TW: discussions of endometriosis, mental health.
On January 28, 2022, I was diagnosed with endometriosis. Endometriosis is a chronic condition where tissue similar to the lining of the womb starts to grow in other places such as the ovaries and fallopian tubes.
I always considered myself lucky when it came to things like menstrual cramps, I started my first period at the age of 11 and all through secondary school I never majorly suffered with severe cramping and if I did on the odd occasion, it’s nothing paracetamol wouldn’t fix. This remained the case for nearly 10 years until October 2021.
In October of last year the pain started. At first it was just a pinching on my sides but that soon became the most excruciating feeling I’ve experienced. A pain I can only describe as what felt like my entire lower half of my body was being put in a shredder, and even though I am on contraception, I considered the idea I could be in labour, I’ve seen multiple stories of girls that didn’t know they were pregnant, and I’d be lying if this didn’t cross my mind. The pain continued and continued, eventually getting to the point that I was being sick, had a high fever and erratically shaking. I spent the whole day in bed sleeping as i was so exhausted and the pain eventually went that evening. The next morning I started my period and so I thought nothing more of what had occurred the day previously.
Exactly a month later, the pain returned but this time I ended up going to hospital. I had the exact same symptoms and pain as I had before but this time it felt worse, I was being sick more, and the nurse couldn’t touch my stomach without me crying in agony. I was kept in hospital for a few days and after all kind of tests and scans they put it down to pelvic inflammatory disease. I did have an ultrasound and the nurses discovered an ovarian cyst, which they reassured me was not what was causing the pain. I was then sent home with antibiotics and left feeling very confused about multiple things. As someone that suffers majorly with anxiety every possible question and thought was going through my head.
Just like clockwork, a month later the pain came again and I felt like I’d gotten nowhere. After doing all the tests again they couldn’t put their finger on what was wrong with me, But my cyst was believed to be a dermoid cyst which is a sack filled with random things like fat, hair and sometimes even teeth. Dermoid cysts typically are not a problem unless they leak or grow exponentially over a small out of time.
While I was talking to my doctor at the hospital I queried if my pain could be caused by endometriosis, at this moment in time I had no idea what it was but one of my aunts had messaged me and told me to mention it, as she has severe endometriosis which was diagnosed too late and unfortunately has resulted in her being infertile. When I asked the doctor, she replied upfront and confidently “no”. She said “it’s not that”. The idea was brushed off straight away.
At this point I was getting frustrated and embarrassed. I had to keep having days off work last minute due to the pain and I had no answers. I felt like the nurses and doctors weren’t taking me seriously because of my age. So in January when the monthly pain arrived even worse than before, I demanded I have surgery to remove/drain the cyst. I had to fight for it but eventually they made it happen.
When I woke up it wasn’t long before the surgeon came and spoke to me, and told me I had mild endometriosis on my fallopian tubes. That was it. Just as quickly as she came over, she was gone again. My emotions were all over the place, I was happy the surgery went well and I had a diagnosis, I was angry about the nurse prior insinuating there was no chance I could have endometriosis, I felt scared because I still had no idea what it was. So there I was left in my hospital bed forced to google what it was as none of the doctors or nurses had a clear answer for me.
I’ve done hours and hours of research to try and fully understand this condition, why it happens, how it happens and if it’s curable. The answers I have found are that unfortunately it’s not curable, but there are things women can do to decrease the pain that comes along with it like taking more contraception; the aim is to stop your periods so the lining doesn’t shed, which is what causes the pain. In severe cases of endometriosis surgery is an option to clear out some of the tissue but unfortunately with this condition, many women wait on average 7 1/2 years for a diagnosis but at that point it’s too late. Endometriosis affects around 1.5 million women in the UK alone and is the second most common gynaecological condition, so how come I had never heard of it? And why is it so hard to get a diagnosis?
The only way of getting a certain diagnosis is by a surgery. MRIs can detect endometriosis but only in severe cases and even then it’s not guaranteed. There are organisations and scientists working to try and get a better understanding of the condition but at the moment there is very little knowledge about it. Thankfully it is not life-threatening, but it does have a major impact on the quality of life of women all over the world, most not even knowing they have it.
There are four different stages of endometriosis: minimal, mild, moderate and severe. All coming with different symptoms and consequences, the most common being excruciating menstrual cramps that affect your day-to-day life and in severe cases, infertility.
I consider myself extremely lucky that I have been diagnosed after four months of symptoms, even though I now have to live with this condition and the negatives that come with it, I feel relief that I have answers. And I can start my journey of living with endometriosis.
The first month I really struggled with my mental health, I woke up every day anxious about whether I’d get the pain and it made me scared to go out and do things. I’ve accepted that this is now a part of me and although I do have days I really don’t want to go to work, I’m finding that certain foods/drinks can trigger the pain, but since surgery I have found the pain is a lot more tolerable.
There are groups And organisations such as Endometriosis UK and Nancy’s Nook, Who have made it their job to bring awareness to women and MEN about this condition. It’s equally important to educate men on the subject, as I’ve experienced in the past, it’s easy for them to brush off things like menstrual cramps and not take it as serious as they should. Especially from an employer point of view this can become a very daunting and gender biased situation.
I’ve become very open about my body and issues to other women and the more I do, the less embarrassed I feel. Women should be talking to each other, we don’t realise how many other women suffer the same way as we do, we shouldn’t feel ashamed for these things, it’s completely natural and it’s good to share advice and experiences, which is what I hope this does for women that suspect they have not necessarily endometriosis, but anything they feel is unusual for them. I encourage women to go to the doctors if they feel not quite themselves, it’s amazing how well we know our bodies and it’s important we take it seriously no matter how we may feel about it.
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