This month, EndoWarriors everywhere are raising awareness of the debilitating condition endometriosis. It takes an average of 7.5 years to diagnose, due to a lack of awareness and knowledge about the condition. We spoke to members from the awareness group NESS about what it’s like living with endometriosis.
“I have suffered with Endometriosis since the age of 15 and I was diagnosed aged 22. The worst thing about endometriosis is the lack of awareness. Even some doctors haven’t even heard of it which is very frustrating! I’ve had 4 surgeries to try to alleviate the symptoms. Unfortunately, this hasn’t worked. I want to try basically create more awareness of endometriosis, especially online, as much as I can.”
“I was diagnosed with endometriosis in May 2016. I would say 2 years was spent actively pursuing a diagnosis. But the previous 9 years I often went to the doctors, complained of pain and heavy flow and I was told ‘it’s just a bad period, it’s normal’. The hardest part of endometriosis for me would be the mental health side of things, coming to terms with the fact my body has limits and my life probably isn’t going to take the direction I thought it would. My hope for endometriosis awareness is that more young women are encouraged to be their own advocate when it comes to menstrual health. It’s not just a ‘bad period’ – push for the diagnosis.”
“I was 17 when I was diagnosed with endometriosis. I’ve had 6 surgeries since. The thing I hate most about endometriosis is not being able to plan ahead because you don’t know how your pain is going to be that day. You could be absolutely fine, or you could be crippled. Having the group NESS around is really good because you’ve always got someone to talk to. There are lots of different ways that people handle their pain, so you can take notes from them and try what they try. It’s a really good community on the whole and it’s just helpful to always have someone there.”
“I was diagnosed with endometriosis on the 14th February last year, I was only 15. It took me 3 years to get diagnosed. For those 3 years, I was told I had unexplainable abdominal pain. I hate endometriosis because it’s such a crippling disease and it causes so many issues for so many women but there is still no known cure and so many women don’t know about it either. When I was told about it, I had no clue what endometriosis was. I’ve currently only had one surgery which was my diagnostic surgery.”
“I was diagnosed when I was 25 when I had a miscarriage. I had been struggling since I was a teenager with all the common signs of endometriosis. It just wasn’t picked up until I had my first surgery. What I hate most about endometriosis is that it takes time away from my children. Especially when I have to just go and rest in bed. I would love to be able to make it more aware for children, especially young girls and in schools, to be able to support them through this and see the early signs and educate GP’s on the signs and symptoms.”
“I have suffered with endometriosis since being 19. I had always had heavy periods and then my symptoms escalated to constant bleeding, pain on intercourse, really bad pain in the lower tummy and lower back. I was backwards and forwards from anywhere between 6 months plus, who constantly checked me for STD’s. They’d do swabs, send me on my way and they’d come back clear, and I was in that cycle. I was in work one day when I was given an awareness form for endometriosis. Every symptom listed, I ticked…I’m now 36 and I’ve had 22 laparoscopies. At 29, I had a hysterectomy. When they removed my cervix, they found the endometriosis in there.”
A huge thank you to these women at NESS for their stories! You can follow the NESS page on Instagram here. For more information on endometriosis, head to this blog here where our gynaecologist talks all about the cause, symptoms and seeking advice. If these symptoms sound familiar and you think you could also be suffering with endometriosis, it’s important to seek help from your GP.
Find out more about living with endometriosis and other reproductive health conditions on our blog.