Hi, I’m Laura

I was diagnosed with endometriosis in 2019 when I was 39. My periods had always been painful as a teenager but my symptoms became more impactful in my late 20s and 30s. As my concerns grew about these impacts, particularly on my ability to work and engage socially, continued medical visits resulted in my symptoms being attributed to IBS or anxiety with no relief from the pelvic pain. I was often advised that I was just unlucky to experience painful, heavy periods.

After experiencing a particularly difficult, painful period after we had moved to the West Mids I was finally referred for an ultrasound. The next day I learnt that I was being rapidly triaged for further tests, initially to rule out ovarian cancer. After the ultrasound and MRI I was advised that I needed surgery as soon as possible as the scans indicated that the endo was advanced. At this point I was told the endo would have undoubtedly impacted my fertility and that I should ultimately prepare myself for the likelihood of needing a hysterectomy. This was a lot to take in after being told for so many years that nothing was wrong.

Although I needed surgery asap, and my symptoms had incrementally started to impact every day, wait times were indeterminate and my local health trust couldn’t guarantee an excision specialist. Excision surgery is considered the gold standard endo treatment where surgery is recommended, particularly for severe or deep infiltrating endo (which the MRI showed I had). Through the support of my local Endometriosis UK group I found a national excision specialist nearby in Birmingham who gave me the confidence he could help given I needed complex surgery. I felt I didn’t have any option but to pursue this route as the daily pain was by then disrupting all aspects of my life and impacting on my mental health.

During my first laparoscopic surgery in November 2019, endo was found throughout my pelvis, including in my ovaries, pelvic lining and around my bladder, bowel and abdominal wall. Unfortunately, the surgery didn’t improve my symptoms so two years later I had my second surgery in December 2021 - a total hysterectomy alongside removal of extensive scar tissue and adhesions, which put me into an immediate surgical menopause at age 41 (the average age for natural menopause is 51).

I’m taking on a #1in10 challenge this year as sadly my story isn’t a one off. After supporting friends recently through diagnoses I’m hearing more and more similar stories. Things aren’t changing. Endometriosis UK has recently reported that the average diagnosis time in the UK has now increased to 8 years and 10 months, from 8 years in 2020. Gynaecology is the health discipline to have seen the largest increase in wait times in the UK since the pandemic. Where left undiagnosed and untreated, physical symptoms can worsen and there are risks of permanent organ damage.

Endo affects at least 1 in 10 women and those assigned female at birth, that’s approximately 1.5 million people in the UK and 190 million worldwide. With diagnosis and wait times increasing, the work that Endometriosis UK is doing is becoming even more vital in supporting people while they advocate for themselves to navigate diagnosis and wait for treatment, as well as lobbying for much needed change.

As endo is a progressive disease mine continued to develop to a severe classification over the course of 11 years which ultimately meant I required more complex, lengthy surgery. Endo has left damage and scar tissue throughout my pelvis which I’m still working intensively to heal, both physically and emotionally.

After trying job role changes and part-time options since my diagnosis, I took the daunting step to go freelance this January (supported by my colleagues at Kada Research) to enable me to manage my health and focus on developing my wellbeing business which will ultimately specialise in women’s health. Many people with endo have to take the difficult decision to leave work or go part-time, which brings challenges from financial instability to stress and low self esteem creating a vicious cycle which can exacerbate endo symptoms.

This month I’m challenging myself to walk or cycle 10km each day for 8 consecutive days starting in mid-March – 10 to represent 1in10 and 8yr/10mo representing average diagnosis times. I’ll be completing my challenge in and around the North Yorkshire Moors.

This is my toughest challenge yet! Although I walk most days, at the moment I usually cover distances of 3 to 6 km. I started cycling again last summer after 5 years of not riding following a fall soon before my diagnosis caused by the endo in my left pelvic area compromising the nerve function in my left leg. I know that for seasoned walkers and cyclists these distance aren’t impressive but I’ll need to prepare carefully for this challenge and plan for an extended recovery period given fatigue is an ongoing symptom for me (running my first 10k last summer taught me this!). This is also the first time in more than 5 years that I've been in a position to contemplate a challenge like this given my symptoms and surgery recovery and rehabilitation.

I realise this is the most open I’ve been about my endo journey. As I’m learning, sharing our experiences openly is one of the most powerful ways we can raise awareness and , hopefully, collectively they can act as a catalyst for action to reverse the trend of lengthier diagnosis times, secure investment in high quality research and ensure that excision specialists are accessible to all.

I’m forever grateful and encouraged by the support I continue to receive from those around me. Thank you for reading (I know, this is an epic blog!) and thank you for being there for me x

Finally, a big shout out and kudos to Inov-8, the brilliant running and hiking gear company (and North England based!), for supporting me with this challenge and recognising the value of this cause.

To follow my endo journey, including tools that have helped me to manage my symptoms and support my ongoing recovery from excision surgery and hysterectomy you can find me @drlauralane on Instagram.

The latest Endometriosis UK report is here: https://www.endometriosis-uk.org/years-being-dismissed-ignored-and-belittled-endometriosis-uk-urges-improvement-deteriorating

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