Hi, first post on here. I had my first lap on Friday. It went really well. The surgeon said they separated my kissing ovaries and seemed delighted it went so well. So I'm due to get the decapeptyl injection today and I'm terrified. I kind of buried my head in the sand since Friday about it. I was told I could ttc or get the injection. I don't want to ttc yet so I feel like I've a gun to my head to go through the menopause for 3 months at 28. Anyone been on it? Am I right to be so scared? Also does anyone else have joint pain? I get it in my hips and shoulders but from being in bed or lying on them. It feels like my bones are rubbing off each other and I have to do stretches until they kind of pop and I get relief. My hips killing me at the moment. Thanks for any replies.
Severe endo removed on Fri...Getting Deca... - Endometriosis UK
Severe endo removed on Fri...Getting Decapeptyl injection today...but freaking out!
Big hugs XXX
You don't have to take any hormone treatment you don't want to. It's your body and no one should put a gun to your head.
Personally GnRh treatment didn't work with me and gave me horrendous side effects, I gave up after 2 months but some ladies swear by it. Our bodies are all unique.
Thanks starry...did you get an injection each month? I couldn't get it yesterday as my usual doctor wasn't there (the surgeon said to get it yesterday) and I was booked in with a male doctor (didn't realise until I got there) he hadn't a clue and had never heard of it so I'm booked in with my doctor tomorrow to have it done...I feel happier cause I trust her and she is the person who helped me get diagnosed...my injection is just the 1 for 3 months...can they reverse it if you have a really bad reaction? Does the doctor give you anything to help with the side effects? I hope your doing well yourself now 
I had zoladex, which was one injection a month for 3 months initially. It's not reversible once you have the implant until it wears off. If you can do I'd ask to get monthly jabs, then you'll be able to pull out if you do react badly. I only managed two jabs and couldn't bring myself to have the third and my Consultant was supportive after seeing the state I was in on them. I would also ask for tibilone or another Endo friendly her option it did take the edge of some of my symptoms.
But I was particularly unlucky I think. It took 8 weeks for my side effects to stop after my final jab.
I was given tibilone hrt which did moderate some of the side effects, just not enough to be tolerable
Thanks I'll definitely mention that to my gp. Does that have oestrogen in it? Or do any HRT have oestrogen? I was looking up endo friendly HRTs yesterday and the side effects of them nearly sound worse than the list of side effects for the decapeptyl. But I know everyone's different and if I was in a bad way I'd try anything.
This is a summary of hrt and tibilone and why it is viewed as endo friendly womens-health-concern.org/h...
Thanks so much for the info...I really appreciate it😊...I have the 3 month injection already...I bought it yesterday in the chemist😕 I'll discuss it with my doctor and see what she thinks...3 months is a bit of a commitment...I got the depra vero I think it's called something like that (contraception jab) years ago and that lasts 3 months I reacted badly and couldn't wait for it to leave my system, so I can only imagine how uncomfortable and distressed you must of felt. You think getting diagnosed is a battle, and then you have some extreme treatments to choose from...I think it's one of them things I need to realise it'll never be straightforward. Thanks again.
Hi Andy17, I hope you don't mind me messaging, I am due to have the decapeptyl injection tomorrow, my operation will be on 29th January so its in preparation for it. They said the injection will be in my system for 2-3 months and I am worried because of all of the things i have read about side affects and we had been trying to conceive since coming off dianette. My periods returned after coming off the pill on the 22nd Dec, the same day i received my letter with my operation date which I have been waiting for since I was referred in Jan 2017. I have also heard that it can take up to 6 months for your periods to return again after having decapeptyl - did you go through with having the injection? x
Hi Joeyanna. Yes I did get the injection. It's been nearly 5 weeks now since I got it. I completely understand what it's like trying to decide to get it or not. Some of the side effects sound so scary and there is the fear of once it's inside you there's no take backs and you just have to ride it out. The only side effects I've had so far are hot flushes, being really emotional (crying a lot which isn't like me and once I start I feel like I'll never stop), feeling nervous randomly (my heart racing and nerves in my stomach), and feeling my heartbeat all through my body in bed at night(not all the time), and I wake a lot more at night. But the positives for me are the only pain I've had I put down to the operation. My usual pain is completely gone. I don't know if I'd still be pain free without the injection because I got it 5 days after my lap. So one or both have helped alot. I was due my period around 5 days after my lap and that was the day I got the injection. I did have a period but it only lasted 3 days was light and pain free. Sorry to hear you had to wait so long for your operation date. Are you getting a 1 month injection or 3 month?
Thanks so much for your reply Andy17! thats so helpful, its so difficult to know what to do for the best, but I think one of the things that has made me feel so uneasy about the injection is how long it will be in my body for - and then the risk that my periods might then take a really long time to come back when I have finally had my first period since coming off the pill. We have been TTC so its a little concerning!
I feel like I have coped with the pain for over a year since it started back in November 2016 (my previous op was April 2016 and I felt like I didn't really recover or feel any better for the op) and then subsequently paid privately to see a consultant in the February because the wait to see a consultant was looking like 8 months+ so coping with the pain for longer would just be part of the course for me I think. The op was meant to have been 18 weeks later so end of July was when it was expected, then a delay so i was told prob end of Oct, the by the end of the year and now an actually date of 29th Jan.
My consultant when he referred me said 1 month for Decapeptyl, but the doctor has said 3 months and i think i have been booked in tomorrow for a 3 month one - i feel like all the communication has been a bit skewed! I had a pre-op last May and I'm sure the nurse told me then 1 month? I am going to call the gynae team/ or my consultant first thing tomorrow and check whether I should be having 1 month or 3 months and also ask whether it is necessary for me to have the injection considering I didn't for the previous 2 operations? I feel like I need to be a bit more assertive haha - I am 33, TTC and have waited an awful long time for the op, so I feel like I am within my rights to question it?
I hope the side effects ease for you a little - thats really good about the pain! Thanks again for your reply x
Yeah if you're ttc then you should definitely query if it's necessary. You are dead right it's your body and you are the one who has to put up with the consequences if the wrong decisions are made. I wrote a list of all my questions to bring to the doctors. Unfortunately my doctor was a bit crap and went onto Google to find answers to some of my questions. But write down everything that's causing you to worry and get the answers before you go through with it. Ask for monthly injections and say you're not comfortable commiting to 3 months if that's how you feel. We have to be assertive because no one else will do it for us. X
Hi Andy17 thanks again for your reply, i went today and had just a 1 month injection (I'm so bruised from it!) and the nurse said that my period should return after 2 months from having the injection so I feel a bit more reassured! Roll on 29th Jan now to get the op out of the way! Fingers crossed any side affects from the injection won't be too bad! Hope the injection continues to keep you pain free xx
No bother at all. Feel free to message me anytime. Yeah it hurts like hell after getting it. That's good that it's only 2 months. I can't believe it's taken so long to get your date. I hope they get it all and that you have a speedy recovery. I didn't notice any side effects till about 2 weeks after getting the injection. I hope you don't get any unpleasant side effects. Take care x
Hey Lindle, Before the lap they had mentioned they thought I had kissing ovaries from seeing it on Ultrasounds . Then when I spoke to the consultant before I was discharged she said all my endo was in the one spot and it was stage 4, she said that it's very strange as usually if it's severe it would be everywhere. She said she had removed it and separated my ovaries. I live in Ireland so I think it's done different over here. I am attending a maternity hospital and I looked up my consultant and her sub speciality is endometriosis and fertility. So I'm hoping I'm in the right hands. I will get onto endometriosis Ireland to get more info about how things are done here. The injection is to help my ovaries apparently, something to do with them floating on their own? don't remember the full conversation I'm going off what my mum says as luckily she was there when the consultant explained it all. They filled me full of fluid so my ovaries wouldn't attach themselves to anything in the mean time, which was great as I had no pain at all from the gas so I got away so lightly for my first ever surgery. So is getting it all cut out the most important? Is hormone treatment just temporary so it's not as good?
How do you find out how severe your endo is?
Prostap wearing off
Advise needed on endo diet please
Diagnostic lap- minimal endo removed but still in pain?
Second diagnostic lap tomorrow...anxious as hell
