What is Endometriosis? | Endometriosis Action Month

March is Endometriosis Action Month. You may vaguely know of the condition. You may recognise the name. You may have absolutely no clue what I am talking about. Well, it’s time to change that. 

Trigger warning – there will be discussions of periods, blood, fertility, and medication within this post. 

When discussing Endometriosis (Endo), I speak from a place of empathy. I live with the hormonal condition Polycystic Ovarian Syndrome, a sister condition to endometriosis, and am currently undergoing medical discussions to see if I also have endo (what’s one more chronic condition, eh?!). I have also cultivated a little platform here on this blog and I would feel remiss if I didn’t use it to discuss things that are important to me – things that I think need to be shouted about, not whispered about. After all, ending endometriosis starts by saying it. 

So, what is Endometriosis?

A period is when hormonal changes occur in the body, and the lining of the uterus starts to shred – ergo, bleeding. But with endometriosis, there is lining elsewhere in the body too – lining that reacts to the hormones. This lining also breaks down and bleeds but has nowhere to go. This can lead to a build-up of tissue that is unable to escape, which can come with pain, inflammation, scarring and cysts as well as a myriad of other symptoms. 

What are the signs and symptoms of Endometriosis? 

Like most conditions centring around hormones or stemming from periods, they can be different for everyone. And that is a pain in the butt when you are trying to get diagnosed – but more on that later. The most common symptoms are – 

• Period pain. And I mean period pain beyond the norm, whatever that is; it’s debilitating, life-pausing period pain. Staying on the pain theme – 
• Pain in the stomach and back. Now, this doesn’t have to be during a period, and can be whenever, as hormones are hormone-ing all the time, but this pain can be worse during a period. The pain can also be sciatic, and spread both up the back, through the butt, and down the leg.
• Surprise surprise, more pain across daily life. This can include when going to the bathroom or pain during or after sexual intercourse. 
• Moving away from pain, other symptoms can include feeling nauseous or dealing with diarrhoea or constipation, especially on your period. You may also find blood in your pee or poop – again, this is more common around your period.
• One of the symptoms that can be the first to raise the alarm is living with irregular periods or heavy periods, or even with increased clotting. Spotting or bleeding between periods is also not uncommon.
• Difficulty getting pregnant or dealing with fertility is another calling card of endometriosis, but that doesn’t mean you cannot get pregnant if you have endo. 
• Finally, studies have shown that endometriosis, whether undiagnosed or not, ties in with depression and anxiety.

With those symptoms in mind, if you are still someone who thinks people are overreacting when talking about periods, you need to open your eyes and learn. Learn about the reality that fifty percent of the population live with, and learn about the conditions that can make a horrible experience even worse. 

So what are the causes? And how can you get diagnosed?

Just like finding the cause of endometriosis, getting diagnosed is not easy. In a sad fact, it typically takes eight years to get a diagnosis from the first showing of symptoms. It’s not like walking into the doctors with swollen tonsils and coming away with antibiotics. Endo has similarities to other conditions, and can involve eliminating these conditions before making any headway. It appears similar to PCOS; on paper, it looks similar to IBS; sometimes, it’s even mistaken for ovarian cysts or torsion. You can undergo blood tests and scans to help diagnose suspected endometriosis but currently (at time of writing, at least), there is only one way to confirm suspected endo and end up with a diagnosis – a laparoscopy. This is keyhole surgery where an incision is made near the navel, a small camera is popped in, and it looks around inside the body for signs of endometriosis – like built up tissue. Sometimes, the endometrial tissue can be removed then and there, either as a form of treatment or to be taken out for further investigation.

With that in mind, it is worth saying that endometriosis is never a condition you should self-diagnose. On one hand, having untreated and unsupported endo could result in years of pain and irreversible damage. On the other hand, the symptoms can appear similar to cancers and other illnesses that could become deadly if untreated. If you suspect you may have endometriosis, please please speak to your doctor.

Let’s talk treatment

I’ve already touched on laparoscopy, and how it can be used as a treatment. However, endometriosis might not be found via laparoscopy, but that doesn’t mean you don’t have endo! Simply put, diagnosis and treatment is a minefield for endo sufferers. Currently, there is no cure for endo. At the moment, outside of having a laparoscopy, the best ‘temporary cure’ is via hormone treatments. Hormone treatment such as birth control pills can limit the production of oestrogen (one of the key hormones in periods) and in turn, can limit the amount of tissue being built up in endo. However, there are many treatments being developed, so there is hope for the future.

In the meantime, there is focus on symptom management. With everyone and their symptoms being so different, symptom management can mean something different to each person. Some people can get by with painkillers and anti-inflammatories, in varying degrees of strength; I’m currently in the middle of a flare up and am needing co-codamol to bring me any sense of normalcy. Some sufferers utilise physiotherapy to alleviate pain, whereas others opt for heat or water therapy. Due to the subjective nature of endo, symptom management is a conversation between doctor and patient. 

Now, I am not a doctor. I am just a woman who exists within the realm of hormone conditions (and that’s not as much fantasy fun as it may sound). My knowledge comes from my own experience, discussion with doctors, and research via endometriosis charities. This post is not to help you diagnose yourself. This post exists for two reasons and two reasons only. Firstly, to remind you to speak to your doctor if you have concerns. And secondly – I want to talk about endometriosis and other hormone conditions. I want to SHOUT about it. I want the whole world to be aware of these conditions and the realities of them.

Did you know that endometriosis affects just as many people as diabetes does?

Endometriosis UK

Did you know that endometriosis affects just as many people as diabetes does? Diabetes. That famous, researched condition that we all now know about, that we are taught about in school, that we know the warning signs for. The lack of awareness around endometriosis stems from the fact that it affects mostly women or people with uteruses so simply has not been talked about in the same way. It’s too taboo, or unimportant, or reactionary. But that is not the case. We need to talk about it. 

There are plenty of creators out there who talk about endometriosis, who share their daily life with endo, how they got diagnosed, how it is their normal. One of my favourites is Abbie over at @cheerfullylive on Instagram. Favourite might be a strange word to say about a person and social media account that shows the harsh reality of living with endometriosis, but it’s true. Her raw honesty is so needed in a space that is normally so curated and fake. She shows the reality and advocates for endo on a larger scale, and just seeing her posts has made me feel less alone when looking at my own life and wondering ‘maybe this pain isn’t normal. Maybe, it could be something more. I need to reach out for help’. I’ll also be documenting my journey to diagnosis (or diagnosis into something else if it’s not endo) over on my Instagram, if you want another hormone condition advocate in your online space.

---

If you’ve made it this far, thank you for reading the rambles of an impassioned hormone condition advocate, who just wishes the taboos and the shushes would stop. If there are three things I want you, dear reader, to take away form this article, they are these – 

1. If you have any concerns, speak to a medical professional
2. Never self-diagnose endometriosis (or any condition that can have harmful impacts on life)
3. Talk about. If you have periods, talk about them with your friends. Talk about what is your normal, what is their normal, talk about how they impact your life. If you don’t have periods, don’t shut down when you hear about them. Listen. Learn. Support. We are a community. And it is this community that is going to change the way endometriosis is talked about. 

Thank you for reading,
Rosie x

If you want more information on Endometriosis, or want to know where I found out a lot of my information, Endometriosis UK and the NHS website have been invaluable resources, as well as discussion with my own GP.

Socials: Instagram | Twitter | Facebook | Pinterest | Tiktok

Educate & Donate: Stephen Lawrence Day | Stonewall UK | Survivor’s Trust | Mind |