Ipswich woman's 10 year endometriosis awareness battle

I’ll never forget saying these words to my mum, or the place of complete brokenness that those words came from.

I meant them, too. 

Though it was never about wanting to die; it was about not wanting to live inside that miserable version of my life anymore, and not seeing any other way out of it. 

Fresh out of yet another emergency hospital admission, and deep in the trenches of an excruciating, consuming, insidious disease, I couldn’t see the light at all. 

I am an endometriosis sufferer, and March is Endometriosis Awareness Month. 

Amy Peckham-Driver has spent over a decade fighting for a diagnosis. She has written about her story as part of Endometriosis Awareness Month. (Image: Amy Peckham-Driver)

I’d be surprised if you hadn’t at least heard of the condition, given that over 200 million people worldwide suffer from it. That equates to roughly 1 in 10 people with a uterus, with cases being recorded in children as young as seven years old. 

I’ve suffered for as long as I can remember; missing school from a young age, spending days and nights on the bathroom floor vomiting in pain, knowing something was seriously wrong and getting nowhere with the doctors despite repeated calls for help.

By the time I’d reached my mid-twenties, I felt like a shell of my former self. 

I was in pain 24 hours a day with no relief even from the strongest painkillers available. I couldn’t sleep, couldn’t eat, I was inflamed from the inside out, I was struggling to leave the house or even stand up for extended periods of time on the worst days. 

I was in and out of hospital, I was struggling to keep up at work or make any progress in my career, I’d become completely withdrawn from my friendships and social life.

Amy enjoyed a busy, active and adventurous lifestyle until endometriosis forced her to put it all on hold (Image: Amy Peckham-Driver)

I’d gone from living on the other side of the world by myself to relying on my mum for basic things I was no longer capable of doing.

I felt like a burden to everyone, and I felt like life was passing me by while I was powerless to stop it.

Endometriosis has robbed me of so many things, but by sharing my story, I’m hoping that even just one person could come away with the information they need to advocate for themselves or support someone else.

People often refer to endometriosis as an ‘invisible’ disease, but the more unwell I became, the less I looked or felt like myself. (Image: Amy Peckham-Driver)

So - what exactly is endometriosis?

One of the most damaging misconceptions about endometriosis is that it’s a gynaecological disease.

Endometriosis is a chronic, inflammatory, whole-body disease where tissue similar to the lining of the uterus grows on other organs, forming scar tissue, cysts and adhesions which invade structures in the body and, in some cases, behaves in a glue-like fashion; binding neighbouring organs together and disrupting their ability to function. 

Endometriosis is NOT the same as the endometrium (aka the lining of the womb), though this is a common and harmful misconception which frequently leads to improper care.

Despite regularly being mislabelled as a ‘period’ disease, endometriosis has been found just about everywhere inside the body, including the ovaries, fallopian tubes, bowel, rectum, kidneys, liver, nerves, spine, abdominal wall, skin, ureters, appendix, bladder, lungs, diaphragm, heart, eyes and even the brain. 

What are the symptoms?

Since endometriosis affects multiple organs and multiple systems within the body, the list of symptoms is truly endless. They can range from mild to life-altering, and the severity can vary depending on the location and depth of the disease. Needless to say, no two cases of endometriosis are the same.

The symptoms are also often missed, dismissed or misdiagnosed, because many doctors fail to recognise the signs beyond those which relate solely to the reproductive system.
For example, endometriosis of the bowel is often misdiagnosed as IBS, and endometriosis of the bladder is often misdiagnosed as recurrent urinary tract infections. 

The danger of this is that it can allow the disease to continue growing undetected for years, causing lasting damage and serious complications in the future.

Endometriosis symptoms include (but definitely aren’t limited to):

Abdominal, pelvic and back pain

Severe period pain 

Bloating (known as ‘endo belly’)

Chest pain

Pain passing bowel movements or urine 

Blood in stool or urine 

Heavy, irregular or prolonged vaginal bleeding 

Pain during or after sex

Migraines and headaches 

Fatigue 

Dizziness

Insomnia and night sweats 

Diarrhoea and constipation 

Frequent urination/urinary urgency 

Shortness of breath 

Nausea and vomiting 

Coughing up blood 

Difficulty getting pregnant 

An example of 'endo-belly' which is caused by extreme inflammation inside the abdomen. (Image: Amy Peckham-Driver)

Not just a bad period

One of the biggest issues we face, and one of the reasons we even need an awareness month at all, is the severe lack of understanding surrounding the condition - in the media, in society and in the healthcare system alike. 

A disease this common should not be so widely misunderstood. 

A disease that destroys millions of lives should not be dismissed as a ‘bad period’.

A disease this dangerous should not see clinicians sending women away with contraception and ineffective hormonal therapies in lieu of a proper diagnosis.

In the UK, it takes an average of eight years to be diagnosed with endometriosis.

Eight years.

Can you name any other life-limiting condition that takes that long to diagnose?

Can you name a comparable condition within male healthcare which causes them debilitating pain, damages their fertility, causes irreversible damage to their organs, gets in the way of their careers, social lives and relationships, and takes almost a decade to be diagnosed? I’ll wait.

Waiting so long for a diagnosis has cost me so much. So much time, so much money, so many opportunities I’ll never get back. One of my good friends, who also has endometriosis, has referred to the condition as a ‘life-stealer’, which couldn’t be more accurate. 

I’d suffered with debilitating periods since early high school and had been back and forth to the GP throughout my teens. Unfortunately, women are often dismissed with hormonal contraception at the first mention of period pain, and my case was no different. 

The myths surrounding contraception

Hormonal contraceptives may sometimes offer symptom relief, but they do not slow the growth of endometriosis. Women are constantly missold contraception, hormonal therapies and hysterectomies as a ‘cure’ to the condition, but endometriosis produces its own oestrogen and essentially fuels and feeds itself, meaning it doesn’t make a difference whether you take hormonal therapies or not - it’s going to grow anyway.

I took the contraceptive pill for 10 years and my disease still progressed to stage four, which is the most advanced stage it can get to. It eventually reached the point that I was in uncontrollable pain every single day, with frequent visits to the GP and A&E. It was beyond anything I could manage on my own, and I’d known in my heart for a long time that I had endometriosis, I just couldn’t seem to get any healthcare professional to take me seriously. 

How is it diagnosed and treated?

What type of treatment is there for endometriosis? Amy explains the Laparoscopic removal procedure. (Image: Amy Peckham-Driver)

The only way to definitively diagnose endometriosis is via a laparoscopy, aka keyhole surgery, which is where a small camera is passed through the abdomen to look for endometriosis lesions inside the body.

While endometriosis has no cure, the closest thing we have to an effective treatment is excision surgery, which is performed laparoscopically and involves having an endometriosis specialist cut away, or ‘excise’, all visible lesions of endometriosis. Sadly, not enough of these specialists exist, making it incredibly difficult to access the expertise so many of us need.

After battling to be referred for a laparoscopy, I was eventually placed on a long waiting list - something we’re all too familiar with these days. Gynaecology waiting lists in particular have increased dramatically in recent years, with thousands of women in East Anglia waiting two years or more for treatment.

While on the waiting list, my condition deteriorated dramatically. The pain was so severe that I was deliberately taking scalding hot baths and using hot water bottles on my skin around the clock just to distract from the internal pain. I was sleeping with a kettle in my room to top the hot water bottles up throughout the night, and always kept a towel on hand in preparation for any pain-related vomiting. 

Amy following her excision surgery. (Image: Amy Peckham Driver)

‘She must have been in agony’

After a ruptured endometrioma (a cyst on the ovary) landed me in hospital once again, I’d officially reached my breaking point.

With my health taking a nosedive and no other options available, I was forced to start looking at private treatment. 

I knew I’d be getting myself into tremendous debt, but I was desperate, and I was in the darkest place I’d ever been in. 

I’m privileged to have an incredible family and support network who encouraged me to do whatever it took to get the care I needed, and after borrowing the funds to pursue private treatment, I finally had my excision surgery just a couple of days after my 27th birthday. 

The surgeon said it was one of the worst cases he’d seen in his almost 30-year career. 

“She must have been in agony,” were his words to my mum after completing the operation.

Endometriosis was found on both ovaries, on my pelvic side walls, on my lateral side walls, on my uterosacral ligaments, on my cervix, on my pelvic nerves and on my bowel. I lost a litre of blood during the procedure and was on the operating table for hours longer than I should’ve been. 

Even now, I still feel like I’m trying to get my life back on track after having endometriosis completely derail it, and I know the journey is far from over. My endometriosis is so aggressive that it was back with a vengeance within months of my surgery.

After spending over £20,000 on endometriosis-related treatments in the last two years, I’m now back on an NHS waiting list, with no choice but to wait this time. 

This disease is relentless, and it affects every single area of a person’s life - their career, finances, social life, relationships, independence, fertility and mental health. 

It takes away the sense of control a person has over their life; living in a constant state of fear over the next flare up, being scared to make plans, to go out, to eat the wrong thing or to be too far from the nearest hospital. It’s like being at the mercy of a completely unpredictable monster every single day.

Anyone who refers to this condition as a ‘bad period’ has a lot of learning to do. 

It goes without saying that drastic change is needed in our approach to women’s healthcare.

It’s simply unacceptable that women’s needs are placed so low on the priority list.

It’s unacceptable that women are sent away from their doctors with contraceptives and painkillers over and over again without any attempts to understand where the pain is coming from.

My experience is not unique; there are millions of others with the same story to tell, and sadly there’ll be many more in future, too.

My message to anybody suffering would be that you know your body better than anyone else and you deserve to be listened to.

Don’t let anybody tell you that debilitating pain is ‘normal’ just because you have a uterus, and don’t let anybody treat you like an unreliable witness to the body that you’ve lived in your entire life.

Keep pushing for the care that you deserve, and hold on to the hope that things will eventually change for us one day.