A Bloody Nightmare – living with endometriosis

Endometriosis is a condition that can cause havoc in women’s lives not only due to its agonising symptoms, but also its often-tricky diagnosis and limited treatment options.

In the interest of Endometriosis awareness month, I wanted to shed light on this often misunderstood yet serious condition in a series of articles, starting with this overview.

So, what is endometriosis?

To put it simply, endometriosis is a condition where tissue similar to the lining of the womb grows outside of the uterus in places such as the ovaries, bowel, and fallopian tubes.

The condition can become very painful as the endometrial tissue grows and breaks down, becoming trapped in your pelvis, leading to severe swelling and irritation of the lower abdomen.

Other symptoms of endometriosis include painful periods, fertility problems, and abdominal adhesions whereby endometrial tissue binds your pelvic organs together.

But there’s nothing simple about it.

The condition can emerge in various ways, making it difficult to identify. It also has indefinite aetiology – meaning its cause is unknown. This makes prevention and management of the condition difficult, since we don’t fully understand why it occurs in the first place.

A bloody nightmare

On speaking with London-based freelance broadcast journalist Sophia Franklin on her experience with endometriosis, I discovered that the biggest challenge is often diagnosis.

“My journey was a nightmare,” Sophia told Anna Vitality. “It was debilitating… but more than that, it was slowly ruining my life; I developed anxiety, depression, and would often result to binge eating in an attempt to feel better, but that’d only make things worse and cause further inflammation.”

Previously a presenter for BBC Radio Gloucestershire and now freelance newsreader for talkSPORT, talkRADIO and Virgin, Sophia’s life has always been very busy and sociable.

For years, Sophia endured severe pain when ovulating, heavy bleeding, and felt continuously exhausted.

“’It’s just part of being a girl’ I was frequently told. It wasn’t until I revealed to a group of friends – and saw their reactions – that I’d wear both a tampon and a pad and would still frequently bleed through, that I realised something was wrong.”

In 2017, newly graduated from the University of South Wales, Sophia was referred to a general practitioner who specialised in women’s health. Six months of blood tests and scans went by, but to no avail.

“I then had a coil fitted which took a good three months to settle, but it finally kicked in and I had no periods which meant I could get on with my life… But then the cramps started again. No periods, but all the pain that would usually come with them.”

At this point, Sophia was placed on a year-long waiting list for a laparoscopy to determine what she was really dealing with.

A laparoscopy is a type of surgical procedure that allows a surgeon to access and examine the inside of the abdomen and pelvis without having to make large incisions in the skin.

“This brings us to March 2020, our first national lockdown. I had to go into isolation for two weeks [prior to my hospital appointment,] which was lonely and scary but I was just relieved that I was being taken seriously, at last.”

“I finally had the operation and had hoped for some answers, but the surgeon told me there was nothing there. It made no sense that they hadn’t found anything.”

At this point, Sophia turned to online forums and social media to see if there was anyone out there going through the same thing. To her relief, the comments came swarming in, some sharing similar if not worse experiences.  

“Some women said they had only been diagnosed with endometriosis after their 4th, 5th, 6th laparoscopy!” she said, disbelievingly.

Several years (and many hospital appointments/examinations) after the severe bleeding and pain first emerged, a gynaecologist revealed to Sophia that her appendix was fused with the wall of her stomach lining, confirming it was linked with or a by-product of endometriosis.

“While it’s clearly not something that’s easy to diagnose, I feel that GP’s need to appreciate that women know when something’s right and when something’s wrong,” she stressed.

“Health practitioners need to have conversations about the topic and take people seriously – acknowledge that their pain could be a real problem. Women want to feel that their experiences are valid.”

More than a biological condition

The condition was not only physically strenuous for Sophia, but emotionally too, having seriously affected her hormones as well as her social life and long-term relationship.

“Intercourse was painful, during and afterwards, I remember keeling over in pain, but the stress of everything can have huge implications on the relationship and other aspects of life too,” she reflected.

“It’s not a black and white thing. Women need to be heard. Brothers, dads, boyfriends, husbands, and best friends all need to be more open in talking about women’s health issues. People need to stop being so afraid of feeling awkward or weird when talking about these things, and think about the good it can do by talking about it and spreading awareness.”

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