Cerebral Palsy and Early Menopause Article

Cerebral Palsy and Early Menopause – Sara Edwards-Cerebral Palsy Specialist

When it comes to women's health, many topics remain shrouded in silence, particularly for those living with disabilities.

As someone with cerebral palsy and epilepsy, my journey through gynaecological health has been fraught with challenges—specifically, dealing with painful and heavy periods. For years, I assumed that the debilitating stomach cramps I endured each month were simply a part of my life. I often found myself curled up on the sofa with a hot water bottle, battling discomfort with painkillers while questioning whether this was just my "normal."

After discussing my concerns with my general practitioner (GP), I was offered the contraceptive pill, but it soon became evident that my anti-epileptic medication would render it ineffective. I was left with no option but to manage my symptoms.

In my early twenties, I was encouraged to attend regular smear tests. The experience, however, was far from straightforward due to my cerebral palsy. Each appointment was painful, both physically and emotionally. In 2019, during one smear test, my GP identified an enlarged ovary, which prompted further investigation. The subsequent scans revealed two large cysts on my left ovary, shedding light on the source of my long-standing menstrual agony. It was after nearly three decades of painful periods that I received a diagnosis: Endometriosis.

What is Endometriosis?

Endometriosis is a condition where tissue similar to the lining of the uterus (endometrium) grows outside the uterus, affecting roughly 1 in 10 women of reproductive age. This condition can manifest in various places such as the bowel, bladder, or ovaries, leading to severe pelvic pain, bloating, and complications. The average time for a woman to receive a diagnosis can be up to a decade.

In my case, the endometriosis had spread to my ovaries and bladder, requiring further tests to rule out cancer. The prospect of cancer was frightening, yet amidst the panic, I felt a sense of validation. My symptoms were real, and there was finally an explanation for my suffering. I received this diagnosis in March 2020, as the world went into the Covid-19 lockdown.

During the first wave of the COVID-19 pandemic I received outstanding care. A nurse, dressed in full protective gear, came to my home to take a blood sample, and within a week, I learned that the cysts were benign.

In consulting with my specialist about treatment options, I faced a pivotal decision: should I consider a full hysterectomy? While I wasn't contemplating having children at the age of 44, the notion of relinquishing that choice was daunting. The cysts were benign this time, but that could change in the future. I decided to go ahead with the operation. The consultant made it clear that, post-operation, I would be in full menopause—a prospect that left me feeling both apprehensive and somewhat prepared, given that I had already been experiencing peri-menopausal symptoms.

The operation was planned for July 2021; an eighteen month wait. On the day of my operation, Covid restrictions were still in place. Being admitted to hospital during that time was a surreal experience. I’d had to self-isolate for three weeks and had to attend hospital alone.

I woke from the operation feeling groggy and in significant pain, which was to be expected. But alongside that, I felt an overwhelming internal heat, something I hadn’t anticipated. While I had dealt with some menopausal hot flashes before, this intensity was new and not going anywhere. The following morning, my consultant assured me that the two large cysts and the endometriosis had been successfully removed.

The hysterectomy marked a new chapter in my life. I needed to navigate not only my altered physical state but also my emotional well-being, which proved to be a challenge. I hadn’t fully understood how menopause would affect my cerebral palsy as well. I had already been diagnosed with arthritis in my left hand and knee, and the increased frequency of arthritic flare-ups along with heightened fatigue made everything feel more daunting. My history of memory issues related to cerebral palsy and epilepsy added a layer of complexity. Some days, the menopausal symptoms brought on high anxiety and severe brain fog. I found it frustrating when names slipped my mind or when simple tasks seemed to take forever. It was exhausting. Anger was an emotion that featured most days, but for different reasons. Sometimes it flared because the milk had been left out. Other times I was angry with myself.

To manage the symptoms, I was prescribed hormone replacement therapy, which has alleviated some of the menopausal struggles, although there are still tough days.

I've learned that menopause can be managed in various ways. Gentle exercise and a balanced diet do wonders for alleviating both menopausal symptoms and challenges related to cerebral palsy. The endorphins released through exercise truly benefit my mental health.

As a counsellor, I've discovered various tools and techniques that can significantly enhance mental well-being. Two practices that stand out are mindfulness and journaling. Mindfulness allows me to notice and acknowledge thoughts that come into my mind without judgment, creating a calm space for reflection. Journaling complements mindfulness by providing a physical way to express and process these thoughts and feelings. Whether it's reflecting on daily experiences or exploring the complexities of dealing with physical and hormonal changes, journaling can be a powerful tool for fostering mental health and resilience.

Supportive disabled communities have given me a space to connect with like-minded individuals. On days when fatigue sets in, I don’t feel guilty about indulging in some television and enjoying chocolate—it’s a little pleasure that makes a difference.

Reflecting on this turbulent journey, I've realized that navigating menopause alongside managing cerebral palsy and epilepsy presents a learning curve all of its own. It’s a complex experience, one that underscores the importance of advocating for one's health and breaking the silence surrounding gynaecological issues within the disabled community. My hope is that sharing my experiences can encourage others to seek help, engage in conversations about their health, and feel empowered to make informed choices regarding their bodies.