 years... So glad I gave it a go!

Give it three months, and see how you go - it might be the answer you are looking for!

L

Bluetit profile image
Bluetit in reply to Sailorgirl

How does it work using it long term? I've been told if you use it for longer then 9 months it affects your bones. Thanks for sharing your experience I suffered from bad depression 5 years ago but in the last 3 years its all been hormone related and varies to how long that lasts x

CurlyWurlyAmy profile image
CurlyWurlyAmy

Prostap has been amazing for me so far. Ive had two injections and all form of irratic emotions were completely removed within a week of the first injection. Its like the removal of hormones from my body has made me a "normal" person.

i get hot flushes and night sweats and the best way to describe them is the feeling of dead heat that you experience when you step off the plane in a foreign country. I walk around convinced that the heating has been turned up full boot in my house when in actual fact the heating is off and all the windows are open!

prostap gives some people headaches they can be mild or severe or you might not get any headaches. I had mild headaches every day for the first month and then they disappeared. Some women have had severe ones and needed to go to hospital. Everyone is different.

you may get chest pains. I had chest pain every day for the first month. My doctor warned me about them and said that they are nothing to worry about and my chest pains have gone now.

you may get achy joints. My knees feel like old lady knees and hurt a bit. This is a symptom of menopause.

insomnia is another menopause symptom and it can be annoying. I get it a few nights a month and i am completely awake.

Endo wise i am completely pain free. It is lovely

Bluetit profile image
Bluetit in reply to CurlyWurlyAmy

How long have you been on the injections for? I'm concerned about not being able to go back once it's in my system and the future after I have to come off them if it does work. Thanks for sharing your experience x

CurlyWurlyAmy profile image
CurlyWurlyAmy

I have been on them for two months. I have made the decision to have a full hysterectomy, my own personal choice. And i am on prostap to see how my body reacts to no oestrogen in my body and how i handle menopause because i am not going to be having any hrt. X

Hello Bluetit.

I have never been on Prostap for my Endo but I have had the mirena coil put in twice.

The first one came out within a few months on its own during a heavy bleed. The second one stayed in but had no effect on my pain but made me bleed irregulalary. The mirena did make

My periods a lot lighter though. Unfortunately I suffered from clinical depression and anxiety. Which I felt was due to the hormones in the mirena. After a year I asked for it to be taken out and once it was, I felt emotionally more stable.

I know a lot of ladies have had success with the mirena but for me the emotionally side effects were too high.

Barbara

Bluetit profile image
Bluetit in reply to

Unfortunately I think I'm the same and as I'm having pains today I don't think it's really helping. Feeling quite frustrated really the only thing that helped me was the mini pill but if I went back to that I'd be risking a stroke due to being a migraine sufferer. Oh the joys of endo! Thanks for sharing x

Sailorgirl profile image
Sailorgirl

Hi,

I had a dexa scan for my bone density in April, due another one next April...

There is a risk of osteoporosis, but they do keep it monitored. The HRT is to help keep the bones strong. There are other drugs that can be taken to maintain bone strength.

Don't know how it will go long term, but it seems like my only optio ... And as I have my life back I'm not complaining!

Bluetit profile image
Bluetit in reply to Sailorgirl

Glad to hear you have found something that works for you. You have all given me a lot to think about x

sparkleghost profile image
sparkleghost

Hi Bluetit,

Thought I would share my experience with you. I was diagnosed with endo last September. It was too advanced for ablation (or so I was told - apparently it was hovering over my bladder, and if they'd tried they could have perforated my bladder which would be life threatening) but they managed to seperate some adhesions.

I'd already tried a number of treatments for my 'undiagnosed menstrual problems' by this point including a variety of birth control pills and norwthisterone so I'd already done some research and decided I'd wanted to try Pro Stap. Like you I have suffered with depression before and was worried about trying further progesterone/oestrogen based treatments in case it triggered a spell.

I had a seventh month treatment. During this time my moods levelled out and I didn't suffer from any acne, or have any cramping. On the other hand, I suffered really badly with hot flushes and gained a stone in weight. If you decide to try it, buy a fan for your handbag! I bought a couple and took them with me everywhere.

Throughout the treatment I continued to suffer with chronic back pain (one of the 'key features' of my endo, if you like) and since I had my last injection in May, I still haven't had a period, though I've suffered from terrible PMS and cramps for the past two weeks (irritable, depressed, tired, bloated, very sore boobs) and the back pain as usual.

Being honest I don't think it has worked for me. But by the same token, it didn't affect trigger my depression and I can see that it is something which really worries you.

Everybody is different and only you can decide but I'd say it's worth a shot. I hope it works for you,

Take care,

Rach xx

hay1967 profile image
hay1967

Hi im jay I've had two rounds of prostrap and it stopped my depression and panic attacks and the bloating and my periods but have a little bit of blood when I have sex nothing much no cramps. But I do get hot sweats on a night. Im 46 and I think its great. Ive had all the pills! Coils! And this works but the sweats for me are a total pain so I missed an injection and bang my panic attacks where back. Just give it a try chick thats all you can do hope this helps lv jay

Becca71 profile image
Becca71

Hi, I currently have the Mirena coil fitted due to Endo and am having the Gnrh injections also, these put me in the change, to stop the Endo's life blood! When I had the Mirena fitted it took me around 3-4 months for my hormones to settle. Why has your consultant said you have to have the coil out if your having Prostap? xxx

Kirendo profile image
Kirendo

Hi i have just had my first prostap injection n also i still have the marina coil in as my surgeon kept it in so i have both the only thing i feel is aches in my bones n tender breasts a few pains in my stomach but thats it and i should only feel all that for the first couple of weeks but i am happy i did it as the pain is minor compared to what i went through on a daily basis before i had any of it but no body can tell u how ur body is going to react some r different and some aint i feel i have made the right choice in having the injection but i dont no what effect its going to have in the long run i only had my first injection a week ago and allso my coil since november and i am only 33 scared but i did it as nothing else was working i have endometriosis and adenomyosis and it messed with everything i could not cope i thought for a long time n i noe feel free of all my pain all i no is alot react compleatly different i do get a little sad sometimes as well because if i am in so much pain i take pain relieve n it makes me look ill when i take it n i see my self in the mirror the amount of wait i have put on or my eyes r gray but thats something we all have to deal with and get past because the pain is beyond believe i wouldnt even wish it on my worst enermy we just have to keep thinking possative about r selves but if you r unsure make sure u do alot of research on it n maybe look in to see if u can have both they might say no as can interact with each other but i have been good so far i hope i have helped and i hope i aint said anything incorrect not used to talking to someone who has the same condition but depression is in everyone we all just have to control it but everyone is different

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