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[TheMidnightSkulker]

Hello everyone,

I, who have survived unspeakable horrors https://www.menopausematters.co.uk/forum/index.php/topic,70777.0.html, finally got to see my GP this morning, after my December appointment was rescheduled.

The good news is, she immediately agreed to let me have the Slynd. This GP has known me for decades and my history spoke for itself.

The bad news is, she can't prescribe Slynd without a specialist referral.

At this point, I have three weeks of Slynd left. We have to solve this before I run out.

If we're lucky, they'll just approve her request without my needing to be seen, but we can't count on that.

The NHS process for this is so long there's no point in even trying.

I'll have to find a private specialist who can see me within the next three weeks.

So I have been tasked with finding a private specialist who understands Slynd, and she will write the referral letter probably tonight.

Does anybody have any recommendations?

[CLKD]

Which specialist prescribed initially?  Why can't the GP ring the Specialist ?

Which Specialist is she suggesting? 

[TheMidnightSkulker]

No specialist prescribed initially. I went rogue and ordered the Slynd from an online pharmacy.

The GP isn't suggesting a specialist, she tasked me with looking around for a private specialist who understands the pros and cons of Slynd, so that the GP can then prescribe it to me before my supply runs out in three weeks' time.

[bombsh3ll]

I really don't understand why your GP can't just open up the chuffing BNF!!

It's a progestin only contraceptive, prescribing such items is their bread and butter.

What about trying to get an online consultation with Louise Newson's clinic?

Whilst she does evangelise about micronised progesterone, she is also an advocate of individualised care and patient autonomy and I believe her clinic is likely to be supportive.

[CLKD]

BNF

[TheMidnightSkulker]

She just wanted to get the best chance of a sympathetic hearing for me, that's why she told me to ask around first.

Anyway, she gave me the names of two nearby private doctors. I managed to get hold of one, explained everything to the receptionist, and the earliest appointment is 14 February by which time I will have two Slynd left. Also spoke to the secretary who will try to get me in sooner on a cancellation.

[TheMidnightSkulker]

Hmm, now the secretary of the SECOND specialist has emailed me. Saying she's "sure" that specialist will be able to fit me in within three weeks and supply a prescription.

That sounds a lot more of a sure bet than the first one - who doesn't have a cancellation fee. So perhaps I will cancel the first one and set something up with this one.

[bombsh3ll]

You can always buy another 3 months online to tide you over if you are at risk of running out before it is sorted.

I know you shouldn't have to - I shouldn't have to pay for my Zoely either - but where your health and peace of mind is concerned it's worth it.

[TheMidnightSkulker]

Yeah. I managed to get an appointment for 5 February, and since the secretary was sure the consultant would be able to give me a prescription, things are looking up.

Of course if it comes to that, I will go online again. I can't reorder from the place I last got them from, because it's too soon. There are four dummy pills at the end of each pack, which you skip if you're on HRT - which it isn't licensed for.

Yeah, I shouldn't have to pay for any of this - but I seem to be luckier with my GP than most, and this is the path to success, so I can't get too upset.

[flo69]

I'm glad you've been able to get a quick appointment which hopefully will be successful and get you the type of progestin you need.

I sympathise, my GP has lied, explained she has to lie to women because they don't understand (Yes, she really said that when confronted!) and she refused me medicines which she is allowed to prescribe for no good reason at all.

When I tried provera for example, I was as ill as I've ever been in my life, not just physically incapacitated which was bad enough having to take time off work, but I fell straight into a suicidal hole that I couldn't see out of. After three days of this I got through to my GP and told her I was planning my own death and could think of nothing else but how to tell my kids I needed to die. She told me that wasn't a side effect and I couldn't switch HRTs until I'd given it a proper trial and I'd done less than a week so far, I wasn't even trying.
I asked how long, through my sobs, she told me 3 to 6 months, I told her no way would I be able to fight it that long, I'd be dead by suicide, she reminded me again about how progesterone intolerance doesn't happen in menopause, it must be something else, changing progestins won't affect me, silly me  There was no sign of the doctor having any feelings or emotions other than impatience.

I stopped taking the provera pills and was labelled as non compliant for that, but I started feeling better immediately and found that I very much want to live as long as I keep away from provera, utrogestan, cyclogest, levenorgestorel, norethisterone and whatever it was in the mini pill when I tried that too.

I had to do without the oestrogen, but I didn't notice it doing much, so I wasn't bothered.

Of course my doctor must be right, always, so now she hates me and tbh it's fairly mutual.

I was left with no HRT until I got tibolone off a locum and I've never looked back. They say it's safe, the leaflet is meaningless apparantly and tibolone can safely be given "to anyone", I guess they mean any menopausal woman. I've high blood pressure and that's ok. I've been on it over a year now and they don't even do any checks after you start it, not unless you feel unwell and pester them. I had 11 episodes of bleeding in the first year, each lasted five days, they aren't interested at all in that, 20% of women have fake periods on tibolone, I must be one of them, I don't need to keep telling them about it.
I hope I can stay on it forever.
It works to make me feel better, more alive, younger, more alert and energised, but I still have maybe 10% of my hot flashes, mostly because I won't quit coffee!

[CLKD]

That's awful Flo - did U report on the yellow card?

That GP has never been depressed  and needs her head stuck into a loo with the flush pulled. Of course she was covering herself against Litigation.  As well as being unaware of how hormones affect women through the cycle.

Dr Kath Dalton did a lot of research and represented women in Court who had committed murder at certain times of the month.  The National Association for Pre-menstrual Syndrome told me to eat every 3. hours, 24/7 and that helped too.

[TheMidnightSkulker]

Wow @flo69, that is terrible. Stories like yours make me appreciate how lucky I am with my GP. I will say there is nobody at my GP practice that exudes the condescension so evident in others' near-universal experience.

I remember how awful some of the doctors were when I was in my teens and twenties, so that practice really deserves credit for moving with the times. Or rather, the times should be following them.

Anyway, I saw the specialist last Thursday, she read the referral letter, she heard me out. She said she often uses Slynd with her patients but didn't know it was now permitted for use as HRT. Once she'd had a look at the NICE guidelines, she gladly wrote me a private prescription for two months' supply, and from now on my GP will be able to prescribe on the NHS.

So, hopefully that's broken the ice for other androgen-hating patients like me.

While all this was happening, Treated.com sent out my next three months' supply, and I got it today. So I wouldn't have run out, after all. But I can stop that subscription now. It was £50 for three months. Compared to the specialist's £22 for two months, plus £275 for the consultation.

Annoyingly, I had a breakthrough bleed today. No cause for concern, though, as I've only been on continuous for 4.5 months so far. So... whatever.

I'm content. I've been put back to the way I was before. As God intended.

[bombsh3ll]

That's great news! I hope your specialist shares this knowledge with as many of their colleagues in the field as possible.

[TheMidnightSkulker]

For full transparency, I should mention that I have had breakthrough bleeding for 10 of the 15 days since my last post.

The longest stretch of not-bleeding has been 48 hours. I deliberately say "not-bleeding" rather than "without bleeding", in order to better describe the phenomenon.

I see breakthrough bleeding is a widespread problem with Slynd.

I've only been able to find posts from people using it for birth control, and the longest time any one of them has reported continuous bleeding has been nine months, and that person gave up.

Others stuck it out for as long as six months, though it's hard to tell if they really do mean continuous bleeding for that entire time. However, those who stuck it out said they were glad they did so.

I also note that there is an FDA letter to the Slynd manufacturers telling them that users have reported breakthrough bleeding as far in as 13 cycles, and demanding better evidence for their claim that Slynd is a cure for that sort of thing.

Though, again, those who *were* taking Slynd specifically as a cure for unscheduled bleeding said it was still way better than before.

Apparently there are guidelines saying that if the bleed lasts for more than three days, take the placebo pills. Those guidelines are for people using it for birth control, of course. However, if this is still going on by the time I reach the end of the pack, I'm going to take the placebo pills and see if it helps.

I would personally rather spend the next nine months bleeding every single day than go back to the way I was before. In fact, my expectation is that that is exactly what will happen, because all this has just been too good to be true.

After nine months I guess I'll have no choice but to seek advice, at which point they'll take it away from me and I'll go back to being a blobby ghost of my former self.

[Mary G]

4mg is a high dose of progesterone and that could be the problem.  I used Angeliq which contained 2mg of the same progesterone and I didn't have any bleeding so it might be worth cutting the pills in half.  They will last longer that way too.