Words by Katherine Stanley
I was first diagnosed with Endometriosis or Endo when I was 33. I’ve had symptoms since I was 16.
I still remember my first really painful period. It was so heavy that I had trouble walking up the hallway to tell my Mum that I couldn’t go to school. The pain was so severe that I thought that maybe I was dying. I finally got to the kitchen doubled over in pain and crying. When we went to the local doctor, he told me that I probably had some retrograde bleeding and that it was normal.
In the 17 years that followed, I saw many doctors and made many trips to the Emergency Department. After a while, I stopped talking about the pain and adjusted my life around it. I would need 2-3 days off every month due to severe pain, and daily pain had become a part of my normal life. I didn’t like mentioning my pain because though I knew it was real; I always had this niggling imposter syndrome feeling – maybe I was actually crazy and just making it all up.
It was a relief when I was finally diagnosed with Endo.
A relief to have a name to the illness that had taken over so many parts of my life and meant I always used all my sick leave. It was a relief to finally have proof that it wasn’t all in my head. I think it is quite striking that many women share the same story – they feel relieved when they get a diagnosis. I can’t imagine many other situations where people feel relieved to be diagnosed with a disease with no cure.
Endometriosis is where the tissue that is similar to the lining of the womb grows outside it in other parts of the body. Symptoms are varied for every woman.
Common symptoms include fatigue, digestive and bladder issues, heavy or irregular bleeding and LOTS of pain!! Pain on or around a period, on or around ovulation, during or after sex., with bowel movements or when you urinate. The pain is often felt in the pelvic region, lower back and/or down the legs. It is also widespread. 1 in 10 women has it, making it as common as asthma and diabetes. Despite this, it takes 7-10 years to be diagnosed with Endo.
With this in mind, I wanted to give back to the Endo community, and so last year, I created a support group called Talking Endo.
At the support group, we have a speaker with expertise in working with women with pelvic pain, then we share a cup of tea and chat about how we all are, and what it is like living with chronic pain. Talking Endo has since evolved into a podcast, and I am in the process of turning it into a social enterprise. I am continually looking for ideas and ways that I can support a group of women that to date have felt unheard and unsupported.
I am on a mission to change the Endo space for the next generation. I will not rest until women’s pain is believed, and women with pelvic pain feel supported and heard. If you have persistent pelvic pain, I urge you to go and speak to your doctor about it. And keep seeing doctors until you find one that listens to you and works with you to come up with a plan. If you have any questions, please feel free to contact me at @TalkingEndo on Facebook or firstname.lastname@example.org