Endometriosis is a complex and often misunderstood condition that affects millions of people worldwide. For some, the impact extends beyond reproductive health, leading to severe complications.
In this candid Q&A, we speak with Kathryn, our newest Oakmed ambassador, who has faced a long battle with endometriosis and multiple surgeries, ultimately leading to a stoma.
She shares her journey, the challenges she faced, and the importance of raising awareness…
What inspires you to talk so openly about endometriosis?
I don’t want anyone else to go through what I did.
I wasn’t given the right information, I was told endometriosis was ‘just one of those things’. I had no idea it could become this severe, leading to organ damage, infertility, and long-term bowel issues.
More people need to know that endometriosis is not just a period problem, it’s a full-body disease. The lack of education among medical professionals and the systemic discrimination in women’s health must change.
Can you share your journey with endometriosis and how it led to you having a stoma?
My journey with endometriosis has been long and complicated. I stopped taking the contraceptive pill in 2010, and within months, I was experiencing severe pelvic pain, cramping, and difficulty emptying my bowel during my period. My GP dismissed it as ‘probably just endometriosis’ telling me there wasn’t much that could be done.
For years, I was sent home with painkillers, contraceptive pills, anti-inflammatories, and bowel medications while my symptoms worsened.
It took six years to be referred to an Endometriosis Clinic, where I discovered my condition was severe – my bowel was completely adhered to my womb and nearly blocked. I needed a life-saving bowel resection and major surgery with a multi-disciplinary team.
I thought that would be the end of my issues, but it was just the beginning. Over the next seven years, I endured six more surgeries to treat adenomyosis, adhesions, and residual endometriosis left behind from previous operations, as well as complications from my hysterectomy and ongoing pelvic pain and bowel issues.
The surgeries themselves most likely contributed to nerve damage, sphincter issues, and further complications, but I’ve never been given a definite answer as my case is so complex. I developed bowel prolapses, nerve damage, recurrent deep bowel endometriosis, and pelvic floor dysfunction, making everyday life increasingly difficult.
Eventually, doctors determined that the damage was too extensive for minor procedures to fix, and we decided that a stoma was the best option to relieve my symptoms and improve my quality of life.
How did you feel when you were told you needed a stoma?
I felt relieved that my bowel issues were finally being taken seriously and that I was being offered a permanent solution. For years, I had been told that my problems were ‘just anxiety about going to the toilet’ or that I had minor issues like piles, despite scans and tests showing otherwise.
It was hard to process that I had real, physical issues after so many years of being dismissed.
While the idea of a stoma was daunting, it felt like the only way to improve my quality of life after more than a decade of suffering.
What has been your biggest challenge in living with endometriosis?
One of the hardest challenges has been getting doctors to listen, believe, and understand me. I was repeatedly told:
- It’s just one of those things.
- You just have a low pain threshold.
- You just have piles.
- There’s nothing wrong with you.
Even when scans showed clear abnormalities, I had findings dismissed or ignored. The fight for proper diagnosis and treatment was as exhausting as the disease itself.
Endometriosis has taken so much from me; my fertility, organs, bowel function, career, social life, and hobbies. But the worst part was the guilt of not being able to be the parent I wanted to be. My son was four when I had my first surgery, and he’s now 12. For years, I had to cancel outings, miss holidays, and rely on others for help. That has been incredibly difficult.
Looking back, do you wish anything had been done differently during your diagnosis and treatment?
Absolutely – everything!
I, like so many other women, was failed at every stage. I wish I had moved hospitals sooner and accessed the specialised care I desperately needed. If I had been referred to an endometriosis specialist earlier, my condition may not have progressed to stage 4 (the most severe).
It took seven years of severe symptoms to get a diagnosis—this is unacceptable, and unfortunately, it hasn’t improved for many today. I wish I had been believed, listened to, and supported throughout the whole ordeal.
You’re a big advocate for raising awareness – what do people misunderstand most about endometriosis?
People think it’s just bad period pain, but it’s so much more.
Endometriosis causes internal bleeding every month, leading to inflammation, adhesions, and chronic pain. It doesn’t just affect the reproductive system, it can infiltrate the bowel, bladder, lungs, and diaphragm, causing life-altering complications.
What advice would you give yourself knowing what you know now?
I’d remind myself to be kind and put both myself and my son first. I don’t have to battle through everything alone or pretend I’m fine. I need to acknowledge when I’m struggling and do what’s best for me.
Endometriosis is a serious, long-term condition that can make people incredibly unwell for extended periods.
Instead of dismissing symptoms as ‘just tiredness’ or ‘just pelvic pain’ I would tell myself – You’re not just tired, you’re unwell, and that’s okay. You need rest, support, and proper care. Looking after myself isn’t selfish, it’s necessary!
What message would you like to share for Endometriosis Awareness Week?
- Keep fighting for the care and treatment you deserve.
- Be honest about your symptoms and prioritise your health.
- Raise your voice – change won’t happen unless we speak out.
I even took my story to 10 Downing Street, so you never know what impact sharing your experience with your MP might have!
Endometriosis awareness is critical. We need better education, faster diagnoses, and improved treatment options. Until then, we must keep pushing for change.
If you’re experiencing symptoms of endometriosis, it’s important to speak with your healthcare provider for guidance and support. Your Stoma Care Nurse can also assist with any stoma-related concerns or questions.
For additional information, Endometriosis UK offers valuable resources and advice. You can also explore our blog to learn more about endometriosis and stomas.
