Endometriosis: Justyna’s Story 

When I was 16, I was diagnosed with endometriosis.

Endometriosis is extensive growth of the endometrial tissue outside of the uterus. It can grow anywhere in the body, but is usually around the uterus and reproductive organs. In the UK, around 1 in 10 women and people with a womb have endometriosis.

I had been experiencing heavy, painful periods since the age of 10 and they were so unbearable that I would always have to take a day off school because of the pain.

I hadn’t raised these issues with my doctors previously because I thought this type of pain was normal with periods. It was only once I was in my late teens that it became almost impossible to get relief from just paracetamol and hot water bottles.

I felt lucky to be diagnosed whilst still in my teens, as it takes roughly 7 years to receive a diagnosis.

Whilst that was around the same timeframe for me, I was diagnosed on my first visit with my new GP, thanks to her specialising in gynaecology. Once she heard about my period problems she explained what endometriosis was and sent me to get tests to confirm the diagnosis.

As well as my heavy periods, other symptoms caused by my endometriosis include: PMDD (Premenstrual Dysphoric Disorder), back pain, so-called “endo belly” (heavy bloat that makes you look super pregnant), ovarian cysts and cramps that feel even deeper than period cramps even if I’m not menstruating.

Painful sex was also a huge issue for me at the beginning.

When I was still dating men, that was always in the back of my mind- would I be able to have sex with them comfortably? It made me insecure. This combined with the lack of education given to boys and men about foreplay being essential to easier penetration, led to my disaster of a sex life. Sometimes I’d have tears in my eyes from the pain. I couldn’t enjoy myself with another person. It was horrible.

Some of the more inconvenient outcomes of these symptoms today is the fact I cannot work hospitality or retail jobs anymore. When I worked as a waitress it made it worse. Stress definitely takes a bigger toll on my body, usually causing a flare up and the cramps can make me immobile.

The first medical solutions to try and end my pain were all birth control related.

I’ve tried the pill, the pill and the implant together, the implant alone, the implant plus the coil, and the coil alone. It made me not only feel horrible, but I gained so much weight*, my mental health declined and it was always on my mind. I didn’t feel good or healthy and I felt like I was sacrificing that for a little less period pain. My other symptoms didn’t go away, just the bleeding.

In 2020, I had a laparoscopy (also known as keyhole surgery) to remove the endometriosis tissue from my abdomen. Since the surgery, my pain has subsided, however this is not a permanent solution due to the tissue eventually growing back.

I am now off all birth control because I don’t need to worry about preventing pregnancy any more (shoutout to my LGBT people). This is working well for me and I’m able to exercise and lift heavy and enjoy myself so much more.

If I could tell everyone just one thing about endometriosis it would be that just because it’s invisible does not make the pain any less valid. You likely walked past someone who was having the worst pain they’ve had in weeks. Maybe you looked at a woman and thought she was pregnant, but she was just bloated for no good reason.

It’s invisible on the outside, but it’s a silent killer.

From your self esteem, to your day to day, your body controls your life when you’re suffering from a chronic pain condition. I’m only stage 3 and I can’t imagine what it’s like being stage 4. Understanding and educating ourselves on endometriosis could help strengthen relationships, friendships and experiences in professional settings.