Thread by @NortherlyRose

#Thread
My #autistic #menopause with and without hormone treatment.
It’s 12 days since my GP told me I had to stop using hormone treatment patches for the next four weeks.
I was horrified.
It’s difficult to describe just how bad things were before I started using HRT patches.
1/

I tried bargaining for a different approach, or a notice period to prepare myself, but it was futile.
My GP emphasised that it was “only for four weeks”.
I reminded her how bad things had been before I started using the patches.
It was non-negotiable so we agreed to disagree.
2/

The fact that I’d started using #HRT was entirely due to serendipity.
Last year I had lots of bothersome physical and cognitive symptoms I hadn’t even associated with #menopause.
I assumed that being post-menopausal, I’d have to accept this as my new normal.
How wrong I was!
3/

Through a stroke of luck I was at an online menopause cafe run by a university.
Hearing other people’s stories made things fall into place.
Very little gets said about #PostMenopause
I had no idea symptoms could be so varied, or last so long.
My very dry eyes were opened!
4/

I had been trying to get a health check from my GP for some time but I wasn’t deemed eligible.
I was so desperate that I’d even considered paying for one privately.
But once I’d checked all my troubling symptoms against the #menopause checklist I realised what the problem was.
5/

Something else I had gleaned from the menopause cafe was that hormone treatment can start later than many people think.
I was 61 but it was still an option for me.
Armed with this information I arranged a consultation with my GP and the next day I began using HRT patches.
6/

I was prescribed very thin translucent #HRT patches.
They stuck on amazingly well.
One had to stay on for 3 days, the next for 4 days, and I got used to the pattern of changing them.
Given how irritating labels in clothing can be, these were really quite comfortable to wear.
7/

The trickiest bit was trying to decipher the mystifying diagram on the pack, explaining how to remove the backing when putting on a patch without touching the sticky surface with your fingers.
I worked it out for myself eventually, using trial and error, and a You Tube video.
8/

The effects were gradual but dramatic.
My joint pain eased, the pervasive dryness that had seemed to affect almost every part of my body resolved, and I was able to think a lot more clearly.
I could multi-task, concentrate without being distracted, and I felt so much calmer.
9/

After a few weeks I had a bit of bleeding, but apart from that there were no negative side effects.
I started exercising more and gave up alcohol completely.
My physical and mental energy increased significantly.
Intermittent bleeding continued, but I wasn’t worried by that.
10/

It’s an incredibly common side effect when using this particular product and it can take quite a long time to resolve.
But my GP had made me promise to tell her if bleeding continued beyond six months, so I did.
Which meant I had to stop #HRT abruptly with no time to adjust.
11/

I’m almost half-way through the 4 weeks now.
Over the first few days I had bad joint pain, then last week I had terrible spasms and cramping.
Worst of all has been the return of anxiety, forgetfulness and lack of focus.
It’s frightening feeling things starting to fall apart.
12/

I still have some patches left from my last prescription and in the last couple of days I’ve been tempted to cheat.
But having suffered for a couple of weeks I might as well carry on. If the bleeding continues I’ll get referred to gynaecology; if it stops I can restart HRT.
13/

There’s a remote possibility of cancer so I understand why my GP was adamant about stopping HRT.
What she didn’t factor in was the impact of a sudden unexpected change on me.
Context and timing were important.
I was already over-stretched by other things that were going on.
14/

We’d discussed breakthrough bleeding before and I thought I could carry on using #HRT patches while waiting for a scan.
I had no idea my GP would try to rule out cancer by stopping HRT then starting it again.
Had I known, I might have waited longer before getting in touch.
15/

The lifeline that #HRT provides was evident from what happened when the UK had shortages in supplies.
People were willing to go anywhere, and do almost anything, to get hold of #HRT.
There are some people HRT does not work for, and others who can’t use it, or prefer not to.
16/

But in my case it has been the most enormous help.
Not only in resolving distressing and debilitating symptoms, but in providing protection against very painful conditions like osteoporosis and vaginal atrophy.
Most importantly of all, HRT has improved my cognition and mood.
17/

HRT made me feel like I was coming alive again, after being adrift in a state of doom, despondency and despair.
Other things contributed to recovery, like my autism diagnosis and psychotherapy, but physiological and psychological benefits of taking hormones were clear for me.
18/

There is so much more we need to discover about living well through #perimenopause, #menopause and beyond.
We’re only just beginning to find out about how autism can affect people’s experiences.
Like every issue affecting older autistic people this is woefully under-explored.
19/

Conversations about peri-menopausal menopausal and post-menopausal health should be initiated by GPs, not left to serendipity.
When I was in full-blown #perimenopause I thought I was developing #dementia because I mislaid things, forgot words, and got lost in familiar places.
20/

My sleeping pattern went haywire which further compromised my ability to cope.
Menopausal mood swings which coincided with autistic meltdown and burnout had a particularly catastrophic effect.
Everything started to feel unstable and precarious, as if I was barely hanging on.
21/

When my GP told me “It’s only four weeks” I said:
“Four weeks is long enough for things to fall apart. What else can I do.”
She said:
“Exercise, eat healthily, look at menopause websites - nothing works as well as HRT.”
But HRT isn’t for everyone, we need other options too.
22/

This has become a damage limitation exercise.
I forgot my bank card when I went to the hairdresser and then left my coat there by mistake.
I decided not to go to a meeting in London.
If I had I’d probably have had a meltdown on the train, and got lost on the Underground.
23/

(CW #suicide)
Some people sail through menopause, barely noticing it, others of us are beset by debilitating symptoms and suffer terribly.
Sadly, some people don’t survive.
I’m very aware of the risk of suicide as a former mental health social worker.
I monitor my own risk.
24/

This is something GPs should be doing in a proactive, preventive way, not just as a response to crisis.
There are almost always options and choices, and the possibility of life improving, but it can be hard to see this through the red mist of menopausal anger and brain fog.
25/

Please don’t worry about me. I’m fine.
I’m taking things very carefully and getting lots of support.
What prompted me to write this was hearing about someone autistic who didn’t make it.
#Menopause can be such a volatile time of life. It’s known as ‘the change’ for a reason.
26/

I could write a thread about why menopausal people feel angry, and why this is justified.
The same for autistic people, many of whom are ‘late recognised’.
Ageing in an ageist society is fraught with injustice too.
No wonder some of us get ‘enraged’ when all of these combine.
27/

That’s why a holistic approach is vitally important.
Medicine can address some but not all of the issues we may face during #autistic #perimenopause #menopause or #PostMenopause.
We need much better access to autism-specific therapy, employment services, and peer support.
28/ end

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