1 Aug 2023
Jade Brindley – using her own personal experiences – explains the debilitating effects of this condition, and how vet teams can support suffering colleagues.
Jade Brindley
Job Title
Image: © Jo Panuwat D / Adobe Stock
This was coming from an incredibly good friend who I have had for years (who was also a boyfriend many moons ago). Upon reminding him that it was to do with my period, he responded with “oh, I thought it was some kind of food poisoning”. This innocent ignorance made me laugh through the pain, but also reminded me that people still do not recognise it, let alone understand it. It was when I went to text back, I realised I still struggle to explain it, despite having been diagnosed around 10 years ago.
I have recently had to temporarily stop hormone treatment, which controls my symptoms of endometriosis – the main (and worst one for me) being pain. So, after being symptomless for years, I am back to experiencing some of the hideous side effects.
Putting on my “curious vet nurse” hat, I started researching it again. I wanted to understand it more, find out what the latest research is, and what legislation or health care guidance has been implemented. But I also wanted to be able to share my experience, research and findings, to aid others in their diagnosis journey, while providing some understanding for those who wish to support others.
Most importantly, I wanted to make my personal story accessible, so people who are struggling with it know they are not alone.
I was in Laos, a small landlocked country in the middle of south-east Asia, on a two-year backpacking trip across the world when I suddenly got the “dread sweat”.
It was a hot and humid country, but this wave of moisture was vastly different. We were watching a procession of Buddhist monks at the time. They gently and confidently walked in a float of bright burnt orange dress past a pavement lined with awed faces. I tried to focus on the sense of calm the monks brought and mindfulness associated with these kind, wise men. But while I had a brief glimpse of serenity, the second the last monk had walked past, I bolted it back to the guesthouse we were staying at.
Delving into the first aid kit, I tried to find the strongest painkillers we had before lying down soaked in sweat on the bed, clutching my stomach, reminding myself over and over that there will be an “over” at some point as my tears made the sides of the pillow by my face damp. My teeth gritted; I fixated on watching the ceiling fan go round. Round, round, round.
Luckily for me, it did not happen every period at that point, so I never had to go home from travelling. I never actually thought anything was wrong. I just thought I had bad periods or pains that all women are expected to have. So the concept of going to the doctor did not occur to me, even when I was back in the UK and had to come home during my lunch break from work to have a scalding hot bath as a distraction from the pain. I had normalised the not normal.
One day, my vision started going from the pain and I later woke up after passing out on the cold, hard floor of my bathroom. I had taken too many painkillers in confusion and desperation to hide from the pain. This is not normal.
At the GP appointment, I clasped my hands together while downplaying all the symptoms which are, for once a month, life-hindering. He tilted his head towards me and said it could be one of two things. At the time, I was studying for my master’s in management and was a long way away from veterinary nursing at that point in my life. I do not remember if the things he referred to had names; if they did, I did not recognise or understand them.
I was referred for an ultrasound and an internal examination. The internal examination consisted of the doctor manually exploring my vagina with his hands. This was one of the more vulnerable times during my journey, as it seemed a much more personally invasive procedure than when medical instruments were involved. However, a nurse was present and I was reassured throughout. I was as relaxed as I could be, with it all over within a minute or two.
The findings were inconclusive.
Worded like a party invitation, the NHS told me in a letter I was “invited” to have a laparoscopic investigation. No RSVP required and nothing to do in the meantime. Just turn up on the day, with no food or water in your system, and to bring someone with you and wait to go under anaesthesia. It was only once I was in the hospital bed that the surgeon spoke to me and I remember the word being thrust into conversation – “endometriosis”.
Before I had a chance to think about the word that was tangled in my head, the surgeon asked if I wanted to test whether I could have children while I was under. I had not really contemplated the fact that I may not be able to have children (I was 26 years old at the time), but managed to mutely nod my head in agreement. The fear of whether I could have children was worse than the thought of having this strange condition I did not know anything about. And so, while I was in the anaesthesia room succumbing to the powers of pharmaceuticals, I counted to 10, but dreaded waking up on the other end.
Once I was awake, the surgeon informed me that I did have endometriosis; they had lasered off some scar tissue; I could have children; and I just needed to go on the contraceptive pill. Then he left. And that, for the moment, was that.
One in 10 women of menstrual age are estimated to have endometriosis, which equates to 175 million globally and 1.5 million women in the UK (National Insititute of Care and Excellence; NICE, 2020).
Endometriosis is where the cells that line the uterus migrate to other locations in the body. These cells usually react to the hormones the body releases in the same way they do in the womb during menstruation. They build up for a potential pregnancy and when one doesn’t occur, they break down, bleed and result in a period. The problem for migrated cells is no way exists for the broken-down tissue or blood to escape. This is what causes the pain, inflammation and scar tissue (Endometriosis UK, 2022a).
Discrepancies still exist around what the symptoms for endometriosis are. Therefore, I have compiled a list of symptoms from a few resources (NHS Inform Scotland, 2023; NHS, 2022a; Endometriosis UK, 2022b; Becker et al, 2022; NICE, 2018):
The lack of a clear definitive list of symptoms may be indicative of some of the issues around diagnosing.
NICE (2018) developed three statements that health professionals can use as guidance to diagnose endometriosis. However, still it takes an average of 8 years and more than 10 times visiting the doctor to get a diagnosis (Endometriosis All-Part Parliamentary Group; APPG, 2023; National Insititute of Health and Care Research (NIHR), 2023; Endometriosis APPG, 2020).
Definitive diagnosis is through laparoscopy requiring general anaesthetic, but other diagnostic steps may take place, much like in my diagnosis journey (Becker et al, 2022).
No permanent cure exists (NIHR, 2023).
NHS England (2022) state the following treatments:
Treatments may vary between people. This may be due to aspects such as preferences, side effects, severity and fertility (Becker et al, 2022). Although surgery helped me and may be perceived as being the “best choice”, 20% to 28% of women still experience pain after surgery (NIHR, 2023). Thus, individual plans should be devised for patients.
It affects one in 10 women of menstruating age (NHS Scotland, 2023). In total, 96.8% of veterinary nurses and 56% of vets are women (RCVS, 2021a; RCVS, 2021b). Therefore, a significant amount of people in the veterinary community may be suffering with endometriosis. In addition, care assistants, receptionists, kennel hands, volunteers, cleaners and your clients may also be impacted.
It can be debilitating physically and so can impact on our ability to carry out the physical work our jobs frequently demand. It can also have tremendous impact psychologically.
In Endometriosis APPG’s (2020) report, a high prevalence exists of “negative or very negative” impact on well-being (95%), mental health (81%), and ability to lead life as they want to (89%).
Understanding a bit more about endometriosis will help aid conversations, allow symptoms in others to be recognised and offer insight into ways you may be able to help.
Being able to talk to colleagues can help ease the feelings of isolation and mental stress endometriosis can cause.
Help colleagues in ways that are useful to them. This may be to allow those who are suffering to have additional breaks or lighter work during their shift, or it may be just grabbing a cup of tea, or popping a “wheatie” in the microwave for painful tummies. Cuddles with puppies have certainly helped me on bad days.
Raising awareness by fund-raising, and, if you are financially able to, donating to charities, such as Endometriosis UK.
The Department of Health and Social Care’s (DHSC; 2022) Women’s Health Strategy recommends employers draft policies, provisions and help “women to manage the impact of symptoms of menstrual health problems, conditions such as endometriosis or menopause in the workplace”.
Provide the space for employees to be open about telling you they have endometriosis.
Due to delays in diagnosis, adjustments should be made for those who may have suspected endometriosis. Have two-way discussions about what might help, or hinder, the symptoms, but also ensure any agreements are implemented. A few examples could be:
Endometriosis UK (2022c) provides a guide on “Law and best practice for employers”, which goes through all employees’ legal rights to sick pay, equality and freedom from discrimination, disability, adjustments and flexible working, benefits, data protection and confidentiality.
This scheme provides guidance, support and resources, as well as information for other menstrual health conditions (Endometriosis UK, 2023a).
If we communicate to others about the condition, it may help others to understand what we are going through. It may lead to provisions at work that can reduce some of the stress caused by endometriosis. By talking about it, we may also encourage others to talk about any symptoms they may have and enable a faster diagnosis for them.
Endometriosis UK (2022d) provides “An employees’ guide to rights at work”, which goes through employees legal rights to sick pay, equality and freedom from discrimination, disability, adjustments and flexible working, benefits, data protection and confidentiality.
Diagnosis journeys are individual. Many factors exist that may influence what happens on your diagnosis journey, from what your symptoms are, to the doctors and nurses you have, to the place where you live and the budget for investigations.
If you have been diagnosed, you can help by sharing your experiences through Endometriosis UK’s (2023b) Diagnosis Survey. This takes 15 minutes and can potentially inform parliamentary decisions around health care.
Endometriosis UK enables support through its local support groups, webchat and the HealthUnlocked online community (Endometriosis UK, 2023c). You can even volunteer to help with these services.
Research in endometriosis is limited, so participating in a clinical trial can help others, give you access to the newest treatments and health care, while also aiding development into research leading to better treatments, faster diagnoses and improved patient outcomes (NHS, 2022b).
Informative webinars are available on a range of aspects, including “Long-term pain management”, “Supporting someone with endometriosis”, “Getting the most out of your gynaecology appointments” and “New European Society of Human Reproduction and Embryology (ESHRE) endometriosis guidelines”, as well as fact sheets (Endometriosis UK, 2023d).
DHSC’s (2021) vision for Women’s Health Strategy in England identified menstrual and gynecological conditions as one of the priority areas. Only 8% of teenage girls have heard of endometriosis (Randhawa et al, 2021).
Many adults, like me, did not seek help when symptoms started. So, communicating what is normal for women’s gynaecology and research into women’s health is important. We work in health care and so work, for us, should be an ideal place to do this.
The Wellbeing of Women charity and The University of Edinburgh have just been granted £250,000 from the Scottish Government to conduct further research into the pain management of endometriosis by running a pharmaceutical trial of a drug, which would be the first non-hormonal non-invasive treatment for endometriosis (Wellbeing of Women, 2023). An additional study has also been funded to explore alternative pain management options (NHS Scotland, 2023).
Endometriosis is something I am suffering with again. Communicating about it to others would have helped copiously in my monk procession and hot bath days, as by allowing others to help, it would have made me feel less alone.
Everyone from colleagues to employers and other sufferers can help by being curious, learning, listening, and offering support in the workplace. This will reduce stress at work, but also make others feel less alone outside of it, too.
