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[redandpinkstripes]

I had a hysterectomy 5 months ago for Adenomyosis/fibroids. They now think I have Endometriosis as my pain has flared up since starting hrt. I'm on Tibolone but I'm still in so much pain. Has anyone had experience of this and have they found sequential hrt better? I don't think the Tibolone is strong enough. The specialist has suggested I stop hrt but there is no way I can, as the menopausal symptoms were brutal.

[CLKD]

 

How were your periods over the years? 

'they now think' - is this via examination under GA or simply 'this might be ......... ' because 'they' don't know!

hopefully some1 will be along with advice. 

[redandpinkstripes]

My periods have always been very painful and heavy. Ultrasounds always clear, so I just assumed it was how they were meant to be My pain reactivated after starting hrt, exactly the same as it did last year when I went on add-back hrt when on Prostap. I have so many symptoms of Endo but my laparoscopy was dine by a general gynae. I've been referred to a specialist bsge one now. It's just so frustrating to be as bad as I was post op. I have to make a decision between pain or my mental amd overall health xx

[bombsh3ll]

What dose of tibolone are you on? It comes in 1.25 and 2.5mg.

Tibolone can work well but in my opinion a combined HRT with a strong progestogen is probably better if there is significant endometriosis as tibolone is slightly less suppressive of endometrial tissue than a potent progestin.

You don't want to be on any kind of cyclical preparation - these are designed to induce bleeding, and although your actual uterus is gone, any endometriosis deposits in the pelvis will proliferate and bleed too on this, which is painful.

[sheila99]

If you use a separate oestrogen and progestogen you can increase the progestogen until the endometriosis is under control. As above, continual progestogen would be a better option than cyclical. I don't have if myself but someone on here uses 300mg utrogestan daily to keep it under control.

[redandpinkstripes]

I'm on the 2.5mg but my pain is unbearable. I'm thinking I might need to see a menopause specialist? X

[Hurdity]

Hi redandpinkstripes

Sorry to hear about yout pain.

I would definitely change from the tibolone - as per the others, the oestrogenic component seems to be stimulating the endometriosis and causing the pain and it sounds like you need more progestogen. One of the known potential side effects of tibolone is endometrial thickening and bleeding and even though it is suggested as a suitable HRT for endometriosis, it sounds like it's not appropriate for your situation because it's not working - as evidenced by the pain.

Here is what it says on this website:

"Endometriosis
    There is a small risk of reactivation of endometriosis with HRT use and any recurrence of symptoms should be reported. If a hysterectomy has been performed for endometriosis, the choice of HRT use thereafter should be influenced by the extent of endometriosis at the time of the operation. Since hysterectomy often causes a premature menopause, it is often advised to take HRT until the average age of the menopause; 51 years. HRT after hysterectomy usually consists of estrogen only. However, in the presence of endometriosis, estrogen may cause stimulation of residual deposits and consideration should be given to using continuous combined (estrogen plus daily progestogen) therapy, or tibolone, though little research has been done on the effect of different types and duration of therapy. Medical treatment of endometriosis often involves ovarian suppression which, along with ovarian removal, may increase the risk of osteoporosis. "

https://www.menopausematters.co.uk/atoz.php#GlossE

Not sure what you mean here: "I've been referred to a specialist bsge one now.". Bsge?

In any case - referral to an endometriosis specialist would be a good thing so see how things go after the appointment.

Re taking a stronger progestogen along with additional oestrogen as part of HRT. From memory Provera - Medroxyprogesterone has the highest affinity for progesterone receptors, better even than norethisterone (can't find where I read this as it was years ago!), so that would be a possibility. You could choose an oestrogen preparation at the type and dose which suits you - patch, pill or gel.

Hope this helps and do keep us informed

Hurdity x

[redandpinkstripes]

I'm so sorry, I thought i had replied to this thread previously.
I've come back to it as I really need to get myself sorted. I feel dreadful. My pain is awful. I'm also having a flare up of joint pain and my vision is deteriorating daily. I feel exhausted. My Ferritin is only 15, so that isn't helping.
Can anyone recommend a menopause specialist in Endo please. I've wasted so much money going privately and I'm worried about not finding someone specialist.
Bsge is the centre of specialists in Endo.
Thank you for all of your support xx

[joziel]

redandpinkstripes

I have a history of endo, I had a lap in 2013 where it was lasered out - so it was confirmed.

I am totally symptom-free on a high dose of continuous utrogestan. Have you tried that?

Endo is stirred up not just by estrogen but by fluctuations more than anything. Stable and consistent delivery of hormones is best along with continuous and heavy use of progesterone.

I am on 300mg of utrogestan continuously, except for a 3-5 day break where I stop to allow a bleed. I am symptom-free like this. I did try sequential HRT first but I got the pains back and need continuous high dose utrogestan. I am also on a very high dose of estrogen because I don't absorb it well. I'm on 125mcg patch and 12 pumps of gel. And still symptom-free...

I am with the Newson Clinic and highly recommend them. My doctor there is Dr Jane Robertson and she's very good, although my endo issues haven't been difficult to manage at all with enough utrogestan.

I don't know anything about tibolone at all so can't help with that.

[redandpinkstripes]

Thank you for your reply. I'm glad to hear your regime is working for you.
As I've had a total hystetectomy, I don't have fluctuations, only the hormones I take daily.
I just don't feel like the Tibolone is enough estrogen. It had taken the edge off, just.
I will look into Louise Newson's centre. I'd ideally like to see someone face to face, so not sure if she had clinics near to me.

[joziel]

She has a lot of clinics around the UK now. If you check out her website there's a page which lists them all.

[redandpinkstripes]

Thank you 🙏 x