Broken Glass and Razor Blades

'This is what we call a 'big boy' disease.'

- My incredibly qualified surgeon.

Since getting my Endometriosis diagnosis in January 2021, I have written this blog a couple of times.

It's interesting to read the various drafts back; the collective contents almost culminating in a diary full of the mental and physical ups and downs that come with this disease. There is a reason why I never published them - too personal, not finished, too embarrassing, shitty writing (entirely possible).

It seems pertinent that I'm starting to write this version on the morning of the 11th November in the McNair Clinic for 'Women's Services' (okay 1950's) in the Southwark Wing of Guys Hospital, London. I know this room quite well; the pink chairs, the waiting time sign that never changes and is never accurate. I'm slightly disappointed that I've got GMB on the telly instead of Homes Under the Hammer, but beggars can't be choosers.

I am here for yet another transvaginal ultrasound scan, of which I have had many. I've had two in the past week (brag). But this ones a bit more Hollywood and exciting, as I am finding out how much the disease has spread since my MRI in March.

I'm going to take this moment to address the language surrounding Endo. When I say I have a stage 4 disease, it is not the same as having terminal cancer. For those of you who aren't familiar, Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places. This tissue appears as lesions that are reminiscent of spider webbing, that can spread and fuse internal areas together. It is not terminal, but is also not curable. It is also categorised in stages, but these correlate to the areas of your body that are affected, not the explicitly the severity. I have stage 4, which means it is in my bowel.

On the scale of 'severity', though, I would say I am up there. The scan I mentioned earlier ended up showing that not only are my ovaries stuck together, they are also stuck to the lining of my uterus, and the large 6cm endometrioma (cyst) that is attached to my right ovary is also stuck to my bowel. OH, and I have a nodule in my vaginal wall as the cherry on top of the already depressing cream pie (pardon the expression.) Basically my insides are getting all too cosy for my liking and deciding life is better together, which I respect but also can't help but fundamentally disagree with.

The scan was painful. I had a lovely doctor and a lovely consultant and a lovely nurse squeezing my arm and apologising every few minutes, but a lubed up stick pressing into scar tissue for 20 minutes is not a walk in the park. I just grit my teeth, stared at the ceiling and swallowed it. I've had better experiences than this, and much, much worse. It's very hard to compartmentalise things being inserted into you for different reasons and in different contexts, which I have spoken more about in my blog from last year Becoming Unstuck. But today was doable, so I headed onto the riverbank, bought an overpriced sandwich, took a few deep breaths into the Thames then got onto the train home.

I think the reason why I am almost definitely going to post this version (if you're reading this then yay! I did it!) is that I really wanted and needed a frank and balanced account of someones experience when I first was diagnosed. I followed a few instagram hashtag endo warriors and read a few blogs, but most of them just caused me into a spiral of panic and anxiety. This one poor girl in Australia is in hospital more times than I've had hot dinners, and to be honest, she looks bloody dreadful most of the time. I have to remind myself that she only shows the times that she is suffering, as is the nature of her page, but it's still concerning. Basically I could only find one school of thought - its a lifelong disease that will make your life hell, you will never be a mother, you will constantly shit yourself and you can never eat bread again.

BUT. Almost a year later, I am here to tell you that's not necessarily true.

Clearly, I cannot speak for everyones experience and I am not here to deny that Endometriosis isn't detrimental to peoples physical and mental health. Some doctors do not take these symptoms seriously, and due to the facts that women's reproductive health is woefully under researched, it takes on average a person 9 YEARS to get a diagnosis and any sort of treatment. Read that again.

I have friends who know full well they have Endometriosis and are years into the process of persuading healthcare professionals that there is something wrong with them. Loss of earnings for time taken off work during their periods, throwing up in pain for a week every month. Its fucking horrendous and gives me major survivors guilt. Which is fucked, really. Because I am, too, very much in the thick of it.

The most common thing I am asked is how I was diagnosed, and what journey I took to get there. Let me break it down, roughly, here:

Age 13 - Have my first burst ovarian cyst and ruin a sleepover. Family GP tells me and my Mum I need to go on the pill to stop them, for fear of - you guessed it - eNdoMeTriOsiS........

Age 17 - Have my first ovarian cyst in 4 years and faint on the way home from school. Looking like this process may be less 'treatable' than first thought.

Age 25 - Have first abnormal smear. In the process of taking biopsies and scraping out abnormal cells, my dodgy ovaries are spotted. More tests needed.

Age 25 - Start feeling regular pain during penetration (oi oi) for the first time. Put it down to possible vaginismus and/or trauma from past procedures. Find ways to get round it though (oi oi).

Age 26 - Through therapy, I come to terms with repressed sexual trauma from an experience during my first ever transvaginal exam. More on that again here. Pain during sex and constant rage at the thought of intimacy somewhat explained. Tick!

Age 27 - Lockdown. I dont have a bowel movement for almost a month. Doctors diagnose stress and *mild* IBS. Starts to seem less *mild* when I faint trying to do up my trainers. Mmmmkay.

Age 27 - Doctors suggest that pain and bowel problems could be linked to ovaries. I vehemently deny any involvement with the sticky twins (ovaries) because they really have had enough screen time at this point. They rightfully ignore me and push forward with investigating.

Age 27 (big year, clearly) - Transvaginal, Ultrasound and MRI confirm a big old delicious endometrioma growth on my right ovary. Mission accomplished, my induction into the Endo-warrior-girl-boss-army complete. Put on waiting list for a laparoscopy (an essential operation to cut away all the scar tissue, and the only accurate way to diagnose the disease.) Told to sit tight, COVID will not help the wait time. The go to treatment for Endo is the pill, but due to my abnormal smear I am too high risk. I am given a shit load of paracetamol and a pat on the back and off I go.

Aged 28 - Have a big needle full of Zoladex injected into my stomach and have early menopause triggered in a bid to stop the spread. Fall into an instant state of despair, cry every time I put clothes on and try to quit my job. Thankfully they also ignored me. Refuse anymore treatment and my lovely specialist finds me a new pill that hopefully won't get all cancer-y.

Note: Please have endless patience with menopausal people; it is a fucking rollercoaster and I only did it for a month. I've only just stopped having hot flushes and needing the fan on full blast. Poor Ben was freezing, bless him

Aged 28, nearly 29 - Still waiting for op. I am told they do *one a month* as it is a very complex procedure. I am advised to freeze my eggs before surgery for fear of further damage to the ovaries. I finally sit down to write this bloody blog.

A friend of mine shared an instragram post yesterday which made me stop in my tracks. It is created by the talented @/ms_creilly and @jiazilla and can be found here. In it they list all the ways, with beautifully poignant images, of what Endometriosis may feel like to some people.

It feels like cigarettes are being put out all over my lower back.

It feels like my uterus is filled with acid and broken glass.

It feels like someone is peeling the skin on the tops of my thighs.

It feels like the lower half of my body has been replaced with sandbags.

It feels like someone is blowing my uterus like a balloon and its going to burst through my skin.

It feels like fire ants are eating my organs.

It feels like a giant is pulling my hips apart.

It feels like someone is operating on me whilst I'm awake.

...Hm.

I was recently asked by a mutual friend to talk to a women who was newly diagnosed. She wanted to talk to me in hope that I could shed some light on how to help her symptoms; to show some solidarity in how she was feeling. She listed how she felt, and they were similar to the images above. 'Does it feel like you are being stabbed in the stomach with a hot knife?'

'...No.' I answered.

'A hot poker in your groin?'

'Not really.'

'Oh... Okay.'

It was an awkward conversation that left me feeling guilty and embarrassed. This women was looking to me in solidarity, but I inadvertently but almost certainly left her feeling even more alone and afraid. I had the same pit in my stomach that I felt reading that instagram post - a tiny voice saying 'what if it doesn't feel like that?'

I have laid in bed, pre and post diagnosis, and have not seen a way out. I've been misdiagnosed with IBS, acute stress - even the big C has been thrown around a couple of times. I have had to stay in a hot bath for most of the day whilst heaving into the toilet like a pre-mestrual Jean-Paul Marat. I've cancelled plans. I have felt guilt and shame around sex. I have stared at the ultrasound screen, waiting for the nurse to tell me I cannot have children. I've had panic attacks realising that I will never, ever be rid of this condition.

But Endometriosis is not a death sentence. Not only that - I have a fucking great life.

I want to list a few things that I am eternally grateful for in this process.

1) I live in a country that has a free National Health Service. Unlike that poor gal in Australia, every time I have a flare up or need an MRI I don't need to pay thousands to get treatment.

2) Thanks to my partner's job, I have access to private fertility care. You can access some services on the NHS but I think charges may still apply depending on your circumstances. Everyone's fertility journey is very personal and I may talk about it in more detail in the future, but I have options, and that's the most important thing.

3) I have a job that is flexible enough that I can not only work from home with a hot water bottle (front and back) on bad days, I can also take time off to go to the hospital if I need to, like today.

4) I have a quality of life. I eat everything I want (but still have to be mindful of flare ups. Cheese, I love you and I can never quit you, but damn you make me ill) and I can maintain a relationship and a social life whilst navigating my symptoms. I can exercise to an extent - I have an incredibly understanding and patient Personal Trainer Kat who finds all the ways I can navigate how I'm feeling on that day whilst still feeling fit and healthy - any flare up doesn't stop me for long. I've signed up to a 10k Tough Mudder next year for crying out loud!

5) and most importantly... I got a diagnosis in the first place.

For those of you who longing for a diagnosis, or are reading this thinking it sounds all too familiar to you, your sister or friend, my heart goes out to you. One day you will get there; the right doctor will listen to you, and you will find some relief. Your condition may get worse, but it also may stay the same, or even disappear completely; such is the nature of the elusive Endo spider web. But i guess I wanted this blog to basically say that it is awful and take all the time you need to be sad and in pain, but that feeling will not define your entire life, which is what I was led to believe.

I am so happy I finally wrote this fucking thing.

I'm off to have a massive cheesy risotto to celebrate.