Decapeptyl SR 3mg Injections - about to start today.

[sarahmd1973]

Hi Everyone

Not really sure where to start to be honest. Brief medical history about me, I have a very rare kidney disease and about 10 years ago I had both of my own kidneys autotransplanted into my pelvis (I won't bore you with all the details), but this was a hopeful cure for the excruciating pain I was in 24 hours a days.

Due to these transplants, I have now got what appears to be endometriosis. I also have severe polycystic ovaries and am insulin resistant, but due to everything being pinned and stapled into place in my pelvis, it appears the endo has wrapped itself around the pins, but I get severe pelvic pain so many times a day now, I have lost count, and this has been going on for a couple of years now, but thanks to a new doctor, things have moved on finally.

So cutting a very long story short, the are unable to do a laparoscopy of me, due to everything in my pelvis, so have advised that this is really my only hope of going onto the Decapeptyl SR 3mg injections, in the hope that it stops the pain (which is also really bad first thing in the morning when I need to empty my bladder, and sometimes when the pain is at its worse, it makes my bowels open, but once that is done, the pain eases, which no-one seems to be able to give me answer about, except that it is endometriosis). Gynae have advised that if the pain stops during the six month treatment, then it gives them a business case to remove my ovaries. They are reluctant to do a full hysterectomy due to the fact that everything is in the wrong place and everything is stapled into place, therefore would mean another very major operation, and my womb and cervix seem to be fine.

That is until I have started getting severe bleeding after intercourse, and am now waiting for a 2 week urgent referral to check for cervical cancer! It just gets better!!

Anyway, I am extremely nervous about these injections, and just wondered if anyone could give me any advice or help please? I have read some awful stories, and as one person has put on here, unfortunately the people who don't have problems with this injection don't post their stories, its only those who are having a rotten time that write as they are desperate for some help, which I can totally understand, as this is all new to me.

This may seem a little vain of me, but along with all the menopausal symptoms, I am also worried about gaining weight. I am not obese, but I am larger than I should be due to the polycystic ovaries, and every day is a losing battle with my weight, and although they have advised me that shutting down my ovaries will help with the PCOS, but then I am hitting menopause, so swapping one for another. My mum went through a dreadful time with her menopause, and I used to have the most awful PMT, and just know that I am not one of the lucky ones who will sail through it.

Above all I just want this pain to stop, it has gone on for so long now. From what I have read, the first couple of weeks with this injection appears to be the worst. Can anyone advise roughly how long it is before you start feeling menopausal?

Sorry for rambling, I am new to this, but any help or advise that anyone can give me, would be so very much appreciated.

Thank you for taking the time to read this, and hope I haven't bored the pants of you all.

Many thanks

Sarah

[daffodil]

Hi Sarah,

So very sorry to hear what an awful time you are having -you have come to the right place as all of us know what you are suffering.

Just want to reassure you about Decapeptyl! I also have numerous other complicating factors, which make drug treatment and surgery very difficult. Have been through a big selection of pills,Depo provera,GNRH agonists and Decapeptyl was for me,quite miraculous. Due to being an unusual case( have ME/CFS,multiple drug allergies, disabled from Meningitis) I was allowed to have 6 courses of 6 months of Decapeptyl. This has had side effects on my bone density ,but it was a case of being in such agony I was totally bedbound and housebound and being unable to take morphine, so only getting pain relief that took the edge of the pain To be in chronic acute pain,without adequate pain relief is unbearable. Within a week of Decapeptyl injection,I was in much less pain and after 2 weeks was totally pain free - not even a twinge or pains at certain times of month which I experience on Progesterone.

The injections are monthly,so even in worst case scenario that you reacted badly,the injection can be stopped.Unlike others who had horrendous side effects,the only thing I had was some chin hair - easily plucked - and a side effect I was happy to have ,due to having 3 years of no pain.Howvever,it is not a cure,as when you stop,back comes the pain.You are righ tin saying that forums tend to stress the bad experiences .Those who have successful treatment are too busy leading normal lives,I suppose! Perhaps I am lucky in not having menopausal effects! In the end it is a personal choice - pain reduction or menopause.I remember I wasn't happy about thought of medical menopause at first,but having tried it I only wish I had opted for it years ago.I have had endo for 30yrs!

Please fell free to PM me,if you want to chat further.Take care and han g in there!

[sarahmd1973 in reply to daffodil]

Hi

Thank you so much for your response, and it is lovely to talk to people who have the experience and know what I am talking about - Gosh I really appreciate what you are saying.

I understand acute chronic pain, as I am on morphine for my kidneys and found that the morphine does not work on this pain in my pelvis as it appears to work on a different pathway, therefore I having been eating high strength ibuprofen for fun lately (at least 5 400mg tablets per day), which I am not supposed to have because of my kidneys.

I think the horror stories and reading all the side effects is probably not a good thing as it can really put you off, and that is what it has done for me.

I am sorry to hear of all your problems, and for you to still be so positive after all you have been through, is really uplifting for me, and I so admire people such as yourself who are still an inspiration to others, despite what you are going through on a daily basis. I really appreciate you taking the time to respond to my post, and for being so positive. Thank you so much, you have definitely made me feel a little less nervous about having my injection tonight (though my worst fear is of needles, and you would think after having blood tests every month, numerous blood transfusions etc I would be used to them, but I still hate it!!).

Thank you again, and take care, I really appreciate your response.

Sarah xx

[daffodil]

Hi Sarah,

You sound as if you have been through a tough time too, with your kidney problems. Have you ever attended a Pain Clinic? I have attended for 2 separate things - M.e pain and also endometriosis .If not ,it would be a good idea as you have complex pain relief needs .Problem with opiates is they are very addictive, so you have take take more and more -I'm sure you are well aware of that with kidney problem. I was tried on various drugs - amytriptilene , trigger point injections of local anaesthetic and also a Tens machine.I found the Tens to be helpful but a bit of a nuisance with it eating batteries( rechargables don't seem to have same effect) and also it falling down the toilet more than a few times lol!! The good thing about a Pain Clinic is that they really do believe you are in pain and will try to find something which suits your particular needs.They also have much more knowledge about the interactions of drugs than your Gp or even gynaecologist.Accupuncture can aslo help.

Hopefully though - the Decapeptyl will work very soon and you will feel a new woman, free of pain! Good luck tonight and just think, you have endured much worse than a needle - you wont see it anyway as they put it in your buttock It is quite a nippy injection, but over in a second - my Gp tells me to wiggle my toes on the side it is going in and this seems to help. Do let me know how it goes and keep posting either here or privately.

One thing I have learned from so much illness is that I can try to help others going through similar experiences.Forums are a great way of finding and giving support.I also volunteer on Meningitis Trust ( Meningitis Now) forum and through that have met some amazingly brave and inspirational people.I think suffereing can result in good or more negativity and just supporting people when they are at a low point can often make all the difference to whether we get overcome by our suffering or manage to go through it? I am not saying I am always positive lol , but my faith and my friends and family keep me going. You take care - sending you a big hug.Gillian

[sarahmd1973 in reply to daffodil]

Hi Gillian

Yes I have attended several pain management clinics, and they have never been able to get on top of it for me. I had a small tens machine, but as I am going through a very messy divorce on top of everything else, my husband has decided to lock me out of my house and keep all my possessions, despite him cheating on me, and moving his half his age mistress into my bed!! That's another story lol.

Thanks for the tip on wiggling my toes, I will try that tonight - I think I would have been ok about the injection had I not seen the needle. Of course I opened the box when I picked up my prescription the other night.

Regarding the morphine, I have been on it now for over 12 years, but my new doctor has managed to wean me down from 180ml slow release per day, down to 20ml slow release, and then just the odd 10ml tablet as and when I need it, which is good. I am on so much medication for a variety of different things, I am sure I would rattle if you picked me up - something I imagine you are well aware of that feeling.

I did join, many years ago, a forum for my kidney illness, and met a wonderful girl in America who had had the same autotransplants as me, and we have become such good friends now, but her advice, knowledge and help before my first operation was invaluable, and I learnt so much more from my surgeon about the whole process, because of the questions she told me to ask, she was and is amazing, and her friendship is something I cherish.

I am desperately hoping that I don't suffer too badly from the side effects or the menopause, I have just moved in with my new partner, bless him, he will be kicking me out soon, if I get too bad!!

Anyway Gillian, thanks again, so much, and I will let you know how I get on and whether I will be climbing the walls in a couple of weeks, or jumping around like a new women (fingers crossed for the later).

Take care and keep up the good work, Sarah xx

[daffodil]

Gosh - I am also going through divorce ! Illness destroys so many relationships.My husband loved me in health,but in sickness,well he cant cope and like you found someone else!

Hope the jab works.Dont accept HRT on the first injection as it will replace oestrogen and wont work as well.I had to wear HRT patches after 1 year of treatment,but had to stop as got a pulminary embolism! Hopefully,depending on what sateg you are in your cycle you will not have a period, though you may have a bit of spotting.

Don't watch the nurse or Doctor loading the injection- it really is over in a second! Take care.X gILLIAN

[sarahmd1973 in reply to daffodil]

Illness does seem to kill things off - I think mine was the fact that I couldn't have children, plus being ill all the time, despite me giving him the option over 11 years ago to go and find someone else as I knew he wanted children, he chose to stay with me, but must have got too much for him in the end. How he will cope with a girl half his age, I have no idea, but its his bed and he can lie in it. He did me a massive favour to be honest, I was stuck in a loveless marriage anyway, but I would never have left as I valued my vows too much, but now I have been with my new Partner 10 months, moved in with him at the beginning of October and its the best thing I have ever done, and he is amazing about my illness which I told him about from the beginning and he is fantastic about it. He attends all my appointments with me, researches everything on the internet, and is just so loving and caring, I actually didn't believe men like him existed!! So something good has come out of it all.

I can't watch needles going in, that's when I pass out lol. I am useless, I really am, a total wimp when it comes to needles. I had to start Vitamin B12 injections a couple of months ago, and it was 3 injections for two weeks, and then 1 every three months for the rest of my life. Why can't they just do things orally and stop with the needles!!! And then flu jab last month, I am like a pin cushion. There should be tablets or liquid for everything I say, for complete wimps like me!!

I haven't had a period for about 2 years now as they were so bad I was on my pill constantly without a break, but last year I had a time where I bled constantly for 7 weeks, and have been on northesterone now constantly since then as well. But if I get one, then it is something I will have to deal with, it will be my body trying to get used to the new things going on inside it.

Thanks again Gillian, I am getting more and more nervous as 5.30pm is creeping up on me - uuuggghhhh xxxxxxxxxxxxxx

[Bexyrich]

Hi,

I just wanted to post a positive message to you. I had decapeptyl monthly for 8 months and have to say towards the last few months on it were brilliant and im happy to say i still feel brilliant and had my last one in July.

I hope it works for you as it has for me.

Good luck.xxxx

[sarahmd1973 in reply to Bexyrich]

Hi

Thank you for the positive response, I do appreciate that. It is nice to hear that not everyone has a bad time on it.

I had my first injection last night, and apart from a bit of restless night and feeling very hot, a sore right buttock and slight queasyness, I am not feeling too bad, but I suppose the next few weeks will tell.

Thank you again, Sarah xx

[Bexyrich]

No problem. I felt worse for the first couple of months and you always get sore after they give you the jab but this was nothing compared to the horrendous pain i was feeling. I will be keeping my fingers crossed for you.

xx

[daffodil]

Glad to hear you braved the needle - do let us know how you get on.I am wishing I could be allowed another course ( have had 2 many already) as I am in agony at moment,after stopping Depo.

Meant to say - don't touch or rub injection site as it can cause a tiny lump to form - nurse told me this ,along with the toe wiggling!

Have a good weekend.

[sarahmd1973]

Hi Ladies

Just thought I would give you an update, and to be honest it has been awful. I started bleeding three days after the injection, and OMG I have never seen anything like it. I have been used to very bad periods in the past, but I have never experienced anything like this. The pain I was in was like no pain I have ever known, and I have had two kidney transplants so I am not shy about pain, and I ended up having to have two days off work as I was losing so much blood I physically could not leave the house, as I was flooding so badly. I was rushed to my doctors, and he said it was the injection shutting everything down, and that my body was starting to pass dead bits of the endometrios. I know that sounds disgusting, but he said it should calm down. I was literally screaming with the pains I was getting.

Finally after two weeks, the bleeding stopped, but the menopause has kicked in with a vengeance! The sickness is still here every morning, dizziness, severe forgetfulness, and now very bad mood swings, and awful night sweats.

On the good side, the pain in my pelvis has now gone completely, I have lost 1/2 a stone in weight, my nails are growing like crazy and have become stronger (I have always had awful nails), and my skin is getting a lot clearer.

I have asked my doctor about getting my HRT but now he is saying he will not prescribe it as I have an urgent two week referral to check for cervical cancer. I don't believe I have it and am not worried about this, but I really need to get onto the HRT as I am being a total cow to my partner at times, and I don't want to be like this over Christmas.

I believe there is some wonder tablet being sold at Holland & Barretts for menopause symptoms, so am going to check that out, but is there anything else anyone can recommend.?

Sorry for moaning ladies, as I know everyone on here has their own problems, but if anyone can help me get through this stage, I would really really appreciate it.

Thank you, Sarah xx