In the ongoing battle I’m terming Lucy vs The Leak, I was almost taking a short term lead. Naturally dissatisfied with having ruined my life for the previous 2 years, the leak felt it was time to recruit backup to reclaim that lead. Ironically, this back up came in the form of a sort of period because you know leaking fluid from my spine wasn’t enough leaking for one body!
That probably gives it away that this post isn’t my usual neuro ramble, so if periods gross you out then aside from wanting to tell you to get a grip, this post probably isn’t for you!
For those who are new here, hey! I’m Lucy. A 28-year-old who has been something of a medical mystery for over 12 years now. For some reason, my body likes collecting chronic conditions like they’re Pokemon!
Whilst I can think of greater things to be achieving in my 20s, if some good can come from me yapping about my experiences then I’d say that’s a win!
Random but relevant …
I say this isn’t my usual neuro rambles, but naturally, my neuro conundrum isn’t isolated from this series of unfortunate events …
Now, back in 2023, I found myself diagnosed with endometriosis after 8 years of actively being aware of my symptoms, but in hindsight those symptoms had been present for closer to 13 years. I’m talking bleeding may insides out, passing clots the size of tennis balls (again, zero apologies if it grosses you out reading about it … try experiencing it!), cramps resistant to any form of pain relief, nausea, shortness of breath, lower lung pains and fatigue as if I’ve not slept for a decade.
Anyway, post surgery in October 2023, symptoms seem to improve, but not disappear. At least that was the case until a few months after I developed a spinal CSF leak in January 2024 …
Gut feelings …
In October 2025, I told my GP I thought something was really wrong. Actually, I think as early as January 2025 I started telling people I thought something was wrong. Those very heavy and painful periods were quickly disappearing.
Now, by this point in the Lucy vs The Leak battle, the leak was literally running away with it. If you’ve followed this journey, you’ll be all too familiar with the incredibly drastic weight loss I endured curtesy of the uncontrollable and very drug resistant nausea.
As a fairly up-to-speed professional patient, I knew the link between drastic weight loss and the disappearance of periods.
“I suppose that’s one positive to everything that’s going on. Every cloud you know …” ~ The GP in October 2025 when I told her I thought it was something to be concerned about.
I can confirm that it was anything but a silver lining to everything that’s going on.
Fast forwards a few chapters …
Thanks for hopping aboard that whistle stop tour … I welcome you back to the (almost) present day and almost 5 months post that conversation with said GP.
I started to bleed properly for the first time in 12 months, and by that I mean ✨really✨ bleed.
Initially I was horrified because you know it was a shock to the system after so long! I started to tell myself it must mean my body has gained enough weight to reboot my hormones! Then it dawned on me there was no pain, and I really mean no pain at all.
Anybody with endometriosis knows just how painful periods are, and anyone reading the who knows me can confirm I never gifted with a painless cycle!
24 hours passed, but the bleeding didn’t. Instead, I found myself waking feeling nauseous, dizzy, light-headed, sick, fatigued and with an extra sprinkling of a headache. Despite this cocktail of unpleasant symptoms, there were still no abdominal cramps and this didn’t seem right.
Taking on the GP receptionist …
8:03am and I found myself at number 23 in the queue for the infamous battle for a GP appointment. Although credit where it’s due, my GP surgery on the whole is generally pretty good in comparison to many places. Nonetheless, I’ve also won Ticketmaster wars with less stress than I was experiencing this particular morning!
35 minutes later and a receptionist picks up the phone. The conversation goes something like the following:
Me: Hi, can I make an appointment for today please?
Receptionist: I have to inform you the next routine appt is on … can’t remember the date but it was about 6 weeks away!
Me: No, it needs to be today. It’s urgent.
Receptionist: I’m sorry but all the appointments have gone for today. We are fully booked.
Me: **pauses silently in thought for a moment too long**
Receptionist: Can I take a reason for the appointment?
Me: yeah, I have endometriosis and I’m bleeding excessively. Oh and am passing clots the size of tennis balls …
**I paused wondering if that was a massively unwanted overshare**
Receptionist: I can squeeze you in for a telephone call around 14:00.
Me: That will be perfect!
**Apparently the overshare was worth it**
Enter the GP to the chat …
It was some time just after 14:00 when my phone rang. I explained my symptoms to the GP, who I wasn’t familiar with, on the other end of the phone. To my surprise he was incredibly on it! We spoke about the tranexamic acid I’d been prescribed previously, but there were a couple of red flag concerns in his opinion …
- The amount of blood I’d lost in 24 hours.
- The dizziness, lightheadedness, nausea, fatigue and headache I now had.
- The fact this was my first proper period in 12 months.
- I have surgically diagnosed endometriosis that hadn’t been reviewed in 2 years.
Then the dreaded words left his mouth …
“I would like you to get checked out at A&E Lucy …”
I sighed, internally screamed, slumped my shoulders and rolled my eyes simultaneously.
No hope … as it’s locally known …
After collecting my referral letter from the GP surgery, I found myself on my way to a hospital that goes by the nickname of “No Hope.” If you are not familiar with the hospital in question, its official name is “Good Hope.” I’ll let you draw your own conclusions from the real name vs nickname situation!
Despite being now around 16:00 on a Tuesday, it remained a stomach sinking sight the moment I stepped out of the revolving door.
Thankfully, I must have banked up enough A&E loyalty points for the hospital gods to grant me a fast track pass! A quick flash of my referral letter to the triage nurse and I was on my way to the other side of the universe (hospital) where the gynae assessment unit could be found.
Gynae Assessment Unit …
I understand obs and gynae are a combined specialty, but at the same time, walking into a maternity unit with a gynae related issue always feels like an extra kick in the gut. Although, I’ll save that philosophical debate for another time …
In spite of my refusal to call the hospital anything other than t’s no hope nickname, I must admit that the staff on this gynae unit almost changed my mind.
The nurse who triaged me, whilst being absolutely bewildered by my medical history, was one of the most empathetic people I’ve met. So empathetic that as soon as my bloods were taken they actively cleared a bed for me to be able to lie down. Although, I think the fact I looked more like Casper the ghost than Casper the ghost paired with the fact I couldn’t keep my eyes open probably helped my case!
A couple of naps later …
When it was my turn to be seen, the on call gynae registrar summoned me to one of the consultation rooms. I explained everything to her including the side (main) quest story of my spinal leak!
After a lot of questions, some confused looks and a discussion with somebody more senior, she explained that my Ferritin levels suggested iron deficiency anaemia which considering my levels had dropped from 165 (correct as per my blood test 2 months previously) to 36 wasn’t really a mind-blowing revelation.
She explained that the bleeding I experienced wasn’t a proper period, hence the lack of pain associated with it. Instead, it was a result of my lack of periods for the past 12 months, and in non-medical terms the lining build up was too heavy and just collapsed.
Lucy vs the Leak (again) …
The issue of my spinal leak remained a brick wall in front of any next steps. Hormonal medication to try and regulate my periods remained absolutely out of the picture due to risk of stroke (**disclaimer this is not a generic claim and is absolutely specific to my case).
This poor registrar didn’t have the power, or the neurological expertise, to make any definitive decisions. However, after asking me where my neuro team are based, I’m not sure she was even close to predicting this response:
Well, one third can be found at Royal Stoke, a second third at the Royal Free in London and the final third more recently at the National Hospital for Neurology and Neurosurgery at UCLH! Unfortunately, they don’t really communicate with each other!
I wish anybody the greatest amount of luck, but I genuinely believe winning the lottery to be easier than getting communication from a neuro consultant!
After much deliberation from the registrar, I was discharged with a month prescription for iron tablets, a request for an urgent pelvic ultrasound, and a promised follow up from one of the gynae consultants in outpatients.
The aftermath …
I can confirm, now 4 weeks post this side quest, the internal ultrasound happened 7 days later. The follow up appointment including the results of this ultrasound are still circulating in the realms of the unknown!
However, the radio silence does reaffirm my instance on the use of the hospital’s nickname of No Hope rather than its official name of Good Hope!
As for my iron levels, it remains unknown if they have responded positively to the tablets or not, but at the time writing I can’t say I feel any benefit from them!
On a more serious note:
- A sudden change in your period is not normal.
- Your period becoming suddenly lighter, or disappearing altogether is not normal.
May your symptoms always be believed.
Your favourite headache x
Discover more from Not just a headache, honey
Subscribe to get the latest posts sent to your email.