As part of the University of Southampton’s Women’s Health Month, we’re sharing the stories of some members of staff on how they manage their health and wellbeing. Jhelissa had experienced severe pain from an early age, but it took years to get a diagnosis of endometriosis and to get treatment. March is also Endometriosis Awareness Month, which aims to increase awareness of the condition.
Here, she discusses her experience and shares what she’s learned and what others should know about this debilitating condition.
What is your experience with endometriosis?
My experience with endometriosis has been difficult. I had begun my menstrual cycle when I was just nine years old, with little to no knowledge as to what was happening to me. As the years went on and some of my friends started to experience their cycles, I realised my experience was different. I had experienced a heavy flow, passing out, extreme pain, bloating, major fatigue and tiredness, irregular and long cycles, and pains that would spread across my whole body. None of my friends had experienced anywhere near this level of discomfort.
My mum had taken me to the doctor when I was 13 to ask for some support from my GP. He had said contraception would regulate my periods and stop my pain, and I would stop having these symptoms when I had finished puberty. Sadly, that wasn’t the case, and I’ve been on contraception now for 13 years. My periods are not regulated, and I am still in pain.
It became so demoralising and frustrating that I was getting constantly gaslighted about my pain.
I had then gone for several tests after pushing for change and being heard. At 24, I went to a hospital appointment and, thankfully, saw an amazing doctor who actually made me feel understood. It’s the only time I’ve left a doctor’s appointment crying because I was happy and not frustrated. She reassured me that the pain I was experiencing wasn’t normal.
At 25, I had my laparoscopy; they found endometriosis behind my womb growing towards my bowels. After the gaslighting I’d experienced for years, I was so relieved to finally have treatment.
My journey with endometriosis has been physically and mentally draining. I’m grateful to have found an endometriosis and adenomyosis support group that has validated me and guided me in my healing journey.
How does endometriosis impact you in the workplace?
Before hybrid or full remote working, I used to dread coming to work when I was having a flare-up or if I was on my period. My previous job had banned hot water bottles or any heat-related products, which were the only things that would provide some comfort when I was experiencing a flare-up.
To be sat at a desk for eight hours while my stomach was swelling due to the inflammation in my abdomen and to feel the pain spread to my lower back and legs to then be denied my only source of comfort was a nightmare. I find it difficult to concentrate when I’m in that state; it reduces my productivity, and I then begin to feel guilty that I haven’t done everything I needed to.
Once my flare-up eased, I would cram everything I had missed from previous days because I was frightened about being judged. This ongoing cycle of pain and stress made me feel so tired, which then impacted how I performed at work. I am now fortunate that I can work from home when needed and that I have access to hot water bottles and other things that help me manage the pain, but this isn’t the case for every person who suffers from endometriosis and adenomyosis.
How can a line manager or colleague support a staff member with endometriosis?
Raising awareness in the workplace would be a big help. When the condition isn’t widely known, awareness is key.
Endometriosis affects 1.5 million women in the UK; this is comparable with the number of women who are affected by diabetes, and nearly everyone has heard of diabetes.
What do you wish people understood about endometriosis?
I wish people would understand that it’s not just a bad period.
It can be difficult to diagnose endometriosis because the symptoms can vary considerably, and many other conditions can cause similar symptoms. On average, it takes 8 years from the onset of symptoms to get a diagnosis.
During normal menstrual cycles, the lining of the uterus, known as the endometrium, sheds. Endometriosis, on the other hand, is a condition in which tissue, like the uterine lining, grows outside of the uterus and in other parts of the body where it doesn’t belong. The endometrial-like tissue can attach to the intestines, bladder, and bowel and behave like endometrial tissue, thickening, breaking down, and bleeding. However, because this tissue has no way to leave your body, it becomes trapped.
To find out more about events planned for staff for Women’s Health Month this March, take a look at our Women’s Health Sussed post.