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

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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  • Do you know what the drug was called? X

  • 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

  • Hi

    When we are given what are very serious drugs by GPs and gynaecologists we really need to know what is their purpose and effect in our body so we can make an informed decision as to whether we want to take them. Excuse my cynicism but all too often these professionals bestow us with ignorance and seem to believe we would not be 'clever' enough to understand. But when you think that one person can fill another with a drug without giving any warning or advice to the person who owns the body, it's pretty horrifying and, frankly, irresponsible.

    This drug is in a class called GnRH agonists that includes Prostap, Lupron, Zoladex etc. GnRH stands for 'Gonadotrophin releasing hormone' which is the hormone produced by the hypothalamus in the brain that send chemical messages to the pituitary gland to tell it to send messages to the ovaries to promote the development of a follicle and ovulation. These hormones sent from the pituitary are the gonadotrophins and those we are most likely to be familiar with are FSH (follicle-stimulating hormone) and LH (luteinising hormone that triggers ovulation). When the ovary receives FSH it gets to work developing follicles which give out oestrogen in increasing amounts until high levels are reached prior to ovulation which is then triggered by the LH surge. It's a complicated process but the overall effect of GnRH agonists is to interfere with the GnRH receptors on the pituitary gland to stop the production of FSH and LH. Thus the ovaries don't get the instructions to develop follicles and, most relevant to endo suffers, the oestrogen production shuts down. This is why you go into a sudden artificially-induced menopause. These drugs were introduced for use in patients with oestrogen driven cancers who had little to lose, but they are serious drugs that interfere with the brain and yet seem to be handed out like sweets by gynaecologists who have often carried out no investigations to establish the severity and stage of a patient's endo. The common word used is 'shrink' in terms of what these wonder drugs will apparently do to endo. But evidence shows that they are only effective to a minimal degree in the most minimal of stages. They will in some cases halt endo whilst you are on them and relieve pelvic pain but often at the cost of other horrific symptoms, some of which can be long term such as loss of bone density and permanent loss of cognitive function has been reported. They can only be taken for a max of 6 months for this reason so symptoms will almost certainly return once the course stops. So we have to ask ourselves whether it can be worth such risks for what can only be temporary relief at best, and why gynaecologists don't give use the choice to make this decision or to opt for thorough surgery by a specialist instead.

    The basic message is that while some medical treatments can be temporarily effective in minimal stage endo (birth control pills, mirena coil etc.) these particular drugs should be avoided in my view as the potential harm outweighs the benefits as you have found. I experienced such crippling head pain while taking them that I had to wear a collar round my neck to immobilise my head in order to walk. I stopped after 3 months as I felt so ill but was told I must carry on. Following my subsequent research I discovered that they could have no effect in my body anyway, as I had no ovaries! I strongly believe that if you have severe side effects to a medication your body is telling you it can only be doing harm and it should be stopped. Even people with terminal cancer will have their meds changed if they suffer the severe effects we are expected to tolerate.

    If you have endo symptoms once you have your periods again request referral to a 'proper' endo specialist. I have put some posts on, including how to access such a specialist. Just click my user name. x

  • 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

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

  • I did wonder - boyfriend and partner, lucky you! I don't think it's harsh at all to lodge a complaint. Putting things in writing is often the only way to get noticed. x

  • 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

  • Well done. You are still relatively young but sound confident in taking charge of your own health from now on in partnership with doctors and not under their control. x

  • 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

  • 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

  • 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?

  • Hi Lisa

    I'm so sorry that you are going through such a bad time with this. Did you just have the one injection to last 3 months? I was given them once a month. If it was just the one then I think it will be a gradual thing as your own hormones get working again. As you say you will know when you have a period again. I think once you do you will find your anxiety lift as I think this is what you are anxious about - whether you are going to be normal again. The drug should be out of your system but it's very complex how it works and the stimulation of hormones that it interferes with has to be in a very precise rhythm for your ovaries to get going again and this is what has been interrupted. It isn't a case of just switching things on again but about restoring this natural rhythm which might take a while. So try and hold on to the thought that you are now rid of the medication and your system will be working hard to get itself back to normal. You only had it for a very short while and in a way it might be a good thing that you had symptoms that told you not to have any more to prevent it doing you any real harm. What drugs are you taking? x

  • 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

  • Hi Lisa

    Don't ever think you are a burden as everyone on here has had similar experiences and knows how isolating this condition can be. Remember that the first thing that happens when your cycle begins is the release of follicle stimulating hormone to get your ovaries to develop egg follicles. So if your cycle is 4 weeks you would have the FSH kick in around 3 weeks before a period. The medication switched your FSH off. The effect of medication will vary between different people but your jab was intended to last 3 months so if you add the 3 weeks on that takes you to the 15 weeks you are at now. That is the absolute earliest you could have your next period but given that things have to sort themselves out first it's very normal for you not to have had it yet. I think it might be a while yet, but I think that if nothing has happened in a few weeks you could ask your GP for a blood test to check your levels FSH and LH (the other hormone switched off) to see if you are producing them again. That would make you feel better. The problem with taking medications for the anxiety is that they can then give symptoms themselves so try and keep these down to a minimum so you don't depend on them when things get back to normal. Meditating and rationalising what's going on inside you and understanding why it might take a while should help you cope. x

  • 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

  • I'm glad your doctor is supportive and am sure you will feel better once you have your period and get your blood checked. x

  • 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

  • Hi Lisa - I'm so sorry you are still struggling. Unfortunately there really is no way of knowing as it is different for everyone. I should give it another month or so and then ask for blood tests. xx

  • 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

  • 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

  • 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

  • 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

  • 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.

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