Hi everyone,I'm new here and looking to see if anyone else is having the same problem. I'm currently on Prostap injection and Hrt Tibolone. I'm extremely low in mood, I have no energy, I'm really tired where I could fall asleep at my desk at work but struggling to sleep at night. I just really can't cope with the way I feel. It's like everyday is a struggle and there's no end in sight.
Prostap and Tibelone : Hi everyone,I'm new... - Endometriosis UK
Prostap and Tibelone
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Victoria101986
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I’m on Decapeptyl which is similar and tibolone was my add back HRT to begin with. I felt dreadful, really low and just like I was a stranger to myself. My hrt was changed to the estrogen patches and progesterone tablets and the difference was huge. I felt like me again and the dark clouds lifted. Maybe ask to have it adjusted or changed as it can take a bit of time to find the right combo for you but it’s defo worth asking. Endo is hard enough as it is so if these things can be changed it’s worth asking. Hope this helps xx
Also wanted to add that once my HRT was right for me I started sleeping a lot better too, I completely empathise with everything in your post, and honestly it can get better xx
Awww thanks so much, I've spoken to the Dr today and they just said up my depression tablets 😔 I think I need to speak to the hospital consultant really as they will know better, it's such a horrible feeling being so low especially when I've got work, a house to run, a great partner oh and not forgetting the two hormonal teenage girls I have 🤣 it's just taking its toll abit on me at the min, wearing the fake smile around people but resorting to my safe haven (my bedroom) as soon as I can, thanks again I'm definitely going to speak to them about this xxx
It’s really is a horrible feeling, everything just feels too much sometimes doesn’t it. I’m signed off work just now and finding it hard but I know I need to rest a bit. I’ve got a teenage girl too who struggles with her own mental health bless her. Sometimes we just have so much to juggle, all with living with a chronic condition that’s both painful and exhausting in equal measure. This is a great place to vent though and it’s a wee comfort to know that you’re not alone.And vent away any time, I’m always happy to listen (and help if I can) xx
So kind of you 😊 yes you've hit the nail on the head, please make sure you do rest whilst you can, your off for a reason just remember to look after yourself aswell, I know the boring part kicks in, I was in hospital 8 nights last month that was horrendous being away from home, wheres this magic pill for this horrible endometriosis 😩 we deserve medals lol xxx
We really do xx
it’s poor practice and lack of understanding by medics to use antidepressants to manage hormonal based depression. (NICE have changed their directives here and HRT is regarded as the first line of treatment, not antidepressants.) They have different roots. Have a check out of Dr Louise Newson’s website and there are lots of resources for you ( and your GP!!!) on hormonal depression and it’s treatment. You don’t need to feel as you do or suffer this way . Hope it helps x
Thank you so much for this, I will definitely look into this xxx
You’re welcome. I found it helpful info and even where anti depressants are used appropriately, there’s evidence to show that poor levels of hormones can play their part in “treatment resistance to antidepressants “. Sometimes both are needed to get the antidepressants to do their job. It’s not a one stop shop that some medics make it out to be.
It really seems like nobody knows what they are doing with any of this, it's just a trial and error type of thing, it's frustrating when you are the one stuck in it and struggling xxx
totally ! Once I got that most GP’s haven’t taken the module on women’s health ( duhhhh ?????) and that a few are disinterested or many frankly overwhelmed to stay up to date I felt better about ensuring they had the right info. It’s really not ideal but in the end I’ve got enough treatments cobbled together that I can have a better life. If that is what it takes that’s worth a few bruised ego’s along the way.
When it comes to you as a person suffering and they don't understand they can't help, I'm definitely going to need to speak to the consultant and demand more information because to be honest I didn't get told much apart from it will help me for 6 months and I can go home from an 8 day stay in hospital, I'm just fed up of fighting tooth and nail with everything in life right now, kids, work, the house, my health, it all just feels too much xxx
Always a challenging to accept however well intended ones ability or options are inadequate to someone’s needs. However here you are the important person and must be the priority. Leaving you in this pain and emotional place is unacceptable. Have at times been saved by the Samaritans in the small hours when the options seemed few and pretty desperate. However awful this moment is hold fast- it will, even if it’s a slow tiny step forward, change - and you’re not alone.
Honestly I've reached out because I literally hate the person I am right now, it's really taking its toll, it's got me that bad I literally just want to stay in bed, hide away from the world, so many bad things keep happening in my life that I just mentally cannot deal with and I'm at that stage where I feel like what is the point, I've had depression but this is beyond that feeling, I'm definitely going to speak to the consultant and try my best to get some answers or help, thankyou for your messages, they all mean alot xxx
hi I’m on the same and can’t sleep at night either find it worse a few weeks after the injection. I’m tired all the time too. I’m trying to ride it out as waiting on a hysterectomy. Don’t have much get up and go in me either x
Hi, How horrible is this waiting game, like we have to put up with all this for all these months for them then to decide we'll have another procedure anyway, I had my first one Feb 4th just the monthly one then had the 3 monthly one couple of weeks ago, each day feels like I get worse it's so draining physically and mentally isn't it, how long have you got left on yours xxx
I’m in the 3 monthly ones (had 2 so far) I’ve found them worse then when I was previously on the monthly ones. Wanted to be on the monthly but it was a pain getting an apt at the gps for the injection and my hospital is a good hour away for them to give it. I’m about 3 weeks in on this one and sleeping is the worse. Should have surgery this year hopefully. X
Awww finger's crossed you do, Im the same I went for the 3 month one due to the hospital messing up my appointments and the time it takes to get to hospital and as for parking that's a pain in itself, I was told I wouldn't feel any different but I definitely do, alot different from the first monthly one xxx
Hi I've been on prostap since November. I lasted on tibolone 2.5 weeks but felt so low and stomach pains all returned so I stopped it. I'm now going to try gel and progesterone tabs. I also have a teenage daughter!!!!! I was disappointed as I really wanted to work. Good luck x
Hi, this is my 6/7th week and it seems to be getting worse, it's such a drain mentally its awful, please do let us know if the other tabs and gel work, I don't want to feel like this the full 6 months, hopefully you have a positive experience 🤞 xxx
Hi
I did Gonapeptyl and Tibolone, I felt exactly the same as you. After the 3rd month it did settle down and the HRT helped a bit, but all the symptoms were still there. Just less painful. I decided to come off the hormonal stuff due to the impact on my mental health and the worries I had over long term health impacts on my bones, what's the point in swapping one painful condition for another? Honestly in my opinion they need to come up with some better treatment rather than all this hormonal stuff, endometriosis has been found to produce its own oestrogen so really starving the body of it doesn't guarantee anything.
Sending lots of hugs!
Hi, oh really? How did you feel after stopping the hrt? I'm scared if I do I'll feel even worse 😩 we just can't win can we, I felt I was alone in all this, this proves wrong, I feel for everyone going through this horrendous mess, your right surely they know how it all works by now and this isn't the right treatment xxx
I only stopped the HRT when I was around 4 months in to stopping the injections, had my last injection in October 2022 and last load of HRT around end of December beginning of Jan. It took AGES to get myself back to "normal" if I'm honest. I just got my period again last week! I tried to stop the HRT when I refused the injection but the symptoms were horrendous so I continued. The HRT wasn't the thing I was concerned with though, it was more the hormone stopping injections. There's a lot of research with some serious negative long term side effects, and I queried how this would be an effective way of dealing with the endo when typically it's not advisable to use it for more than 12 months. My gynae insisted he could use it with me for longer than that, which was a red flag to me as the medicine information said otherwise.
Honestly, I've felt shocking since stopping them! Had the last one in October and the symptoms started to kick up a notch by the beginning of December. Period pain was getting really bad (no period, just the pain of one) and I could feel my body trying to "restart" if that makes sense? Like my ovaries hurt, and the thigh pain was ridiculous. I feel a smidge better now my cycle has returned and I've had a period, like I needed a clear out haha. Honestly being on the menopause just wasn't for me, it did reduce my pain but I still had pain. Plus all the extra symptoms of menopause, so for me I was just swapping one set of dehabilitating symptoms for another. I absolutely wouldn't tell anyone else what to do, it's very personal. But that was my experience 🙂 xxx
I'm in this situation now where I'm feeling like is this for me, I don't think it is, the pain is horrendous when not having it but I'd rather they just take everything away and I feel back to me again, this system of Prostap and hrt doesn't seem to be the right one for most of us here, I want out and just don't feel like me xxx
You know what is best for you love, and no doctor or nurse should be making you feel like you have to continue if you don't want to. If you've gone past the 3rd injection and you still don't feel this is helping you should absolutely speak to them. Hormones are not best for everyone, they need to stop pushing them on us as a magic cure when often we don't get very much from them. End of the day this is your body, your choice. Don't be pushed into doing anything you don't want to do xxx
I'm wanting to stop the Prostap and hrt but don't know the side effects 😩 my hospital is rubbish so literally can't speak to anyone xxx
The side effects of stopping shouldn't be too bad. For me I was a tad moody and had some mood swings! It took a few months to get back to myself, around 6. But everyone is different so it can be hard to judge! Mainly i just found myself having the pain slowly increase again, and hormones come back to normal. You can stay on the HRT while you first come off the prostap, then you don't have too bad symptoms. I stopped my HRT after 3 months, then 3 months after that I was back to normal with my periods and stuff. Xxx
Awww thanks for sharing this, I'm at my witts end with it all, I'm going to come off the Prostap and slowly come off the hrt, fingers crossed I'm ok, fed up of the struggles everyday, here's hoping it works out better than what I'm going through now xxx
No problem at all 
Fingers are crossed for you! The pain with my period and ovulation coming back was atrocious, but tbh it is nice feeling like myself again. Pain I can handle lol but the depression and all the other menopause symptoms were just ridiculous. Sending hugs! Xxx
It's got to be better than this feeling, literally dragging my self about just to get in the bath and get ready for work, mentally and physically exhausting, due the next Prostap in a few weeks so when I'm due it's a no from me, tha is again 😘 xxx
I had a full hysterectomy Nov 2021, cervix everything. Left the Hosp thinking my life was gonna be back on track, little did I know that was not the case, the hot flushes, insomnia, low mood and still pain was horrendous, I was taking tibilone thinking that was full hrt, went for my post op check 10 months later and my consultant went mad, tibilone he said is prescribed for me to help with the hormones to protect my bones, not enough to help my mood etc, I was put on hrt patches with both oestrogen and progesterone as they are prescribed together to try and stop endo coming back. It’s been nearly 7 months and I’m still struggling. I now have widespread pain all over my body, I’m really struggling with my mood and sleep pattern, my advice would be any concerns you have, go direct to your consultant as your gp is not qualified to know how to deal with your symptoms, not that it’s their fault obviously it’s just a fact. I hope you get sorted soon because just existing like I am at the moment is horrendous x
Awww wow I'm so sorry you've gone through all that and still struggling now, I've said previously wheres the magic pill for this, with so many of us suffering so bad 😔 it's not good us having to go through all this, I've been told I'll be on this for 6 months then I don't know what's going to happen then xxx
hi Victoria I am On prostap also not on tiblone (i was wouldn't tolerate it) but I feel exactly how you have described on the postap
I am struggling to function because I am so tired
I was told the tiblone would help with the tiredness and low mood etc
You are not alone x
Awww no way, did they say why you are not on Tibolone? I really don't know what is causing this either one of them could be doing it, I'm absolutely exhausted after working 4hrs a day, it's not normal that, my mood is really bad, I don't want to get up each day as I just want to hide away and not have to deal with anybody or anything, I'm just tired with everything xxx
I am so sorry you feel this way I feel exactly the same
I can’t have tiblone because I have epilepsy have to be careful with HRT
I tried a low-dose. They said I would only feel positive benefits, but I got all of the side effects such as blurred vision. I am partially sighted to begin with this just made my vision so much worse.
I am honestly so exhausted I have a three-year-old and a five-year-old they are draining every bit of energy I have (I am so lucky to have them, but I’m still so tired)
because I’m not the easiest of patients I find they just keep referring me to other people so they do not have to deal with me
which just leaves me waiting and suffering for longer. It is very frustrating.
feel free to send me a message if you ever want to chat xxx
How awful that you don't get the right treatment because of difficulties out of your control, I really do not know why they don't have the correct treatment readily available for all this, it's disgusting, I feel you with having two demanding children, both mine are 11 & 13 but my 11 yr old has suspected ADHD, dyslexia and austism, I'm currently trying to get answers but the waiting list is huge, school aren't helping much and my 13 yr old is being bullied at school and online, everything is piling up on my shoulders and it's all too much. I really do hope you get the right treatment for you soon 🤗 big hugs xxx
i can imagine the stress you are under waiting for answers
I find my self shouting more than I should being more irritable, angry and having no patience and as a result horrendous mum guilt sending hugs! Xxxx
I'm stuck in a situation where I'm feeling so low, my kids situations on top of that, keep getting pulled out of work mid shift or even before I start, then I have to go pick the kids up from school,.30 minute drive from work, wasting holidays to leave work, on top of this hormone rubbish it's getting all too much, I'd love nothing more than stay in bed 24/7 until it's all over, my coping techniques ermmm I don't have any right now, I sit up boil from the inside, I'm ready to blow soon tho I can feel it, big hugs to you, we will eventually get there, just ride this massive storm and hopefully we're all due so good luck then 🤞😊 xxx
Hi Victoria. I've been in prostap and tibolone for 7 months now and I feel exactly the same. I feel like I'm losing my mind some days. Brain fog, fatigue, really low mood, aching muscles and the joints in my hands and wrists are really painful. I was on prostap a couple of years ago with a different HRT as I had a coil at the time and I had no problems at all. I was going back to my consultant to talk about it when I got a call to say my total hysterectomy can happen on the 25th march. I am so thankful but very worried about getting my HRT right post op as this is horrendous right now! Good luck sorting it... go back and ask for a review xx
Awww bless you Louise, it's not nice hearing other people feel like this, its awful what we have to go through before they will do the inevitable, definitely speak before hand about all this and hopefully they listen and you are given the correct hrt to help you through, this really isn't working this Prostap and Tibelone for me, I mean physically it's helping but I literally don't want to live like this, anything and everything is really making me angry, upset, frustrated, I can't remember things, I'm losing myself and it's really not nice, 11 days and counting for you, I wish you well and really hope you have a speedy recovery, please keep in touch and let me know how you are, big hugs 🤗 xxx
Hi Victoria,
I am also on the same meds as you plus the SNRI -Duloxetine. This was originally prescribed for ongoing pelvic pain prior to finally getting a gyny appointment (!) but has also helped with anxiety/low mood. Only thing I would say with this kind of medication is it's really hard to get off them once on. I tried weaning myself off once I started with prostap and had awful side effects.
Hi, do you mean the Tibelone it's hard to get off? I've had several anti depressants over the years and non ever work, I'm struggling to understand why? Could it all be hormone related and now I'm having hormones and some taken away it's all just gone abit crazy xxx
I haven't come off Tibelone yet no - I mean the anti-depressant. It is a bit of minefield isn't it.
Bottom line is not enough research has been conducted into women's gynaecological health. We need more women at the top of the decision making chain to enable this to happen.
Meanwhile we are all basically having to adopt trial and error approach; slamming our already challenged bodies with all kinds of stuff that may or may not work. Sorry to go off on a rant... just feel for you and so many others who have to put up with this crap. My situation is is steady at moment but have been told I can only have until end of the year on prostap and then god only knows!!
Ohhhh right, yes I totally agree, try this, try that, if it doesn't work come back in 8 weeks, then to add to all that the endo kicks in and you then have a trial of Prostap and hrt, after 6 months we'll have a catch up, for what 🤷 to say the treatment worked but it'll come back so we'll see you then when that happens, so frustrating, rant away, it's helped me hearing this isn't just me and I'm not alone, not that I wish it upon anyone, just that I'm being treated as a number not getting anywhere and with no one willing to say what the actual outcome will be and no one has explained anything what will happen during this treatment xxx
Hi yes I tried the oestrogel and that made me feel suicidal so I think out of the two the tibolone was better in hindsight!!!!! Now I'm just on prostap. Review appt 10th may won't have another in injection. Feel sad as all pain gone but really effects mental health
Hi Ange, How frustrating is it that we find something that helps the pain, shrinks the endometriosis but has such awful side affects, the mental health side of it is so harsh, if I didn't have support of my partner I don't know how I would get through this, surely the professionals know by now how bad it is, it's so disheartening hearing other people go through it, I really do feel for you, I really hope you get some answers, take care 😊 xxx
I would suggest to have your iron levels looked at,I was the same before having the prostap injection and because of my heavy periods I was iron deficient, that could be a cause for your symptoms?
The prostap actually gave me insomnia hence why I started on tibolone.
Have had the 6 months treatment now and still suffer and waiting for a follow up appointment to have a hysterectomy because of the endometriosis and being completely iron deficient even though I had Intravenous replacement.
It’s hard living with endometriosis and the side effects of it, but hang in there!☺️
The thing is I never have a period, I have the Morena coil to help with the endo aswell but obviously hasn't worked. I can't mentally do another 2/3 months like this, I need out but is it that easy stopping it I'm struggling to get through to anyone at the hospital and my GP doesn't have a clue xxx
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