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Michelle's Story

This Endometriosis Action Month, Michelle shares her experience of getting diagnosed and the impact of endometriosis on her life.

Please note: Michelle's story contains mentions of fertility struggles.

From the time I started my periods they were extremely painful, way more painful than my mum and sister. After seeing my GP at 16, I was put on the pill and prescribed stronger painkillers and this continued all the way through my twenties - I'd see the GP, complain and be prescribed stronger meds. I was investigated for unexplained fertility at the age of 27, but again no mention of endometriosis.

During my thirties, my period pain got worse and worse and I also started to have other symptoms. I pleaded with my GP to get a gynae referral and finally, after 18 months I was seen. I had an internal ultrasound and based on this I was told I had a few small fibroids and that I should ‘get pregnant to resolve my issues’, again no mention of endometriosis.

Around a year later, I changed jobs and with my new job I had private health care. I got a referral to a gynae, in my first visit she instantly said that sounds like endometriosis, immediately booked me in for a laparoscopy which took place a few weeks later and I found out I had stage 4 endometriosis. I was 38 at this time, so it had taken me over 10+ years to be diagnosed.

My bowel was stuck to my womb, and I had multiple spots of endometriosis and adhesions. The surgeon removed what she could in that first surgery and then 6 months later I had to have a 3 hour laparotomy to remove all the endo patches as well as un-attaching my bowel. I was pain free for about a year after that, but my symptoms started to come back. I was told I needed a bowel resection and total hysterectomy and had my op three weeks ago. Luckily, they managed to remove all the endo, un-attach the bowel in all the places it was stuck, excised all remaining endo and complete the total hysterectomy without having to do the bowel resection.

Endometriosis has impacted me in so many ways, because of my symptoms (bowel and bladder), whenever I go out anywhere the first thing I do is scan for where the toilets are as I need to know where to go and quickly.

I believe my endometriosis has impacted my fertility, I've tried to fall pregnant naturally and apart from one pregnancy, which ended in miscarriage at 8 weeks, never succeeded and then after my first surgery, I was told my only option was IVF, I wouldn't be able to have a natural birth and I was at risk of further complications due to my adhesions. I then took the decision to not have children, though I feel lucky as my husband has children from previous relationships. It's impacted my relationships as sex is so painful that I have to take painkillers immediately afterwards and have bleeding, this impacts my desire to have sex as I'm so fearful of the inevitable pain.

I work in banking which is fairly intense, requiring long hours and have had to take long periods of sick leave for surgeries as well as time out for medical appointments and endo flare ups. All of this has impacted my progression as it's taken me far longer to get promoted compared to my peers, I can't say for sure it's down to my sick leave but you cant rule it out. As for my mental wellbeing, managing pain and low moods is difficult, I always feel like I'm letting someone down which also impacts my mental health.

I wanted to share my story as, like many others impacted by endometriosis I’m passionate about spreading awareness of the condition.

Thank you Michelle for sharing your story.

More than 10 years for diagnosis is far too long. Michelle’s story highlights the need for urgent action among governments and healthcare decision makers to improve pathways to care for those with endometriosis.

This Endometriosis Action Month, Endometriosis UK will be hosting events in all four of the UK Parliaments, where we will share the findings of our diagnosis report and ask politicians to pledge their support. Join us in taking action by asking your local representative to get involved today. Click here to access our easy to use template.