The month of March brings forth a lot of things; the start of spring, the balance between glorious sunshine and damp grey days, and the sneeze inducing curse of hay fever. It’s also Endometriosis Awareness Month.
Recently, endo has been getting a lot of coverage on local news and in parliament. This is such a good step forwards, but there’s still so much misinformation being spread about the disease. With that in mind, I thought it was time to give the world a cheat sheet of information; an Endo 101 if you will. So, whether you are an Endo warrior yourself, trying to learn more about it, or have never heard about Endo before, this is for you.
Table of Contents
- What is Endometriosis?
- So, what are the symptoms?
- What does the pain feel like?
- Are everyone’s experiences are different?
- Is it a period problem?
- How do you find out you have Endometriosis?
- Can’t you get diagnosed in the doctor’s office?
- Can having a laparoscopy cure it?
- Can you have children if you have Endometriosis?
- What causes Endo?
- Can medication cure it?
- Can food and exercise help?
- Why hasn’t anything been done about this disease?!
What is Endometriosis?
Endometriosis (or Endo) is a chronic disease that can affect people who are born with female reproductive organs. It’s an inflammatory disease that centres around endometrial tissue (that normally grows inside the uterus as a lining, and sheds to cause the period). However, Endometriosis happens when endometrial tissue grows outside of the uterus, in places it shouldn’t be. Whilst a lot of the problems start around the uterus, it is a full body disease with many symptoms and has been referred to as one of the most painful conditions out there. It’s also a surprisingly common condition, with 10% of people assigned female at birth suffering from endo![1]
So, what are the symptoms?
Apart from the tissue growth, the most common ones are-
- Painful periods
- Heavy periods
- Pain during sex, peeing, or pooping
- Chronic fatigue
- Pelvic pain
- Difficulty getting pregnant
Whilst these are the core ones, every person with Endometriosis will have individual symptoms. I had all the above, as well as very painful ovulation, rectal bleeding, sciatica, leg weakness, and migraines. Pain typically tends to be the first noticeable sign, but some people don’t have any symptoms until they try to get pregnant.
The endometrial tissue typically stays around the uterine area, like on the ovaries, but in serious cases, it can be found on the bowel or diaphragm. Endo has even been found in the brain.
Photo by Jonathan Borba on Unsplash
What does the pain feel like?
You are going to notice a theme here, and that is Endometriosis is different for everyone, including the type of pain. Typically, Endo pain can be pulling, burning, searing, stabbing, aching, and cramping. I found my period symptoms were typical of a period, just intensified to a complete other level. But the worst pain was always around my ovulation period; it felt like I had knitting needles stabbing me in the uterus (graphic, I know). The pain would be so severe that I would typically end up in A&E just to survive.
So, everyone’s experiences are different?
Absolutely! A lot of it can come down to where the endometrial tissue is placed, and how it interferes with the body. Once it’s diagnosed, Endometriosis can also be split into stages, based on the spread and the depth of the tissue outside of the uterus. Stage I is minimal and shallow growth; Stage II is deeper, maybe with some scar tissue and adhesions; Stage III is even deeper and has spread; and Stage IV is where the endometriosis has spread to other organs and is very deeply implanted. Now, the stages don’t equal pain or symptoms. You can have Stage IV Endo, and have no physical symptoms until you struggle with infertility. Or you can have Stage I Endo, and be completely disabled by it. It’s all about where the Endo sits.
With Endo coming form the uterus, does that make it a period problem?
To call Endometriosis “a period problem”, would be invalidating the condition and the people who live through it. Endometriosis is a full body disease.
How do you find out if you have Endometriosis? Do you just go and see your GP?
Cue the eye twitches from anyone who has suffered with Endometriosis. It is an ordeal and a minefield to get taken seriously when talking about Endo, let alone getting a diagnosis. On average, it takes “8 years and 10 months between someone first seeing a doctor about their symptoms and receiving a firm diagnosis.”[2] WHAT?! For me, that involved getting shuttled between GPs, gastroenterologists, nurses, gynaecologists, psychiatrists, and surgeons. For years, I was kept being told I was having rupturing cysts that had burst before they could see it on imaging. Or it was IBS. Or just part of my anxiety disorder. Or just my period.
When I was finally taken seriously (seven years after my first GP appointment), I was put on a referral list that was going to take me a year and a half to get seen. That’s not even the treatment waiting list, only for referral. My family had to pay for a private referral to get me seen before my condition got worse and spread. Ten months after that, I had my treatment and diagnosis on the NHS.
So, you can’t just get diagnosed in a doctor’s office?
Nope, the only way to truly diagnose Endometriosis is to have a diagnostic laparoscopy. It’s rare for Endo to appear on MRIs or ultrasounds unless it is closer to Stage IV. A laparoscopy is key-hole surgery under anaesthetic, where a surgeon uses a small camera to reach a diagnosis. If you are having the surgery done with a specialist, this is also where they can treat it! A lot of gynae or general surgeons will treat endo with ablation, where they laser the endo off the top of the affected organs. However, most Endo specialists will perform an excision where the pockets of endo are cut out at the root.
It’s important to remember that general surgeons are not gynaecologists. And most gynaecologists are not Endo specialists. The best diagnosis and treatment come from an Endometriosis specialist.
So having a laparoscopy can cure endometriosis?
Unfortunately, no. Endometriosis cannot be cured. It’s a bit of a blunt statement, but it’s true. It can be treated with a laparoscopy. There are things you can do to hold off some of the symptoms. But once you have Endometriosis, you’ve got it. The tissue can also grow back or appear in different spots, so it’s a disease you must monitor for the rest of your life.
Can you have children if you have endometriosis?
Around 70% of endo sufferers go on to have children! Having a laparoscopy really helps those odds.
But how did you get it? What causes Endo?
The cause of Endometriosis is completely unknown. So, I have no idea why I have it. There are so many different theories as to why Endometriosis exists, including metaplasia (where cells transform into other cells) or that it is an immune disorder. You can find out more information about suspected causes of endo at the Endometriosis UK charity website.
There’s not even any medication that can cure it?
You can be put on a variety of birth control options to stop your periods and ovulation, which in turns, stops endometrial tissue growth. But you cannot be on birth control forever, it’ll have further negative affects on your body. The only medication you can really take is pain relief. Paracetamol doesn’t cut it, by the way. Before I had surgery, I was on a mix of Codeine, Diclofenac, and Tramadol. That’s some mega painkiller activity.
Can food and exercise help with endo?
This is an interesting question because the answer is both yes and no. Yes, in the way that looking after your health, eating well, and exercising is very good for you. Yes, in that way that some foods cause inflammation and that might be linked to Endometriosis. But no, because eating a specific diet will not cure you of your endometriosis. It might reduce inflammation as a symptom, but it won’t stop endometriosis existing. Don’t let those TikTok and self-help books fool you. It may have helped some of their own personal symptoms, but specific diets cannot cure you of Endo.
This question can also come across as a contentious issue, as many health problems that affect those assigned female at birth have often been incorrectly belittled to being a “weight problem”. Endometriosis, and almost all its sister conditions, is a disease. It is not a weight issue.
Why hasn’t anything been done about this disease?
Folks from all walks of life will argue reasons for this until the cows come home. Personally, I believe medical misogyny is the reason the research and support for this disease is so stunted. Things that are “women’s problems” are very rarely taken seriously, even in this day and age. Thanks to endless campaigning and shouting loudly, we are only just getting traction moving. Maybe, one day, it won’t take us eight years of pain and bodily deterioration to be taken seriously.
If you have any specific questions, make sure to check out the Endometriosis UK website. It’s a wonderful charity that does great work for those affected by Endo and their loved ones. Also, feel free to drop me a comment below if you have any questions about my experience. Sometimes it’s just good to know you are not going through this alone ❤
[1] https://www.endometriosis-uk.org/endometriosis-facts-and-figures
rosie abigail 
Leave a reply to Sara Flower Cancel reply