You can’t see it, but it’s not entirely invisible. You go years without a diagnosis being treated like you’re crazy or a hypochondriac. You have your ‘friends’ not believe you and demean you when you stay home from school. No one understands it until they experience it.
This is going to be graphic, opinionated and gross in parts. We need to end the silence and be real.
This is my story with Endometriosis.
From my very first period I’ve found them awful. Absolutely painful as if a literal hand is trying to pull my pelvic organs out through my vagina, graphic thought but true. I always had a really heavy, irregular period. It either lasted 2 days or went on for a couple of months. I took many days off high school because I just couldn’t get out of bed from pain, which would be met with “I go to school with my period and I’m fine” or “you’re just over reacting”.
I went from doctor to doctor trying to figure out what’s wrong, I was just put on another pill and told that my period isn’t as painful as I think it is. By my mid to late teens it progressed, I started getting a tremendous pain down the left side of my body, one that would radiate to my back, knee, thigh and ankle. It was paralysing, and to be treated like my period wasn’t as painful as I made it out to be really hurt me emotionally.
I went from only having pain during my periods to the week before, during and after then everyday of every month for around 3 years. Every period I had seemed to get worse and worse, full of clots, I had to change my pad every hour because of how heavy it was. And yes, no bed sheet I had went without stains.
The thing is, it was so much more than painful periods. It took my quality of life, my self esteem, my energy, my health and my mental health. Being turned away and treated like I was faking it was such a kick in the teeth that it effected me a lot. It would keep me awake at night because the pain was pulsating throughout my pelvis. I couldn’t concentrate because my mind and energy was on wondering why no one believed me.
Each time I saw a doctor I let them know of the reproductive health history of my family but that didn’t seem to make a difference to them, not even a little bit. The only thing they picked up on were vitamin deficiencies and wouldn’t investigate further. I’ve been on the pill since I was 12, I tried the implanon as well but no luck.
So at the start of 2016 I told my boyfriend that I’d go and get help one last time and if they didn’t do anything I’d forget about it. Well, they listened to me. They actually listened to me. I got palpated where they felt a cyst and decided that a pelvic ultrasound was the way to go. My ultrasound picked up on a cyst in my ovary which took up most of my ovary, a cluster of some sort in my uterus and that was it. The results got sent into the public system at the hospital where I waited months to get a call to an appointment with a gynaecologist.
I went back for another ultrasound so that I could be sent to a private clinic because by this time I’d been waiting 7 months. This time, the person doing my ultrasound told me that everything was the same in my pelvis which was neither good nor bad. A month later I got an appointment and it was the best thing. Why was it the best thing? They believed me. They didn’t treat me like a hypochondriac.
In fact, as soon as my gyno met me he said “you poor thing, you must be in a lot of pain”. Yes, I nearly cried. Having someone believe you after 9 years is an incredible feeling. He did an ultrasound on me right there and then and pointed out where all the endo was and that the cyst and weird thing in my uterus was a cluster of endo. It was everywhere, the only thing that didn’t seem effected was my right ovary. I was booked in for surgery less than a month later.
It took 2-3 hours and they removed all of it. This part is hard for me, but I lost part of my left ovary that was effected with the cyst. At my follow up appointment I was told that I had the equivalent of 15-20 years of growth developed in the short span on 9 years and that it was unusual for that amount to be grown in a 21 year old. I wasn’t in any pain anymore, I was free. Hearing the amount grown in me made me realise that I wasn’t a hypochondriac and that I wasn’t making the pain worse for myself mentally.
During the recovery from surgery, I had 4 incisions that scarred nicely and only about 3 weeks of pain. I had my period and it wasn’t painful in the slightest, however it did keep going even on the hormone pills. I was told that I could only have a maximum of 4 periods a year, a godsend if you ask me. I’m also on a very strong pill.
For me, it was scary knowing that if I had of waited a bit longer to get it investigated I would have lost my entire left ovary. It was real. It still is real. And now, I’m experiencing the gradual return of the pain on the left side of my body. I will always be in maintenance mode and I’ll always have the anxiety of it returning because it will come back. It’s a chronic disease and I wouldn’t wish a chronic disease on anyone.
I’ve learnt so much throughout my journey: I learnt how important it is to push and push to get issue investigated, I learnt what it’s like to have fertility issues, I learnt what it feels like to have to plan out when you’re having kids when you’re 21, I learnt and understood all the arguments about abortion (this is a weird one and I will say I’m pro choice, I’m just saying that I learnt the other side that having fertility issues makes you look at women who have an abortion and get slightly jealous that they can even get pregnant straight away.)
But you know what? I didn’t go through this alone. I have the support of my boyfriend, my family and my real friends. The amount of love and well wishes I received on the day of my surgery meant so much to me, it reinforced that I definitely wasn’t alone in this at all.
I will never go through this alone, and no other woman should. This is real and happens to so many women. Don’t ignore your symptoms and please get the help you need.
It was stressful having to plan your reproductive time line and when you’ll have kids, it’s also stressful knowing you’ll have fertility issues.
Endo sisters are survivors, and we are strong.
Am I self conscious about my scars?
Fuck no, they’re the physical aspect of an invisible disease. My advice? Rock those scars as a giant middle finger to chronic disease.
This has been very personal, and very hard to write. I hope this opens up the conversation you have with the female loved ones in your life and I hope this helps women of all walks of life. You’re not your disease and you’re not invisible. It gets better.