Endometriosis and PCOS: For too long, no-one believed my pain was real
Do you live with an invisible condition?Share your stories, photos and videos.
Living with an invisible illness
Ever since my periods started they have been ridiculously heavy and painful.
My mum would just shrug it off and tell me to get over myself and get on with it, and every female around me would say "I get periods too, and they aren't that bad".
At 16 they became abnormal. I would faint and vomit from the pain; every time, it almost broke me.
My doctor told me I was young, and my abnormal periods were totally normal. She said the pain was all in my head and I needed to get over myself, then sent me home with paracetamol. How many other girls were sent away in the same way, feeling silly and defeated?
* We need to talk about endometriosis
* Endometriosis: the silent crisis affecting relationships
* My struggle with endometriosis
* Fresh hope for the disease that's making Kiwi women's lives a living hell
I spent years believing I just had a low pain threshold and was being dramatic. Then in 2014 I moved away from home, went to university, and took my health in my own hands.
I had many pregnancy scares as a teenager due to my periods sometimes being totally absent. After this happened one too many times, I started googling to find out what could be wrong with me.
I first read up on polycystic ovarian syndrome (PCOS) and I could relate to almost all of listed symptoms: oily skin; hirsutism (excessive body hair); acne; carrying weight mainly around my middle; struggling to lose weight; anxiety; pelvic pains; insomnia; missing periods.
Then I read about endometriosis: how painful and heavy periods can be; how the pain can be around the back of the thighs and in the lower back and abdomen; how nauseating it can be and how you can flare up because of stress or different foods.
I went to see a doctor pretty much straight away. She immediately booked me in to see a gynaecologist to get a surgical referral for endometriosis and sent me to get an ultrasound scan of my ovaries to check for cysts. For the first time ever, I felt like someone was listening.
I had a keyhole laparoscopy to examine my abdomen three months later. I was diagnosed with endometriosis and they removed what they could see.
I also had the Mirena IUD put in to "help", but had to have it removed four months later because it made me an emotional wreck and I had a period that lasted the whole time it was in.
I saw another specialist a year later who refused to see me because I did not want the Mirena put back in. She wouldn't even check me for tenderness or pain and told me I likely had irritable bowel syndrome (IBS), even though she had my notes and history in her hand. I felt as though I was back to square one.
I have been hospitalised for burst cysts on my ovaries multiple times. I have also been hospitalised because I've been so bloated that I could not pass urine on my own.
Doctors seem as though they have no idea how to help me except give me high-dosage pain medication. I get nauseous so I also have pills for that. I am currently on a combined pill to help control my periods and have extra progesterone and estrogen in my system.
Endometriosis and PCOS are debilitating, isolating and heartbreaking.
When I was 19 I had a miscarriage. Because of my history of missed periods I didn’t even know I was pregnant until I went to hospital. I found out that I was four weeks pregnant and that I was losing this tiny life at the same time.
I’m 21 now, and I still struggle with this. Every day I think about how my body struggles to do the most natural thing a woman is supposed to do. I haven't started trying to conceive yet, but I know that when I do want to get pregnant I will have a long road ahead of me.
Do you struggle with endometriosis? Click the green button to share your story or email email@example.com.
View all contributions