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[redandpinkstripes]

I'm 49 and had painful periods my whole life. The past 2 years my pelvic pain has ramped up to the point that I was signed off sick and even given Morphine at one point to deal with the pain.
Investigations were clear for Endo but they found a large fibroid. I had my surgery 4 months ago and was immediately free of pain and the bowel/bladder issues. I did struggle with the menopausal symptoms, as I had my ovaries removed. I started the hrt 8 weeks post op and within a few weeks all of my symptoms are back
I have seen gynae this week and she has diagnosed me with Endometriosis. She said they just haven't been able to see it with the naked eye. The estrogen is exacerbating the pain. I am now having to stop the estrogen gel and go onto Tibolone tablets. I really don't want synthetic hrt. Any experience of this , I would be really grateful X

[CLKD]

Sorry I have no knowledge of endometriosis so hopefully some1 will be along.  If not put 'endometriosis' in the Forum search box.  Make notes ;-)

Which HRT were you prescribed?

[Violetta808]

Hi Stripes

I've been on tibolone for two months and I am having a very positive experience and no side effects.

I don't have endometriosis but I do have three small but very reactive fibroids that bled a lot when I started taking conventional HRT. I experienced the whole 2ww pathway shebang with scan, hysteroscopy and biopsy, like so many other women on the forum.

The consultant suggested I try tibolone, rather than having surgery on the fibroids. I was initially quite dubious of a synthetic steroid as I had been adamant I wanted body-identical (and preferably transdermal) HRT, but I'm really glad I tried it. I find it very gentle but effective - no bleeding at all, and no breast pain and bloat (which I'd also experienced on 50 Evorel and Utrogestan).

The only thing about tibolone is that it's possibly quite weak - I'm guessing equivalent to 50mcg patch or less or 1-2 pumps of gel - so might not be enough if you need higher doses of oestrogen. I'm 56 and four years post meno, but do still have my ovaries. I wonder if they are doing something in the background as my meno symptoms weren't that bad compared to some (mainly frequent headaches, low mood, loss of libido, dryness and VA, joint pain) - all are vastly improved on tibolone.

So I wanted to reassure you that tibolone is definitely worth trying, even though it's synthetic, and I have been very, very pleasantly surprised by how good I feel on it.

[bombsh3ll]

What I would suggest is to think about why exactly you dislike the idea of "synthetic" hormone therapy?

Sometimes people just have a vague belief that body identical/ body similar products are better, without any particular reason, possibly due to the way certain treatments are talked about on social media.

I can understand the issues around products derived from horse urine, but that doesn't apply to tibolone.

Transdermal estrogen has been shown to have a statistically lowe risk of blood clots than oral, however this doesn't necessarily translate into a clinically significant difference in a healthy woman with no other risk factors.

I'm on a combined pill, with oral estradiol and a progestin. That's synthetic, but it is the best option for meeting my individual needs.

If a synthetic product is the best fit for you, I wouldn't feel discouraged by everything you read and hear about transdermal estradiol being the dogs bollocks.

I am interested in tibolone for myself when the time comes to graduate from Zoely.

I do need an androgen, & currently take dhea, but I don't want the cost or the faff of taking 3 separate products in the future, especially messy and unreliable gels, and then sit there in my underwear for however long until it dries. I'd much rather take a pill!

Tibolone is also associated with a lower breast cancer risk, if that's important to you.

[buffy26]

Hi Redandgreenstripes,

I had agonising endometriosis all my life (61 now) and as soon as I stopped my periods I was pain free. The final months were dire, that I remember. Like you I was very cautious about taking HRT and left it until I had suffered long enough up to three years post menopause. I then read a book called Estrogen Matters and sought the expertise of a Menopause specialist who convinced me taking HRT was more important than not, despite the perceived risks. So I take Ostrogel and Utrogestan. So far I am ok. I had a thickening and bleed initially but was scanned and had a hysteroscopy to rule things out. I am super anxious, but after reading the book about the protection for our hearts and bones, I was sold on it. I also had Osteopenia too which added weight to the decision.

I dont know about Tibalone, so cannot guide you on that, but I would encourage you if you can to consult with a Meno Specialist and also read up on the Endometriosis Support group for guidance.

So sorry you continue to have so much pain. Its the most debilitating nasty invasive condition. Sending you good luck in finding answers

[CLKD]

   Girls. !

[joziel]

redandpinkstripes, you can use utrogestan for endo. You just need it continuously, orally, and at a higher dose than most people.

I also have endometriosis - diagnosed with a lap in 2013. I'm now 46 and on HRT, actually 12 pumps of gel (you heard that right) and 300mg of utrogestan continuously (and orally).

You haven't said what exactly you were prescribed? How much estrogen? How much utrogestan? Continuously or sequentially?

If you have a hysterectomy and your ovaries out as well, you will be in surgical menopause. You might also not have been prescribed any progesterone at all - because you don't need it if you have had a hysterectomy usually.

But if you have endo, you have it outside your uterus - that is the definition of endo - so without any progesterone, the estrogen will be aggravating the endo. You need progesterone, continuously and orally (because putting it in the vagina won't get it everywhere it needs to go when endo can be anywhere) - and you need a higher dose than most other people.

Google "Dr Prior" and "Cemcor" and "endometriosis" - all 3 words together - and you will get up Dr Prior's work and research using progesterone (not progestin) for treating endo. I also highly recommend seeing a private menopause clinic like the Newson Clinic online, who will be very experienced working with complex situations around HRT use - including endo.

[CLKD]

Tnx.!

[aj1971]

redandpinkstripes, you can use utrogestan for endo. You just need it continuously, orally, and at a higher dose than most people.

I also have endometriosis - diagnosed with a lap in 2013. I'm now 46 and on HRT, actually 12 pumps of gel (you heard that right) and 300mg of utrogestan continuously (and orally).

You haven't said what exactly you were prescribed? How much estrogen? How much utrogestan? Continuously or sequentially?

If you have a hysterectomy and your ovaries out as well, you will be in surgical menopause. You might also not have been prescribed any progesterone at all - because you don't need it if you have had a hysterectomy usually.

But if you have endo, you have it outside your uterus - that is the definition of endo - so without any progesterone, the estrogen will be aggravating the endo. You need progesterone, continuously and orally (because putting it in the vagina won't get it everywhere it needs to go when endo can be anywhere) - and you need a higher dose than most other people.

Google "Dr Prior" and "Cemcor" and "endometriosis" - all 3 words together - and you will get up Dr Prior's work and research using progesterone (not progestin) for treating endo. I also highly recommend seeing a private menopause clinic like the Newson Clinic online, who will be very experienced working with complex situations around HRT use - including endo.

I was going to say pretty much what Joziel has said here. All the talk is around keeping utrogestan as low as possible, to avoid progesterone intolerance, but some women react better to high doses. I, too, have had endometriosis and currently take 200mg every day. I am with Newson Health and they are very good at tailoring HRT to specific needs. A dose of up to 300mg per day is fine, according to research.

Some women will not cope with this, but many of us really benefit from it. Of course, utrogestan can also be taken vaginally. However, your best bet would be to talk to a specialist who really understands progesterone.

I am not saying, though, that tibolone won't work. The only way you will know, is to try it. But bear in mind you have other options if it doesn't.

[joziel]

There's a good US-based FB group called Bio-identical Hormone Replacement Therapy (I think) and they are testing their progesterone levels. The UK seems not to care about what our actual progesterone levels are and just gives us a standard dose. But what's interesting from the US group, is that different women taking the same amount of progesterone have different serum levels.

And the recommendation is to have the right estrogen to progesterone ratio. So if someone has higher serum estrogen levels (whether because they are on a higher dose or because they just absorb a normal dose very well), they would need a higher dose of progesterone.

[aj1971]

There's a good US-based FB group called Bio-identical Hormone Replacement Therapy (I think) and they are testing their progesterone levels. The UK seems not to care about what our actual progesterone levels are and just gives us a standard dose. But what's interesting from the US group, is that different women taking the same amount of progesterone have different serum levels.

And the recommendation is to have the right estrogen to progesterone ratio. So if someone has higher serum estrogen levels (whether because they are on a higher dose or because they just absorb a normal dose very well), they would need a higher dose of progesterone.

That sounds useful, Joziel. Will join it. For me, progesterone has been really important. My body likes it better than oestrogen!

[redandpinkstripes]

Thank you so much for all of your replies and words of wisdom.
I had a total hysterectomy, including ovaries. I was on 2 pumps of gel but have dropper to 1 pump until I am switched to Tibolone. I'm waiting for my gp to receive the letter from gynae asking them to prescribe.
I am in agony and so fed up as thought 4 months ago was the cure.
I will definitely look at seeing a private menopause specialist.
I really appreciate all of your support xx

[joziel]

Are you not on any utrogestan?? 

Wowsers. I wouldn't wait on the NHS to be honest, especially not if you're in agony. Go online to Newson Health and make an appointment for an online consultation. They will write a letter and tell your GP what to prescribe so you don't need to pay for the meds, just the appointment. Best £230 ever spent for me.

[redandpinkstripes]

No, as they didn't think it was Endo when I had the surgery.
I am definitely going to see a specialist. Thank you x