Tibolone HRT advice needed ! after a total hysterectomy due to Endometriosis

[7777melg]

Hi , I had a total hysterectomy 7 weeks ago now due to Endometriosis. Previous to this I was on prostap and HRT patches for 18 months. Doctors just dont have time to spend talking there the various HRT treatments they just want you in and out was the same after my operation in hospital. No aftercare advice at all .

I loved the HRT patches but have now been told I can no longer take them due to Endometriosis because they contain estrogen. I having terrible headaches and joint pain on tibolone tablets , tablets do not agree with at all . I trying to see if the effect will go away after another month or so ??

Thanks

[Sunflower1968]

Hi I was given tibolone whilst on prostap and felt terrible on it too. Could you not ask for a lower dose of the patch? It’s so difficult getting the balance right and I agree with all your comments it’s so sad reading just how many women are struggling after a hysterectomy, I’m due to have one in a month due to endo and ando and I’m dreading it!

[7777melg in reply to Sunflower1968]

Hi , Yes I am coming off tibolone today I went to my doctors this morning but couldnt give any advice on anything else I could take . The doctor wasn't a specialist she said I was very disheartened. So I researched the nearest menopause specialist to me which is Leeds. I have booked a private appointment and I will just pay to get the correct advice and 40min consultation . I am only 46 so I want to get things right and have a good quality of life . If you need any advice on hysterectomy I can give you loads. Remember peppermint tea for the gas that they pump into you stomach, loose clothes I couldn't get into any trousers for 5 weeks . I have changed my diet to gluten and dairy free which has helped too . When is your operation ?

[Sunflower1968]

Hi thank you for your reply. I know how frustrating this all is for us, I’ve been putting off my hysterectomy for months as I’m convinced I have endo in my bowel too. I’ve written to my gp and my gynea as I find if it’s in writing then it’s on my file and then they need to reply. Long winded but it’s a major surgery so we shall see. My op is booked in for November - the thing is I had a procedure in 2014 and almost died due to a significant bleed so I’m nervous - they removed my ovary age I’ve not been the same since but was advised one ovary can work just fine but after research that is not always the case - I look pregnant and feel yuk! I really struggled on prostap i guess we are all different but I felt amazing on hrt but it has caused my Endometriosis and adenomyosis to flair up - so im trying to find out the whole picture? Unless you pay to speak to somebody privately then I feel it’s a one size fits all but we are all so different. I know we are all

So so lucky to have the nhs but I’m frustrated with how long this is all taking and like you this is effecting my quality of life! I hope your appointment goes really well and please keep me posted x

[dawntildusk]

Hi

I had total hysterectomy with removal of both tubes, one ovary, and excision of stage 4 endo at the age of 37. They were supposed to be removing both ovaries but during surgery decided one was worth saving. Unfortunately its not a one size fits all but thankfully so far i have not gone into menopause. I am aware that it is likely to fail, possibly within 5 years, but it should be better as it will be gradual and not an abrupt change on my body. I also had adenomyosis and the op has given me a quality of life again. It is major surgery but i am glad they insisted when they did. x