By Alexandra Taylor

Endometriosis affects one in ten women in the UK alone, making it a common chronic illness amongst women in the (female dominated) veterinary profession. A lot of people are not aware of endometriosis, or the impact it can have on people’s lives – not just those who are suffering from the disease, but those around them too such as family, friends and colleagues.

An insidious and painful disease, endometriosis occurs when cells similar to those that line the uterus deposit elsewhere in the body – often in the pelvic cavity,  attaching to the uterus, fallopian tubes, intestines and bladder. These cells enlarge and break down in sync with the menstrual cycle, resulting in significant pain and inflammation, and causing the formation of scar tissue and adhesions.  

Symptoms of endometriosis can vary in type and severity, but may include:

• Chronic abdominal pain

• Severe fatigue

• Heavy and painful periods

• Prolonged periods

• Painful sex

• Problems conceiving

• Abdominal bloating ‘endo belly’ 

• Bowel and bladder symptoms e.g. cystitis, diarrhoea 

• Back and leg pain

• Anxiety and depression 

Heavy, painful periods are not normal. If you suspect you may have endometriosis, Endometriosis UK provide a quick online symptom checker, which can be helpful to share with medical professionals: https://www.endometriosis-uk.org/symptom-checker

Adenomyosis is similar to endometriosis but occurs when the same endometrial tissue grows within the myometrium (muscular wall of the uterus). It can cause significant enlargement of the uterus, and the symptoms are often similar to endometriosis, with some women experiencing very severe dysmenorrhea (painful period cramps). It’s fairly common for women to be affected by both endometriosis and adenomyosis, but that isn’t always the case.  There is even less awareness about adenomyosis than endometriosis and both would be considered as invisible illnesses, so it may not be obvious if someone is affected.

Everyone’s story is different, but there are some shared commonalities between women with endometriosis and/or adenomyosis. According to the charity Endometriosis UK, getting a diagnosis for endometriosis takes, on average 8 years and 10 months, a number that increased during and after the pandemic 1. Their report, based on a survey of 4371 people diagnosed with endometriosis also showed that 47% of respondents had visited their GP 10 or more times with symptoms prior to being diagnosed. The same survey also revealed that 52% of responders had visited A&E at least once and 26% three or more times prior to diagnosis. Worryingly, 78% of people who were later diagnosed were told by one or more doctors that they were making a ‘fuss about nothing’1.

Sadly, none of these results surprise me. When I look back now, I know that I had some obvious signs of endometriosis. I visited my GP throughout my 20’s and 30’s and my symptoms were dismissed many times before I was finally diagnosed. The struggle doesn’t end there either, because even after diagnosis women are still not listened to and their symptoms are not always taken seriously. I remember being told I ‘Couldn’t have pain relief forever’ despite needing regular pain relief to just to make it through the day (how else was I supposed to keep working and bring in an income?!). I used to dread going to see my GP simply because I knew that it was always such a battle to be listened to and get the treatment I desperately needed – not a nice thing to deal with when you are already fatigued, in painand struggling mentally. 

It's not all doom and gloom though, there are some fantastic GPs, nurses and specialists out there who do want to help and can – it’s just a case of finding them. I remember being at my local urgent care centre when my endo pain was at it’s worse. It had been going on for weeks and I was physically and mentally at an all-time low. I was very upset and tearful, but luckily, the nurse who assessed me was very understanding and supportive, she helped me get the support I needed and the doctor she referred me to was also fantastic.  Just knowing that people are listening and are willing to help makes such a difference. I will never forget how kind they were to me. 

After years of different medical treatments (some of which made me feel physically and mentally dreadful) and two laparoscopies, I eventually had a total hysterectomy in 2016. I’d had several tests and scans by that point, and I knew that I wouldn’t be able to have children.I had also tried most other ways of managing the disease and none seemed to work very well, or for very long. However, the doctor was not keen on performing the surgery initially just in case I changed my mind and wanted to try an egg transplant to have a child– I wouldn’t, I just wanted the pain to stop. Eventually I had to take my husband with me to talk to the doctor too. I remember him saying ‘My wife is getting home from work and going straight to bed, that isn’t normal for a 39 year old’. My surgery was booked in for a few weeks later. 

According to Endometriosis UK, we don’t know for sure if endometriosis causes infertility, but there is a link between endometriosis and fertility problems, which is not fully understood2. However, many women with endometriosis (even those severely affected) can get pregnant without any intervention and others can do so using IVF, which is promising. However, sadly for me that was not the case. I would say now though that although infertility is heartbreaking and it may seem like the end of the world (and very unfair), it is possible to lead a meaningful and fulfilling life without having children. 

I was lucky in that having a hysterectomy was an effective way of managing my symptoms. I had endometriosis on my uterus, ovaries and large bowel, but a lot of my pain was due to adenomyosis, which stopped when my uterus was removed. However, having a hysterectomy is not necessarily best for everyone, and there is no ‘one size fits all’.  It does also come with its own risks and side effects, such as immediate surgically induced early menopause. I still get abdominal and back pain sometimes, but it is much more manageable, and my quality of life has dramatically improved. There is currently no cure for endometriosis, and when it comes to management, what works for one person may not work for another. There are a lot of treatment options available, and often it’s a combination of medical and/or surgical management depending on how each individual responds. There are also accredited BSGE (British Society for Gynaelogical Endoscopy) endometriosis centres throughout the UK: https://www.bsge.org.uk/centre/category/accredited-centres/. These centres offer support and integrated care by a multidisciplinary team of nurses and doctors with specialised training in management and treatment of endometriosis. 

New research from the Office of National Statistics has shown that endometriosis can negatively affect the monthly pay of those affected. This does not surprise me, and I think working in a physically and emotionally demanding role in veterinary practice can be really tough for those with endometriosis and adenomyosis - sometimes it’s challenging just to get out of bed when you have a chronic, painful illness. 

According to Endometriosis UK, one in six women with endometriosis will even have to leave work due to the impact of this disease 4. It also costs the UK economy £8.2 billion per year through lost work and healthcare costs. This means that businesses lose good employees and money due to the impact of this disease, and individuals feel isolated and worried about their role at work and income. However, support is available for those working with or affected by endometriosis:  

For individuals:

• https://www.endometriosis-uk.org/get-support. 

• https://www.endometriosis-uk.org/upcoming-webinars

• https://bvna.org.uk/project/chronic-illness-and-conditions-among-veterinary-nurses/. 

For employers: 

• https://www.endometriosis-uk.org/endometriosis-friendly-employer-scheme 

• https://www.endometriosis-uk.org/menstrual-health-at-work

References and further reading: 

1. Years of being “dismissed, ignored and belittled”: Endometriosis UK urges improvement to deteriorating diagnosis times  | Endometriosis UK. (n.d.). https://www.endometriosis-uk.org/diagnosis-report

2. Endometriosis, fertility and pregnancy | Endometriosis UK. (n.d.). https://www.endometriosis-uk.org/endometriosis-fertility-and-pregnancy

3. Health Research Group. (2025, February 5). The impact of an endometriosis diagnosis on monthly employee pay and employee status, England - Office for National Statistics. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthinequalities/bulletins/theimpactofanendometriosisdiagnosisonmonthlyemployeepayandemployeestatusengland/april2016todecember2022#main-points

4. Endometriosis in the workplace | Endometriosis UK. (n.d.). https://www.endometriosis-uk.org/endometriosis-workplace