Menopause Matters Forum

Menopause Discussion => All things menopause => Topic started by: Musicandstars on December 11, 2019, 06:45:56 PM

Title: Switching to Tibolone
Post by: Musicandstars on December 11, 2019, 06:45:56 PM
I am 58, post-menopausal and have been taking Estradot 50 with sequential Utrogestan for 8 years with no problems apart from painful breasts, particularly my left breast, which is also swollen. However, I have recently been told by a hospital breast consultant that mammograms and ultrasound show very dense tissue in my left breast (benign at the moment) which does make me more susceptible to breast cancer. She has advised a serious
discussion with my GP about reducing or stopping HRT. It does seem to be the Utrogestan that makes my breasts sore as during the days I have Estradot only, symptoms are fewer. I did some research and found Tibolone which has negligible effects on breast tissue. My doctor has agreed I can give this a try, although I have read that it could make my fibroids grow. Does anyone have any experience of switching HRT to Tibolone? It doesn't seem like a common choice in the UK. I do look forward to not having to bleed any more but am anxious about switching after all this time on my original regime. Thanks for allowing me to share all this!
Title: Re: Switching to Tibolone
Post by: Dotty on December 12, 2019, 07:33:01 AM
Hi why don’t you try taking the Utrogestan on a continual basis. 100mg every day? X

It would also be a good idea to obtain info from a menopause specialist as the risk of breast cancer may not be as high as you have been led to believe. X
Title: Re: Switching to Tibolone
Post by: Wrensong on December 12, 2019, 08:49:44 AM
Hi, Musicandstars  :welcomemm:

I don't have personal experience of Tibolone but have spent a lot of time over the years reading up on breast cancer risk factors.  I'm sorry you have the worry of recently screen-detected increased breast density, which is linked with increased risk of developing breast cancer, as you say.  My understanding is that it also makes interpretation of mammograms more difficult, so that abnormalities may be detected later than in women with breast tissue of average density.  Please understand that I'm not trying to worry you further here, but it's a situation that many of us face & have to make decisions about.

My understanding is that there is still considered to be an increased breast risk with Tibolone, but (from memory) less data than with some other forms of HRT, so the picture is perhaps more uncertain.  From what I remember, Tibolone is associated with increased risk of recurrence in women with a prior history of BC, which doesn't apply to you, I know, but does seem to me an indication of potential for harm to the breasts in general.  You may already have come across this & be happy with it, in which case please ignore me!

There seems to be consensus on minimal exposure to exogenous progesterone being the safest course of action as regards breast risk, so that sequential regimens are favoured over continual prog use.  Part of the mechanism is thought to be that a cycle allows breast cells to slough off as they do in fertile years, reducing the tendency to over-proliferation that can be implicated in development of malignant disease.  So I don't think I would swap to a conti regime in these circs.

Your transdermal oestrogen & sequential Utrogestan regimen seems to be the current "gold standard" recommended for minimising breast risk from HRT, though different studies draw different conclusions about the various forms of progesterone, so you are in a difficult situation. 

Is it imperative that you continue on HRT, or could this be a sensible point to try tapering off to see whether you still need it?

In my experience, breast surgeons are some of the most open-minded clinicians when it comes to HRT use - this surprised me at first, but of course they have good reason to keep up to date with the latest research & are frequently faced with menopausal breast cancer patients, so know the havoc being without HRT can wreak on our lives.  Given your consultant advised you to think very carefully about your HRT use in the light of your mammogram findings, I think you're very wise to do this.  I would urge you to read around as much as you can while you're trying to decide, so that you're as well informed & confident as you can be in whatever you choose to do.  I wonder whether you might find it easier to decide if your breast clinic were open to a consultation where you could ask further questions.  If this feels as though it might be helpful, perhaps you could contact them direct & ask for another appointment or ask your GP to refer you back?

Sorry not to have something more encouraging to say, especially in response to your first post, but having faced a similar dilemma I  know how important it is to make the best choices we can.  I do hope you manage to make sense of the mass of information out there.  It's a very personal decision & only you know everything that is likely to be affected by whatever you choose to do.
 
Title: Re: Switching to Tibolone
Post by: Kathleen on December 12, 2019, 09:09:32 AM
Hello Musicandstars and welcome to the forum.

I thought I would add that my slight but persistent breast tenderness disappeared after two days when I stopped using Utrogestan. I am not on HRT at the moment but was using 2 pumps of Oestrogel daily plus 100mcg of Utrogestan at night and taken vaginally. My tenderness was confined to the nipple area but did worry me and was one of the reasons I decided to take a break from HRT.

I hope you find a solution that works for you and please keep us updated.

Take care.

K.

Title: Re: Switching to Tibolone
Post by: Jacqueline Susan on December 15, 2019, 10:19:19 PM
Hi Musicandstars
I have been on Tibolone for approx 3 years, I've been on others previously. Tibolone really works well for me I feel great on it. I hope it works for you 👍🏼
Title: Re: Switching to Tibolone
Post by: Sammiejane on December 17, 2019, 09:45:49 PM
hi jacqueline susan

do u take any other hrt along side the tibilone ?

i wondering whether to try this with having ovaries removed and hysterectomy x

thanks
Title: Re: Switching to Tibolone
Post by: Jacqueline Susan on December 22, 2019, 05:35:34 PM
Hi Sammiejane,
No I just take Tibolone, I've tried many other HRT preparations in the past but for me Tibolone has been by far the best. It has improved my mood hugely, no more palpitations, sex drive 👍🏼 and bladder control but better. I can chase my grandchildren around the park 😄. My hair has grown back as well. The best bit for me is my mood, I feel so positive, I think it is the testosterone effect that is helping me the most.
Title: Re: Switching to Tibolone
Post by: Musicandstars on January 21, 2020, 12:03:43 PM
Hi Dotty,

I did try daily Utrogestan but it didn't agree with me and made my breasts more painful.  Thanks for your advice; if the Tibolone isn't the answer I think I'll get advice from a menopause specialist as you suggested.

Take care...  :)
Title: Re: Switching to Tibolone
Post by: Musicandstars on January 21, 2020, 12:17:38 PM
Hi,

Thanks for taking the time to offer support and help!  During my research I found out that Tibolone doesn't seem to stimulate breast tissue, although not all sources agree, most seem to.  I dared not change my HRT over Christmas when I had so many visitors to look after,  :o, so continued with the old regime until yesterday which was Day 1 of Tibolone.  I'll try to remember to post updates about how it goes...
Thanks again  :)
Title: Re: Switching to Tibolone
Post by: Musicandstars on January 21, 2020, 12:23:09 PM
Hi,
Many thanks for your post, which I read with interest.  I started Tibolone yesterday, so it's very early days, but my breasts are softer and less painful since stopping Utrogestan and Estradot altogether (very early days I know).

Take care...
Title: Re: Switching to Tibolone
Post by: Musicandstars on January 21, 2020, 12:26:02 PM
Hi,
Thanks for your inspirational post! Started Tibolone yesterday so fingers crossed... :)
Title: Re: Switching to Tibolone
Post by: jaycee on January 21, 2020, 12:28:23 PM
Hi i have been on Tibilone [livial]  for years, had a break and back on it,i stopped it again fairly recently, but started again as having lots of aches and joint pains since stopping it,back on it now ,had no problems with breast pain etc,
I  stopped it as was having hair loss and wondered if it was connected,but doesn't seem to be
I did sleep better on it  too
Give it a try, i'm sure you will be fine,
Good for libido too, if anyone needs a boost
Title: Re: Switching to Tibolone
Post by: Musicandstars on January 21, 2020, 12:32:16 PM
Hi Avalon (nice name too!),
Thanks for your post, which gives me hope.  Day 1 on Tibolone was yesterday but so far so good.  Nice to rip off last Estradot patch - feels like a new beginning...

Take care  :)
Title: Re: Switching to Tibolone
Post by: Musicandstars on January 21, 2020, 12:39:23 PM
Hi Jaycee, I've noticed breasts have stopped hurting and inflammation has gone down already and I haven't long been on Tibolone so hopefully it was the right decision. Incidentally, since being on the Estradot and Utrogestan, I have been losing a lot of hair, so I'll monitor whether this changes with Tibolone. Thanks for your input!  :)
Title: Re: Switching to Tibolone
Post by: Wrensong on January 22, 2020, 04:02:36 PM
Hi Musicandstars, glad you were able to make the difficult decision about the change to Tibolone & I hope you feel better on it.  It would be great to know how you get on at your next breast screening appointment, especially if this shows the breast density issue has improved.  If you have time to update us & don't mind sharing I'd be very interested to know & I'm sure this would be helpful to other members.  I wish you all the best with everything.
Wx
Title: Re: Switching to Tibolone
Post by: Musicandstars on February 07, 2020, 04:03:37 PM
Hi Wrensong,

Hope you're well.  Thank-you for your good wishes which I much appreciate! :D

Well it's Day 19 since my switch from Estradot patches and sequential Utrogestan under the breast consultant's advice.  Plus points: breasts soft and painless and uninflamed which is great - little things matter such as being able to hug my family again without the soreness. I definitely feel calmer and more relaxed and confident, not bleeding is a welcome bonus and libido is on the up. ;) Negative, and it's a big one - the dreaded night sweats are back and after 8 years without them, it is a concern.  I had the fan on and the window open last night but was still boiling - really hoping that this is temporary as I'm not getting the sleep I need.  I'm not getting them in the day though so it could be worse. I'll certainly post of any changes (or not)  when I have my next mammogram.

All the best health and happiness to you...

Musicandstars
Title: Re: Switching to Tibolone
Post by: Wrensong on February 07, 2020, 04:16:57 PM
Oh Musicandstars yaaaay - that's great news about the breast improvement :).  The other benefits you describe are fab too!  I remember so well the pain & worry of fibrocystic breasts from teens onwards, with all the inevitable investigations.  Like you, I was later told screening showed I had very dense breasts.  Not only complicates interpretation of images, but can make biopsies more tricky to perform.  With boobs at their worst in fertile years, the pull of gravity just standing up getting out of bed was excruciating & I've always been very small, so goodness only knows what it's like for bigger women.  HRT regimens I tried postmenopause that made my boobs swell painfully also worried me terribly.  I'll be very interested to know what happens at your next screening & have everything crossed that the density issue will have resolved.   

What an absolute pain that the night sweats are back though.  I sympathise as that's a resistant symptom I'm still struggling to get under control.  Hopefully just temporary in response to your change of regimen.  Yes, please do keep us posted & I wish you all the very best with it.
Wx
Title: Re: Switching to Tibolone
Post by: Sammiejane on February 09, 2020, 05:01:22 PM
music and stars

has your hair improved yet since being on the tibilone x
Title: Re: Switching to Tibolone
Post by: Julia Dizzy on February 09, 2020, 05:20:09 PM
Is Tibolone still recommended for women over 60 with it being an oral tablet? (I'm 63) Would it be worth asking Meno clinic next month when I go? Currently on 2 pumps estrogel and Utrogestan 100mg daily for last 4 months. Thanks
Title: Re: Switching to Tibolone
Post by: Sammiejane on February 10, 2020, 10:02:49 AM
hi jaycee

how long did you stop the tibilone for ? as you know i stopped the gel for same reason to see if it was connected to hair loss and at first i thought no because hair was still shedding but after 6 weeks it had stopped not completely but reduced from 15 hairs in brush to 2 so normal shed x

i've restarted 4 days and added in progesterone to see if maybe it was imbalance of E and P but i?m already getting side effects not yet the hair and mood is better but stomach cramps trapped gas urinating more pelvic floor dosent feel as strong and hot flushes in the day which i never had x i?m thinking of that tibilone but worried of hair loss and weight gain x have you had weight gain on it ?
Title: Re: Switching to Tibolone
Post by: jaycee on February 10, 2020, 10:21:57 AM
Hi Sammijane, i have only had breaks of a few weeks at a time, i have gone back on it as after stopping i had terrible knee pain, and lower back pain and stiffness, that has improved, my hair seems to have stopped noticeably shedding to have lost some near my hairline, but none to see in the plughole
, and looks generally thinner all over,no body in it,
I have had no other problems with it
As for weight gain i didn't put on any weight,in fact i lost some, but i was more active than now,
Last year i seemed to suddenly put weight on,which is why i was tested for thyroid which came back normal, but i am almost 2 stone heavier, so not sure if its the tibilone,or just that i am not as active
Also i used to walk my dog 3 times a day but since she died in August not done that of course
I am waiting for results of my scalp biopsy, but it is very red
I was given steroid lotion, for itchyness, but now wondering if that has made it worse
I read that Rosemary essential oil was good for hair loss, so going to try that
It is a minefield isn't it
Title: Re: Switching to Tibolone
Post by: Hurdity on February 10, 2020, 05:08:51 PM
Is Tibolone still recommended for women over 60 with it being an oral tablet? (I'm 63) Would it be worth asking Meno clinic next month when I go? Currently on 2 pumps estrogel and Utrogestan 100mg daily for last 4 months. Thanks

I doubt it would be recommended - the general advice is for women to be on transdermal HRT over 60 as being safer generally in terms of clot risk/cardiovascular problems. Also may depend on other risk factors personal to you (body weight/fat, BP, smoking, diet, exercise, alcohol etc)? Might be worth asking though?

Hurdity x