Endometriosis

Endometriosis is more than just a medical condition,  it’s a daily battle with invisible pain.

For many, it’s a relentless cycle of agony that extends far beyond menstruation. Painful periods become a constant companion, haunting every moment before, during, and after.

The agony intensifies, infiltrating even the most intimate moments, turning simple acts like sexual intercourse, bowel movements, and urination into excruciating ordeals.

But the impact doesn’t stop there. Endometriosis casts a long shadow over every aspect of life. Chronic pelvic pain becomes a constant companion, accompanied by abdominal bloating, nausea, and crippling fatigue. The emotional toll is equally profound, with many facing bouts of depression, anxiety, and overwhelming feelings of isolation.

Worst of all, endometriosis can shatter dreams of motherhood, with infertility lurking as a heartbreaking possibility.

Yet, despite the silent suffering, there’s hope. By shedding light on the realities of endometriosis, we can pave the way for better understanding, support, and treatment options.

Together, let’s break the silence, raise awareness, and offer compassion and solidarity to those living with this debilitating condition

My endometriosis symptoms

1 – Never knowing when my period would be

Experiencing irregular and extremely heavy periods was a harrowing challenge in my life. There were times when my periods came every 18 days, 21 days, or even every other week, accompanied by significant bleeding that was difficult to manage.

Standing in the bathtub, feeling blood pouring down my legs for an hour or more, became unfortunately familiar.

One memorable incident on my best friend’s birthday, I made a rare outing to a pub with my husband and friends despite being on my period. Within 15 minutes of being there, I felt a sudden rush of blood. Knowing I had to leave immediately to avoid embarrassment, I hurried out, leaving a trail of blood behind me.

It was a humiliating experience, but my husband, always supportive, acted swiftly. He covered the car seat with a plastic mat and towels and adjusted the chair to make me more comfortable as I dealt with pain.

Returning to explain the situation to the pub’s landlady, my husband encountered unexpected empathy. She understood the discomfort and offered kindness, assuring him they would clean up to avoid any misunderstandings.

Such incidents were mortifying and left me feeling ashamed. The stigma associated with this disease can lead to significant mental and emotional challenges, but it’s crucial to remain aware and not let shame or fear dictate your actions or self-worth. This journey has taught me resilience and the importance of compassion and understanding of others.

2 – Being woken up during the night

Dealing with heavy periods was a nightly battle that disrupted my sleep and daily life. Many nights, I would awaken to find myself in a damp, wet patch, resembling a scene from “The Godfather” when I lifted the sheets. The routine of taking everything to the bathroom and rinsing it in cold water became all too familiar, it was the best way to remove the blood stains.

At times, I found myself standing in the bathtub, washing sheets with blood running down my legs like an open tap.

My standard protection for sleeping or going to work involved using three sanitary towels, two in the front and one in the back, along with an extra-large Tampax.

For sleeping, I doubled up with two bath towels underneath me, hoping in vain to sleep through the night without interruptions. Unfortunately, I was often jolted awake, needing to change the sheets once more.

This routine was exhausting and challenging, both physically and emotionally. 

3 – Having blood clots

Living with heavy periods that included large blood clots was not only physically challenging but also occasionally embarrassing.

There were moments when I hadn’t noticed a clot had fallen out, which could be mortifying. Fortunately, my best friend once found one and cleverly made light of the situation by saying,

“You left a friend in the bathroom.”

Her humour helped me find some levity in those uncomfortable moments.

Passing these clots was incredibly painful. My mom used to liken it to giving birth, waves of pain followed by relief when the clot passed, only for the cycle of pain to begin again.

Endometriosis tends to run in families, and my mom, who also suffered from it, had two children, myself being the youngest and the largest at 10.1 pounds. I was born at home, and after my birth, the midwife complimented my mom on her bravery for not screaming during delivery.

My mom, with her characteristic wit, replied,

“It’s the same as having a period.”

The midwife’s stunned reaction highlighted how unconventional my mom’s response was at that moment.

4 – Insane pain

The pain associated with endometriosis is one of its most debilitating aspects, affecting not just the pelvic area but also radiating to the back, legs, and various parts of the body.

Each month, I would experience an unusual symptom, a painful lower ear. Yes, an ear issue related to my menstrual cycle. Before my period, a lump would form just below my earlobe, growing to the size of a marble. Oddly enough, I found some distraction and relief by wiggling it, perhaps a strange coping mechanism to manage the pain.

The pelvic pain was relentless, starting well before my period and persisting for days afterward. It dominated much of my monthly cycle, leaving me in pain for about three weeks out of every month.

The back pain was equally severe, often causing me to faint during my period. These episodes were embarrassing, especially in public places like pubs, where people often misinterpreted my condition as intoxication.

I sought relief through various prescriptions from doctors, but none provided significant help. In the end, the most effective solution for me was a combination of two ibuprofen and two paracetamol, taken every three hours just to manage the pain enough to continue working. As a hairdresser, I had no choice but to keep working, despite the toll it took on my health and well-being.

The constant reliance on medications became exhausting and frustrating. I longed for a more sustainable solution that would alleviate the pain without the need for such frequent and heavy medication use. Needless to say why I do most things naturally these days. 

5 – Painful sex

Sexual intimacy can indeed become a daunting topic for those living with endometriosis. The pain and discomfort associated with the condition can lead to feelings of shame and inadequacy.

It is difficult to communicate with your partner when you need to stop, adjust, or withdraw due to pain, and this can create a sense of guilt or fear of disappointing them.

The unpredictable nature of when pain might strike during sex adds to the challenge. There’s no straightforward solution, leaving many individuals with endometriosis to rely on the understanding and support of their partners. It becomes a test of the relationship’s resilience and the partner’s empathy and patience.

It’s crucial for both partners to openly communicate about these challenges, fostering an environment where feelings and needs can be expressed without judgment. This mutual understanding can help navigate the complexities of intimacy while managing the effects of endometriosis on sexual health.

6 – Infertility

Endometriosis can indeed have devastating effects on fertility, making it difficult to conceive and carry a pregnancy to full term.

For me, discovering that my tilted womb, caused by scar tissue from endometriosis, was the reason behind my recurrent miscarriages was heart-wrenching. Each loss, including the most recent one with my beloved fiancé, deeply affected me.

Despite these challenges, I eventually found love again with a man I deeply cared for. Our relationship blossomed over shared interests, including our love for our dog and dreams of parenthood.

After a wonderful holiday in Bali, I discovered I was pregnant. Although scared to share the news at first due to the newness of our relationship, my partner was overjoyed, he had always wanted to be a father.

We took steps to prepare for the arrival of our child, such as buying a more suitable car for our rough road.

However, despite our careful planning and excitement, the joy was short-lived. I experienced excruciating pain one day, and despite my partner’s distress and insistence on taking me to the hospital, I tried to endure in the hopes of preserving the pregnancy. Eventually, the pain became unbearable, and I sought medical help.

Dealing with Infertility due to endometriosis is a heartbreaking reality for many women who have dreamed of becoming mothers.

7 – The constant feeling drained

Living with endometriosis often brings about a persistent feeling of low energy and a range of distressing symptoms.

Fatigue, along with concurrent issues like diarrhoea, constipation, bloating, and nausea, can all occur simultaneously, adding to the burden of managing the condition.

One of the most confounding aspects of endometriosis is that the severity of pain experienced does not correlate with the extent of the disease.

Even a small amount of endometrial tissue outside the uterus can lead to excruciating pain, while larger amounts may cause relatively less discomfort.

It’s important to recognise that pain and suffering are subjective and can’t be quantified by external measures.

What one person perceives as severe pain may not align with another’s experience, and comparing levels of pain or suffering doesn’t diminish the validity of anyone’s struggle.

Each person’s journey with endometriosis is valid and deserves understanding, support, and appropriate medical care.

Doctors

Endometriosis disrupts the normal menstrual process by causing endometrial-like tissue to grow outside the uterus. This tissue behaves similarly to the lining inside the uterus. It thickens, breaks down, and bleeds during each menstrual cycle. However, unlike the uterine lining that exits the body as menstrual blood, the misplaced tissue has no way to escape.

As a result, during each period, this tissue bleeds internally within the pelvic cavity or other affected areas. This internal bleeding triggers inflammation, irritation, and over time, the formation of scar tissue (adhesions). These adhesions can bind organs together or to the pelvic sidewall, leading to debilitating pain, infertility, and a myriad of other symptoms associated with endometriosis.

Managing endometriosis is challenging due to its unpredictable nature and the variability in individual responses to treatments.

Doctors typically focus on symptom management and reducing inflammation since a definitive cure for the condition remains elusive.

Each person’s experience with endometriosis is unique, necessitating tailored care and support to mitigate its impact on quality of life.

Reflecting on my journey with endometriosis, a doctor once explained it to me in a way that struck a chord. He likened it to menstrual blood that should stay within the uterus but instead lands anywhere else in the body, where it also bleeds during my period.

In jest, I asked if I was bleeding internally all over, to which he chuckled and said

“Well not really, but yes.”