Hello ladies.
I had my first injection of decapepyl last Tuesday. The only side effect that I've experienced is a slight headache.
Is it too soon to think that I won't suffer too badly with side effects from the injection?
I was given the monthly injection and also been prescribed HRT which I haven't taken yet.
I would value your experiences of the side effects whilst taking GNRH.
Barbara x
You may be one of the lucky ones,Barbara! I had virtually no side effects from Decapeptyl - only some chin hair growth,which was easily plucked each night !!! It is very good that you have been given the monthly one as it is a lesser dose,so your body will react more slowly.Did you say you also have a mirena fitted? I am crossing my fingers and toes for you,that you will be like me and get some relief of pain for the time being.Sending you hugs.
I also tried Synarel GNRH ,as a nasal spray and experienced lots of hot flushes,headaches .Howver the relief of pain and no periods,made it worthwhile for me.
Hello daffodil.
Yes I am hoping I am lucky with this medication. I keep waiting for the side effects to turn me into a monster, but nothing yet! Do you think the side effects would be happening by now?
Yes I do have the mirena in. I asked if it was ok to have both and the specialist said yes. (?)
How are you?
I think the side effects,if you have them will take at least a few weeks to emerge -if they do! When I started decapeptyl I was in agony and had just had another burst cyst,so I was likle everyone else prepared for a big increase in pain ,This didn't happen for me( though it has since I went on Depo Provera) . My first jab did not stop my period( think was given at wrong time in cycle) but it was much lighter though still painful.Next monthly jab stopped bleeding and pain.I honestly was pain free,for 6 months and then when went onto HRT had some pain but not enough to have to take heavy duty painkillers -ie paracetamol helped.This was cyclical pain,so proof that even if the pituitary is dampened,the body is still working in cycles??
I might add though that I also have ME, after effects of Meningitis ,so may not have noticed side effects from Deapeptyl. All I can say is that when on Decapeptyl I forgot I had Endo altogether -it was bliss to have no periods and no constant pain.I wonder if having the Mirena might protect you as you are always going to have an inside source of progesterone.From what I read about GNRH the "flare " is caused by the pituitary receiving signals to stop producing oestrogen,progesterone and becoming confused and flooding the body with oestrogen( not what we want for endo) .However after 4-6 weeks the pituitary is exausted and stops,so we then have less oestrogen and hopefully less pain.The actaul menopausal side effects when they kick in are due to lack of female hormones and are the same as with a normal menopause ,except they are drug induced,so tend to come more quickly.Normal menopause is a process that takes many years from the peri menopausal stage to the actual last period.I remember Impatient explaining this is a much clearer way.
At moment I am in agony still( since October) and have had a shock with my Ct scan results. Abnormalities in womb and cervix,s o more tests and biopsies.I am now terrified it is cancer as I have been in pain so long and been merrily swallowing painkillers since October, thinking it is all endo related.MY Gp says it could still be endo and adhesions on the bowel,as this will not show.My biggest pain is in the bowel area,though I have acontinual period type cramping and burning which I associate with endo.Gp says nothing specific suggested,just abnormalities sop it could be fibroids,adenomyosis,or even the endo which has changed shape of womb.Am going to phone and ask for copy of report.Also will no doubt need bowel tests also.
So yet more waiting,though GP says results will fast track me to gynae appointment( been waiting for emergency appointment since December).
To be honest I know there is something far wrong to have so much pain,so am glad something has shown up and just want the pain to be treated,whatever the result.
I hope they investigate your problems as soon as possible.
Please keep me informed.
Lots of love.
Barbara x
Hi
Fingers crossed it will stay that way!
For me, I had my first prostap injection around 12 December 2012 (I remember as it was 12/12/12!) and was on edge all over Xmas waiting for side effects to kick in, was fully expecting a horrendous flare reaction and onset of side effects, thinking allergic reaction type thing, especially as my consultant had told me things would get really bad before getting better etc and lots of horror stories etc! Thankfully that's not what happened! In the end I had no sudden and dramatic reaction but gradually started having side effects etc from about 2-3 weeks after the first injection and they built up over time, didn't get hot flushes and sleeplessness until after the 2nd injection, joint pain came after 4-5 months but was very on/off, the pain relief kicked in around 7-8 weeks around time of 3rd injection. Hopefully you won't suffer too many side effects x
Did the injections help you Hayls ?
Massively! I was really really struggling, constantly drugged up on pain killers and had been off work for weeks and weeks before I started them, 8 weeks later i was 99% pain free, working and on holiday with no pain killers! I did have side effects but for me it was so worth it, it's all relative I suppose as things had been so bad before that the side effects would have needed to be bad for me to complain etc. The only thing that messed it up a bit was that I started HRT at 6 months and that undid some of the good of the injections so only took the HRT for about 4 weeks in the end, the HRT also excelerated the weight gain quite badly so in hindsight I'm pretty hacked off about even sticking with the HRT for the 4 weeks I did but if I hadn't at least tried it I would have worried if I was doing the right thing as everyone tells you to take it after 6 months (although my new gynae doesn't agree that it's necessary at 6mths unless you plan on being on the injections long term I.e. over 2 years and are over 45).
I'm really pleased that they helped you. I am hoping they will help me as much.
I wished someone would write how great these injections can be as they get a bad press on this and other forums!
I was very worried about going on these injections. But last weekend my pain reached an all time high...... And out of desperation, I agreed to try them...... And so far so good.
Thank you for replying.
X
Hi Barbara,
I'm one of the naughty ones who goes on about the negative effects of gnrh. I didn't really mind hot flushes and other incidental stuff but my brain going awol was a huge problem and my memory was never as good again. We can only speak from personal experience and everything in this endo game seems to be a gamble no matter which route you decide on.
Even though I have huge reservations re gnrh I always leave the door open to change my mind. I realise that I might find myself in a position in future where gnrh might turn out to be the best option available. Since my scan results last week I have been told that further treatment surgery or a hysterectomy would be by laparotomy. My idea is that if I went on gnrh maybe everything would shrink sufficiently to do either op by keyhole.
I'm really happy to hear you have no issues. Long may it continue. Hope you are getting some sleep! x
Good evening Brownlow.
I hope you are better than last week.
No you aren't naughty.... You share your experiences and that's
why this forum is so great.
I just discovered that most entries onto this forum, were on the negative side of GNRH (I think I've even wrote a couple!) but like every treatment, there are good and bad stories.
I'm not sure what my point of view on GNRH will be in the end. I know there are short and long term side effects and that it will not cure me. But I also know that some ladies have respite in their pain and feel revitalised while taking GNRH.
I do know that this time last week my pain was so severe, I would have done anything. I am still in pain (especially rectal pain) but it's not anywhere as severe as last weekend.
I know that when I do have a hysterectomy eventually, I can look back and tell myself I tried everything!
How is your pain this week lovely lady?
X
Hi Barbara,
I just read my reply to you and noticed that the last sentence in the first paragraph could be interpreted as being defensive! Not my intention at all. I thought I'd mention that just in case.
I was in pain last night but not too bad. I also seem to have pain in my hips like I did following laps a few years' ago. It's either the anaesthetic or the unladylike! position we get contorted into for the op. Probably both.
What's going on in my head is more of a problem. I just posted my current situation on another thread so sorry for repeat. With the impeccable timing particular to a surgeon, he dropped the bombshell just before the anaesthetic for the hysteroscopy! I now have endo on my bowel possibly stuck to my cervix, my fibroid has doubled in size to 6cm and several more have started growing. All in the space of 3 months. I believe that the oestrogen in the combined pill has caused this bad state of affairs. My specialist said if he were to operate to treat or do a hysterectomy that it would have to be by laparotomy. Needless to say my GP has now referred me to a new specialist. I feel like such an idiot for not making the oestrogen connection and really questioning it.
This is why I was thinking of GNRH in the hope of making keyhole surgery possible or just taking it anyway until menopause! So I might be joining you!
Your labrador is so lovely and made me smile! Glad to hear your pain has reduced. I hope things improve. x
I think the oestrogen in the pill has accelerated your problems massively! How long do you have to wait to be seen by the new specialist ? I hope you will be seen as an emergency case.
The picture is of my baby... Ozzy. He is always by my side and is great company in the middle if the night when I can't sleep.
Take care and chase up the doctors!
X
Funny you should mention emergency case. My GP said wait until after my next period before seeing new specialist but that's just too far away for my liking. The one advantage of going private is that hopefully I can get seen soon. Not only has my idiot of a specialist got me into this mess but I have also paid for the privilege.
Give Ozzy a hug from me! x
Hi Barbara. Im currently awaiting my 3rd injection. Yes I have had a rough time with side effects but im keeping my fingers crossed that you hopefully dont suffer. Big hugs xx
Hello septimus
Can I ask you what side effects you have had and when they started?
Ive had high bp, bad migraines, bone pain which has been unbearable. Hot flushes, wihdrawal bleeding and much more.
Brownlow, try not to worry too much about the endo on your bowel. My bowel is stuck to my cervix which wasn't removed during hysterectomy but i don't believe it has caused me any problems. We can have it and it not cause pain. Hope you get sorted soon and hope you're continuing symptom free cuddlybarb.
How are you Dillweed? Thanks for the reassurance. It makes me feel a bit better. I did have rectovaginal endo before and it was really painful so that's why I got quite scared, you know, sequel to a horror movie!
Barbara, hope you don't mind me hijacking your thread with all MY stuff. Hope you're doing well today and got some sleep last night.
Hi Cuddlybarb,
Like you I have barely had any side effects from my first injection, I go for my second in 2 days. I had a slight headache on and off through the month, a few hot flushes, a slightly shorter fuse and maybe 2 days in total of slight twinges! I was due my period this weekend but it hasn't arrived yet!
Hope it continues to work for you
x
You sound as lucky as me. I do have a slight nauseous feeling.
I hope we continue to be "lucky"
Barbara x
Just to say hi and glad your okay x
Doing really well, no regrets xx
I have just been to see my gynaecologist today. They have put me on the waiting list for my second laparoscopy as they finally believe the pain to be bad enough. In the mean time they want me to have the decapepyl monthly injections which I have agreed to start on the 6 may. After coming home and reading up on the side effects I am now worried about starting them so please contine to keep us updated on your side effects
Still no side effects too report! X
Is this fair according to NHS Constitution ?
help please :(
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