‘Dismissed, ignored and belittled.’ Could it be endometriosis?
Endometriosis impacts 1 in 10 women and those assigned female at birth in the UK.
That’s over 1.5 million people.
To mark Endometriosis Awareness month, we caught up with our Positive Panda, Micky, who was diagnosed with the condition aged 25, over eight years after going to the doctors with symptoms.
A recent study by the charity Endometriosis UK found waiting times for the condition to be formally identified have significantly deteriorated since the pandemic, increasing to an average of eight years and 10 months – up 10 months since 2020. This study has informed this year’s awareness month #coulditbeendometriosis?
Symptoms can fluctuate across the menstrual cycle and from woman to woman, a common theme from the report is that women with the condition are left feeling ‘dismissed, ignored and belittled’ through pre-diagnosis to beyond.
While Micky counts herself as ‘one of the lucky ones’ in that she’s learnt to manage and anticipate her symptoms, this condition still affects all aspects of daily life, from socialising and relationships to exercise, eating and sleeping as well as in the workplace.
Our interview was motivated by Endometriosis UK’s awareness month, but we hope this interview is a reminder of just how crucial it is that awareness raising continues beyond the momentum garnered this month.
Our interview with Micky:
What is endometriosis?
“Endometriosis is the name of a condition where cells similar to the uterus are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding, unlike the cells in the womb that leave the body as a period, this blood has no way to escape.”
What symptoms are linked to endometriosis?
“Chronic pain, fatigue, inability to conceive – the list is extensive, and symptoms vary from person to person. It’s not a fun thing to live with by any means.”
Can you talk us through your diagnosis – how long did it take?
“For a long time I was just told, you’re just really unfortunate with your period pain, but I’d speak to my friends and it just didn’t feel normal. I had nausea, fainting, sickness and I just couldn’t work out why. Especially as it wasn’t constant, for 2 weeks or so each month. It was pretty lonely because no one else my age was crippled over in bed not able to do anything. I felt like maybe I was weak. I first went to the doctors when I was around 16 as I couldn’t cope with anymore painful periods and I got formally diagnosed when I was 25 after a lot of determination and going back and going back.”
So it took 8 years?
“Yeah, and I think that’s pretty standard. I count myself lucky now that I’ve had the diagnosis for a lot of my adult life.”
What symptoms do you have now?
“I have days where I just feel nauseous and faint, and I I can’t get my thoughts straight, because my head just feels like it’s totally like, full and heavy, almost like a migraine that never happens. Last year I had a procedure, which I’ve been waiting for about three and a half years, (again, getting pushed back due to the pandemic). In the time leading up to having that operation my symptoms were really severe, like, really bad. Back pain, hip pain, sickness, everything.”
Is there anything that helps reduce your symptoms?
“But I do find that if I do exercise, I do Pilates, stretching and keep moving throughout the day. I think now I really understand when my period is coming so I can prepare myself.”
How does it affect you at work?
“Most of the jobs I’ve done required me to be in the office 5 days a week, so I’d have to commute daily, often feeling really sick. I used to not want to tell people why I was calling in sick so I’d blame it on tonsillitis. It was ridiculous.I feel like female health is pretty taboo still and most of the industries I worked in before Skating Panda were male dominated, so I didn’t feel comfortable talking about it. I didn’t think people would feel comfortable hearing it either. I think you cover up as a women for other people’s feelings, not wanting to make others feel bad or uncomfortable but by making their lives easier I made mine harder.”
Why do you think the subject make people uncomfortable?
“I think there’s a lack of education in school about female health, for boys and girls – we’d always get split up and learn separately. If you look at the menopause, that’s only recently just started to become less taboo. People know even less about Endometriosis, even women who have endometriosis don’t know they’ve got it!”
How can employers ensure more inclusive workplaces for women with endometriosis?
“Hybrid working. Knowing your home comforts are near and you don’t have to endure a commute on those bad days is a game changer.Also, putting in policies and having an understanding that this is something that somebody can’t help, they’re not doing it to be difficult and actually they all probably work better and harder and feel so much better. Being able to speak to my manager openly makes it so much easier for me to do a good job.
Transparency around the policy so your employee doesn’t have to ask if there is one – it should be in a handbook. Also we do education sessions on subjects often considered taboo – this is such a good way to open the door to conversations with other employees.
Skating Panda has really been a lifesaver, allowing me to do a job of my choice while ensuring there’s things in place to accommodate my condition.”
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There’s still a huge knowledge vacuum on endometriosis, it receives minimal attention despite impacting 1.5 million across the UK alone. Micky led our Lunch and Learn on this subject and helped plug the gaps in our team’s knowledge.
The work Endometriosis UK are doing is invaluable for women across the country and beyond in putting the issue on the agenda. Their report uncovered a host of shortfalls on the subject, aside from the increasing wait time for a diagnosis. Shortfalls that impact a lot of aspects of female health.
To support their ask on the four Governments of the UK to commit to a target of an average diagnosis time for endometriosis of 1 year or less by 2030, click this link.
https://www.endometriosis-uk.org/endometriosis-action-month-2024