Libido ... or not

[Pegs11]

Hi, I’m sure this has been asked many times before but ...

I’m 40, went through early menopause aged 32 (cancer).

Used to have strong sex drive, now it’s almost non-existent. (Although I put a lot of that down to stress too, and the fact I have developed chronic fatigue.)

Can’t take combined pill due to awful negative side effects on my mental health. Am on Tibolone (progesterone and testosterone), have been on it for a couple of years now.

Lack of libido is causing marriage issues and it’s getting us both down. I feel like I’m not the woman I once was, and my husband feels rejected.

I recently bought some black kohosh as I heard it can help... but then read it can damage the liver so didn’t end up taking it.

GP says there is nothing she knows of that can help me... feel written off.

Does anyone have any advice? Are there any supplements you’ve tried that have worked? Or some weird yoga pose?! Or, I dunno, sticking like of Gwyneth Paltrow’s crystal eggs up your foof?! I’m pretty desperate so I’ll try anything (apart from the egg)

Thanks!

I am hopefully nearing end of perimenopause at 52 and have had a libido drop amongst other problems. I wasnt keen on HRT so looked at other things out there to help with general menopause problems, the thing that bothers me a lot is insomnia, pain in my joints, mood swings - I could go on! Anyway, I started using menopause support tablets (Vogels) and my problems improved over a few weeks ( taking for over a year now). I'm sure they help as you should take 2 tablets a day, I was running low because of Covid 19 and more of a pain to get them, so I dropped to one a day then none. I hoped I was getting to a point when I didn't need them, but after a week or so my joints especially ankles became really stiff, libido dropped ( had dropped on reduced dose) and I was have increased sleep problems. Got another pot of tablets , started taking 2 a day again and immediately things have improved again, libido still lower but improving! There are many supplements out there, I have only tried these, but they have helped me.

Ah thank you for your reply :) sorry to hear you’ve struggled with symptoms too. It’s not easy.

Thanks for the advice about Vogel - I will give them a go!

Cheers - stay well

I tried Vogels because they had good reviews on mumsnet and other places, not the cheapest but I think they actually help.
Good luck, hope things improve - interested to know how you get on.

Just remembered if you go on Vogels website they did do a week trial pack for free, which is what I did first. I think you probably need longer than that to get them in your system and working, they may still do the free sample though.

@Pegs11 As you are a special case (so sorry to hear about your cancer by the way), your GP ought to refer you to a specialist for advice.

The menopause at the Chelsea and Westminster, London, is THE clinic for this and takes referrals from across the UK. (NHS.)
Once you have been, they can do on-going treatment by phone.

You may know that the treatment for low libido is testosterone. Your GP can't prescribe this - only a specialist. There are more and more women using it and menopause consultants like Nick Panay who runs the C&W clinic are pushing for it to be made mainstream.

Tibolone is not actually progesterone and testosterone. It's a steroid compound (artificial) which mimics estrogen and progesterone, but is slightly androgenic (but it's definitely not testosterone.)

I don't think anything herbal whoever it's made by is going to help, to be really honest. I don't know what is in the Vogel stuff but will look- but none of these herbal products have shown any efficacy in trials, and they are not recommended for libido. Some have a small positive effect on hot flushes (ones with sage, red clover or black cohosh in them.)

Does your cancer prohibit you using mainstream HRT rather than Tibolone? The main use of Tibolone is that is may not stimulate breast tissue as much. It can though slightly increase the risk of endometrial cancer and used to be linked to more strokes though that seems to have been disproved.

Really, you need specialist advice and if - once this awful virus is under control- you should push for a referral to the C&W if at all possible, or another top-dog meno consultant.

Good luck!

@Pegs11 This is a very helpful podcast by Nick Panay where he talks about all hrt and especially testosterone.

lizearlewellbeing.com/making-sense-of-hrt-nick-panay/

I worked in medical research myself and appreciate scientific evidence is important when considering not only medicines but methods, results etc.when conducting experiments.

But I am also open minded and know just because there is no scientific evidence it doesn't mean something should be dismissed.

By all means seek specialist help, although be aware testosterone comes with side effects, but that help will not come tomorrow, next week or probably for several months. In the meantime something that I and many others have found helpful, proven or not, can be obtained quickly and easily. You never know it might help . Look at anecdotal evidence and comments about these, I did, and form a decision.

The main ingredient of the Vogel pills is soy. This is a phytoestrogen. There are lots of brands of menopause supplements that include soy.
You can get the same thing in your diet from soya milk, yoghurts, beans etc.

The jury is out on its safety - and its own side effects- and it's not usually recommended for women who have had certain female cancers, but if it does help at all it's usually with hot flushes.

I've not seen anyone mention Vogel here before @Tru2, you are the first (you seem to be new to Mumsnet?) and I've been on the forum for many years.

Anyway, good luck if it's helping you. Long let it continue!

Thank you JinglingHellsBells and Tru2 for taking the time to reply.

To cut a long story short, I’ve had one hell of a time trying to get post-cancer support on the NHS - including trying to get a referral to an endocrinologist. I’ve had - and continue to have - a real fight on my hands trying to get the help I need... which is really not what I needed after having already battled with one of the world’s rarest cancers (the surgical treatment for which has left me without many of my internal organs - ovaries, spleen, half my bowel, gall bladder and more).

You’d think that there would be more help available...

I guess that’s just the state of the NHS these days 😒

I will try again to get a referral for the hormonal thing - will see if I can get an appointment with Mr Panay’s team (thank you for the helpful recommendation).

I will try the herbal stuff in the meantime.

Fingers crossed I’ll be able to navigate my way through this problem.

Thank you

Sounds like you have been through the mill for sure, good luck with getting something sorted hopefully sooner rather than later.
P.s. Accupuncture could be a thought too!

I am not sure what kind of cancer you had and if that is why you were prescribed Tibolone rather than estrogen and progesterone. Is there a reason?

I'd be careful about using supplements with soya in- which is in all meno supplements including the Vogel one.

The reason is that sometimes soy can mimic estrogen - it's not recommended for men as it can feminise them- but at the same time the jury is still out on whether it really does work like HRT as it's very weak.

However, for someone like you who had cancer and is not on an estrogen-type of HRT the question is have you been told to avoid estrogen (hence Tibolone?)

I tried HRT with estrogen and progesterone, but they severely affected my mood, so I couldn’t continue with them 😞

But without any HRT I had similar problems AND no libido.

Tibolone was prescribed as a kind of middle ground, I think, mainly to help with the libido thing (although it hasn’t helped, hence why I’m here).

I feel like I can’t win!

There are at least 3 different types of progesterone, and 4 if you count the Mirena. If you didn't try them all, you may still have that option.

what did you try? Pills, patches, gel and the type of progesterone?

Hi, I have tried pills and patches but can’t remember which ones, it was all years ago now.

I think I did ok on the oestrogen-only patches, a few years ago when I had several rounds of (failed) IVF, but I think they were oestrogen-only for two weeks then they added in progesterone... which totally messes with me.

Maybe there is a patch I can get that has a three-month cycle, so 2.5 months oestrogen followed by 2 weeks progesterone. So I only have to put up with feeling awful four times a year, for two weeks!

I will try to find out.

I had no idea Tibilone just mimics the hormones, this is not what my GP told me! I was under the impression the Tibilone would protect me from many of the things associated with post-menopause (weakening of bones, shrivelling of cervix etc), is this not the case?

I think I need to have my HRT reviewed... by a specialist!

There are 4 types of progesterone

Norethisterone
Dydrogesterone
Utrogestan
MPA ( Medroxyprogesterone)

and the type in the Mirena coil

It's unlikely you have tried all.

The best for some women are Dydrogesterone (in Femoston) or Utrogestan which is natural micronised progesterone.

There is a 3-month HRT called Tridestra which uses progesterone once every 3 months.

When I said Tibolone 'mimics' hormones, what that means is it's an artificial type of HRT whereas some others- estrogen gel and Utrogestan- have the same molecular structure as our own.

Tibolone will protect your bones etc as you were told, it's just not as natural a product as other types of hrt.
It's actually a type of steroid (chemically.)

Hi, wow I had no idea there were so many different types! I certainly haven’t tried them all.

I think utrogestan was the type used during my IVF cycles. I really have a hard time remembering (my brain has blocked out a lot of the last few years as too traumatic)

Now you’ve mentioned it, I think I did try Tridestra a few years ago. There were a few I tried, but then stopped when I found my mood was being negatively affected. But I’m now thinking I should persevere... maybe try the Tridestra again and see if it’s different this time... I feel like my whole body chemistry has changed in the last few years, so it might handle it differently this time.

Anyway, thank you so much for the time and energy you’ve put into replying to me, I’m really grateful and I’m going to try and get it sorted properly now 😊

Update: I spoke to Menopause Clinic in Bristol, they had a slot available for a telephone appointment. They said for my age, I should be getting more oestrogen and testosterone. They said this should improve my libido and give me more energy generally ... they said lack of these hormones could be what’s causing my chronic fatigue and pain. So, they have prescribed oestrogen gel, testosterone gel, and progesterone pessaries (Utrogestan). The lady I spoke with was very sympathetic, and seemed very confident that this course of action will help me. Thank you so much for the advice, it’s definitely what I needed in order to really take the bull by the horns with all this and I’m very grateful indeed. Blessings to you xxx

That sounds hopeful.

The combination is a good one and lots of us are on it. (I am using using testosterone but the other two items.)

I hope it helps.

Was this a private clinic? Just interested as the NHS doesn't licence vaginal use of Utrogestan for some weird reason but I use it that way as my (private) meno consultant favours that. it's licensed for vaginal use in Europe but not UK.

Yes, private clinic, but I think she said I could get the progesterone on the NHS... my brain was a bit foggy by this point though

You can get Utrogestan on the NHs.

But the instructions will assume oral use.

In practise you can use them vaginally but the label may tell you otherwise.

If you are getting them with a private prescription, from this private clinic, we aware they are available in 100 and 200mgs. the dose is 200mgs so vaginally you use 2 x 100 or 1 x200.

They are quite pricy if it's a private prescription but if this clinic writes to your GP you ought to be able to get them on the nhs.

Hello, yes I am paying for the first lot privately, and the lady is writing to my GP to ask her to prescribe thereafter. X