I've been wanting to reach out to people about this for a very long time and I was hoping I could maybe talk to anyone that has had the same or similar experience as me.
Sorry for the essay by the way
Here's some background, back in 2014 I was diagnosed with Endometriosis. It had been a very long road to be taken seriously, as I'm sadly sure that you all relate too, but I finally had my lap and was diagnosed. During the surgery they found that I had some very significant adhesions on my bowel and digestive system as well as fairly wide spread endo.
After my surgery I spoke with my specialist about next steps and was recommended a treatment course of Decapeptyl. Despite the urge to jump at the opportunity to get rid of this condition through any means I still asked what the side effects would be. At the time I was told that they would be very minimal and that he would prescribe HRT along side it to counter anything menopause related that the injection would cause. I was told "the effects will be no worse than taking the pill".
He suggested that I do a course of 9 months despite the usual being 6 because he had had better results from a higher treatment time. 6 months in I went in for a check up. I had had the worst time of my life while taking it. The side effects were disasterous. At this appointment I asked if it was normal and whether it was safe. I was told that the side effects would dissipate after I stopped the injections and not to worry. He also added an extra three months onto the treatment as I had bled though for the first two months of the treatment. It was 12 months in total.
At the end of the treatment I had another lap and no endometriosis was found but that was 2014 and I have been house bound ever since. I never recovered and things have declined. It was a high price to pay and one in hindsight I regret more than anything.
Since then I have been diagnosed with CFS and Fibromyalgia and i'm currently being tested for POTS. My life has been so badly effected. The worst of it is that anytime I have mentioned the treatment to a medical professional since they have either looked bemused as they have never heard of it for Endo or they have told me that it is very common for patients having this treatment to develop the issues I now have after having it. Something I was never aware of.
The biggest kick to the guts though has been that the endo has come back in the last two years. Something I had hoped wouldn't happen and that my specialist told me was very unlikely.
So my question is, has anyone else taken this treatment, what was your experience and am I alone ??
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Flossie96
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I went on decepeptyl, an injection I had every month and I had this for 6 months and also put onto HRT patches as even prior to this I was menopausal with hot flushes, night sweats, you name it I had it and it was debilitating. I decided not to take the 7th month, this injection mucked around with my mental health as the only way I can describe it is my head went into a dark place, everything was negative and I was going through all of the symptoms too of menopause, adenomyosis and endometriosis.
Even after coming off this injection which has been over 6 months ago, I have never managed to loose the weight I put on with it. No matter what I do, it’s awful. Had I known all of this at the start I probably would have said no.
Like you I have fibromyalgia and CFS however this was diagnosed prior to being on Decepeptyl injections. Some days I can barely function. I am so tired, my head is foggy and it’s not a great way to live. My life has totally changed and not for the better either.
Anyway you aren’t alone and feel free to reply back if you need a chat xx
Thank you so much for the reply. I really mean that. Its so nice to hear I'm not alone with this. And I'm so sorry you've been and are going through everything that you are.
I know there's no way of knowing what I would have done if I had known the effects, i'm sure you're the same, but no one even slightly explained to me just how much messing with your hormones can effect you. I would have really thought hard about doing it if I had known and probably would have gone down a different road.
I dont know about you but I didnt realise either just how dramatically this treatment affected your hormones. It was explained to me that it was like taking the pill consistently and not allowing a bleed. Like it just stopped my periods, that's all they focused on, and not the rest.
I hope you are doing better mentally and feeling brighter since stopping despite everthing youre going through keep strong.
I was put onto this injection by my gynaecologist as I have already had 1 lap and 2 ablations. Never told about how it could really muck up mental health or weight gain & feeling sh@@. It’s shocking. I sometimes think that they don’t know what to do with me. I also have problems with my bloods. It’s so cruel that we don’t only have gynaecology conditions, but also other conditions too. Has your GP put you into any medication for your fibro and CFS? X
It really is so cruel that there's multiple things. And that they all clash with each other and make them worse too. At least they do for me, I always get the most awful flare ups around my period. Its just horrific sometimes.
Thankfully my gp left and I was put over to a different one that is finally trying to help, she put me over the the pain management service, they've been lovely but not massively helpful, we kind of came to the conclusion that I was doing everything they would suggest. Still nice to be heard. But my gp put me on amitriptyline about 3 months ago nearly 4 and 'touch wood' it seems to be making a difference. I'm finally sleeping better so I'm not so exhausted and the pain is less. Still have really bad days but they're less than they were before.
And I've been seeing an osteopath, don't know how much it would help but it's been really helping me. She could see the issues before she even touched me. Fibro is so damaging.
Also if it helps, I put on 3 and a bit stone in the year I was taking the injectio and it's taken time but I've finally lost it. Just got to be kind to yourself.
Hi, my sympathies to you all. How do get a diagnosis of CFS / fibromyalgia please? I’m in a slightly different situation- post hysterectomy MR shows poss mild Endo ( I was giagnosed in 1998) and possible adhesions and possible pelvic congestion. And they’re suggesting hormone treatment from the pain - and I can’t tolerate progesterone. What effects did you have from the hormone treatment and how did they manifest themselves pls? Sending best wishes xx
Hi. So it's taken a long while for me. Sadly there's no straight forward test, it's an elimination diagnosis. So once everything else has been ruled completly out you will be given that diagnosis. If your worried about having either of the conditions it's best to just start talking to your doctor about it.
There are lots of different versions of hormone treatment, was it deceptyl they were recommending??
the treatment I had was a particularly extreme version of hormone therapy.
But this treatment works the same way as a menopause, its essentially a chemically induced version. So within a couple of weeks of my first injection (it was an injection once a month) I started developing menopause symptoms, so hot flushes, aches, fogginess, low mood, trouble sleeping, headaches, weight gain. And then 4 months in I was massively hit with full body pain and complete exhaustion. I was sleeping 20 hours a night and still feeling exhausted and couldn't leave the house.
The last thing I ever want to do is to completely put people off the idea of hormone treatment, and by the sounds of it what I went through isn't a guaranteed but its something to consider. I'd just say if you start a treatment and it doesn't sit well with you don't keep persisting with it. Best wishes x
Thank you. I had prostap injection but it made me feel so crap, then tried endometrial ablation which failed so they didn’t do the procedure- last option was hysterectomy retaining ovaries. I’m on HRT but have pain in/around horizontal incision and in pelvis- awaiting diagnostic laparoscopy but today they’ve offered be hormone treatment( progestin? Is that progesterone which I can’t tolerate)and venous vein treatment, whereas I think pain is adhesions and Endo. I am exhausted , chronic insomniac and brain fog and cognitive / memory issues and 😟 anxiety. Oh to be a man! Xx
I was always told you had to take progesterone after uterus removed if you had history of Endo.,seems to be different advice from different consultants?! Xx
you really do get different advice from everyone, it can be so frustrating working out what advice to follow. I guess that's one of the massive issues with these sorts of problems is that what works for one person will be awful for someone else.
I guess you just got to take all advice with a pinch of salt, go with your gut and hope for the best. Sounds insane but I think that's the best option.
I had 2 courses of it sadly and can empathise. 1st time was a 6 month course and second one was a 9 month course. On the second time my GP stopped it and refused to continue with the last injection as he'd seen me with every side effect of decapeptyl including swollen legs and ankles. I lost my job because of it and still feel crap now. No energy and always tired. Pain is worse too now I'm on ponstan. I wish I'd never done decapeptyl tbh. I was prescribed livial tablets HRT with it but what they did I'll never know. I only know now that at 44 and looking at menopause I'll be doing it without any HRT. Even my GP can't understand why no one will do a laparscopy and just keep prescribing injection HRT and the mini pill.
Hi, thank you so much for the response. I'm so sorry you can relate and for what your going through. Its so horrifying to me how it seems to be something that alot people including doctors know causes serious long term side effects yet they seem to give it to people so flippantly. Can I ask how long ago you had your last course of it ? I wonder if they've started fazing deceptyl out. I've seen people saying that they are having hormone treatment but not that many people saying this one.
I had the same HRT as you and I'm the same I don't really know what they did. Although I do wonder if they are effective with a 'normal' menopause but the extreme swing from normal hormone levels to suddenly shut off is just too much for it to counteract.
I've yet to speak to someone that was glad they had decapeptyl, I'd be interested to. Everyone I've heard has either said they had negative effects or they got no help from it.
I only started decapeptyl injections 2nd time in June last year and was due to be finished by Christmas last. My GP saw me a week after the 2nd injection last summer and said no no more this is not ok you're not you. Even he could see it. I'm struggling ever since to lose the weight. My periods only started back in February this year and they're worse than ever. Sending you lots of love and positive vibes
That's so interesting that you had it so relatively recently. Good to hear that your GP was checking up on you. It sounds like they did the right thing stopping it when they did. Im so sorry that your periods are worse than ever. Hopefully they will level out, its a hell of a hormone shake up. It took me a good 6 months before mine started going back to 'normal' after my treatment. so im really crossing my fingers for you.
I really appreciate it and im sending them back to you too x
Much appreciated. Ireland is a very backward country when it comes to women's health. All my 'care' and treatment is private as there's a ridiculous waiting list for nonprivate like 14yrs. Gynaecology in Ireland really only cares about pregnancy.
Yeah no idea why lap is such an alien thing to gynaecology in Ireland. My current gynaecologist is saying he'll do endometrial ablation if my periods remain too heavy, I just want my life back and the pain to stop. I've already decided no ablation and I'm sick of being told go get the coil.
That sucks so much ! im so sorry. Its so wrong that its such a postcode thing. I totally believe Ireland is even further behind that England with gynocology which just seems unthinkable. Its so not right.
I completely get wanting your life back. Being in pain can be so exhausting. It almost feels like a loss too. I'm coming up on 30 soon and was 18 when this all started. basically been the whole of my 20s. It really does just feel so unfair and it honestly breaks my heart just how many people are going through similar. I hope you find something that relieves your pain x
Yeah we're so ridiculous here that we have to travel to UK under the cross border initiative to get treatment as there's only 4 specialist gynaecologist in endometriosis and they're in Dublin. There's 150,000 women suffering with endometriosis in Ireland. I'm 44 and only diagnosed since 2018. Like you I feel like I've lost my life
Hello Flossie, I’m so sorry this has happened and everything you have been through. It really is awful to just be left to cope with the ongoing symptoms. I’m a long term endometriosis patient, I ended ip having a total hysterectomy 6 weeks ago because of it. I also have fibromyalgia and I wonder if CFS is in there too. I had a couple of Zoladex courses since initial endometriosis diagnosis, the last course was the worst: consultant prescribed tibolone alongside this - I don’t know which drug was responsible but I suddenly ended up with a blood pressure reading of 200 and was on the verge of being admitted to hospital. Consultant hastily stopped the tibolone. I started on blood pressure medication at this point. I’m still not sure if it was the zoladex but my bp did settle after i finished the course.
Regarding the fibromyalgia, there are a couple of really nice facebook support groups I joined if I could post the links here?
I just wanted to reach out and wish you all the very best Flossie, I am thinking of you, take good care XXXX
Hi Carrie. Thanks so much for your kind words and for responding. I really hope the surgery went alright and the recovery has been ok. and that you get some relief from the endo because of it.
Can I ask when the Fibromyalgia started ?? was it after your treatment?
Thats so scary about the blood pressure reading. Good job your consultant was keeping an eye on you. I don't think I really appreciated just how much of your body and its functions hormones effect before messing with them so much. But I wouldn't be surprised if the Zoladex was what effected you BP. Im so glad to hear its settled now.
Hello Flossie so sorry for the late reply, tech gremlins!
No problem, here are the Facebook details of the fibromyalgia support groups:
Fibromyalgia and Product Support by M.C.C (linked with a company called Motorbikers Cosmetic Company who have created really great products to help with chronic pain, the lady who owns the company has fibromyalgia and her partner created the products to help her; I’ve used the products a lot, they really help ❤️)
UK Fibromyalgia Private Group
I think I maybe had fibromyalgia going on for a long time, even before the endometriosis was diagnosed - it really seemed to get worse the last few years I think with the ongoing endometriosis plus a few stressful life things and bereavements; I’m going to ask if I can be referred to a fibromyalgia doctor/neurologist to see if this can help too.
Thanks very much Flossie, getting better each week since the operation 🥰 I’m due back at work in a few weeks but we’ll see how it goes.
But fingers crossed these Facebook support groups can help. Take good care and wishing you all the best! ❤️ XXXX
Yea……..I really started thinking this site was an HRT commercial. Honestly I just think not feeding these lesions etc is best……. after ALL IVE TRIED for 40 years. I’ve blamed it on everything and everyone. I was always looked at by friends, relatives and especially……yes……drs. ……….as hum …….a hypochondriac complainer?
I’ve already gone on and on about how I wish I hadn’t taken Estradiol . Then women on here are saying yes .Take estradiol (part of HRT???). And saying you need to relook at this . “Dr so and so is wonderful and she suggests HRT “. I kept being told I was wrong about estradiol. ……and I really started researching . Well ok. That’s good for some. But not me. Estradiol for me ……made me feel GREAT. But it made endometriosis grow quickly.
This has made me a BITCH. I have gone to COUNTLESS doctors and specialists. Always misdiagnosed. I’ve shared here that after two operations and all female parts removed and lesions everywhere …….(yes two gynecologists believed me and after many tests and appts …….I had two surgeries).
Losing the ovaries REALLY screwed me up. But they weren’t working so they were pulled out along with everything else.
I finally found a plant synthetic estrogen ……….estradiol. IT MADE IT WORSE than ever .
My whole body is always in pain . I’ve stopped all estrogen .
My pain has really subsided but I still have pain in my back areas .
The worst also……..is my depression and 😩 hopelessness. I’m almost 65 and I’m seeing that everyone else on the site is in their twenties .
Please please don’t live a life like me . Dont FEED the endometriosis like I kept doing .
I’m not a dr but I know my body. Estradiol is a wonderful short term effect ! But not a long one.
I’m still alive ………after 25 years ago loved ones were either saying goodbye to me as I went into surgery and had a huge blood filled “tumor “ ………..or ignored me . It’s so weird . It was benign ……and taken out.
I could go on and on………but endometriosis is something that no one has wanted me to share about . The subject gets changed . Just last night as I spoke to my mom and aunt ……they had blank looks as I tried to mention it and dinner was ordered and for the millionth time…….subject was changed .
I guess it’s just too gross to describe. I feel bad for my partner who has had to endure my hopelessness. I wanted too long for my surgeries.
I’m back to what I’ve been reading from so many here:
It’s either pain pills , endure pain, or surgery.
To end this text on the most “positive note”of my text………
I take an anti anxiety medication. Anti depressants. Gabapentin. All of this helps. Back exercises and all exercises.
I am feeling better now than I have in years. This is just me. The sad part is I guess it’s different for everyone . It makes it hard to give advice . I’ve done what many drs have asked…….hum. Shitty advice.
Please take care . Try and not accidentally get on advertisements. It’s misleading .
I forgot a very important one……..I’m plant based . That has really helped . I love sugar but have had to “try” and cut it out ! I feel like 90 percent is dormant (oh then someone here said it doesn’t really lie dormant) which I didn’t respond to. Well what is it called then when you’re really on a good roll and you aren’t in 10/10 pain????
Flossie96 I’m so sorry to read about your story and experience with Decapeptyl. Just last Thursday I was asked during my gynae appointment at hospital to start on 3m Decapeptyl injections and HRT to what I need to reply tomorrow and will refuse having read this whole thread (!) I too was told I wouldn’t have secondary effects! I’m nearly 50 and have suspected endometriosis since my very first period, although it wasn’t properly diagnosed until my first laparoscopy 3 years ago, which resulted in the removal of my right ovary and Fallopian tube.
Prior to this, however, in 2014 I had a flare up (?) or (as diagnosed) IBS and the onset of M.E. which left me bed bound for a while and after which I never fully recovered so later diagnosed with CFS and fibromyalgia. I had been recommended to have a Mirena coil fitted (and did) months before this episode and I have had my suspicions that, contrary to what doctors say about the benefits of Mirena for endo, in my personal case it has contributed to a decline in health and worsening of Endo symptoms. I do think too that Endo, fibromyalgia and CFS are often comorbid.
Thank you for sharing this post which has really helped me to make up my mind about not having this treatment. I’m very grateful and hope you manage your condition the best you can as you know you’re not alone and there’s support and sisterly love on this forum. Take care and thanks again x
I cant tell you how moved I am by your reply. I always said if I can save anyone from the possibility of this happening to them then I would feel a little better. It really do.
I don't want to put anyone off completely, Endo is utterly horrific and if you can find relief from it then that's amazing, but it is totally unfair that it is seemingly given to people the same way the pill is, even that has massive side effects that no one talks about. I don't think ill ever understand why hormones aren't taken seriously.
I am so sorry for everything you have been through and are going through.
and I am unbelievably angry that women arent being told about the side effects and potential long term damages of this ! I had hoped that things had changed but that its happened to you so recently is totally unacceptable.
I have also been diagnosed with IBS although Im sure the issue is actually damage to my bowel caused by my endometriosis. I dont think there is the research or appetite to see if these conditions (IBS, CFS, fibro) are linked or what effects they have on each other, but i agree I definetly think theyre often comorbid.
And i completely get why you have those suspicions about the Mirena. The thing is they don't know exactly what causes Endo, they just know that hormones affects its growth and that some women that have had pregnancies' or gone through the menopause have been cleared of it, so they artificially mimic it or they change your natural hormones. Just because something works for someone doesn't mean it will for everyone and like you say sometimes it can actually make the situation worse.
Thank you again for the reply and I hope the prospect of not going down this treatment road isnt to disheartening. All id say is don't let them convince you that its this treatment or nothing. I really wish you all the best. and Id be interested to hear what they say when you tell them that you are not going to have the treatment, if your happy with sharing it of course.
Hi Flossie, just wanted to give you a quick update. Managed to get a phone consultation with the Endo Lead specialist when I refused the Decapeptyl injection and been on desogestrel, the progesterone only mini-pill, for 3 weeks now. Pain is more manageable and I’m mostly on 1 x naproxen + 2 x paracetamol/day. Hope you’re ok and thanks again for your help x
Hey ! so good to hear from you again. Im so glad your pain is more manageable and they have found another course of treatment. Begs the question why they didnt try that first before suggesting Decapetyl but im just so happy to hear that things are becoming more manageable. I really hope it continues to go that way X
I'm sorry to hear about your experience however I had the same injection and I've stopped it because the side effects have been horrific! Stretch marks in places I shouldn't have, I got swollen, and pain in my joints which are still a massive problem. This injection was alongside hrt patches.
I'm now on hrt patches and the pill, no massive change I just need to manage it better but how can you? I'm literally trying everything!
So my advice to anyone is it's at your own risk I wish I hadn't done it for 4 months .
hi, thank you for the reply. I'm so sorry to hear about the awful time youve had !
Seriously well done for standing your ground and stopping the treatment when you did. There's this weird thing with hormone treatments where doctors will just tell you to stick with it and the side effects will lessen, even if you've been on it for ages. Utterly bizarre. I think if your body doesn't tolerate after 2 months it that's kind of it, it wont get better the longer you take it.
Its an absolute nightmare to find a way of managing. You're certainly not on your own with feeling like your at a loss. If it helps I've had a bit of success in the last couple of months with acupuncture and seeing an osteopath. Still have an awful time while im on my period (my bodies also decided in the last 6 months to massively drop my iron count every period. so basically cant stand without fainting) but its feeling much more manageable around it. So maybe look into something a bit more holistic and more targeted at pain management than managing your endo if that makes sense.
Anyway I really hope that you find a way of managing your pain and that the pain in your joints and residual effects from the injection wear off in time X
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