Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[TheMidnightSkulker]

Hi, everyone. I'm back. I've just had a disappointing encounter with a specialist.

SOME BACKGROUND

Previously, I wrote this explanation of my symptoms:

https://www.menopausematters.co.uk/forum/index.php/topic,64256.msg889442.html#msg889442

tl;dr: I was on combined BCP (Yasmin) for decades, stopped three years ago at age 51, and got very puffy eyes overnight as a result of stopping. All other causes have been ruled out. I am definitely sure this is a hormonal problem.

The puffiness is enough to ruin my appearance, and I'm very upset about that. Because I'm a performer it has also ruined my ability to work.

Here is a very important point: After six months off Yasmin, as a test, my GP gave me one (1) more pack of Yasmin. Within five days all my symptoms disappeared, INCLUDING MY EYE PUFFINESS. I could literally see the skin of my eyelids puckering and tenting as it shrank back into my eye sockets. After I finished that one (1) pack of Yasmin, my eyes got puffy again.

Therefore, I know that an effective treatment exists. The problem is that that treatment isn't sustainable into post-menopause.

----

FIRST ATTEMPT: ELLESTE DUET CONTI

After one year, I qualified as post-menopausal. I consulted my GP, and was put on Elleste Duet Conti. I posted about that here:

https://www.menopausematters.co.uk/forum/index.php/topic,64943.msg896893.html#msg896893

tl;dr Elleste Duet Conti was no help whatsoever.

----

NEXT ATTEMPT: OESTROGEL + CYCLICAL UTROGESTAN

After three months, I switched to two pumps of Oestrogel per day, plus 200mg Utrogestan for 12 out of 28 days.

This is FABULOUS, and has improved my life in a range of ways. It also improved my eye puffiness by about 50%, which was a dramatic improvement. Much as I had when I briefly went back on Yasmin, I could literally see the skin of my eyelids puckering and tenting as it shrank back into my eye sockets.

Therefore, I know that oestrogel + cyclical utrogestan is a partially effective treatment.

Unfortunately, 50% improvement is not enough, but I hoped it would continue to improve over time. It didn't. A year later, my eyes are still puffy enough to ruin my appearance. So this brings me to where I am now.

-----

MY CURRENT PROBLEM: CAN I IMPROVE ON MY CURRENT TREATMENT?

I paid through the nose to see a specialist.

They told me two things:

1. To increase the oestrogel to three pumps.
2. That the utrogestan regime is unsafe for someone of my post-menopausal status, so I must change to 100mg every single day.

Since changing to the new regime, my eye puffiness has got worse. I'll have to wait and see if it improves with time.

However, I've already spent three years on this, three years during which my eyelids have been stretched out by the puffiness at the exact same time as my collagen and elastin have dramatically decreased. The longer this goes on, the less I'll be able to recover from this stress on the elasticity of my skin, even if a complete cure for the puffiness is found.

----

A PAST EXPERIENCE THAT IS AFFECTING HOW I SEE MY CURRENT SITUATION

I should add that the BCP was part of an acne treatment regime. I had acne from the ages of about 10-11 until now, although since menopause I only need topical treatments to control it.

Because GPs don't really know how to treat acne, and don't want to, they would prescribe teenaged me enormous doses of tetracycline, which had no effect whatsoever.

When I pointed out "hey, all these enormous doses of antibiotics are having no effect whatsoever," they would tell me to accept my acne as an inevitable fact of life.

I didn't want to accept my acne, I wanted to control it. After 13-14 years of obsessive effort, and running between the political raindrops of self-treatment where I could, and the politics of appealing to doctors where self-treatment wasn't enough - I did finally manage to get my acne under control.

All that time was time I could have spent differently, if only I'd had a sympathetic ear from a knowledgeable doctor.

Because of this experience, I'm reading the letter from the menopause specialist, and one particular paragraph strikes me as hauntingly familiar.

----

To paraphrase:

1. She first says that it's likely my puffiness is a result of a hormonal imbalance after coming off BCP (agreed, all the evidence points that way, and that's why I came to her)

2. Then she says that collagen and elastin inevitably decline as part of the ageing process, and that is probably contributing to the puffiness.

I mean, yes, I know collagen and elastin decline. I know this is a problem that, overall, will not get better with age. No matter what I do to try to maintain my appearance, ageing is a process that only goes in one direction and it ain't backwards.

But here's the thing. I've already found a therapy that works. I repeat:

After six months off Yasmin, as a test, my GP gave me one (1) more pack of Yasmin. Within five days all my symptoms disappeared, INCLUDING MY EYE PUFFINESS. I could literally see the skin of my eyelids puckering and tenting as it shrank back into my eye sockets.

If all this were solely due to the ageing process, it wouldn't appear and disappear in a matter of days when a specific treatment was withdrawn and then restarted.

In particular, by emphasizing the decline in "collagen and elastin" as a cause - is it really believable that my collagen and elastin just disappeared within five days of my stopping Yasmin, and then came roaring back within five days of restarting Yasmin?

I know that one effective treatment exists, therefore other effective treatments must also exist.

Furthermore, I know that two pumps of oestrogel and 200mg of utrogestan for 12 out of 28 days is partially effective, because - to repeat what I wrote earlier:

It [oestrogel + utrogestan taken cyclically] also improved my eye puffiness by about 50%, which was a dramatic improvement. Much as I had when I briefly went back on Yasmin, I could literally see the skin of my eyelids puckering and tenting as it shrank back into my eye sockets.

It's possible that the treatment I'm currently on is the best treatment I'm ever going to get post-menopause, in which case I have no choice but to accept the situation.

However, I don't want to give up until I've tried everything.

The way the specialist framed her response leaves me feeling fobbed off, rather than reassured that I'm on the path to trying everything.

So: have I tried everything? If not, what else could someone in my situation try?

[orrla]

It reminds me..

when my stomach got more pronounced, at ca 45, I went to see gastrologist...
He told mevto check my birth date on my ID..

Not so long ago, I had that discussion with my GP about my swollen eyelids...

I am 69 now.

Nothing looks the same!

Body changes!😏

Though.

🤗

[sheila99]

You can stay on sequi gel/utro if you choose too. They told me there's a slightly higher risk of endometrial cancer this way but I choose that over being permanently doped from utrogestan. I don't really know what to suggest, perhaps try 3 pumps gel with cyclical utro?

[bombsh3ll]

You can also get Slynd (drospirenone) independently as the progestin to use in your HRT.

This is the same progestin as yaz, and because it is a diuretic it was probably helping you with the puffiness.

I don't know if slynd is widely available on the NHS but you can ask, and if not it probably isn't too expensive to buy. I've seen UK ladies on here taking it.

[TheMidnightSkulker]

You can also get Slynd (drospirenone) independently as the progestin to use in your HRT.

This is the same progestin as yaz, and because it is a diuretic it was probably helping you with the puffiness.

I very specifically begged the specialist to help me find something with a similar composition to Yasmin. There's probably a reason why she didn't suggest Slynd - could it be because I'm postmenopausal? I had understood that Slynd is not allowed postmenopause, but am I wrong about that? I can't quite work it out from what's been posted here.

In any case, the eyebags are dramatically worse since changing to the regime recommended by the specialist.

Last night I snapped and took two utrogestan instead of one, I'm going back to cyclical.

1. If continuous didn't work before, I don't see why it would work now.
2. This way, I'm only changing one thing at a time, so if my eyebags continue to be worse, I'll know it's the increased dose of oestrogen.

[bombsh3ll]

She probably just didn't know.

Or if she is an NHS specialist it might not be funded in your area.

Slynd is quite new to the market anyway, even as a contraceptive, and has only recently started being used as the progestin in HRT.

There's no reason not to use slynd if you are menopausal. It's licenced for birth control up to 55.

Why not read up on it and buy it from an online service. Even if you have to say it's for contraception. At least then you'll know.

[TheMidnightSkulker]

OK, I see. She is a private specialist. Given that it is her entire job, I think she should have known.

I have just tried placing an online order, and they came back to me with more questions. I gave an honest answer.

ETA: the suspense is killing me. I hope they let me have the Slynd.

When I was on Yasmin, my life was perfect. I skipped out to greet each day with a joyful cry of "hello clouds, hello sky". Crocuses sprang out of the ground and sang choruses just for me. Small woodland creatures followed me around.

Well, that's how I remember it, anyway. And I have photographic evidence of lack of eyebags.

[TheMidnightSkulker]

Okay, well. Yesterday I was getting the beginnings of water retention in my lower limbs, and my joints were aching. So I went back to two pumps of oestrogel. I feel better now. Ankles and feet looking OK, no more aching joints.

Today, the online pharmacy declined my request for Slynd: "Sorry slynd is not licensed as the progesterone component of HRT - so cannot be used for protection of the uterus. Hence we cannot prescribe."

 

[bombsh3ll]

Just try somewhere else and say it's for birth control.

It may take years for it to be licenced for MHT, and that may never come. This doesn't mean its use isn't safe or appropriate. There used to be a combination oral HRT called angeliq with drospirenone in it. I think this has now been withdrawn in the UK.

None of the antidepressants so many women our age are rattling with are licensed for menopause treatment either but that doesn't deter prescription of them!

If you try it and it works, then you can have the battle to get it on prescription.

Either as the progestin, or as "birth control" in addition to a licenced progestogen if that works for your clinician.

It is perfectly ok for progestin only contraception to be used alongside HRT.

You could get it like that up to 55.

[TheMidnightSkulker]

Yeah, I could try another place and say it's for birth control. They will definitely ask for my doctor's details, so I assume they'll check with them, and I may be found out.

Another thing I could do is go back to this specialist and say: you wrote this letter, but the letter doesn't mention the central question I brought to the consultation: this treatment worked for me before, the only HRT equivalent would be Angeliq which isn't available now, so are there any other treatments with similar active ingredients that I could try?

She may say: no, you can't try Slynd because reasons. I have a feeling she will say that, given the overall tone of her letter.

The other thing I could do is go back to my GP, explain what happened with the specialist, and say: look, I used to be on Yasmin; when I started HRT there was nothing available that had the same ingredients as Yasmin, but since then Slynd has been released, and according to these guidelines [https://thebms.org.uk/wp-content/uploads/2024/02/15-BMS-TfC-HRT-preparations-and-equivalent-alternatives-JAN2024-B.pdf] it can be prescribed off-label. So: will you prescribe it? If the NHS won't supply it, would you endorse my seeking a private prescription?

Out of these three, approaching my GP feels like it's most likely to succeed. But if it fails, that could be a problem, because the GP is the gatekeeper and I don't want to rub her up the wrong way.

[bombsh3ll]

What would you be "found out" for?

Progestin only birth control is licensed up to age 55.

[TheMidnightSkulker]

Perhaps I'm just overthinking.

The Lowdown doesn't have any Slynd in stock, can anybody recommend a trustworthy online UK pharmacy?

[bombsh3ll]

Oxford online pharmacy

( I have used them and they are reliable)

May be worth phoning first to check stock before filling in reams of medical information.

Treated.com also seem to have it. I have no personal experience ordering with them.

[TheMidnightSkulker]

Cool, thanks for the tipoff.

A propos of nothing, I'm irked by what the specialist wrote about how utrogestan will help with sleep. I explained quite clearly that I don't have trouble sleeping, and that the sedative effect of utrogestan is actually a problem for me. The biggest problem in my life - no exaggeration - is literally WAKING UP, and utrogestan is the opposite of helpful with that problem.

[TheMidnightSkulker]

Hey look everyone, I'm doing bad and naughty lifestyle things like staying up late!

And working at night!

And watching television beaming blue light into my eyes!

And reading my Bible under the covers when I should be asleep!

I'm going to eat after 11pm now! Which is bad somehow!

And worst of all... I think there might be a solitary Coca-Cola in the fridge.

I know it's only a matter of time now. I can hear the sirens in the distance. The lifestyle police are coming for me. But I have accepted the reality of ageing, and decided to drink life's cup to the dregs in the brief instant I have left. I've seen things you people wouldn't believe.