Endometriosis – “It felt like an animal scraping my insides.”

by | Mar 4, 2021 | Causes, Women

Endometriosis awareness month is taking place this March in order to shine a light on this devastating disease that affects 1 in 10 women.

It was December 2016 when I discovered I had endometriosis, a gynaecological problem that causes tissue normally found in the womb to grow outside the uterus which can result in chronic pain.

Endometriosis can grow anywhere within the body but is most commonly found in abdominal areas. The disease is a very individual illness so not every person will experience the same symptoms, but can affect your overall quality of life.

For me, it began when I started getting constant pelvic pain around my period. It felt like an animal scraping my insides. It left me feeling depressed. After wondering if I had IBS and trying loads of different diets, I went to see a doctor about the pain.

It was during university at the age of 19 the doctor told me he believed I had endometriosis. Ranging from heavy periods, bowel problems and painful intercourse endometriosis can affect the reproductive system, relationships and attendance at work. I soon began to worry that I wouldn’t be able to have children when the doctor said endometriosis could mean I could be infertile.

The doctor recommended I went on the pill to help with the pain – I was on the pill for five years. But it was after coming off the pill I was left feeling incredibly anxious when my periods didn’t return. The emotional fear of not getting a period after the pill was nerve-racking. It made me worry I couldn’t have children.

Although the pill had masked the pain, the issue was still there. The pain crept back and got a lot worse.

Sadly, the disease has no cure and on average diagnosis can take around seven and a half years. The only definitive way to diagnose endometriosis is by laparoscopy surgery. After discovering the average length of diagnosis, I and my previous partner wanted to find the best doctor in this field. This meant going through private health care for the initial consultation. We wanted to help speed up the process.

Treatments can include hormones or surgery to remove the tissue. But once removed, endometriosis will most likely grow back.

At the age of 25, I had surgery to remove my endometriosis. I was so nervous; I had never had an operation before. But despite being frightened I wanted confirmation. If I didn’t have endometriosis, I was anxious as to what the next stage would be. I just wanted an answer.

After surgery, I was diagnosed with endometriosis. I felt a huge relief of stress off my shoulders. I was so happy to finally know what I was working with. The unknown is definitely sometimes worse than the known. But it was nerve-racking knowing that I may have to go through the same process time and again because there is no cure. They can get rid of endometriosis tissue but that doesn’t mean it won’t grow back.

Endometriosis has been a challenge. From taking time off work due to pain to awful side effects. For me, I suffer from bloating. On one occasion during one of my drama lessons, a child asked if I was pregnant. I felt mortified. It hurt the fact the child had drawn attention to me looking pregnant, something I wanted so badly but feared I would never be able to be.

Nearly four years after being diagnosed with endometriosis, I was shocked and delighted to discover I was pregnant. My biggest worry after discovering I had the disease was not being able to be a mum. Although unbearable, I can live with the pain now that I have my son.

Living with endometriosis can be extremely isolating and is still a taboo subject within society. The lack of awareness has impacted the understanding and diagnosis of the disease. I was 25 when I was diagnosed but first started getting pain when I was 14. Despite going private it still took around an average of seven years to get a full diagnosis, from when I first went to the doctor, which was too long emotionally and physically.

The number of times I have been fobbed off by people or health care professionals made me feel exhausted. I wish had discovered different alternatives to the pill. At the time I felt there wasn’t a lot of information about endometriosis, even now I feel there isn’t a wide understanding of the issue.

Years on, the pain still creeps back, like a burning pain. I sometimes feel left with no energy to do stuff. Endometriosis is a disease not everyone knows much about or even understands. I have fought a long hard battle to get to where I am today, physically and mentally, but despite the struggle, I am thankful for being able to finally be able to call myself a mum.

Main image by Deon Black


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