My Journey with Endometriosis

A Note Before You Read -

Just before you get into this blog, I want to say that it’s not going to have lots of miraculous solutions or tips—because honestly... I don’t have them! This is an honest reflection of my journey with endometriosis and how living with it affects my life. It was also written on a day when I was in the thick of my luteal phase, so if anything, it might actually feel a bit heavy—but I am all about being truthful, and sometimes the reality is hard!

Let’s start with a quick explanation of endometriosis, just so we can all be on the same page:

Endometriosis is a chronic and often painful condition where tissue similar to the lining of the uterus (called the endometrium) grows outside the uterus. These growths, often referred to as "lesions" or "implants," can develop on the ovaries, fallopian tubes, outer surface of the uterus, and other organs within the pelvis. Unlike the endometrial tissue inside the uterus, which exits the body during menstruation, the tissue outside the uterus has no way to leave. This can lead to inflammation, scarring, and sometimes the formation of cysts called endometriomas.

In terms of the physical burdens of endometriosis, I actually have it relatively easy compared to many other people. I get the crippling pain a couple of days per month, and the extreme bloating can last anywhere between 3–5 days—but other than that, I don’t experience too much discomfort outside of menstruation.

I cannot even begin to imagine how people cope when they’re experiencing it regularly. In fact, I just finished reading a book called Blue Sisters by Coco Mellor's, where one of the main protagonists has endometriosis and takes pain management into her own hands with disastrous consequences. While the book is fiction, I can really imagine this to be many people’s true reality.

The first time I experienced the pain I was 29 years old and had absolutely no idea what was going on. I had felt cramps before, but this was different. I couldn’t sit upright or stand, I started to sweat as if I’d been out running in 30-degree heat, I couldn’t string a sentence together and I started to vomit!

If I hadn’t been on my period (and suspected it was linked), I likely would have asked someone to take me to the hospital. But I tried to convince myself it was a one-off pain and that it wouldn’t happen again.

Unfortunately, the pain became regular and started to occur on the second day of my period every single month.

When I first started to experience this, I worked in a male-dominated environment. While my managers were supportive, there was an element of embarrassment linked to having to explain what was going on—and also shame attached to having to go home.

(I of course realise this is an issue deeply rooted within society and not something I should have been dealing with, but that didn’t make it easier to cope with at the time.)

To my surprise, I found that often the criticism came from women, with comments like:

• “We all have periods.”

• “Why can’t she just get on with it?”

If you’re one of those people, I’d like to let you know LOUD and CLEAR... we do not all experience periods in the same way, and there are many life-altering conditions that women deal with—often silently.

We don’t need more judgment. We need more SISTERHOOD.

Before I knew it, I was experiencing an intense mental dread in the lead-up to my period. Knowing it was just around the corner felt unbearable.

Being unsure where I’d be or what I’d be doing when the pain struck felt completely overwhelming—alongside the intense PMS I already experienced during luteal, that week began to feel pretty dark.

And whilst I have your attention...PMS isn’t just something women make up to make people’s lives difficult—it’s due to very real and significant hormonal shifts within the body.

So please don’t be that exhausting person that thinks they know a woman’s body better than she does. You don’t!

As the pain became a permanent part of my life, I knew it was time to seek medical help. I hadn’t really thought about it being endometriosis until other people started to suggest it. For months, I was still convincing myself it was something that would just sort itself out in time.

Now for the part of the story we have all sadly heard a thousand times before when it comes to women’s health...

It took many months and appointments to come across someone that finally took me seriously.

I endured all the bullshit appointments of people asking:

• “Have you tried a hot water bottle?”

• “Have you tried paracetamol?”

• “Are you sure this isn’t just normal for you?”

• “Would you like to go on the pill?”

After months of frustration, I got lucky when a couple walked into my work who changed it all.

I was working as a kitchen and bathroom designer and luckily they were looking for a new bathroom just at the right time, they worked as an intensive care consultant and a medical negligence lawyer (talk about a power couple), and we ended up discussing all the disappointing appointments I was enduring.

As soon as I’d finished telling them my story, they insisted I complain to my surgery and ask to be referred to a different hospital via the Choose and Book system—this is something EVERYONE is entitled to, so I really recommend looking into it.

I eventually got referred to Southampton Hospital and felt a glimmer of hope... but that was soon extinguished.

I attended the appointment with my boyfriend, and within minutes felt the familiar narrative appear:

• “Are you SURE the painkillers aren’t helping?”

• “Your internal scan was clear though?”

• “Some women do just vomit due to the pain during their periods.”

I left feeling totally disheartened and phoned my mum in tears. I once again felt completely let down. I also remember feeling baffled that it was a woman speaking to me and telling me that the pain I was experiencing was normal, at one point I looked up and asked her if she knew anyone that vomited on their period and she replied saying 'well no but everyone has different pain tolerances'.. I think my mouth literally fell open! Why wasn't she on my side?!

All I really wanted was for someone to listen when I was telling them how exhausted I felt being stuck in this cycle of pain and anxiety. I was doing SO much of my own research and trying all that I could behind the scenes to help myself, but I just needed someone to believe me.

They offered to repeat the scan I had already had done. At the time it felt a bit pointless, but I was willing to do whatever they suggested in the hope of a different result.

Fast forward 6 months and I was back in the waiting room.

When the lady came out to call my name, I instantly had a good feeling. She took me in for my internal scan and asked me questions—but instead of absentmindedly typing my answers, it felt like she was REALLY listening.

She started the scan and within a few moments said:

“Yes, I can see endometrium on your left ovary, superficial endometriosis and adenomyosis too.”

I cried with relief—finally feeling like I wasn’t imagining the pain—and also sadness at how often I had allowed people to interfere with my sense of inner trust.

How many times had I sat and wondered whether I was really experiencing something different from other women? Or was it true that I just couldn’t handle it?

I left the scan with a sense of validation and was told I’d hear back within 3 months.

Here we are, 5 months later... with no communication so far.

Today, in desperation to escape the darkness of luteal, I decided to call the hospital to check for an update on the follow-up appointment. I was met with a cheerful receptionist explaining that there were no appointments available for some months yet—even if I accepted a phone call.

I would just have to accept that I’m on the waiting list.

While I don’t blame anyone in particular, it’s a very sad reality of being a woman in the healthcare system. I don't claim to know the answers, but I do believe we desperately need more passionate female advocates.

This story is far too common, and it makes me sad that many women have given up far sooner in their journey. If it hadn’t been for meeting two people so willing to support me, I probably would be among them.

Advocating for yourself gets so exhausting—especially when you're already dealing with the physical and emotional toll.

I’m not just writing this for myself. I’m writing it for all women who feel like they are being ignored—whatever their condition. You really mustn’t give up because if we do, we’re much easier to ignore.

Make the complaints. Shout about being treated unfairly. Know that you’re deserving of an answer and what you’re experiencing isn’t something you should just “put up with.”

There are so many experts out there that aren’t NHS doctors—explore other avenues, read specialist books to educate yourself, and do whatever you can that helps!

I hope that the future will bring more understanding and more options for people suffering, to live a happier existence.

If you have someone in your life who struggles, then please know that sometimes the kindest thing you can do for them is simply listen when they say it’s difficult.

In my experience, we aren’t always looking for a solution as much as for someone to understand. ❤️

Congrats if you’ve made it to this point! Just before I end, a special shout-out to my beautiful eldest niece, who has dealt with endometriosis and all the shit that comes with it since she was really young—and has been incredibly supportive to me during my experience.

I love you with my whole heart Mads!

Elle x

Picture by Natalie Silvester

Resources that have helped me - Books - Period Power - Maisie Hill Woman Code - Alisa Vitti Heal Endo - Katie Edmonds Instagram Accounts - @sophie.richards @arc.woman @thesyncway