I was diagnosed with endo in November, I ... - Endometriosis UK

Endometriosis UK

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I was diagnosed with endo in November, I got a 3month hormone injection and I have been anxious, depressed every side effect going

lisatf2004 profile image
19 Replies

I was diagnosed in November with endo only slightly behind left ovary. I got given a hormone jag for three months and I have been ill for the full 3months and still now!! It's horrendous I have been to the docs about 8times sinces, called, NHS24 about 5 time, I am taking panic attacks, anxiety attacks, body is aching, terrible thoughts, nausea, stomach ache, sleepless night, hot flashes! It's horrendous I would not recommend it! I was told nothing about this injection by my gynecologist or I would never have gotten it in first place as I only have a period for 2 days! I have been put on anti depresents I cannot wait to get a period again! It's been a terrible 3 months I thought I was going off my head and I a feel that everything shuld have been explained to me so I was given a choice whether to have this injection. I'm a shell of the bubbly person I usually am it has affected me so much

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lisatf2004
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19 Replies
Yazza profile image
Yazza

Do you know what the drug was called? X

lisatf2004 profile image
lisatf2004 in reply to Yazza

I am sure it was decapeptyl? More than positive. I have suffered terribly I feel trapped in my own little world and I am usually a happy go lucky fun person to be around to having to sleep beside my mum at 30yrs old! It's just crazy I canno wait until it is fully out of my system. I had no information about this injection and wished I had never got it

lisatf2004 profile image
lisatf2004

Thank you so much for the explanation, I had no such explanation from my gynecologist I'm am making a formal complaint, that may sound harsh but I have suffered from bouts of depression in the past and I am led to believe this drug should not be given to people who suffer from it and the doctor should have studied my full medical history before offering the drug. I only remembering coming around from operation I was out of it on morphine and I remember the gynecologist saying my endo wasn't serious, my tubes where clear, it shouldn't affect my fertility and gave me a prescription for an injection that would help the pain. She explained nothing about it or what side effects it may have etc etc and when I got my local nurse to give me the injection she didn't even know what the injection was for as the gynecologist hadn't even sent the report from the hospital to my GP! It's all been an emotional hard process for myself my boyfriend and my partner. I actually left a note for my family one night as I was positive I wasn't going to wake up one morning it has been that bad! I wouldn't advise anyone to have this treatment regardless of the pain, my pain I can control with strong anti inflams! If I was aware and informed of the effects I could have explained this but didn't get the chance to do it until I had been given the injection then seen another surgeon in January who yet again didn't explain anything about the injection apart from it putting me into a false menopause. I am grateful for ur info and hope it helps others too x

lisatf2004 profile image
lisatf2004 in reply to lisatf2004

I meant my boyfriend and ma family (not boyfriend and partner lol) x

lisatf2004 profile image
lisatf2004

I had another doctors appointment today, I have explained everything to my doctor and it was decapeptyl SR 11.25mg injection that I got. All my side effects are from this injection, I googled it and I have suffered the severe symptoms. My GP (whom is a locum doctor) agrees with my decision to make a complaint as he too believes I should have been informed of everything beforehand then I could have made a more medically knowledgeable decision! In the meantime he has put on on bet blockers now for my severe anxiety, and I will be writing a letter of complaint this evening. So my advice in the meantime to others just now would be look up the injection I have been given if anyone is offered it and I have suffered ost of the side effects and make your own decision!!! Xx

lisatf2004 profile image
lisatf2004

Thanks for all your input on the subject. It's a relief to speak to people who can relate to what is happening, I actually slept not too bad last night after reading through this forum and a few other things in relation to my symptoms. X

lisatf2004 profile image
lisatf2004 in reply to lisatf2004

I'm having a bad day today, started my beta blockers today, felt good for a few days there then it's crumbling away, anxiety is back I feel awful and very emotional should thi not be out of my system yet? I got the injection in November! I want my normal life back I cannot handle this x

Melgee72 profile image
Melgee72

Hi there,

I,m of a similar situation. I have been attending physio for the last few years due to a back and shoulder condition. My doctors know this, and after having severe periods for years I was referred to gynecology where I underwent a laparoscopy, endoscopy and D&C, they found endo which has wrapped itself around my ovaries, attached to my bowel and now the ligaments behind my womb, so I was offered a Hysterectomy but first to take prostap for 4 months ( monthly injections) and kliovance HR to combat side effects of the prostap.

I have only been on it 3 weeks and I am so upset and disillusioned by the whole process.

My back is in constant pain, as it already was in pain this time its 10 times worse. I have severe coccyx pain which I've never had, sharp pins and needles, and I ache all over, I'm all over the place, moods are like a rollercoaster, which is fair enough but I am disappointed that they knew I was attending ortho physio for severe muscle and joint conditions and the side effects could make it worse, as I would have definately not take it.

I hope it wears off really quick and doesn't linger about, Its really ruined my life for just now, and I have had to stop work, I work from home and I,m finding it hard to keep upbeat, ironically my job is a life coach and stress consultant, so I,m having to use every ounce of my training to keep me going.

I know it will fade out but its more than that...Good luck to you all, its such an emotional journey . xx

lisatf2004 profile image
lisatf2004 in reply to Melgee72

It's a horrible injection I would opt for other treatment your endo is way worse than mine I only have it slightly behind my left ovary so don't see why they felt the need to give me the injection I have spoke to my GP whom agrees I should make a complaint in writing. My life has been he'll for 4 months and my family and boyfriend have had to endure some difficult times with me. I am now on beta blockers to help with the anxiety. It's just crazy. I hope your injection wares off quickly it's the worst thing ever. Xx

lisatf2004 profile image
lisatf2004

Hi lindle, I think my injection should be wearing off as it's now been 15 weeks since I got it, but I am still having side effects from it. The anxiety is the worsed of all but there are time when I'm not sure what it is, I feel a can't breathe and that I'm going to choke! My doc thinks this IS anxiety I have now been prescribed diasapam another drug to the collection but I had a bad week where nearly every day I was having an anxiety attack last week, very emotional cried myself to sleep. I just can't believe how horrendous my life has been the last few months. I hope I am not going to suffer long term becuase of this. Is this happening to anyne else? Sometimes I don't even feel part of my own body and I'm presuming my hormones won't be back to normal until I get a period? Would this be the case? Again the doctors know very little?

Georgialouise91 profile image
Georgialouise91

Hi, have they offered to give you it as a monthly injection rather than 3 months. I was sceptical about having the 3 month one as I felt like this was a long time to have something in my body if I didn't like it. I rang my gynaecologist who said I can have it month to if I prefer. I know everyone is different but I haven't had any problems with the monthly injection. I have had a couple of hot flushes but nothing major. I haven't heard good things about the 3 monthly one. It seems a lot to be putting in your body at any one time. U should have been told what the side effects were in more detail. I would complain it's not right them leaving you like this xx

lisatf2004 profile image
lisatf2004 in reply to Georgialouise91

I wasn't given the option of the monthly injection this is my problem I have written a 4 page complaint letter I was fine for the first month after getting the injection only hot flushes then end of January beginning Feb that's when it really hit me I have never experienced anything like it in my life! The only reason I have found anything it is through this site which is a good thing but shocking at the same time as no medical professional can help me apart from give me beta blockers anti depressants and now vallium as they are the only things that bring me out of an anxiety attack which lasts for hours! I cannot wait to get a period so tht I know I am producing hormones again x

rajsam profile image
rajsam in reply to lisatf2004

Hi, I know this is an old post, but I am just wondering if your anxiety went away eventually? I am in the same boat as you were,

lisatf2004 profile image
lisatf2004

Thanks for replying, I don't want to be a burden to anyone constantly on here moaning and freaking out, I got the 3month injection I wasn't offered the monthly injection. I've been to the docs constantly I just cannot shake this uneasy feeling away. I'm still taking slight flushes, feeling sick, dizzy and outwith my body and it's definitely not just in my head but as you say because it's stripped so many hormones away they will be trying to get back to normal (well I'm hoping that's what's happening to me I just wnt to be normal again I've forgotten what that feels like. Doctors gave me setraline (anti-depressent), propranolol beta blockers and now diazapam as when I'm having an anxiety attack nothing Is helping I'm trying to self meditate and even though doctors and people are telling me nothing bad is going to happen to me I can't help but think otherwise. I wished I could turn the clock back to November xx

lisatf2004 profile image
lisatf2004

I did ask if I could have a blood test to check hormone levels but doctor said I would be better to just wait and let my period come then they can check and see if I've ovulating? This sight and information from yourself and others about endo, the injection and anxiety has been the only thing keeping me sane if I'm honest. I haven't taken the other medications yet, only the beta blockers but they were not stopping my anxiety attacks so only take the vallium when I'm in panic mode and can't switch off from it. I'm so glad I came across this sight becuase I do realise I'm not alone, not even so much for the endo because now I know I have it I can deal with it it's not having an effect on my life it's that injection that has ruined things for me and speaking to people like yourself who know about them and educated me on them is such a great help. I have a 4page complaint letter to be posted so I hope they take me seriously! Xx

lisatf2004 profile image
lisatf2004

Hi llindle, I still haven't had a period yet I got my injection on 26th November last year. So that would befive months ago does anyone know when I should expect a period coz docs don't know anything? X

Raczantie profile image
Raczantie

Hiya everyone,

I'm struggling with the exact same symptoms lisatf2004 has described with her decapeptyl injection. I've had this injection since last October and each time I have one the side effects seem to get worse and worse.

I had my last injection 3 weeks ago and my panic and anxiety is through the roof. Had the same thing happen to me in March and took me 6 weeks to calm down. I've decided to stop these injections, it's just not worth it.

Does anyone know how long if ever will I get back to my normal happy self. I know I'll have to wait months and months but will I ever get back to myself again.

Elliebearsf profile image
Elliebearsf

This is exactly what happened to me. I got the monthly injection 2 weeks ago with hrt and my life has been he'll. I've taken myself to the hospital 6 times because of the states I've been in but they shun u away. I've had zero support or answers from medical profession's. My gynae always seems to be on holiday and the only way I've been told to deal with it is through diazapam and antidepressants. My fiance has been my saviour through it all ... I've been in some very very low places and did some silly things as a result ... even then the hospital didn't help or care. I'm now on day 15 and cannot wait for this to wear off and go back to my basic anxiety .... I never thought I'd ever say that

rajsam profile image
rajsam in reply to Elliebearsf

hey, did the anxiety go away as the injection came out? I am in the exact boat as you were previously.. I just need some reasurrance that it goes away....

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