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Nicole's Story

"I’ve been fighting for so long and never had the right answers as I was told I was ‘too young’ to have anything serious."

This is Nicole's story.

I have recently undergone surgery for suspected endometriosis in February and have finally been diagnosed after 5 years of fighting for answers. Endometriosis UK have been a big help for me before and after my surgery/ diagnosis as I follow their social media accounts which share so much information and offer support to those with endometriosis, suspected endometriosis, and people who know of someone who has been diagnosed. They really go above and beyond to spread awareness and help make endometriosis become well-known to as many people as possible.

I had been going to the doctors from about the age of 19 with pains and common symptoms of endometriosis. My main symptoms were painful periods, lower back pain & aches, painful intercourse, bloated stomach, fatigue and aches. I was constantly prescribed with antibiotics for urine infections when most of the time it never was the case. I was told I have PID (pelvic inflammatory disease) at the beginning of my journey and was given tablets again. I’ve been fighting for so long and never had the right answers as I was told I was ‘too young’ to have anything serious.

Only in 2021 did they start to take things more seriously and I was later referred to a gynaecologist. After seeing my gynaecologist, I was given some tablets to try to see if they would help with the symptoms I was having. This didn’t work. When I went back, I was told I needed a cystoscopy, which I had in 2022 and was diagnosed with Interstitial Cystitis (bladder pain syndrome) and given one course of tablets to take to help.

I then left hospital and had no follow up at all. I called back in 2023 as I was suffering more with symptoms, especially pain during intercourse, and I went back to my gynaecologist who said she will put me on the waiting list for a laparoscopy for suspected endometriosis. I then had my operation and diagnosis 3 weeks ago (at the time of writing).

My biggest implications through having endometriosis has been on my relationships, mental wellbeing, hobbies and activities, and education and work. I’m finding it so difficult to keep a relationship, which is having a huge impact on my mental health. I’m struggling to do what I love which is to dance! I compete nationally and it’s currently preventing me from going to my classes and doing dance competitions. My work life is affected also as I’m having time off work which is having a negative impact. My mental health is suffering too, I’m struggling to stay positive when I’m just going through so much pain and stress. I’m in constant worry about my future with no actual cure for endometriosis. The worry of infertility is huge and affects me every single day.

We need support, funding and I want to do whatever is required to get the help we need. I’m just a 24 year old wanting to live a standard life.

To others out there, it is important to remember that you know your own body, and not to be afraid to fight for the answers you need! Whether you’ve been diagnosed with endometriosis, have suspected endometriosis or know someone who has it, please reach out and get support if needed. It’s still fresh for me and I have found it extremely useful reaching out through Endometriosis UK.

Thank you Nicole for sharing your story.

If you are struggling with endometriosis and need support, our volunteer-led support services are here for you. Find out more here.