Endometriosis UK
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Hormone therapy decapeptyl and tibolone

So I have started my hormone therapy today. I am on tibolone and also decapeptyl 3mg injections once a month. I am on this for 6 months course. I have previously been on hormone therapy for 6 months but was on tibolone and prostrap SR which I reacted very badly to. Can anyone please give me their experience of the side effects ? And any help methods to prevent bone density. This is my worst fear. .I know vitamin D, potassium, exercise etc help. To put in context , I have grade 3 endo, bowel stuck to womb, one ovary due to surgery to remove other, 27 years old. Thank you !

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I am only one week ahead of you so no massive help. My symptoms are definitely flaring up, but I am trying to see that as a positive (ie it’s working) more than anything else.

I had sore breasts earlier in the week- really tender and a fair few sharp stabbing pains. These have died down. I take a pretty regular diet of painkillers so haven’t had any headaches or anything like that of note.

I am also taking a menopause multivitamin which I thought couldn’t do any harm! Best of luck.... can keep you posted on any new symptoms. All in all, so far so good, I’d say (though I’d like the flare up to die down now!)

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thank you, that is great to know. What vitamin are you taking? I will ensure to purchase if this helps with the process. All the best.

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I’m 3 months in now of the same.

I found the first month the toughest, as far as my endo was concerned I was at rock bottom. I’d forgotten what it felt like to wake up and not be in agony, and had lost all sense of a normal cycle. It was popping up whenever the wind changed direction with all its symptoms and side effects.

I think my condition is the same as yours, mri showed both my tubes are blocked and at least one ovary is severely affected and there is definite bowel involvement. I’m 28, have had my next app brought forward 6 weeks since results of the scan so I’m hoping that means things are moving forward now.

Side effect wise: first month I didn’t really notice a huge change, irregular bleeding, cramping. I had really sore boobs, like I would’ve dared anyone to even so much as look at them and I could have knocked them out. I noticed my hair has thinned somewhat, though I was lucky in that it’s super long and was thick, so I only I can notice it’s like that. And the night sweats I would say were persistent for around 6 weeks maybe 3-4 nights a week. Month 3: I’m def noticing I’m feeling more like my old, non diseased ridden self. More energy, very random days of pain. Occasional hot flushes, but I can deal with that. More recently I’ve noticed I feel a bit hormonal, and have to have a bit of a word with myself when I notice I’m snappy.

The things we have to do!! X

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Thank you Milly for sharing your own experience with me. I wake up everyday in pain and feel sick, sometimes can't eat etc. I had one ovary out, this was not functioning and twisted into my organs etc. My other is becoming this way, so this is to try and basically save it for as long as possible! It is hard right? I hope that your app goes as well as can ! That sounds progressive and helpful ! I am glad it is going as well as can be for you. It is very true, no one knows what we go through unless they do themselves. This disease needs to have more awareness and better treatment approaches ! x all my best

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I’d just like to know what the state of play is now, wondering whether conceiving at all is going to be possible. I feel like I could probably be in a similar position and it’s just hard. I have so many close friends that are having or have had babies now, desperately trying to be happy for them while having more in common with a 50+ year old woman 😂

With all the joys of bowel involvement most of my work colleagues are aware of what’s going on, I find the easiest way to deal with this is to be open and honest about it all. Otherwise I’d look like someone carrying a potentially infectious disease 🤦🏻‍♀️ and working in healthcare people get a bit twitchy about that! X

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this is how I feel, have you been informed of anything? My specialists are awful, nearly booked me into the wrong operation, got my notes mixed and get confused and unsure of what medications I been on prior. So disorganised it is unreal. I have had to educate myself and know what I need and want. As they are if I am honest useless. I have tried going private but unable as they won't do it for chronic illnesses. I was also on urgent list for operation due to severity of my ovary and bowel and waited a whole year ! They don't even talk through anything such as symptoms or the long term effects e.g. fertility. When I asked about fertility, they said they wouldn't talk this through until I wanted to conceive.. by this point my ovaries could not be functioning. Also, they won't freeze your eggs, even if your ovaries are nearly caput you have to do this privately which costs thousands a YEAR! It is shocking. I don't know how good your specialists are. You can most likely struggle to conceive, but this will be much more difficult, also change of polycystic ovaries that will affect conception and increase chance of miscarriage if this is the case. Bless you that is funny but also not ! :) Yes you definitely need the support, it is so important for understanding as it is so difficult if you deal with alone. Yes I bet they do haha. :) x

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I have to say, I had more problems getting the ball rolling from the GP side. I ended up having to re-register at a different practice and it was at that point offloading all the symptoms I’d experienced I’ve got to this point now, despite symptoms for over 7 years. The main specialist at my hospital was just amazing, he is an endo King as far as I can tell, and the summary letter from the first consultation was enough to know I was listened to. I had the advantage (if you can call it one) in that I could say I’d been trying to conceive for over 2 years, and he said straight out and explained that it wouldn’t be possible given the state of my insides, and that until it had been removed, IVF wouldn’t be an option to discuss but that he would do everything to get me to that point with as much working and intact as possible. I don’t hold huge hope that it will be the case. I suspect I’m going to have a lot removed. But no one can confirm it, and what is really frustrating is at no point has anyone said ‘we’ll be operating on this date’ but I’m taking my next app as being a positive one towards something being done this side of summer.

I’m in a fortunate position that if that isn’t the case, my parents are in a position to fund a private op, with the same consultant. But I think in my mind, I almost want to keep it in hand as I’m sure this lap and removal will be the first of many, and I’d rather save it for when I’m beyond the point of desperation with it all.

I’ve found a lot over the past few years it’s best to laugh about it, even if on the inside you’re crying. This is the worst case scenario playing out as real life. Moaning about it won’t make it better, so I laugh about all the ridiculous things I end up doing/ trying to help. X

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