Women's Health; Understanding endometriosis and adenomyosis

Nicola Rylatt, solicitor and member of our Wellbeing Steering Group talks about endometriosis and adenomyosis, the impact they can have on a woman’s life and ways employers can help.

Have you heard of endometriosis and / or adenomyosis?  If you are a woman, chances are you will have, particularly as 1 in 10 of us suffer from one or both of these often-debilitating chronic conditions.  According to a report by the APPG on endometriosis, the condition costs the UK economy £8.2 billion a year in lost income and NHS costs.

According to the charity Endometriosis UK, endometriosis, where the endometrium, tissue lining the womb, infiltrates areas outside of the uterus and can affect the bladder, bowel, ovaries, and even the lungs and, rarely, the heart, is the second most common gynaecological condition in the UK, affecting 1.5 million women and is more common than diabetes.  A study by Endometriosis UK suggests that waiting times for a diagnosis have significantly deteriorated in the past three years, increasing to an average of eight years and 10 months, up 10 months since 2020. In Scotland, the average diagnosis time has increased by four months. 

The term adenomyosis, where the endometrium, instead of growing out into the uterus, grows into the uterine wall (myometrium), may be less familiar however both these conditions, which vary in severity from woman to woman, can cause symptoms including heavy and painful periods, chronic pelvic pain, extreme fatigue, bowel and bladder problems, depression and infertility.

While there may be more awareness and open conversation around these conditions, the cause remains unknown and there is no definitive cure. Treatment can include hormone medication, anti-inflammatory pain relief, as well as surgery.  In fact, the only definitive way to diagnose endometriosis is via laparoscopy - an operation in which a camera is inserted into the pelvis.

I am unfortunately someone who has suffered year after year with near debilitating pain that would leave me struggling to get out of bed, with scalding hot water bottles or TENS machines offering limited relief. I would have to cancel plans at the last minute and sometimes, I was apprehensive about making plans at all, in fear of a flare up of pain that would have me in tears and doubled over.  

I was officially diagnosed with adenomyosis in 2021 and stage 3 and 4 endometriosis, with cysts and invasion of two other organs, in December 2023 following surgery.  Whilst some days, the recovery process has felt slow and frustrating, it is still early days, but I can say with certainty that I am no longer in significant pain every day.    

Understandably, my condition has had a significant impact on my working life as a solicitor. Over the years, I have had varying degrees of support and understanding by employers however, most recently my current employer has been unbelievably understanding and supportive.

I am fortunate to have a great working relationship with my manager and was able to be open and frank with her concerning the pain I was experiencing.  I was able to work from home on days when I was really struggling, GP and consultant appointments were always accommodated.  I also had an open discussion with my manager when it came to options my consultant had discussed with me. The treatment route I had decided upon required a post-surgical recovery period of 12 weeks and I was open with my manager about this.  Me being me, however I knew that I wouldn’t want to take this amount of time off and following my surgery in December, I was able to return to work earlier on a phased basis; there was no pressure on me to return to the office straight away and I was often told off for overdoing it when I was in the office!

Whilst I appreciate that not everyone will have a manager they feel comfortable enough with to openly discuss such sensitive issues with, I would encourage employees and employers alike to become more open to creating a safer space to allow women to discuss their condition(s) and the impact it can have on them day-to-day or month-to-month.   

My message for employers is to ensure they are educating themselves on these conditions and understand that each woman’s experience may be different.  Women who live with endometriosis and adenomyosis may need more support at work.  These conditions are chronic and complex diseases which can be difficult to understand, particularly as they are invisible illnesses to others.  They are also exhausting and painful and often difficult to manage.  As a consequence, employees can worry about the impact their condition is having on their productivity, how they are viewed if time off is needed and their chances of progressing in their careers. 

If employers facilitate their employees to work from home on days when they are experiencing a flare up or simply being understanding and compassionate when time off may be required to attend medical appointments or to manage symptoms, this can go a long way to supporting and, often, retaining valued employees.

A good place to start to find out more about the condition and support available for both individual sufferers and their employers is on the Endometriosis UK website – Get support | Endometriosis UK (endometriosis-uk.org)