My experience and thoughts on medical negligence in Women’s health

What Happened:

I have been struggling with a 13.5 cm Borderline ovarian mass. It has been a year now since a cyst was discovered on my ovary and just over 7 months since my right ovary was removed. Over the past year I have been relentlessly disappointed and neglected by medical professionals. 

In March 2021 i made doctors appointment to discuss numerous symptoms including pain during sex, extreme bloating, bleeding after sex, stabbing pains etc.. i was met with complete dismissal and was told that my symptoms were psychosomatic (in my head) and blamed my C-PTSD diagnosis for a pelvic floor dysfunction. I was given antidepressants and the pill then sent away. 

In July I moved to Italy and had an appointment there. A  6 cm cyst was discovered on my ovary which was causing my pain. I was told I would need it surgically removed but that it would be a small procedure. I decided to return to England and go through the NHS. 

I returned a month later and sent my bloods and ultrasounds over to my gp. They were not accepted and I was back at square 1. 

My belly was growing  and I was increasingly in pain. I wrote letters, emails and called every day trying to be seen in person. No one would see me. Eventually I had an ultrasound In late august where it was discovered my cyst had grown to 10.5 cm and was semi tumorous. I was fast tracked for an MRI because they were afraid that it could be cancerous. At this point  it was certain that I would need surgery.

After the MRI results I was still none the wiser about my condition except I was taken off the cancer list. At this point it was September, I looked around 7 months pregnant and was still trying to function normally as a first year student at university.

I can't count how much time I spent on hold, being passed on as someone else's problem and traveling back and forth for appointments fighting to be listened to, all whilst becoming increasingly unwell and incapacitated.  

During this time I was really concerned for my fertility. I was assured by all the doctors I spoke to that my ovary would be fine and my fertility would not be affected. Towards the end of November I finally met with a surgeon who told me that I would have surgery  the following month but they weren't sure they could keep my ovary.

 I had no time to prepare emotionally for the outcome of the surgery and still little idea of my condition. I had not had scanse since September and all I knew was how sick I felt. I had no control over my bowles, a huge heavy lump in my stomach and constant acid reflux. I was huge and exhausted. On top of that I was trying to carry on whilst being interrogated by strangers thinking I was pregnant.  

I awoke on the 21st of december extremely confused and in alot of pain. I spent a day and night in hospital on morphine. my ovary was removed as it was extremely compromised and had grown to 13.5 cm, the size of a large grapefruit or cantaloupe. The histology showed I had developed a borderline tumor. I was sent home from hospital having only been told that my ovary was removed because it looked like it was full of “Bad stuff” . I was given a few spare dressings and told to buy some paracetamol on the way out.

Since, I have been informed that because I was left to suffer for so long that the tumor became borderline, I have a ⅓ chance of it returning on my remaining ovary.

In my post op appointment I was told my left ovary is bulky and covered in cysts. I had to beg for a follow up ultrasound from my gp, who told me it wasn't his problem to organize but the hospitals.Due to the scans, I was sent for bloods. After finally chasing up the results I have been diagnosed with PCOS, which is incurable and means reduced fertility.

So now I have 1 unhealthy ovary, because my pain, symptoms and experiences as a woman were ignored. I was left to suffer for 10 months. If in March I was taken seriously I would have all my organs, no risk to my fertility and no risk of a borderline tumor. I would not still be fighting doctors to listen to me.

My Thoughts:

Now that I can reflect clearly on my experience in women's health it's very easy to see that  what happened is more than bad luck.

First of all, I was not educated about my body. I had not been taught in school what was “normal”. Everyone says losing your virginity hurts, no one tells you sex shouldnt. Pain throughout the month is just put up to your period, and the GP’s holy grail for young women in pain is put her on the Pill. The only thing you learn about fertility is how NOT to become pregnant yet there's an awful lot of sanctity put on preserving this ability.

Unfortunately when you are also told it's nothing by a doctor, you tend to just trust them. I knew there was something wrong but what are you supposed to do if a doctor doesn't care? This kind of dismissal is something I've become accustomed to. During the course of my treatment I felt like a silly little girl kicking up a fuss over nothing. I honestly felt like I was being put in a box as a hysterical woman. And it pisses me off because everything I was concerned about, my ovary, my fertility, my ongoing reproductive health, was sugar coated to me by doctors telling me it's all going to be fine. None of those things turned out fine and all my concerns came true, I was left to suffer until it was too late. 

I learned quickly that I was just supposed to grin and bear my worsening condition. I began to understand the extent to which women are allowed to endure pain and the relationship that has with the idea that to be a woman is to be born with pain. I thought if I were a man no one would let me suffer like this. I would not be told to get on with it with a 13.5 cm mass growing on my testicle. Right from the beginning, my concerns about painfull sex would have been taken seriously, And there would be no box to check as hysterical.

Even post surgery I continue to struggle psychologically. I have had doctors and people simultaneously uphold my fertility as the most important thing about me and at the same time completely neglect it. I'm 21 and I spend so long consumed by my reproductive health. It's hard to be perceived as a pregnant person and have people look at you as though you are growing something beautiful when in reality it's a huge mass making you increasingly sick. Not to mention grappling with missing an ovary. When society largely bases my worth on my ability to reproduce it's very difficult not to feel like my value is now less.

All together, my experience is not original, and was completely avoidable. What's happened to me is not bad luck, it's the result of institutional sexism and medical negligence in women's health.