A. Rogers takes us through her experience of living with Endometriosis.
Endometriosis. A chronic, incurable, painful disease that affects 1 in 10 women. An illness that causes havoc in women’s lives: infertility, chronic fatigue, chronic pain, hormonal imbalance, painful sex - to name a few. Yet it is also a disease that it under researched and under funded, a disease that doctors do not know enough about and still a disease that affects 10% of the female population. March is endometriosis awareness month, and I am going to share my story in the hope that it will help other women find a diagnosis.
This is my story; everyone's is different, but the more we talk about female health issues, the more awareness we raise. Female health is not taboo, it is normal, and it should not be dismissed.
PSHE, wellbeing, PCSHE, General Studies. Whatever you call it - we were all taught it at school. It probably consisted of a one hour period, once a week covering social, physical, and emotional topics such as drugs, sex, wellbeing, and development. I think every girl remembers their first lesson on periods. Parents get sent letters the week before; one girl starts murmuring about what they're going to teach us and the whole year *FREAKS* out. The lesson finally rolls around, and they start talking us through different types of sanitary products, how our bodies may change, and also different types of contraception. I remember two distinct parts of my first lesson.
Firstly, I refused to touch a tampon. I thought it was dirty and taboo. Why was this ingrained in me at age 10? Why was I so afraid of a natural female process that millions of women before me have experienced, and millions of women after me will experience?
Secondly, when the teacher started discussing how our bodies may change when we hit puberty, I remember her saying how some women experience cramps during their periods, 'Nothing that a hot water bottle and paracetamol can't solve!' she said. Oh boy, how wrong she was. Nothing about female health issues was mentioned. Age 10 I didn't know what Endometriosis was.
'I thought - periods are the best thing ever.'
I got my period pretty late compared to the rest of my friends, just before my fifteenth birthday. When I got it, I didn't know what most of the fuss was about and got on with my day. The next day, I got my first cramp. It was a Saturday and during a chemistry lesson (Yes, we love Saturday school). It wasn't bad, but I excused myself from the lesson, went to the Nurse, and told her I had cramps. I got to miss the class and watch TV with a hot water bottle. This is the LIFE; I thought - periods are the best thing ever. I had just got the biggest get out of jail free card. The next few years were pretty uneventful. My period was fine: consistent and short. I even summited Mount Kilimanjaro when I was on my period. It wasn't a big deal. However, as I entered 6th form, I started to exercise more, and weird things started to happen. Following intense exercise, I used to get (and I cannot stress this enough) excruciating pain in my lower left abdomen and then faint. Pain that felt like something was stabbing me. The school nurse banned me from running, and life moved on. It kept happening, so I went to see a *male* doctor (not a gynae). After a few scans, he said I was eating the wrong thing, and my sugar levels dropped when I was running. Cool, I thought, no big deal. It kept happening, but I didn't think much of it. Age 16: I had no idea what Endometriosis was.
Fast forward a few years, and I had just started uni. Painful periods were a part of my life, but I didn't make a fuss. I enjoyed being at University and throwing myself into every opportunity. My period came, and I would sit out from a few lacrosse sessions, but apart from that - I was all good! Then, in the spring term, physical exhaustion and fatigue hit. I couldn't go a day without napping in the afternoon, despite sleeping through the whole night. I thought that I had hit freshers a little too hard, and looked forward to the summer holidays. Again, I thought nothing of it! Summer passed and my symptoms remained consistent.
At the start of second year, I signed up to run a half marathon with one of my best friends. A few days after the half marathon I started spotting (no where near my period), and it just wouldn't stop. A few days after the half marathon, I found myself in A&E. I brushed off comments about Endometriosis. It couldn't be: my periods weren't THAT bad. There was no resolution from the hospital that night, so I just kept going on with my life. I continued to play sport, but now my body was taking a hit. I barely had the energy to go the day and would end up napping most afternoons. I saw a *male* Gynecologist about a month after the A&E trip. I went through my symptoms, had an internal scan, and he was adamant that I was not suffering from Endometriosis. The Doctor suggested I adopt a diet that didn't contain certain foods like onions (wtf??!) and also took Codeine to manage my pain. I took this onboard and continued for about another month or so.
Endometriosis still wasn't really on my radar.
I was getting more ill, visibly now, and even small things I used to love were becoming a chore. Lacrosse was exhausting, gyming was as equally tiring and socialising wasn't even on my radar. I went back to the same Doctor, and again he was confident that it was not Endometriosis. He was, however, able to identify what type of car I drove from my car key. Congratulations, Doctor, you identified what car I drove - above doing your job and correctly diagnosing me.
Christmas holidays rolled around, and I was grateful to be at home. My symptoms didn't disappear (I spent most of Christmas day in bed), but eating well and getting enough sleep helped my symptoms. Going back to University in January, I knew I was not well. I was exhausted and gaunt. This exhaustion is not a sleepy tiredness (although I do sleep it off), it is a mental and a physical exhaustion; Brain fog (this is the weirdest thing unless you have experienced it) combined with aching muscles. After deciding enough was enough, I finally got an appointment with a female specialist.
[At these appointments, the doctors have a Nurse (a sonographer) scan you so that they can discuss the findings with you. Endometriosis can only be diagnosed through an operation, but scans help the doctors be more confident before operating. The internal scans aren't very pleasant, but they're not painful.]
Unlike previous sonographers, this sonographer was sure within minutes of starting the scan that I had got Endometriosis. My internal organs were stuck in place due to endometrial tissue growing on the outside of my womb and fallopian tubes. I wonder how the previous sonographer missed this - were they not informed about an issue that affects 1/10 women? Following the appointment, it was decided I would have surgery to remove the endometrial tissue the next week. The operation was smooth, a quick 45-minute laparoscopy with two keyholes.
Finally: I knew, at age 20, I had Endometriosis.
This is my story - everyone has one, but I hope it raises awareness for an issue that we should be taught about at school. 1 in 10 women suffer from the disease, yet the awareness is in no way paralleled. For years, I believed that my symptoms weren’t bad enough and periods were just meant to be painful. This isn’t the case; periods should not be stopping women from carrying out day to day tasks!!! Listen to your body, and keep searching until you find someone who will listen.
A few final tips:
1. You know your body better than anyone else. Don't let anyone tell you that you're fine. Keep pushing for scans, see new doctors (female ones!), and don't accept no for an answer!
2. Pain medication is great but don't rely on it. Get to the root of the problem and solve it. If I had listened to the doctor back in November who gave me codeine and told me I would be fine - chances are I probably wouldn't have been able to have kids in a few years.
3. Hot water bottles are amazing - everyone should have one
4. Buy ‘IN THE FLO’ and ‘WOMAN CODE’ (by Alissa Vitti) - life changer for anyone with a womb or hormone issues. This should be taught in schools. I needed this book when I was 16.
5. Talk to people about female health. The more we talk about it, the less taboo it becomes
6. Love your body, and listen to it! You only have one so take care of it!
7. Endometriosis is a long term chronic condition that cannot be brushed under the carpet. The impact that endometriosis can have on all aspects of a person's life - both physically and mentally must be recognised.
8. Be your own best advocate you can be for it!
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A. Rogers
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