GNrh & HRT (Tibolone)

[Hannah0091]

Hi guys, looking for a bit of advice here.

So iv been on GNRh for few months now and it’s been working incredibly well for me 🙌 reducing pain by a lot and just giving me relief in general. My last appointment was regarding next steps of what we are going to do health plan wise. So I have been offered to stay on GNRh for a longer period of time but I need to take HRT along side it for bone density. Iv only been on HRT for about 4 days and I feel so terribly down. Very irrationally down. I just want to stay in bed all the time. I’m cancelling most of my appointments or social things and generally not my self. I dread getting out of bed and feel really jumpy all the time. Can anyone shed some light if they have had Similar experience. Also I have no idea what to do next

Thanks.

[Lindle]

Have you had all surgical options and is this the last resort as these injections should only be taken for 6 months and not be repeated?

[Hannah0091 in reply to Lindle]

Hi yes Iv had one surgery but all endo Sean was removed. My professor thinks I have microscopic lesions everywhere. Didn’t know that was a thing until he said. I know it’s supposed to be temporary and he said it’s not forever but it will give me quality of life for now. As without GnRh it I carnt get out of bed 🤦‍♀️

[Lindle in reply to Hannah0091]

Which HRT is it?

[Hannah0091 in reply to Lindle]

Livial

[Lindle in reply to Lindle]

In the UK it is recommended to give low dose HRT soon after starting GnRH agonists but as you have gone from your system being depleted of ovarian hormones to a sudden disruption this might cause all sorts of symptoms. I hope it settles down - hopefully others can share their experiences.

[Hannah0091 in reply to Lindle]

Ahh I see yes it’s been 3 months of being only on GnRh and then going on to livail. I hope so too. Thanks for the advice

[Tallulah182 Moderator in reply to Hannah0091]

Hi Hannah,

I have been taking Livial tibolone for around 4 years since my hysterectomy, I also used it when i was on GnRh injections.

I have had similar experiences when i started taking it. The first 6 months I ended up being prescribed sertraline to help with these feelings but I decided to come back off them as they were making me feel very numb.

Now I take Kalms Lavender tablets and also propanalol as prescribed by the doctor. I get a bit more anxiety now that i did previously.

I do feel like it has settled down a lot now and I do not get as many down days as i did in the start.

Louise

[Greencupcake]

Hi. I’m not sure if this will be much help. I took tibolone (livial) when I was on zoladex injections. Also to protect bone density. I was told that the tibolone stimulates the body to produce the hormones naturally and that it differs from other HRT in that respect. I didn’t have any issues when taking it but everyone is different. Hope you get the answers you need. X

[Drew9]

Hi Hannah. I echo Lindle’s thoughts. I’m currently on zoladex and Livial but realise it must soon come to an end and therefore need to be looking at the long term options. Are you under a BSGE Centre? If you can’t get out of bed without GnRh I’d be desperately looking for a second opinion as all the guidelines point to surgery as the clinically preferable and most lasting solution. I got my referral from my GP 😊

[wanwood]

It should even out quite soon I would think because you’ve added more oestrogen than you’ve been having for months but far less than your body was used to for your entire adult life. I started tibilone at the same time as GNRh and any mood effects were probably from the injection as much as the tibilone, but after a while my mood stabilised quite nicely in any case.

Great to hear the injection is working for you. I was on it plus HRT for 9 months with no ill effects. It did take a couple of months for my periods to return. Don’t worry about the long term just yet! xx

[MMich15]

I had the exact same thing! Gnrh worked incredibly well for me but in order to stay on it I had to take hrt - soon as I did it all went to hell.

I did something without consulting my doctor which was temporarily go on hrt for like 2 weeks and then come off. And then when I started to feel I needed it again (on set of hot flushes and brain fog) went back on it. Then again when those symptoms subsided, went back on. I mean I honestly wouldn’t recommend anyone do this without speaking to your dr first, but it’s the only way I managed to stay on gnrh longer than usual.

Best of luck! I hope you find something that works for you.

[Abbbb]

Hi hannah0091,

I had a very similar reaction to progesterone. It has always given me massive anxiety and depression, so much as that even now after a full hystrecomty including my ovaries, I cant take that part of the HRT.

However it is the estrogen that protects your bones most, so especially as this is not forever, ask if u can have the estrogen HRT without the progesterone.

They believe I also have microscopic endo, which is why i had the full hysterectomy and ovaries removed, and they do like you to be on progesterone as the preventative but if you cant tolerate it....estrogen is the way to go.

Also make sure you are trying gels, the tablets knock a lot of people sideways whereas the gels have a much gentler approach. It took about 3 weeks for me to get level with the gels as it's a slower build up in your system.

But I suggest that would be a easy switch your gP could do without the need of a ridiculous wait to see a consultant.

Good luck xxx

[Hanney]

Hi Hannah,

I started on the injections which helped me for about a week then the pain came back. I had 2 injections and was given Tiberone as well. That made me really unwell so I stopped taking it against the advice of the Specialist. The injections didn't work at all for me so Specialist said there is no more they can do and discharged me from the hospital which my GP doesnt understand. I have now been referred to another hospital but I dont give out much hope that they will be any different and help me. Since coming off the injections I have been bleeding heavily from both front and back ends and pain is still as bad as ever.

It is good the injection is helping you. My experience with HRT has been bad so if you continue to feel unwell then go back to your specialist or stop taking them. I had to because it was lowering my blood pressure and I was feeling on the verge of collapsing at work and out with my children.

The next steps are unknown I think personally as everyone seems to have different experiences. I am seeing a new specialist in January so I am waiting to see what they can do.

Hope you feel better soon..... x

[Rae253]

Hi Hannah, I’m taking Tibolone livial too. I have monthly Prostap injections. I started them last year for 6 months, straight after a lap. They worked great. I had approx a year off then had to go back on the injections and hrt again as I couldn’t cope with the pain.

I have just had my 6th one. This time round, It doesn’t seem to have helped as much as it did before but maybe that’s because I had the long break in between? I have been feeling so up and down mood wise too lately (I’ve also just moved house so that definitely contributed!) and I have pain in my hip/groin area a lot and pain after going to the toilet. I am taking cocodemol daily. When I wasn’t taking the hrt though my hair was greasy, I had spots on my face and felt run down and snappy! Going back on them has helped, but I think it can only help so much. Endo must just play havoc with our emotions and hormones in general! I have started taking vitamin D as requested by my GP. This time of year doesn’t really help as lots of people are stressed and weather is depressing. You definitely need to give the hrt time to work, I would say at least a month. But yes it did improve things for me. Good luck, Rae x