10% Of Women Suffer With This Disease, Yet It Is Hardly Talked About — Part 1
Written by someone who is not only living but learning how to thrive with advanced and reoccurring Endometriosis.
In this article, I combine my personal experience with well-researched facts. I’ve written it in 5 parts:
- What is endometriosis, my first symptom, and why do women struggle to get a diagnosis?
- The theories on the causes of Endometriosis, misinformation and how I blamed myself when I was diagnosed.
- The possible implications to fertility including the process of IVF to remove my eggs and freeze embryos. Where I did the IVF treatment and how much it cost.
- Why I changed my mind about birth control to suppress Endometriosis as a short-term treatment plan. Working on a holistic long-term plan which will support my body’s natural healing abilities
- Ways I’ve learnt (through trial and error) to cope and live with Endometriosis. I will focus on the lifestyle implications and how to ensure quality of life is still kept high.
This article should be used for informational purposes only and is not meant to be taken as medical advice.
Let me start at the beginning. I vividly remember my 11-year-old self going to the bathroom one morning at school. There was an intense pain in my lower stomach, my insides being squeezed together and then twisted and then squeezed again.
I was shocked when I saw blood but quickly realised that this was my period
It’s here. This is what a period feels like!
Murphy’s law that this happened on the morning of a school outing. I had to go home because I was in so much pain.
Fast forward 2.5 decades and the pain never stopped. Every month I would be crippled with pain which often led to nausea and vomiting. I would dread my period.
Missing school became days away from work, but
“This is normal. Some women get it worse than others.”
was the advice from all the health practitioners (including gynaecologists) I had been to over the years. Not one gynaecologist mentioned the word ‘Endometriosis’ or explained that I could have it.
Period Pain — “Just Live With It!”
Debilitating pain during periods is NOT normal and you do not need to
“Just live with it!”
It is one of the most common symptoms and my first symptom of Endometriosis. It can start years before the Endometriosis progresses. It should be said, however, that it is not the only symptom of Endometriosis; there are many more. To name a few — painful bowel movements, IBS-like symptoms, infertility, abdominal pelvic pain, painful sex and bloating.
Although all women of reproductive age suffer from period pain and describe it as cramps and sharp pain, it should not be so severe that you can’t get on with your day.
In June 2022 (age 36), I felt an unusual pain in my lower left pelvis, which I dismissed as period pain because it came just before my period. I thought maybe my period pain was evolving. In hindsight, I should have had it checked right away — although everything always seems so obvious in hindsight right?
In January 2023, my husband joined me in London 6 months after I had moved from South Africa. He happened to arrive the day before my period started and the pain in my left pelvis was excruciating. I had no choice but to treat him to a day in the hospital’s emergency unit.
While I was getting a transvaginal ultrasound, the nurse announced
“You have Endometriosis. I see a giant Endometrioma on your left ovary.”
My immediate question, and I am ashamed to say it now, was
“What is Endometriosis?”
My ignorance of something that would take over my life for the foreseeable future (and had invisibly done so from age 11).
Endometriosis, Explained in Layman’s Terms
Endometriosis is a condition in which tissue similar to the inner lining of the uterus (womb) grows outside the uterus in the pelvic area. The most common places are the ovaries, fallopian tubes, and bowels.
During a regular period, the lining of the uterus (the endometrium) thickens first and then sheds. Now, the tissue that has grown outside the uterus acts similar to the tissue lining the uterus — it thickens and tries to shed, too, but with nowhere to go, it gets trapped and causes inflammation in the pelvic area.
By trying to heal itself, the body will form scar tissue to respond to the inflammation. Large clumps of scar tissue can cause adhesions, which have serious complications such as causing organs to stick to each other or trap blood in the ovaries, causing ovarian cysts (Endometriomas or ‘chocolate cysts’ — what I had).
Endometriosis affects each woman uniquely, with varying degrees of scar tissue, adhesions and/or cysts in different parts of the pelvis. Scar tissue and adhesions can be found anywhere in the pelvis, whereas cysts usually form on the ovaries.
The trouble that I had when I was diagnosed with Endometriosis was finding reliable and relatable information.
In my view, apart from breast cancer, women’s health conditions have not been prioritised as much as men’s so there is a lack of funding, research, understanding, diagnoses, cures and attention. The list goes on.
The lack of funding means that currently there are no other ways to ‘fight’ the disease other than taking birth control by unnaturally putting the body into menopause OR getting pregnant.
My Gynaecologist, who specialises in Endometriosis, recommended birth control. When I decided against it, there was no way for him to help me further. I felt and still feel very unsupported in ‘fighting’ or living with this disease.
Endometriosis impacts my quality of life in many ways. However, through trial and error and self-experimentation, I have found ways to live a high-performing and healthy life. I will discuss this further in part 5.
How Many Women Have Endometriosis?
If the title of this article is not a dead giveaway:
According to The World Health Organisation, 10% of women of reproductive age (between puberty and menopause) have Endometriosis. A similar percentage of the adult population have Diabetes yet Endometriosis and Diabetes are not treated equally in terms of awareness, medical attention, diagnosis and cures.
I’m almost certain that it is more than 10% . Since I’ve been talking about my experience with other women, nearly 1 in 5 say, “Me too, I also have Endometriosis!” We speak about how Endometriosis has shown up for us individually and uniquely. We have similar but not the same experiences as it affects each women differently.
The Diagnosis
An Endometriosis diagnosis can take between 8 to 12 years, or in my case — decades! The only ways to detect it is:
- By transvaginal ultrasound, if the Endometriosis has evolved to form larger scar tissue or cysts. Smaller scar tissue can’t be picked up with transvaginal ultrasounds or
- By laparoscopic surgery to look inside the pelvis to see if there is any evidence of endometrial tissue, scarring and/or adhesions.
The invasiveness of the surgery to detect endometriosis is why it has gone undetected for so long. Endometriosis is usually found when it’s too late and painful adhesions or cysts have formed.
Lack of funding remains the key reason why there are no effective non-invasive ways of detecting Endometriosis.
With a 10cm Endometrioma on my left ovary, with nowhere to go and causing excruciating pain, I needed surgery. Thankfully, I had private healthcare because the earliest date public healthcare could schedule the surgery was in 6 months.
I couldn’t live with the pain for another day, let alone six months. This was when I learnt that:
Access to Medical Resources When You Need Them Is Critical
If you live in the UK, having private healthcare is important. Public healthcare is good for emergencies (heart attacks, strokes, accidents, burst appendix, etc.), but you have to wait months for anything that is not considered an emergency.
With private I was able to find a Gynaecologist who specialises in Endometriosis, laparoscopic surgeries and fertility implications — all three are intricately linked as I was soon to find out. Asurgery was scheduled soon after, and private healthcare covered it.
If you have Endometriosis, you will need regular gynaecological checkups, transvaginal ultrasounds and possibly surgery and/or medication — make sure that you have access to medical resources, when you need them.
Off to the Gynaecologist we go; at this point, the 10cm Endometrioma is causing so much pain that I can hardly walk.
For context, the average size of an ovary is ~4cm in diameter, so having a 10cm cyst on it means it is being engulfed by something almost three times its size.
He explains what Endometriosis is and the fact that the cause is unknown. He also mentioned that I need to get the cyst removed, but there could be infertility implications from the damage done to my ovary and my ovarian reserve.
