Decapeptyl injection and horrendous side effects ;0(

[evilcat99]

Hi, I had the Decapeptyl 2 weeks ago to bring on the medical menopause for my doctor to see if a full hysterectomy would benefit me and relieve my pain and hormones. Well, i'm in hell. Pain, bleeding, acne, headaches, weight gain and hormones so bad I could actually just run away.

I can't understand why he has given it me, he is meant to be helping me and this has just made life impossible.

I want to know if a full hysterectomy is the same as this. This injection floods you with hormones, i guess I was wondering if by removing everything the pain would have to go away as nothing to be in pain right.

Someone please help as right now I want to rip my insides out to get rid of this aweful drug out of my body.

Am I being inpatient and things should get better or is this it?

[Sunflower1968]

Hi I had the prostap injection which I’m assuming is quite similar? Did he give you any hrt to take with it? I have to say I would never have the prostap injection again as like you I had an awful experience with it. Yet I have a friend who had so much relief from it. Which proves just how unique we all are and how different our hormone levels can be. When I asked my gynaecologist if it was the same as having a hysterectomy she said no she said a chemical menopause is more severe on the body, Again we are all different, I’m too riddled with Endometriosis to have a hysterectomy my gynaecologist has advised me against it.

I took hrt with my prostap injection but it was still hell. My advise is to be kind to yourself and try to remember it’s temporary and you needed to try it to see if it was right for you.

I retracted from the world for a couple of months whilst I was on prostap.

I would let your gp know of your side effects to see if they can help. There are lots of options with hrt gel/patches/tablets and once you find what is right for you then your symptoms should settle.

I hope that helps x

[evilcat99 in reply to Sunflower1968]

Thank you for your reply. Yes I was given Tibolone. This made me start bleeding again even tho last september i had my tubes removed and dermobrasion and haven't bled since this op. It brought back a period and pain I couldn't cope with. Also severe bloating.

They advised me to stop taking that on Friday. So it's now day 4 since HRT and honestly feel like I could go on a massive anger rage or drive into a wall.

I feel so upset and raged it's unreal. I feel like my period is due exactly same as when i was on the pill. This is why I was taken off it.

At the moment I feel like my doctor hasn't read my file or listened to anything i've said and instead fobbed me off with yet more hormones which is the worse thing for me.

Did your side effects get any better within time? Right now I just want this stuff out of my body, I can no way see me allowing another injection to go in to feel like this.

Eve x

[Sunflower1968 in reply to evilcat99]

Eve I felt exactly the same I actually had never felt so poorly as I did on that injection if you look at my previous post on “prostap hell” there are a few replies on there that might help? But I can totally sympathise with you as I would not have that injection again for a million pounds and I’m serious. I would ask to maybe see another doctor? Or gynaecologist?

The only way I got through it was literally focusing on the day I was in and I could not work or even drive my daughter to school and I’m a tough cookie so I know how you must be feeling as I was the same.

I experienced anger and then sadness and then extreme fatigue.

The hrt did not help my mood at all but I did not want anymore medications.

I believe hormonal profiling needs to be made available for complex gynaecological cases so we can identify what would be the appropriate treatment.

Instead we are all given pretty much the same medications and obviously we then all have different experiences and side effects.

I read about the Lupron law suit after I had already had my injection and freaked out! It’s on here on an older thread.

I have to say I am sure there are many women who benefit from these medications but we are not the lucky ones!

I truly do sympathise with you and hope you find some relief from another gp?

Take care x

[evilcat99 in reply to Sunflower1968]

Hi,

i've just read your threads, all exactly the same effects.

I agree with the full bloods for hormones. Last year I paid medichecks for a test. It showed i actually have low oestrogen. At any point during this has the hospital ever done a hormone count to see what they are dealing with. Just pick the next treatment in line and go with it regardless. All about saving money and avoiding surgery. For years i've been begging them to do a full hysterectomy and does feel like the final line before I can get it. But I was told to stick with this injection for 3 months so doctor can see if I would benefit from the surgery. I can't see how this injection can tell him that information as the side effects are that shocking.

Surely a hysterectomy and early menopause can't be as bad as this. I'm 42 by the way.

[Sunflower1968 in reply to evilcat99]

Hi I have Sandrena gel it’s estradol and you can kind of adjust the doseage to suit your symptoms and it’s helped me with menopausal symptoms - I was not having any menopausal symptoms before the prostap and it’s been many months since I had it but it put me into an early menopause just that one injection.

I agree with you completely about everything is about reducing costs it’s so irresponsible as some women have had severe life changing side effects from these medications.

The issue is many find it useful! We are the unlucky ones. With that said I do feel we should have been warned about the possibility of the severity of the side effects.

I went into such a dark place it was just awful and I’m still not 100%.

Please Keep me posted on how things go for you x

[evilcat99 in reply to Sunflower1968]

I've just rung the clinic and spoke to a nurse. She said I shouldn't have stopped taking the HRT as the previous nurse told me. She said that is why i'm feeling the pain and all the other symptoms. told her the HRT made me in unbearable pain, bloated me to the point of not being able to eat and make me feel shocking. She still told me to keep taking it!

Said that the injection will be working fine now (only been 2 weeks) and I should stick it out.

She fobbed me off and told me to speak to the surgeons secretary.

Told her I was in extreme pain, my head was going to explode and that I want to drive under a bus. But still said never said anything that i've read online about the surge of hormones it gives in first 2 weeks.

She said if i'm still feeling pain now then a hysterectomy would not work.

I sat in my car at work on my lunch and just cried. They've ruined my life with this injection.

I'm not even speaking to my partner due to my outbursts. My kids took the brunt of it last night. I just can't cope.

[Sunflower1968 in reply to evilcat99]

Hi Eva

I had Tibolone too but it did not provide me with any help for the headaches and pain and bloating or mood swings.

The gel has helped my menopausal symptoms BUT it has not helped my endo pain.

Maybe call your gynaecologist secretary and ask for some support/advice?

I know it’s no immediate help today but thank god it’s not permanent.

When I spoke with both my gp and gynaecologist secretary I was offered pain medication (which also have vile side effects) and more hormones.

I hope you receive some support, I had to take weeks off work and explain everything to family & friends for support - take care xx

[EndoJaz]

I am scared as I am meant to be having the injection to close down my ovaries before they remove them. Already had hysterectomy but they left ovaries...2 yrs on..having them out. Once injection is given how long does it last? Also is it free or do u have to pay for It? Hope things improve for u soon.

[evilcat99 in reply to EndoJaz]

Hi, do you mind me asking why are they removing the ovaries now and why not do it at the same times as you had hysterectomy? Were you better after the hysterectomy pain wise?

[EndoJaz in reply to evilcat99]

Hi

At the time I was told at 40 I was too young to have them out, the pain continued on the right but the hyst stopped the left sided pain for a while as removed uterosacral ligaments. The bleeding was uncontrollable so thats why I opted for hyst which stopped the bleeding. Pain now on right mainly but have left pain too. Been told for past 2 years I was imagining the pain then was told it was a hernia, now they finally listened as I took a detailed pain/symptom diary which shows cyclical symptoms. I am scared about agreeing to the injection as the side effects seems awful, I think the natural menopause wont be as bad as the jab although think surgical menopause will be worse than gradual natural menopause. Just want to be pain free 😢 hope things improve and u get someone to listen.

[evilcat99 in reply to EndoJaz]

Ok thank you for that. I had my tubes removed as I was getting pain and blockage in one of them and also had the dermobrasion last september. Pain has continued even though I don't bleed anymore until I had the injection and hrt. This brought on mega pains and bleeding. Loads of other pains too and migraines.

I stopped taking the hrt on the hospitals advice as i'm lactose intolerant and it was bloating me and giving me upset stomach and causing more pain. I now feel horrendous, pain, migraines and hormones raging. But hospital have now told me I should be takin the hrt to remove these symptoms even though they were making me ill. So two different types of advice from same place!

I'm not trying to get the patch hrt out of my doctors to relieve some symptoms until this injection is out of my body as I jsut can't cope with it anymore. Doesn't sound like having another injection would help me as women are reporting no let up in these effects after the 2nd. I'm at the point where i'm thinking i'd be better just putting up with the pain and managing it myself.

Surely menopause after hysto has to be easier than this!

[EndoJaz in reply to evilcat99]

Thats the trouble, a lot of conflicting advice, trial and error attitude. No one ever has an actual answer or plan. Once these injections are in your system there is no way out but to wait. Think I may pass on the jab and just go straight in for the op. Oh the joys!

[FNas]

I have been on decapeptyl on and off for years. You have to be patient with it. The first few weeks even months will be hard as your body is changing. It settles down after a while. Your body will get used to it. Full hysterectomy is absolutely life changing and a last resort. It increases your chances of getting cancer and research suggests it shortens your life. Also, full hysterectomy does not guarantee your pain will go away and you will be on strong hormone replacement therapy the rest of your life which also comes will horrendous side effects.

I know it’s horrible and painful but your busy will adjust to the injection after some time. You just need to wait it out. Use painkillers, hot water bottles for the pain. Eat well. Don’t smoke and drink excessive amounts of alcohol. Don’t use drugs. Exercise. It’s vital that you exercise regularly. This helps calm down all of your side effects and will also decrease the chances of weight gain. After a year on it I am the fittest/lightest weight I’ve ever been. I know it sounds counter-intuitive to want to exercise when you are in so much pain (I’ve been through it myself, pain so terrible I am screaming and crying) but exercise really saved my life. Particularly running. A lot of women say the same thing.

There is light at the end of the tunnel. You will most likely never be pain free but it can become manageable on the injection. Also use the HRT they recommend as if you don’t you will have a decrease in bone density which can lead to early arthritis. Also the HRT will subdue the hot flashes you will get from the injection.

I am not a doctor, so verify all of this information yourself through research. But I do have experience in the system as I was diagnosed around 6 years ago and have been through it all. Surgeries, HRT, hormone treatments and periods of no treatment at all. I’ve found the injection to be life saving but everyone is different.

I wish you the best on your journey. It can and will get better. You just need to be strong and let the injection settle down. Keep good people around you who care about you. And always put your health first.

Wishing you the best x

[CorganCat]

Hi there,

I know this is an old post but I’m hoping someone might see this! I was given the first monthly dose of decapeptyl on 11th Jan and a daily Tibolone HRT tablet. I started to feel weird about a week in, when I also got my period. Day 9 I was in excruciating period pain (which happens anyway but normally from the start, not the middle of the period) and day 10 the emotions hit hard. I was experiencing suicidal ideation, anxiety and distress and had to have an urgent psychiatric assessment. I’ve been off work and feeling very up and down, I can’t seem to sleep enough either. I think maybe it is beginning to wear off now, but tomorrow I am meant to get the next dose and I don’t think I wan t to. The whole thing is only meant to be 3 months and I am scared I will just have an awful time again. This was treatment for PMDD or severe PMS. I wonder if having the injection/tablets start so late into my cycle made me go nuts but the gynaecologist just keeps saying it should only have made me feel better and that it might be better the next time, but can’t give me a trajectory of what is “normal”. I feel a bit confused, there’s no way I’m the first of his patients to have the side effects surely!

I don’t think I will take the next dose - does anyone have any advice they could give?

Thank you