Burst

Well well well, fancy seeing you here! I know it has been a few weeks since my last post but it's been a turbulent time as those of you who read my author's notes will know. This is what this 'blog' story is about. I have my diagnosis!

If you would like to skip all the medical stuff (TW for blood, panic attacks, nausea and descriptions of depression), feel free to skip to the end where I will put a statement detailing exactly what is going on in plain terms.

Without further ado, I will begin:

In 2020, I was worried about university and work attendance. I noticed that I felt less able to get up in the mornings and attend university. I was drinking far more caffeine than I should have been, and also eating very high-energy foods to try and keep myself awake during this time. I went along to the GP who tested my hormone profile.

What came back were a few little lows and highs, but nothing to worry about, except one. 'Serum sex hormone binding globulin (SHBG)', which measured at 27nmol/L. For reference, a regular range for this protein is 34-148nmol/L.

SHBG is a protein that binds to sex hormones in the body and transports them in inactive forms. This process regulates the levels of sex hormones in the body. These include oestrogen, progesterone, and testosterone.

I had a phone call from a lovely lady about this. She told me very reassuringly to not worry and that I was not dangerously low. She told me to just 'love myself' and 'relax'. Looking back at this, I can't help but feel like she was brushing me off.

Being my naturally anxious self, I checked the results several times. Upon reexamination, I could see that someone had written something on the printed blood test document:

?PCOS

Well, then COVID happened, and any worry I had about the ?PCOS was replaced with horrible COVID fear. Nevertheless, I continued having chronic fatigue and soon more symptoms began to appear.

• Weight gain
• Hair loss
• Skin problems
• Lighter periods
• Constant menstrual pain
• Changes in eye dilation
• Lumps in my breasts
• Mood swings

These happened fairly rapidly, over the course of less than a year. But with COVID around, I felt that getting them checked was frivolous.

My mother, however, did not. She dragged me to the eye and breast clinics to get the most worrying conditions checked out. The eye clinic manually dilated my eyes using drops and examined them thoroughly, while my breasts were checked thrice by two nurses and a specialist.

The results from the eye tests suggested that the changes in eye dilation were within regular parameters, and the results from the breast exams suggested hormonal tissue change.

Both were nothing to worry about.

That was a trend for all my symptoms, popping up and then disappearing like an old whack-a-mole machine...

Throughout all this, I had a running theme of gaslighting in my head:

"If they aren't constant, then I'm not sick!"

"Most women get period pain, but not every day...I must just be unlucky."

"I'm probably being sensitive."

Then, the symptoms got worse. In 2023, I would sleep in until 5pm, live 4 hours of my day and then sleep again. As I had graduated and earned a Master's degree the same year, I think I assumed that I was recovering from that. So, I took a year off, deciding to wait to get a job until the 'burnout' passed.

Except it didn't.

The tiredness would last for months, and then I would have a very energetic month, only for the tiredness to come back. Whack-a-mole again.

By this time, the mood swings had gotten very bad, I was lashing out in anger at those I loved - over the smallest things. My default emotions changed from curiosity and contentment to anger and contempt.

Then, in July 2024, I collapsed at the gym.

I had been doing some weighted squats with my friend and gym buddy when I felt overcome with chills, dizziness and nausea. I lay down on the floor with my feet up to prevent passing out.

My friend took me home quickly. On the journey, I counted 10 dizziness spells with 3 potential losses of consciousness. I ended up at home, laying down on the dog bed, with my feet propped up on a chair.

I booked an appointment with the GP the next day.

Naturally, there was a week or two to wait, but unfortunately, my health didn't last that long.

I was in a pub with the same friend who gyms with me, when I collapsed again. I went to the bathroom for some privacy and ended up sat on top of one of the toilets with the room spinning. This time I could taste metal in my mouth.

I called 111 (the UK non-emergency line) for help, but they categorised my episode as an emergency. In an attempt to not make more of a fuss than I already had, I tried to persuade them it wasn't that bad (more fool me).

On the drive home from the pub, something in me snapped, I asked my friend to pull over and shoved my phone at my other friend...

"Ambulance." I stated.

I was experiencing what can only be described as extreme discomfort. There was no localised pain but so many symptoms all over my body all screaming for attention. I felt hot and cold all over, so nauseas I didn't think it was possible to feel that without being sick or passing out. In fact, I would have preferred to be sick or pass out, then I would understand at least one symptom. I was confused, upset, trapped within my body, and so scared.

I ended up in A&E where they attached me to a drip. Based on my symptoms, they diagnosed me with severe dehydration and a tummy bug. I was there for over 12 hours (with my mother - who insisted on staying every minute) and went home feeling slightly better.

However, during my stay at A&E, the doctor assigned to my case did one amazing thing.

She really listened to all of my symptoms. She heard exactly what I was saying about the fatigue, the inflammation, and how scared I was of these whack-a-mole symptoms.

She booked me in for an internal ultrasound. It was a six-week wait, but in hindsight, I am so glad she started the process so early for me. I am so grateful she was my doctor that night.

I went home for a few days, exhausted but stable.

Lo and behold, I had another episode very soon.

I was home alone and afraid of passing out and vomiting at the same time, meaning I'd choke, so I called an ambulance.

They sent me to the surgical emergency unit based on my symptoms, anticipating gallstones.

There I was examined and blood tests were done. My immune response markers were not elevated so they categorised me as a non-emergency, sending me home for the weekend before an external ultrasound on the next Monday.

The ultrasound came back, with no gallstones.

However, shaking, crying and hurting in the waiting room, I finally started to realise this may be something more serious.

I was then diagnosed with severe gastritis, and given some stern pills to deal with it. One type to settle my stomach, one type for nausea and one type for pain.

I took the one to settle my stomach. I was afraid to take the others, once again gaslighting myself with 'it's not that bad...it's not that bad...'.

Slowly, nausea passed, and then reoccurred a week later, I was given an extended prescription for the stomach calming drug, totalling 7 weeks.

Some symptoms got better, some got worse. Whack - a - bloody - mole!

I changed my diet drastically, reduced refined sugar, no caffeine, no lactose - trying to make any and all food I ate low impact on the stomach. I had also read managing blood sugar and cortisol helps with PCOS, so it was worth a try.

Soon enough, the time for my internal ultrasound had come.

I'll skip over some details here because it was an awful experience. The ultrasound probe went EXACTLY where you are thinking it went, it was painful, I was on my period at the time, and it was undignified and messy.

But at the end of it, I had my result.

Evidence of burst ovarian cyst on left ovary, no sign of further cysts.

I remember I was sitting on my sofa, a week after the ultrasound, cuddled up to my dog Cosmo when I heard the news. I pressed the red 'hang up' button on the phone, placed it to the side and just cried. I cried and cried into Cosmo's fur.

I was heartbroken that I would have this chronic condition potentially all of my life, I was ecstatic that it was not anything more serious, I felt validated by the discovery, but it was little comfort having been let down by myself and others along the way.

There was a lot to process.

That is where you find me now. I have a hormone imbalance that leads to polycystic ovaries, I have had a cyst, and it has burst, causing me pain and comorbidities.

I do not know what life is going to look like from now on. I do not know whether I will be able to manage work, especially full-time, with chronic PCOS. I do not know how much this is going to hold me back from doing. That is something that I will figure out in time.

One thing it does not impact is my escape from pain: writing. I have found during this period of illness, I have felt more encouraged to write than ever. It is my support.

Nearly three months of severe symptoms and five years of questioning have come to an end. For that, at least, I am grateful.

Wish me luck, and if there are any cyst-ers (women with PCOS), in the comments, I would love any and all advice!

Thank you,

TWW