Staff bravely share their experiences living with endometriosis as York College is recognised for support it provides
Members of staff at York College have courageously shared their stories of living with endometriosis to raise awareness of the often-misunderstood chronic condition that affects one in ten women.
Our Student Experience Manager Eleanor Bennett and Student Data & Exams Manager Isla Beevers have spoken openly about their personal journeys to mark York College being awarded Endometriosis Friendly Employer status during the Endometriosis Action Month of March.
College has been recognised for the comprehensive support we provide staff living with endometriosis and its symptoms.
Eleanor and Isla’s stories not only shed light on the challenges of living with the condition but also emphasise the importance of having a workplace that listens, understands and adapts to the needs of its employees.
Both women also reflect on how York College is making a tangible difference in their day-to-day lives.
Their words provide a powerful example of how workplaces can be allies in the fight against endometriosis and ensure that all employees have the resources they need to thrive both personally and professionally despite the difficulties posed by the condition.
On being asked what working for an Endometriosis Friendly Employer means to her, Eleanor said:
“For me, knowing that we have knowledge and expertise within our HR Team, and knowing the information that is therefore available to our managers, means that already that’s breaking down some barriers and some of the stigma.
“Because of the nature of what endometriosis is, you’re talking about your reproductive system, your periods, you’re talking about the impact that can have on your pain levels as well as other issues you might experience.
“Just knowing that you’ve got someone at work who has a baseline knowledge of the effects of endometriosis is great. It’s really personal and, knowing that you’re not having to go through that first step of educating someone on the condition and how it affects you, really helps.”
Eleanor went on to outline the support, kindness and reassurance she has received from College with the management of her endometriosis symptoms, so she is able to work to the best of her ability, explaining:
“I’ve worked here for eight years and during that time I’ve had three surgeries. I’ve had multiple different line managers who have, first of all, been kind and understanding. They really wanted to take the time to listen to me and to look at how they could support me.
“Particularly, in the last 18 months, I’ve worked with Jill Durkin (HR Manager) and she has supported me in terms of getting me equipment so that I can work to the best of my ability. That takes away part of the mental stress of having a chronic condition.
“In an ideal world, everyone who is a line manager should have a knowledge of what endometriosis is. The condition affects one in ten women so, if you think about our student population, that’s massive.”
Endometriosis can often be regarded as an invisible condition as symptoms are not always on the surface level and Eleanor believes people working for different employers might not be benefitting from the same levels of support.
“I haven’t experienced any issues working at College, but I definitely feel that there are challenges for other people in other workplaces. Others may feel that it’s not taken seriously, or they’re made to feel like they’re exaggerating, because essentially it’s an invisible illness to some extent.
“You can’t see the level of pain that someone’s in. If someone says they are in pain, believe them. If someone tells you that they’re suffering with something, believe them.”
Explaining the practical ways in which College help her carry out her daily duties, Eleanor added: “I have an ergonomic heated chair as I suffer with inflammation and pain in my back. I have a desk which moves up and down because, if your womb is swollen, it’s important to keep moving. Adjustments to my hybrid working have also been made, but the biggest support I have received was just being listened to.”
Highlighting the current challenges she is facing on her endometriosis journey with great honesty, Eleanor added:
“I have had to make some difficult decisions over the last year in terms of medical treatment. I’m taking injections at the moment and am going through a chemical menopause. It happened overnight and all my hormones and symptoms stopped. It was pretty catastrophic. What might have happened over five to seven years happened at a finger click.
“Now the decision will probably be to have a hysterectomy and the biggest thing for that is getting your head around it, mentally and emotionally. It feels very final and there are lots of emotions connected to that part of your body with being a woman.
“Having people that I know that have lived experiences of that has helped. Since I’ve started to talk about it, people have messaged me and I have a little network of people in the College who I know are going through similar challenges.
“Also, with being open with my line managers about it, I’m giving them an opportunity to support me, just like we should for all sorts of challenges in life.
“Having that level of awareness, knowledge and flexibility in the College has massively reduced the stress.”
Unfortunately, endometriosis can often be difficult to diagnose and, sadly for Eleanor, her symptoms were dismissed right up to the point that her symptoms caused her to collapse and saw her admitted to A&E.
“I was diagnosed about 12 years ago, I was 26,” she explained. “I was diagnosed almost by accident. I’d experienced painful periods, passing out and throwing up since I started my period as a teenager. I’d never been referred on by a doctor to see a specialist, it was always just dismissed as being unlucky.
“One day I collapsed and ended up in A&E, they thought I had an appendicitis. As I was coming round in the hospital, the gynaecologist came in and told me that I had endometriosis. I asked him if I’d be able to have children and he said I’d probably struggle. It was hard because I was by myself on a hospital ward. I just sobbed.
“There’s such a struggle sometimes in terms of being heard by medical professionals and to get referrals. I still have that battle with getting the right care now, so you don’t want to be having battles with your employer as well.
“Fortunately, I was able to have babies, so they were wrong in terms of that! The advice that they give is to try and get pregnant and I hadn’t been with my partner very long. We lived in two different cities and it did accelerate all that side of things.
“I had six months of injections when we were trying for a baby and I also had surgery between my two boys. I’ve been incredibly lucky that I haven’t had to have IVF.
“For some people, they have no symptoms, and they don’t know that they have endometriosis until they try and get pregnant. So, there’s lots of varying degrees and differences of symptoms you can experience under the one umbrella.
“I’ve had a few surgeries and I’ve also recently had an MRI scan which has shown that I have something slightly different also called adenomyosis, which is when the condition is inside the muscle of the womb as well.”
When the time comes for Eleanor’s surgery, she feels comforted to know that the support she receives from work will take away a little of the stress this procedure will put her though. She is also passionate about being an advocate for the condition, declaring:
“Having an employer who is there and understanding, who puts plans in place and tailors what I need and knows who I am as a person is so reassuring. Knowing that I’ll be off work for a long period of time when I have my hysterectomy is quite scary, but I feel supported.
“What’s really nice is that, since I’ve been more open in the workplace, we’ve gathered a selection of books and have online resources to support others. I try to be someone at York College who people can talk to about this. I’ve had lots of conversations with people who have lived experience of it. What’s more lovely in a way is listening to men talking about their wives, girlfriends, daughters and students.
“I said to my husband recently, ‘This is actually really hard for you too’. If I go back to when I was diagnosed, I had a conversation with him and said, ‘If this isn’t right for you then it’s okay. You’re taking on a lot and it might be a struggle’. That’s a really difficult conversation to have with someone you love. Thankfully he was okay with it!
“If it affects one in ten of people assigned female at birth, you can guarantee that everyone will know someone who has this condition. Or they might not know. You could hear their symptoms and could know someone who’s going through that without knowing what it could be.”
As time moves forward, the awareness of the effects of endometriosis are improving but there is still work to be done. In order for more support to be available for those living with the chronic condition, more research and resource is needed, with Eleanor pointing out:
“March is Endometriosis Action Month so we are asking for more investment in research to reduce diagnosis time and to get better care for people.
“I think there’s a lot more awareness from when I was first diagnosed, but there’s still so much more that we could do.
“Especially for me, the disruption that people might experience in their teens and early twenties when they’re sitting in exams in absolute agony is very obvious. For me, I absolutely saw dips in my results on those certain days. It could massively change the course of people’s lives who are impacted by this pain.
“Endometriosis UK, which is the charity we are raising money for, have got some really useful resources that you can print off and take to the doctors with you.
“You can track your symptoms and provide evidence, because you do have to be able to advocate for yourself. That is part of the battle when you are tired and in pain, to have to keep advocating.
“You’ve got to remember what’s happened and remember when you experience things. So, the fact that we now have York College saying we’re here to support you is big!”
Isla also shared the difficulties she has experienced due to the condition and how, once diagnosed, College stepped in to provide extra support.
“Initially, I had symptoms, but all College could see was at surface level because I didn’t have a diagnosis,” Isla explained. “As soon as I got diagnosed, the support was there. My sickness was adjusted to reflect that it was due to endometriosis. I was also sent to occupational health which was really good because they knew what support I might need from work. Until the point of me getting a diagnosis, they didn’t know what they needed help with and nor did I.
“I had a female manager at the time of my diagnosis who hadn’t experienced endometriosis in any way, but she was very understanding. My manager now is also very understanding. She allows me to work from home and that flexibility is so, so important because it might get to 2pm and I get to a point where I can’t continue, but then I can log back in during the evening after I’ve had a rest.
“I think because of the support, I’m also more open about it than I used to be.”
Isla added that Endometriosis Friendly Employer accreditation will reassure anybody applying for a job at College that they will receive appropriate support should they be living with the condition or get a future diagnosis.
“If I changed employer and they weren’t an endometriosis friendly company, I would worry about their thought process because they might not necessarily understand what it means in the wider scheme of things,” she said.
“I’m so pleased that College has this commitment because it does highlight their commitment to supporting those with the condition.
“I think it will reassure people to be open and honest at stage one of the application process because, if they state they have this condition, College already knows and they can start to think about adjustments and things that will help this person. It allows people to be more confident about applying.”
Isla is less confident about York College’s level of support and awareness being matched at other workplaces.
“Generally speaking, in our world, I think there is still a way to go unfortunately,” she said.
“In the UK, more than 1.5 million people suffer from this condition but there isn’t enough information about it. I think the lack of awareness is because it’s a gynaecological problem so it’s hush hush.
“It also takes so long to diagnose because people assume it’s just period pain. Sometimes you can feel like you’re being fobbed off because the only way to diagnose it is through a scan.”
York College HR Manager Jill Durkin, who is committed to providing support to colleagues with endometriosis, has witnessed the impact educating staff has had on those suffering from the condition.
She said: “We have just signed up to the pledge but, really, the certificate is just testament to the work that we’ve been doing already and adjustments that we make to support staff with this condition
“We’ve found that, with the right support, people can thrive at work in a way that perhaps they have previously struggled to. Sometimes it can be just small adjustments, but it just makes such a difference.
“We’ve purchased TENS (Transcutaneous Electrical Nerve Stimulation) machines to help with pain management, we’ve sourced specialised chairs to increase comfort, we’ve paid for staff to go and see private consultants.
“There’s a leading specialist in Sheffield called Dr Baxter and we’ve arranged for staff to see him, which has then led them to being able to access different medications that they wouldn’t have otherwise been able to.”
As part of Endometriosis Action Month, York College staff participated in a Tea for Endo event which aimed to raise awareness and provide practical assistance to those affected, as well as to raise funds for Endometriosis UK. To donate, click here.
For more information on Endometriosis UK, click here.
Click here to learn more about working at York College.
