| Endometriosis UK

Living with Endometriosis: Afua's Story

Endometriosis just makes everything harder - being a mum, being a partner, being a friend, being a sister. For so long I thought the pain that I was feeling all through the month was normal. I went to what feels like so many doctors who I felt didn't take my pain seriously, said it was just my periods and told me to take paracetamol.

It wasn't until about 10 years after I started getting the symptoms that I was referred to the hospital and had my first surgery. Endometriosis was finally diagnosed, but a second surgery and many months of pain later, I don't feel much has changed.

There is still no real treatment apart from painkillers and surgery to get rid of endo which in my case has returned each time, there is no cure and diagnosis still takes around 8 years. I've missed days off work, nights out with friends and spent so much time in pain it's insurmountable. For years I didn't talk about my condition because I felt like no one would understand what it was like.

Thanks to Endometriosis UK, I have realised I am not alone, that what I am going through is not unusual, but also that I can live a valuable life and manage my condition.

I am so pleased to be working with Endometriosis UK to be raising awareness of this condition and the time it takes for diagnosis. I also want women like me to know that they are not alone in this.

Living with Endometriosis: Andeep's Story

I started my period when I was 11 years old and I thought it was normal to be doubled over in pain every month. It only took 22 years to realise that, in fact, it’s not. For me, it wasn’t just about having a period every month. It was knowing that when I was due to start, my bowels would play up. Play up to the point that I’d pass out in the bathroom, or call my husband because I was going to pass out while on the toilet!

I would (pre-Covid), plan holidays and nights out depending on when I was ‘period-free’. I'm used to this now, and I don't see my mind-set changing soon. Not just because my handbag or suitcase would be that much bigger, but it's so I know I would be able to walk, dance, have fun without being bathroom or sofa bound, or walking around with a limp because my leg is aching (yeah, that's a thing too!). There is a myth around endometriosis. “Have a child” they say. “Your endo will go away” they say. They forget that having a child in the first place might be difficult! It’s depressing and you can feel really lonely.

After having a couple of colonoscopies and a laparoscopy, I’ve been feeling better. However, the pain continues. Not as bad as before the operation, but it’s still there. A couple of months will pass and it’s manageable. Then I’ll have a couple of months where it’s so excruciating, I’m crawling between the sofa and the bathroom. Those days are the worst, but thankfully will only last a couple of days. During those days I will sleep upright in bed, with my legs bent towards me... that's the only comfortable position to be in.

Since taking part in Walk for Endo last year, I have been introduced to an amazing Endo-Community on social media, and have met some wonderful people. There's a sense of relief about talking to people who are going through similar issues, and it's nice to be able to share our journeys together. To support each other. So much love going out to my Endo Warriors.

I would never have talked about periods and bleeding or such like at home or with my family. Just because there is a taboo attached to it. But that has all changed because the conversation has to start somewhere. My family and in-laws having been so supportive of my journey over the past 8 months, and it's great to speak openly about this. The next generation need to know that's it's normal to talk about periods.If you’re going through something similar, please remember you are not alone. Even if at times you feel like you are.