Tibolone HRT for endometriosis control? - Endometriosis UK

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Tibolone HRT for endometriosis control?

HellyLlewelly profile image
10 Replies

Ive just read that this synthetic form of HRT - Tibolone, can be beneficial in treating endometriosis;

womens-health-concern.org/h...

Does anyone have any experiemce with Tibolone?

Im on my second HRT route, 1st patches (wasn't absorbing off them)

Now on Estrogel gel and a 5mg Provera tablet for endometriosis, since the change in January the change of HRT route has not given me the benefits Id hoped for such as more energy

I actually feel worse. Im on the maxumum gel dosage 2 x on inner thighs and 2 on shoulder/inner arms daily since January and no real improvement.

I still have dry vagina, reocurring thrush, exhaustion, mood swings, anxiety, chronic fatigue, bit headachey too.

Endometriosis back pain and niggling in my abdomen.

Im due a review in July so was wondering if any of you have tried Tibolone so I may suggest the switch to it.

Thank you so much!

Helly.

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HellyLlewelly profile image
HellyLlewelly
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10 Replies
clareheraty profile image
clareheraty

Hi, I am on tibolone tablets and had no problems at all. I hardly have the sweats or mood swings (i don't think). don't get me wrong I have some days where I do but they pass. I can't complain really. hope you find something better for you x

HellyLlewelly profile image
HellyLlewelly in reply toclareheraty

Thank you so much the potential swap is giving me a little hope.

Im bed ridden with pain today and over medicated I can hardly see my phone to type!

Thank you.

Helly x

HellyLlewelly profile image
HellyLlewelly in reply toclareheraty

Hey

Do you mind telling me what dose of Tibolone you are on amd your age too, Im waiting on a Call from my GP today.

Im really hoping to do the switch.

Thank you!

Helly x

clareheraty profile image
clareheraty in reply toHellyLlewelly

Hi I am on 2.5mg and I am 40. X

HellyLlewelly profile image
HellyLlewelly in reply toclareheraty

Thank you so much Clair Im also 40!

Im seeing Dr on Monday at 1610pm I put mt case across to him today by telephone, I need a change in the way I feel its now 16 months on not sufficient hrt, transdermal seems to be an issue for me.

Are you also treating endometriosis with your Tibolone?

Thank you

Helly.

X

clareheraty profile image
clareheraty in reply toHellyLlewelly

Let me know how you get on. good luck x

Gwen172 profile image
Gwen172

Hello, I have been on tibolone for a month or so. Feeling ok with it. I was on oestrogen hrt for 20years which is really bad for stage 4 severe endo. All that was doing was making the condition worse. The specialist put me in it for 3 months. Thankfully feeling bit better as the other option is excision. It’s certainly worth a try. Good luck xx

HellyLlewelly profile image
HellyLlewelly in reply toGwen172

Thank you Gwen,

I am hopefull of the potential to swap.

Have you ever had excision?

I had it done and a bowel shave March 2018 and believe my endometriosis is back even though I tested in January at 100 for estrogen which the HRT clinic said was too low for a 40yr old, needs to be 200 upwards!

I was put on the gel and a provera tablet as opposed to combined patch hrt, I need new bloods done to see my levels.

I have chronic pain , chronic fatigue and I know Im in a medication haze yet still in total debilitating pain.

Days like this are so hard.

My mind is going to very dark places.

To think post hysterectomy I thought this wd be the beginning of a new more painfree life for me.

Nope. Not at all. Pain probably worse now.

Thank you so much for your support.

Funny, Ive been that person, that support on here in the hysterectomy site and endometriosis site and its just so sad that I feel like Ive hit a personal rock bottom.

I cant imagine feeling any worse or any more in pain than I do now.

Regards

Helly.

X

Gwen172 profile image
Gwen172 in reply toHellyLlewelly

I hope you are ok. Message me for a chat xx

HellyLlewelly profile image
HellyLlewelly in reply toGwen172

Sent you a wee private mail Gwen

Ta

Helly

X

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