When I logged on to start my meeting with Hayley, I wasn’t sure what to expect. Her glistening shiny black hair, beautifully matte make-up and bright smile hid her daily struggle of living with Endometriosis that I was moments away from finding out.
“Hiya” she said, in her northern way. Her friendly face smiled as she got ready to put her complete trust in me.
Hayley, a nurse assistant living with Endometriosis
Journey To Diagnosis – Hayley’s Story
Hayley walked me through her diagnosis journey, which began in her teenage years. She was aware that she had Polycystic Ovary Syndrome (PCOS) after an ultrasound but her pain was getting worse and worse. She turned to Google to start searching for some kind of answer, as we all are guilty of doing when we have a feeling something doesn’t feel right, and it kept coming up with Endometriosis. She admitted that she didn’t even understand what it was back then. Batting off the idea that she could possibly be living with Endo, because she wasn’t ‘bad enough’ to be in A&E.
The pain pushed Hayley to reach out to her GP for another ultrasound. At the age of 17, she needed answers! The look of disappointment took over her face, as if she was reliving the moment she received the same PCOS diagnosis again. Still no answers.
Onto the next step of the process. It wasn’t until she was 18 that Hayley finally had a meeting with a gynaecologist to ‘check things over’. Reenacting the scene of the appointment, she put on the voice of the gynaecologist that day. “Do you want children?” Her eyes went wide, like I imagine they would have done back when she was 18, as she explained that her response was “well yeah..but not yet.” And that was it. She was sent away and told to come back later when she wanted children. Symptoms were not even discussed.
Young Hayley had no idea how to fight or ask questions. The appointment ended and that was that. She walked away believing that she must have been wrong.
“I thought I’d been a big wuss complaining about bad periods.”
When we are young, we don’t know what to do, we don’t know what is normal and how to speak up when something does not feel right. We put our trust in those that know more.
As she was still living at home, Hayley’s mum said enough was enough after going back and forth to her GP for two years, they directed her to a different gynaecologist who she praises for being amazing! The words “I think it’s Endometriosis” came from his mouth and he wanted to do a laparoscopy to diagnose it. With a handful of leaflets about Endo and the surgery, she left and all that went through her head was ‘I’M NOT CRAZY!’
Fast forward to January 2020 the laparoscopy confirmed what had always been her suspicions and Hayley was diagnosed with Endometriosis and Adenomyosis.
“I’d never heard of it until I woke up from my surgery.”
With trying to wrap her head around what this would now mean, Hayley was torn between relief and the fear of the unknown. After the surgery, she was met with even more news. The endometriosis was too advanced and so they couldn’t remove any of it. “They just left everything in there.” Her friendly smile faded, at reliving the moment she was told in her mind, before she sighed…”so yeah.”
To this day, yet nothing has been removed.
Number 1. The prostap injection. This would mean that she would experience a medically induced menopause at the age of 23.
“I was like I’m not having THAT. No way! I am not having it.”
Putting her hands out and weighing up the options, which there weren’t many of, she went on to tell me another way she could manage the pain whilst waiting for her surgery.
Number 2. Progesterone Only Tablets. Not wanting the injection meant that the tablets were her only choice. Although they should have helped Hayley manage her endometriosis, they made her boobs feel sore and she was taking about four a day for a few months before.
Shaking her head and shrugging disappointingly at the little options that were given to her, and with the tablets not working, she was given no other choice. It was to take the prostap injection or suffer everyday. When the pandemic hit, the likelihood of surgery was not going to be an option any time soon.
Being just 23, Hayley could only be on the injections for six months because of the side effects. In November 2020, she had the first injection (with each lasting 3 months). As this was the second attempt at managing the pain, Hayley’s hopes were higher but the periods did not stop.
Bleeding erratically and in pain, she waited for the next injection in early 2021. She looked directly at me, and I could already guess that this hadn’t worked either. It knocked her for six. The periods had stopped but then came bone pain and hot flushes.
As we discussed the prostap injections, she paused and made sure to let me know that she would never tell anyone else going through endometriosis to not give it a go and even admitted that she knew some girls it’s worked great for. Just for Hayley personally, the symptoms didn’t outweigh what she would normally put up with.
Advice To Others And The Pain Diary
Hayley couldn’t stress enough that her biggest piece of advice would be to get a second opinion. At a young age, calling your GP surgery and having appointments about painful intercourse and your period can be a little embarrassing. But if you’re not happy, make that call and ask to see a different GP.
After her own experience of being knocked back by GP’s, Hayley now speaks to a lot of girls through her Instagram. She uses the journey to her diagnosis and her own experience to make sure that other people don’t suffer in the same way she has.
“I look back at myself and I wish I was a bit stronger and didn’t take no for an answer. I wish I fought more.”
Growing up Hayley knew something wasn’t right. After a GP suggested a pain diary to her, that could track her symptoms and how many days a month she was in pain. She came to realise that taking this with you to your appointments meant that it was impossible to be ignored because it was there in black and white. She reached to fetch her phone from her back pocket, before realising we were still on Zoom, to tell me that she still tracks everything.
Working On The Frontline
The hospital where she went along to her first ever appointment with the gynaecologist is the same hospital that she now works at at the age of 25. As she told me about working in elderly care and A&E, the first though that came into my mind was how? How could she possibly work long hours, in a physically demanding job and be suffering the way that she does. I thought to myself, she must really be a warrior and she is!
Long 13 hour hospital shifts actually work for Hayley. I know right! I’m thinking the same. How?
“Three 13 hour shifts a week means I can have my recovery days. If it’s a bad day of pain, I’ll take my painkillers and I know I have the day off tomorrow.”
“I’ve got to work haven’t I!” Shifting from being a nursery nurse to an elderly care nurse assistant, and getting her experience in A&E, gave Hayley the opportunity to have days off in between work to give her body the break it regularly needs. With (in her own words) ‘half-decent’ pain management, Hayley is able to do her physically demanding job and work.
“I’m gonna be in the same situation either way, so I chose to do a job I love.”
Nursing Assistant, Hayler Milner
She praises her employers for supporting her. When she first got the job, a meeting was set up with occupational health and her endometriosis has been spoken about from the get go. Wiping the side of her eye, I could see that having such a supportive work network was overwhelming. She tried to giggle it off a little as she admitted to getting emotional on the phone at how nice it felt to be listened to.
Her heart is set on being a paramedic and working in ambulances so she set foot into the world of A&E for experience and is loving it. Smiling from ear to ear, I could just tell that this is what she wants to do and endometriosis wasn’t going to stop this women from chasing her ambitions.
The beautiful Hayley, chasing her ambitions
Living with this endo is TOUGH. I wanted to know more about her support network and her loved ones that she is surrounded by and she beamed as she started to tell me a little bit about her partner Lewis, who she met when she was just 15.
“He’s my little childhood sweetheart.”
For those of you that remember BBM, Lewis typed Hayley’s pin in, added her and started to get the conversation going. She cringed whilst telling me the story as we laughed hysterically over the way their romance started.
It turns out that they could have had their ‘meet cute’ even younger in life, as Hayley’s now Fiancé used to live round the corner from her. The cross overs don’t end there. Her Mum was at school with his Dad and their grandparents used to live opposite each other on the same road! Hayley’s Grandad had watched Lewis growing up and yet they never knew of each other. That was until of course Blackberry messenger. We laughed again and she threw her hands over her face blushing.
They have now been together for ten years and Lewis showed his commitment to Hayley when he proposed to her five years ago. He is her rock and has been by her side throughout, from her journey to diagnosis and surgery to having to make decisions about their future.
BBM might no longer exist but the love between these two childhood sweethearts will forever run deep.
Speaking Up – Let’s END Endometriosis
When you are living with endo, it can feel lonely and isolating and people can be left wondering whether anyone will ever understand the pain. With more and more people turning to social media to document their individual health journeys, Hayley set up her Instagram account in 2020.
She now has just under 3k followers and raises awareness through her platform by sharing the true reality of living with a chronic condition every day. The social media page gives other people living with the same conditions as Hayley, or in the process of a diagnosis, someone to relate to.
Warrior Hayley is determined and ambitious to do all that she can to make everyone more educated on endo whilst currently waiting for an appointment date for her surgery. Her latest appointment was Valentine’s day, where there was no love letter given but news that the endometriosis has grown, “My ovaries are now stuck to my pelvic sidewall and I still have a cyst on my fallopian tube.”
After finding out her endometriosis had grown, the hospital where she was hoping to be referred to has an estimated 8o week wait for surgery. 80 weeks!
“I need more surgery but that hospital has no ICU or HDU. It’s just a precaution.”
Although this wait time is unbelievable for somebody to continue living through pain daily, Hayley is having to be referred to a different hospital following precautions. Appointment date pending.
She had to find her own way of fighting back.
This endo action month, she has been promoting stories of other women living with endometriosis to support awareness around the the second most common gynaecological condition in the UK.
Hayley Milner. You are a true warrior!
If you need of support or want to find out more information on Endometriosis please use the following links below.