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[elle]

Hi, I'm currently experimenting with various HRT regimes to address high pain from hypermobility (EDS) since menopause. I've been on various doses of Estrogen and progesterone, patches, gel and tablets both sequential and continuous (highest dose)  There's been little change and my gynecologist told me there were lots of different HRT options. I've been looking at how testosterone may help and had some useful info on this forum from people.I know getting testosterone itself is impossible without mentioning low libido. I'd like to discuss Tibolone with my GP, who seems receptive to me trying different HRT. I'm wondering if anyone has any experience with this and if it helped with symptoms, or if it's something that GP's are happy to prescribe. I can't use the coil and had my last period more than a year ago. For anyone on Tibolone or testosterone gel, have they found it makes a difference to symptoms other than libido? Thanks

[CLKD]

I suggest that you get a referral to a dedicated menopause clinic.  Who is over-seeing your hyper mobility? 

As oestrogen levels drop muscles may become lax. 

[chopsuey]

I take testosterone for brain fog and energy rather than libido and it certainly helps with that. The oestradiol sorted out the aching joints and muscles for me, so hard to say if testosterone had any further benefit there. Do you know whether you are absorbing the oestrogen part of the HRT well?

Do you see anyone knowledgeable about hypermobility/EDS for advice on exercises to help maintain muscle strength?

[elle]

I suggest that you get a referral to a dedicated menopause clinic.  Who is over-seeing your hyper mobility? 

As oestrogen levels drop muscles may become lax.

Thanks, yes, I was referred to the menopause clinic here in Edinburgh and although the person I saw was lovely, they were upfront about the fact they didn't have much info on menopause and connective tissue pain. They did give me the go ahead to try the highest dose of HRT.

I've had a whole range of treatments and scans for hypermobility including pain clinic, ESWT, constant rounds of physiotherapy, biomechanics- gait analysis and I weight train, do circuits and run daily (other than rest and recover days) Also just finished a 6 month joint pain rehabillitation programme and researched till I'm blue in the face lol. I also take methylfolate, creatine and protein for muscle weakness and ligament laxity. At my wits end!

[elle]

I take testosterone for brain fog and energy rather than libido and it certainly helps with that. The oestradiol sorted out the aching joints and muscles for me, so hard to say if testosterone had any further benefit there. Do you know whether you are absorbing the oestrogen part of the HRT well?

Do you see anyone knowledgeable about hypermobility/EDS for advice on exercises to help maintain muscle strength?

Thanks for the reply, that's interesting the testosterone has had some effect. I've no idea if I'm absorbing the estrogel to be honest.  I use 4 pumps a day but didn't really have too many of the usual menopause symptoms before taking it. There has been an improvement but hard to know if that's just time, HRT or other treatments.

As for seeing someone who knows about EDS or hypermobility, I've seen a pain physio at the pain clinic and joint pain rehabilitation instructor and done a lot of research, but NHS physios in general seem to know very little about connective tissue disorders unfortunately. I'm very active and have been fitness training for quite a long time with a focus in the last year on strength training and I run. All slowly and in pain! Could I ask if you got your testosterone on the NHS or did you have to get it prescribed privately? Thank you 

[chopsuey]

It was started privately. The GP was unable to sort out my progesterone intolerance and I was seeing someone privately for overall HRT help. Although I get the rest of my HRT via the GP now, I have carried on with the private testosterone, as they know from my records that it's not for libido. I do resent having to pay for it though. As I am paying for it, I use Androfeme, so I at least don't have to work out the right dose from the gel products designed for men.

[elle]

It was started privately. The GP was unable to sort out my progesterone intolerance and I was seeing someone privately for overall HRT help. Although I get the rest of my HRT via the GP now, I have carried on with the private testosterone, as they know from my records that it's not for libido. I do resent having to pay for it though. As I am paying for it, I use Androfeme, so I at least don't have to work out the right dose from the gel products designed for men.

Thanks very much for the info, can I ask, did you find it relatively easy get the testosterone prescribed privately if it wasn't for libido? I'd be very keen to do a test period to see if I notice any difference with pain, but I'm not sure how readily they prescribe for other symptoms besides libido x

[chopsuey]

It was the doctor that suggested it, when my other symptoms were sorted, but the brain fog persisted. I wasn't even having sex at that time. I see someone else now and they too are fine with prescribing it for it's other benefits. I think generally, most private specialists are open to prescribing testosterone, even if there isn't hard evidence that it helps with things beyond libido. Clinical experience tells them that it does, and it makes sense when you know what roles testosterone plays in women's bodies. Best to check first though, before you pay your money. Of course, there's nothing to stop you telling them it's for libido but I would prefer to be honest about my situation, so they can deal with it properly.

I think in the NHS, it's partly a financial thing, with the extra costs of having blood tests to make sure you have sufficient oestradiol levels first, and then monitoring to make sure your testosterone levels stay within certain parameters. For me, now I'm established on it, that means a once yearly blood test. If you go privately, none of this will be cheap of course, and it may take a while to know if there are any benefits.  Haver you had a look at some of the testosterone threads on this forum? 

For you, I think it might be worthwhile having your oestradiol levels checked anyway, which you can do yourself through companies like Medichecks. Were you any better with oral oestrogen? They can also check testosterone levels, including SHBG and Free Androgen Index, which you will likely need beforehand anyway (although many specialists may not accept the results and will probably want you to do tests through them). If you do it yourself, make sure you have a blood draw and not a fingerprick test, which are unreliable, and have the test done prior to your Oestrogel application that day.

Was your EDS problematic before becoming menopausal? Hormonal changes clearly have a big impact but also just the normal decrease in muscle mass with ageing, which you will feel more acutely with your EDS, although it sounds like you are doing what you can to mitigate that. 

[bombsh3ll]

Superdrug have a testosterone only service. Just say it's for low libido. Then you can try it and if it helps pursue it through the NHS. It's a crock of shit that we are only allowed it to sleep with men, but at least we all know what to say to get it now.

Regarding tibolone, I don't know if you are postmenopausal but you will have to say you are to get tibolone. No safety reason just the possibility of getting irregular bleeding and unknown teratogenicity - not an issue if you don't plan to get pregnant!

Finally I take DHEA rather than testosterone. It has got my FAI from near zero to 5 and testosterone to top of healthy range. I take it to help with severe dysautonomia and it does, obviously not a cure but it definitely reduces presyncope and gives me more access to upright posture. I know from the dysautonomia community that androgens help those with EDS although I don't have this myself.

It is another option for those who can't get testosterone prescribed, can't afford it or like me are on the combined pill.

[elle]

It was the doctor that suggested it, when my other symptoms were sorted, but the brain fog persisted. I wasn't even having sex at that time. I see someone else now and they too are fine with prescribing it for it's other benefits. I think generally, most private specialists are open to prescribing testosterone, even if there isn't hard evidence that it helps with things beyond libido. Clinical experience tells them that it does, and it makes sense when you know what roles testosterone plays in women's bodies. Best to check first though, before you pay your money. Of course, there's nothing to stop you telling them it's for libido but I would prefer to be honest about my situation, so they can deal with it properly.

I think in the NHS, it's partly a financial thing, with the extra costs of having blood tests to make sure you have sufficient oestradiol levels first, and then monitoring to make sure your testosterone levels stay within certain parameters. For me, now I'm established on it, that means a once yearly blood test. If you go privately, none of this will be cheap of course, and it may take a while to know if there are any benefits.  Haver you had a look at some of the testosterone threads on this forum? 

For you, I think it might be worthwhile having your oestradiol levels checked anyway, which you can do yourself through companies like Medichecks. Were you any better with oral oestrogen? They can also check testosterone levels, including SHBG and Free Androgen Index, which you will likely need beforehand anyway (although many specialists may not accept the results and will probably want you to do tests through them). If you do it yourself, make sure you have a blood draw and not a fingerprick test, which are unreliable, and have the test done prior to your Oestrogel application that day.

Was your EDS problematic before becoming menopausal? Hormonal changes clearly have a big impact but also just the normal decrease in muscle mass with ageing, which you will feel more acutely with your EDS, although it sounds like you are doing what you can to mitigate that.

Thanks so much for the response, I'm glad you are managing to get access to testosterone and can be upfront about why and that your medical care seems to be receptive to prescribing it for you outside of libido, that's great. It's a shame you can't access it on the NHS, fingers crossed this will change in the future.

Yes, the threads here have been really useful and the only reason I know of testosterone as a possible option.I've only tried patches and now the gel. EDS has been problematic previously but nowhere near as bad as with menopause. I did have a lot of problems during pregnancies as I got SPD and had to wear a corset to hold my pelvis in place. But menopause has just whacked everything at once, ankles, hips and also multiple episodes of my ribs subluxating.

The info on testing is really useful for me thanks. Cost is inhibitive right now but I did do a testosterone test, no other reason than to see if it was wildly out of whack. The report came back normal- 0.23 nmol/L Normal range 0.101- 1.42. It probably means nothing given it was a one off but I was desperate to see something that might help. I was on HRT patches at the time and progesterone. I hope it continues to help you and the brain fog subsides x

[elle]

Superdrug have a testosterone only service. Just say it's for low libido. Then you can try it and if it helps pursue it through the NHS. It's a crock of shit that we are only allowed it to sleep with men, but at least we all know what to say to get it now.

Regarding tibolone, I don't know if you are postmenopausal but you will have to say you are to get tibolone. No safety reason just the possibility of getting irregular bleeding and unknown teratogenicity - not an issue if you don't plan to get pregnant!

Finally I take DHEA rather than testosterone. It has got my FAI from near zero to 5 and testosterone to top of healthy range. I take it to help with severe dysautonomia and it does, obviously not a cure but it definitely reduces presyncope and gives me more access to upright posture. I know from the dysautonomia community that androgens help those with EDS although I don't have this myself.

It is another option for those who can't get testosterone prescribed, can't afford it or like me are on the combined pill.

I'm going to check out the Superdrug service thanks so much. I assume it might take months for it to have an effect. I'm post menopause and will discuss tibolone with GP. Can I ask, is the DHEA an OTC supplement or prescribed? I'm wondering how effective it is as a supplement I'm glad to hear it helps with your symptoms, thanks again x

[bombsh3ll]

It's otc. I take 25mg sublingual daily, life extension brand & buy it on iherb.

I personally find it clinically effective however this may not be the case for everyone.

However the biochemical effects can be measured by taking a testosterone blood test before starting it (which you have already done, no need to repeat) and after taking it for about 3 months.

[elle]

It's otc. I take 25mg sublingual daily, life extension brand & buy it on iherb.

I personally find it clinically effective however this may not be the case for everyone.

However the biochemical effects can be measured by taking a testosterone blood test before starting it (which you have already done, no need to repeat) and after taking it for about 3 months.

Thank you! I'm going to look into those and give them a try. Fingers crossed they'll have some benefits I'm really glad you find them effective.