Decapeptyl Monthly injections

I am new on here I find alot of posts helpful but i just think i am too young for my treatment and will it affect me down along the line in life. I have suffered with my periods from a very early age of 10 i was missing alot of school unable to move, vomiting, pain and nausea. i was back and forth to my doctor constantly and finally when i was 16 i found an answer to why ENDOMETORIOSIS!!! It took for me to be able to not walk on my left leg, vomiting and continuous A&E visits for them to really take me serious and have a look inside so i had my first operation where i was diagnosed with endometriosis. I was told i would get years of relief just like my mum ( She didn't have endometrosis till after she had me and had 10 years relief from her operation).

I got 2 years relief and was back to where i started when i was 18 i was in my final year of school and missed half the year therefore my exam results suffered and i didn't get the points i needed ( Luckily there was a different course i could do before going into a university which would take 2 years) I was offered Decapeptyl 3 month injection for 9 months i said no due to the fact the pill does not suit me or anyone in my family and the thought of having it in my system for 3 months and not being able to stop it made me worry as i get depressed on the pill as it is. I had my second operation after my exams i waited 6 months to be operated on and their answer was to insert the coil while i was being operated on. when i came around after the operation i was told the cysts i had had burst themself but they did laser off the endo stretched me and put in the coil. i was extremely sore after and the coil last all of 5 days after i came out of hospital as it was so sore i had to go to A&E twice before they would remove it. I was also told then i would get years of relief. I went on to do my 2 years of college and start another course in the September I began getting bad pains in the October by the November i was vomiting everything i ate back up after a while. I went to my doctor i said i knew it was the endo again he didn't think so he tried all different meds then went on to go to stomach specialist in hospital he did all tests including a endoscopy and colonoscopy which was only few months ago ( August) showed endo on the bowel.

I was on a waiting list for gynaecologist for nearly a year finally got an appointment for June i was told it was my bowels and i needed to sort it out i told her i knew it was the endometrosis she sent me away with aload of laxatives which did not work and prescribed Decapeptyl as a fix if the bowels were not the problem and an appointment for December 6 months away then. I tried the laxitives in hope i wouldnt have to try injection as it worried me. i went to four different doctors and each one said the injection was my only hope of having kids in life and helping myself manage the pain. i was very hesitant to start it but was told the gyne would not treat me unless i tried it and even said i could get it month by month so i had no choice. i am now 24 and i started the injection in September of this year and had my 4th one Tuesday. my experience has not been the best the livial did not suit me it just made me fee so much sicker so i stopped taking it. the first 2 months was just hot flushes, cramps, headaches and sleepless nights I also had a period and really bad cramps. The third month no appetite, still bad cramps, feeling sick and 2 weeks into 3rd one i began getting pains in my legs and arms and feeling really down crying and feeling bad about myself on top of all the above symptoms. after i got fourth one Tuesday i experienced a mini break down as i just could not handle taking it any longer and just broke down crying i also experienced bad pain the next day in my left side on my ribs as if i had been beaten i was given difiene spray to use and am seeing my gyne this friday but now i can prove nothing wrong and was the endometrosis all along but i don't like the way i am feeling on the injection and still vomiting all this time later. Sorry about the length of this post i just needed to get it out there rather than thinking about it alot myself i don't know anyone who suffers from it like this. Has anyone experienced anything similar or taken this injection that has any advise??

Thanks in advance

8 Replies

  • for me the mirena was best option I was willing to put up with pain and discomfort for six months and bleeding but once established it gave me my life back for many years

  • Hello...poor have had it rough ... Well I'm fairly new to endo too... I'm 22 and the next treatment they want me to follow is the injections... But I believe I'm too young... Inducing menopause when I have at least 20-30 years left... Haha. So... I went to see a private nutrionist 2 days ago... To follow a new lifestyle plan... Change of diet... Cutting out wheat... Dairy... Sat fats... Gluten. Going to be a hard slog for me... But I will give it ago and hopefully it will help my symptoms. As I have researched some of the food mentioned above can enhance hormones that cause pain and other symptoms!!! I feel nauseous all the time and pain... It's awful. Maybe having a look into your diet.... Could help. Read similar women who changed their diet and it's worked for them. Good luck. Ana x

  • Yes i have read that i think i will try it starting tomorrow. I think it will be hard as there is alot you cant have that you would use without a second thought. good luck with it x

  • Hi your my first read on here and it's like reading my life story... i'm now 42 and seeing the best results with change of diet after trying most of what you are being advised to take. The meds do give some relief but you have to consider longevity :) x

  • Thanks Yes i am going to try the diet starting tomorrow hopefully it will work in some way x

  • You poor thing. I can really sympathise. Decapeptyl was not good for me either. I had exact same experience as you on it. I asked them to stop after the 3rd injection as the symptoms from them on top of all endo symptoms was horrendous. I've since had an op to remove my endo and for now I'm a lot better than I was, although symptoms seem to be re-appearing slowly. I would never go on decapeptyl again! I guess it just doesn't work for some of us. Best of luck to you with everything I hope they fix you soon.xx

  • Hi,

    Endo is a horrible disease, isn't it. I have infiltritive stage 4 with LOTS of adhesions , pudendal nerve, and bowel damage :-(

    I found I got several years improvement from weekly acupuncture sessions ( tho you may be able to go less often ). However it is expensive. But I would say well worth a try.

    I went to a traditional acupuncturist who is experienced in dealing with endometriosis.

    I am now on painkillers which at least keep me functional ( fentanyl patches and paracetamol ) and am pregnant ( an assisted conception baby ) which helps with the endo ( tho not unfortunately with any of the problems it has caused such as extensive adhesions, and the pain from them ).

    I did find that i had to try a lot of hormones I was sure wouldn't work as it is almost a process they put you through. But speak up re the problems you are having. I was supposed yo get 6 months on prostap but 2nd month i got severe joint and muscle pain as well as all the usual hot flushes, mood swings, etc. So they added in some hormones as an addback therapy . However I reacted badly to it so they cancelled the course.

    I would demand to see gynae again and see what else , if anything , they recommend. But I certainly never got "better" from any of my surgeries, and had eg a laparoscopy followed by a laparotomy and my ovary out just 5 months later as the endometriomas just kept recurring.

    Good luck for the future.

  • Hi i havent been on this in awhile due to appointments and feeling unwell from the monthly Decapeptyl injections i was on since September. I was just wondering if anyone could shed any light on this as i don't know anyone who was on this injection before. I had an appointment in January with Gyne and she referred me to pain management specialist i have met him while there with her but waiting on an appointment with him. He also wants to do a procedure which requires him to do injections in my back through xray he can see where they go or something like that i didn't fully understand it to be honest but he prescribed me Amitriptyline 10mg to help with this procedure. Gyne has extended the injections but this time she said it had to be the 3 monthly one as i had got to do it my way for 6 months already so i had to try it. My problem is that all through the monthly injections i had night sweats and hot flushes but never bloating like i did before i started the injections I got my first 3 month injection Tuesday last week (24th February) and today i am looking like i am 9 months pregnant!!! has anyone had this experience? is it normal reaction?? does it go away after a time??? any advise would be greatly appreciated Thanks xx

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