Endometriosis is a condition that many of us may have heard of but might not fully understand. It affects one in ten women in the UK, yet it remains one of the most misunderstood and under-discussed health issues. Living with endometriosis can be challenging, but understanding the condition and knowing that we’re not alone is the first step in managing it.
What is Endometriosis?
Endometriosis is a chronic condition where tissue similar to the lining of our womb (endometrium) starts to grow outside the womb. This tissue can be found in various parts of our body, including the ovaries, fallopian tubes, bladder, bowels, and even in more distant areas like the lungs. Like the tissue inside our womb, this misplaced tissue also responds to our monthly menstrual cycle, thickening, breaking down, and bleeding. However, unlike the menstrual blood that exits our body, this blood has no way to escape, leading to inflammation, pain, and the formation of scar tissue.
What Causes Endometriosis?
The exact cause of endometriosis is still not fully understood, but several factors might contribute to its development. Genetics play a role, so if our mother or sister has endometriosis, we are more likely to develop it as well. There are also theories suggesting that retrograde menstruation, where menstrual blood flows backward through the fallopian tubes into the pelvic cavity, could be a cause. However, this doesn’t explain why some of us develop endometriosis and others don’t.
Other possible causes include immune system dysfunction, hormonal imbalances, and environmental factors, but more research is needed to fully understand why endometriosis occurs.
Recognising the Symptoms
Endometriosis can cause a wide range of symptoms, and these can vary significantly from person to person. The most common symptom is pelvic pain, which is often associated with our periods. However, this pain can also occur at other times, such as during ovulation, sexual intercourse, or bowel movements.
Some of us may experience heavy periods, pain in our lower back and abdomen, fatigue, and difficulty becoming pregnant. Others may have symptoms that are less obvious, like bloating, nausea, or changes in bowel and bladder habits. In some cases, endometriosis can be present without any noticeable symptoms, making it even more challenging to diagnose.
Sarah* is living with Stage 1 endometriosis and shared: “For years, I was told that my painful periods were just a normal part of being a woman. It wasn’t until I was trying to conceive that I found out I had endometriosis. Even though my symptoms were mild, the impact on my fertility was devastating.”
Stages of Endometriosis
Endometriosis is classified into four stages, from minimal (Stage 1) to severe (Stage 4). The staging is based on factors such as the location, depth, and extent of the endometrial tissue growth, as well as the presence and severity of scar tissue.
- Stage 1 (Minimal): Small implants and few superficial lesions.
- Stage 2 (Mild): More and slightly deeper implants.
- Stage 3 (Moderate): Numerous deep implants, small cysts on one or both ovaries, and the presence of scar tissue.
- Stage 4 (Severe): Many deep implants, large cysts on the ovaries, and significant scar tissue that can bind organs together.
It’s important to note that the stage of endometriosis doesn’t always correlate with the severity of our symptoms. Some of us with Stage 1 might experience debilitating pain, while others with Stage 4 might have very few symptoms.
Diagnosing Endometriosis
Diagnosing endometriosis can be a lengthy and frustrating process. On average, it takes between eight and 11 years from the onset of symptoms to receive a diagnosis in the UK. This delay is often due to the fact that our symptoms can be mistaken for other conditions, such as irritable bowel syndrome (IBS) or pelvic inflammatory disease (PID).
If you suspect you might have endometriosis, it’s crucial to speak with our GP, who may refer us to a gynaecologist. While imaging tests like ultrasounds or MRIs can sometimes detect endometriosis, the gold standard for diagnosis is a laparoscopy. This is a minimally invasive surgical procedure where a small camera is inserted into our abdomen to look for signs of endometriosis.
Treatment Options
There is currently no cure for endometriosis, but there are several treatment options available to help manage our symptoms. The choice of treatment depends on the severity of our symptoms, our age, and whether we wish to have children in the future.
- Pain Management: Over-the-counter pain relief, such as ibuprofen or paracetamol, can be effective for mild symptoms. For more severe pain, prescription medications, including non-steroidal anti-inflammatory drugs (NSAIDs) and stronger painkillers, may be necessary.
- Hormonal Therapy: Hormonal treatments aim to reduce or eliminate menstruation, which can help to alleviate the pain and slow the growth of endometrial tissue. Options include the combined oral contraceptive pill, progestogens, and gonadotropin-releasing hormone (GnRH) agonists.
- Surgery: In cases where other treatments haven’t been effective, surgery might be recommended. The goal of surgery is to remove as much endometriosis as possible while preserving fertility. This can range from minimally invasive laparoscopic surgery to more extensive procedures.
- Fertility Treatment: For those of us struggling with infertility due to endometriosis, fertility treatments such as in vitro fertilisation (IVF) might be an option.
Kate was diagnosed with Stage 4 endo in 2021. She shared: “I’ve had multiple surgeries, tried different medications, and still, the pain is relentless. Some days, I can barely get out of bed. It’s been a long journey, and it feels neverending.”
Living with Endometriosis
Living with endometriosis is about more than just managing physical symptoms. The emotional and psychological impact of the condition can be profound, affecting our mental health, relationships, and quality of life. It’s essential to have a support network, whether it’s family, friends, or a support group, where we can share our experiences and feelings.
Self-care is also an important aspect of living with endometriosis. This might include gentle exercise, relaxation techniques like yoga or meditation, and prioritising rest when we need it. Understanding our body’s limits and not pushing ourselves too hard is crucial.
It’s also helpful to keep a symptom diary, recording our pain levels, periods, and any other symptoms. This can be valuable information to share with our healthcare provider to help tailor our treatment plan.
Finding support
For those of us seeking further information and support, the Endometriosis Foundation is an invaluable resource. The foundation provides up-to-date information on the latest research, treatment options, and support services available in the UK. They also offer a community where we can connect with others who understand what we’re going through.
You are never alone
Endometriosis is a complex and often misunderstood condition that can have a significant impact on our lives. By raising awareness, advocating for ourselves, and seeking the right support, we can better manage our symptoms and improve our quality of life. Remember, we’re not alone in this journey, and there is help available.
If you’re experiencing symptoms of endometriosis or have already been diagnosed, reach out to your healthcare provider or the Endometriosis Foundation to explore your options and find the support you need.