Help me get a hysterectomy for PMDD and hormonal intolerance

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Help me get a hysterectomy for PMDD and hormonal intolerance

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Hey, folks.

I’m Esme. You’re probably here from my Instagram account, @pixiesbigwhy, in which case you already know me (and we can skip the particulars). In case you don’t, here’s a quick run-down: I’m a 27-year-old autistic writer living with a severe form of PMDD and hormone intolerance.

I am raising £6000 (broken down fully below) for an urgent hysterectomy — including oophorectomy — after spending most of my post-puberty life suffering from soul-destroying hormonal intolerance that has robbed me of my health, my stability, and my future.

I first began having symptoms at age 11, when my period started. Almost immediately, I underwent a remarkable personality shift. Unable to concentrate, find joy, or feel anything but misery and despair, I became taciturn and unstable. A formerly budding writer and lifelong wellness advocate, I could no longer live a normal life or even follow a proper sleep-wake cycle — spending most of my days in bed, and my nights awake listening to (concerningly miserable) music. I began self harming and destroying property during my cyclical monthly rages. The brief remissions between periods never gave me enough time to get my life back on track. I was stuck in an endless loop.

I dropped out of education at 14 and considered ending my life the following year.

At 16, my reproductive system spontaneously shut down (possibly due to weight loss, but nobody really knows), and I stopped producing progesterone. When my period stopped — a condition that most people find unpleasant — I didn’t become worse.
In fact, quite the opposite.
In a paradoxical turn of events, my entire life — and personality — changed overnight.

Without a period, I suddenly became upbeat, pragmatic, joyful, and brilliantly focused. I believed (something I now look back on with a sad sort of fondness), that I had undergone a spiritual rebirth.

Nobody had seen anything like it.
I was entirely changed.
My anxiety virtually vanished, and I no longer passed out or struggled with my circadian rhythms.
I became kind, loving, responsible, and ambitious. I even changed my clothing style, because I “wanted people to see my gentleness reflected in my clothes”.

In the three years I lived with hypothalamic amenorrhea (missing periods), I wrote a novella about existentialism, became a dedicated road cyclist, adopted a cat, read over 350 books, adopted an effortless daily routine, disowned a toxic parent, learned to drive, navigated a move to another country, started a business, and even prepared to open a shop in Paris.

And then, seemingly out of nowhere, my period came back.
And I lost everything.

Within a month:
• My breasts had grown 12 cup sizes, a condition known as macromastia
• I became confused, foggy, and unable to think
• I had uncontrollable episodes of violence
• I became delusional
• My limbs swelled up
• I ate over 10,000 calories per day
• I gained 35lbs
• I suffered with rashes, cysts, and mouth sores
• I became depressed
• My circadian rhythms destabilised and I became nocturnal against my will
• I behaved in ways so shockingly out of character that I ended up losing my beloved cats, falling into homelessness, and dragging my wonderful mum into poverty

By the middle of 2018, I had lost everything I worked for — everything I cherished. I now live with CPTSD, and my life is spent dodging and surfing the flashbacks that this disease has brought me.

While my hormones eventually stabilised after the initial surge, I never went back to normal. In fact, my condition progresses with every ovulatory/menstrual cycle.

I’ve tried as many treatments as possible, but none have worked for more than a few months (and most have not worked at all).
I am now profoundly mentally and physically disabled. With every cycle, I battle suicidality, self harm, and a risk of further exposure to hormones that harm me considerably.

Every month, I become a danger to myself and others.

I am currently managing my symptoms with high dose oestrogen therapy, which I access through “speakeasy” methods I won’t mention here. This suppresses my ovulation and prevents my body from producing progesterone.

However, this is a temporary — and dangerous — measure. Because I have an intact uterus, I require cyclical progesterone in order to prevent uterine hyperplasia (thickening) and eventually, cancer.

As we know, even a small fluctuation in my body’s progesterone levels is enough to bring on a sharp neuroendocrine response — with symptoms such as swelling, rashes, rage, and suicidality coming on within 45 minutes of exposure.

The standard treatments for hormonal distress — antidepressants, hormonal contraceptives, CBT — simply do not touch the scale or nature of what I’m living through. Over the years, I’ve sought out and trialled every plausible treatment: synthetic progestins, natural hormones, diet and lifestyle interventions, specialist consultations, functional medicine, and more. I’ve fought tooth and nail to find relief.

None of it has worked — or at least, not for long. Every “solution” has either failed or harmed me. I am now at the end of the line. And I cannot survive another round of trial-and-error medicine.

After years of fighting, I am now taking matters into my own hands. I have arranged to see a successor of the late Dr John Studd — one of the UK’s most respected hormonal specialists and hysterectomy advocate — at his clinic in London. I hope to trial a medication that induces temporary chemical menopause (GnRH therapy), which will suppress all ovarian hormone production. It will mimic the hormone-free state I once thrived in.

Sadly, this is only a stepping stone.

GnRH therapy is not safe long-term unless paired with progesterone — which, as I’ve written, I cannot tolerate. My goal is to use this trial to confirm what my body has already shown me: that I need a permanent solution.

That solution is a total hysterectomy with bilateral oophorectomy (removal of uterus and ovaries).

To do this safely and affordably, I plan to travel to Kaunas, Lithuania in April 2026 and undergo surgery at Nord Clinic, which has a strong international reputation for “patient-centered care”. I’ll be staying for 11 days in a clinic-owned apartment, where I’ll be monitored post-op by a nurse.

This will give me my life back.
For good, this time. ♥️

Here is a breakdown of what I’m fighting for:

• Consultation in London: £350
• London hotel stay: £79
• GnRh (chemical menopause) trial with oestrogen add back: £500-800 (no exact cost available until I see the doctor)
• Follow up via Zoom: £180
• Hysterectomy with oophorectomy: £3420
• Return flights to Lithuania: £50-150 (I can’t get an exact quote until closer to the day, as Ryanair hasn’t released their dates yet)
• 10 day stay at the Nord Clinic apartments: £649

Total (rounded down): £5500

I have set the goal to £6000, because I don’t know whether there will unexpected costs. Anything I don’t need will be declared immediately as a GFM update and will be donated to Medical Aid for Palestinians (MAP).

I will update people both here and on Instagram as often as possible, and you can find everything in my PMDD highlight.

I have never wanted an easy life; merely one I could survive.

All I’m asking for is a chance to live without this unbearable burden: to feel like myself again, to write again, to ride my bike at dawn again, to show up fully in my friendships, to pursue the life I once dreamed of.

I know there are others who suffer as I do, and I hope that by telling my story openly, I can help to open doors for them, too. If I survive this, I vow to spend the rest of my life advocating for folks with diseases like mine — in the hopes that they may survive, too.

Whether you can donate or just share this page with friends, family members, or on your social media…thank you, from everything I am.

This surgery is my rope out of rock-bottom.

Much love (and unrelenting hope),
Esme

Organizer

Esme Jay
Organizer
Wales
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