Gentle reader,

I am raising money for a private hysterectomy having become increasingly debilitated. For years I thought the NHS were getting closer to helping me. They are not. My story contains details of gynaecological suffering. Get the popcorn.

BACKGROUND:

This part is likely a very familiar story. 34 years of painful periods, often debilitating and for a few days, life-limiting. As a teen I was told not being able to stand and experiencing suicide ideation on a loop was normal, and I was given Tranexamic acid (useless), antidepressants that made me loopy (at 15!!) then Microgynon to help me manage. The latter made me suicidal within a week, so I came off it.

Throughout my working life I have found myself crippled and unable to stand, losing out on work and respect. I became used to the pattern for decades, got on with it like so many of us. Then the pattern went wild.

PERIMENOPAUSE:

Again, likely familiar to many. Began 6 years ago when I turned 40 and made my life hell. Two years ago, I thankfully got HRT to manage the brain fog as I was having severe memory lapses. Through a menopause specialist, I finally had a diagnosis of PMDD which explains the severe reaction (suicide ideation) to progesterone, as it seems my brain/body cannot process it at all. Nothing feels real, including me. That is very dangerous. I only need to take progesterone if I have a womb.

QUALITY OF LIFE:

I am about to turn 46. I am frequently housebound due to relentless heavy blood loss, which recently became so severe I recently received an iron infusion in hospital because my iron (ferritin) was a 3 and I was anaemic for months - it was like having concussion, and I had to keep working, but could barely function. I live alone. This was very scary. The infusion has helped, but who knows for how long.

WHAT HAVE THEY TESTED FOR?

I have jumped through every hoop in primary care for many years, and been fobbed off with every cheap solution, but never had the underlying cause investigated. I've had numerous pelvic scans, and now three hysteroscopies. I have NEVER been offered an MRI to investigate anything fully. Mefenamic acid hardly helped at all. Iron supplements made me abruptly unwell for hours at a time. A coil is not recommended for PMDD sufferers (plus heavy bleeding means it can fall out) and I survived an horrific failed insertion which I can't live through again.

URGENT:

In April this year, I was referred urgently to a gynaecologist at my local hospital based on all these things, but on chasing 6 weeks later as the app told me to, I was told on the phone that my referral was triaged and downgraded to 'routine'. The average waiting time for a routine gyno consultation is 50 weeks (as opposed to 12 for urgent). So I have to wait a year to even discuss next steps. This news, after a year of committed weekly fighting, made me want to jump out of window (which is the cheapest solution of all for the NHS!).

WHAT I'M LIVING WITH:

My last period/tsunami lasted 7 weeks and I calculate I lost about 3.5 pints of blood in that time (based on the absorbency of a world of products I had to use). As usual, I was up night after night with this and also the horrible stomach upsets triggered by it. I had time off work. This has been happening with increasing ferocity, lasting longer and longer, for some years, including pre-HRT. I've been told 'that's perimenopause'. Joy. Nothing has helped this.

When this occurs, I am not able to go out for a whole day without risking humiliation - being too far from toilets or finding them out of order on trains (I bleed through my clothes in about an hour). I am not able to walk anywhere for longer than about 20 minutes without horrible pelvic pressure. I cannot attend my dance classes or properly exercise. I cannot always attend work meetings in London, which are part of my contract. Every instance of sickness triggers a review meeting, and I've now met the trigger point of 6 individual instances of sick leave (three of which have been hospital procedures requiring surgery and anaesthetic) which means I have to attend a more formal meeting, which I find really stressful. Also, I only have 20 sick days a year on full pay (depleting rapidly), so I'll also incur loss of earnings. This isn't a sustainable situation.

I've had years of this. My work is compromised. I am compromised. I have no other household income or immediate family who can support me.

This is all in my referral. But none of this is life threatening, so who cares, right?

HOUSEBOUND:

I am chronically ill, unnecessarily. I work mostly from home - if I actually had to leave the house every day to work I'd have been fired and become homeless, so I'm fortunate. I cannot contemplate other types of working or living. I cannot do the hiking I so love, or travel at all. I cannot act, sing, dance (what I've done my whole life), because I can't commit to performances due to a degree of physical health I don't have, or is at best fleeting and unpredictable.

But worst of all, I cannot reliably work. Again, not deemed concerning.

SOLUTION:

Every GP I've seen informally agrees a hysterectomy is likely the best option for my wellbeing, given the PMDD, my age, etc, but they cannot action this on the NHS. I would need to wait and talk to the consultant. A year from now. And even then, I'd be added to a waiting list for surgery that could be years off. We're back to jumping out of the window.

Privately, a hysterectomy is about £9,000 - £10,000. I will have to get an interest-free medical loan to cover this, but the monthly repayments (over £400 a month for two years) are not viable. I am trying to raise as much money up front, to reduce the amount I need to borrow, so the repayments are manageable. I am also contacting various charities.

Anything you can donate will directly improve my quality of life. And if oversharing is how I do this, then here we are.

Thanks for reading. May peace, and healthcare, prevail on the Earth.

Photo: Me 11 years ago when I could travel!

Bristol Live article July 2025 https://www.bristolpost.co.uk/news/bristol-news/painful-periods-left-housebound-46-10335594