Curled up on the floor of my bedroom, I was frozen. I’d never felt this kind of pain before. Every little movement was excruciating, I couldn’t move. It was paralyzing. It was the first time I had felt that kind of pain and it wasn’t going to be the last.
Nearly four years ago I underwent a laparoscopy for my endometriosis. And it was around 9-10 years ago when I first felt that something wasn’t right with my body. Growing up, I always had heavy periods and menstrual pains. My mum told me that it was normal for women to have pelvic pain while they were on their period and so whenever that time of the month came around, I just sucked it up and endured the pain until it went away. As the years went by, the pain got more intense and would go on for longer; from the time coming up to my period, during my period, and up until about a week after my period was finished. I would start to feel the pain in other areas of my body, particularly my rectum area. Besides pelvic pain, going to the toilet (number two’s) and passing gas were also really painful- to the point where I would clench so as to not let out a fart because it hurt too much. The rectum pains got worse and this was what initially drove me to see a doctor.
Expressing my concerns to the GP, she did an internal pelvic examination. At the end of the appointment, she told me that I could have endometriosis but that it was unlikely because I was still young and that endometriosis usually affects women in their 30s. I was 18 at the time and she said that if it was endometriosis, there wasn’t much she could do because the recommended form of treatment she would give me was the birth control pill and I was already on it (I had been on the pill for less than a year). She didn’t refer me to a specialist and sent me on my way. Fast forward five years later, the pain only kept getting worse and I found myself in agony on my bedroom floor.
I was driven to A&E that night looking like the hunchback of Notre Dame trying to make my way into the emergency room, cowering in pain, unable to straighten up my body. After examinations and painkillers, the nurse told me she suspected the pain to be either appendicitis or endometriosis. I told her about the encounter with my GP 5 years earlier but I was quickly dismissed. A month later, I felt the same pain and was yet again driven to A&E. This time, a different nurse had referred me to get an ultrasound. “Finally!” I thought. An external and transvaginal ultrasound was done the following day and they showed that my ovaries were severely inflamed (9cm and 11cm). It was explained to me that on the two occasions where I felt immense pain, these were most likely due to the rupture of endometriotic cysts. An MRI scan showed that I had stage four endometriosis and my gynecologist helped fast-track my laparoscopy due to its urgency. She informed me that due to the severity of my endometriosis, there was a possibility that one or both of my ovaries could be extracted during surgery, as they won’t know how bad it would be until they went inside. Whether I was being pessimistic or logical, hearing this information made me jump to the decision to freeze my eggs, just in case things take a negative turn during surgery, and in which case I would feel utter regret for not thinking through these extra steps. Fortunately, the surgery went well and my pain was almost instantly alleviated following the laparoscopy.
My personal experience with endometriosis drove me to research about the disease, as I didn’t know nor had I heard anything about it until my diagnosis. I ended up assessing the effectiveness of yoga as pain management for endometriosis for my thesis. During my research, I met some brave women who participated in my research and shared their stories to me. Hearing their experiences, no two stories were the same. Endometriosis is such a subjective disease as the symptoms affect each individual differently and thus effectiveness of medication and other forms of treatment vary greatly across women.
The severity of endometriosis is categorized into stages one to four (stage one is least severe, stage four is most severe), classifying patients into stages depending on the spread and depth of endometriotic-tissue infiltration, development of cysts and extent of adhesions. However, the stage of endometriosis does not necessarily correspond with the level of pain that is experienced (e.g., a woman with stage four endometriosis may not feel any pain or is asymptomatic, while a woman with stage one endometriosis may feel a lot of pain). This then becomes extremely difficult for doctors to distinguish and diagnose endometriosis.
Women presenting with endometriosis symptoms tend to get directed to hormonal medication as frontline treatment though controversially, they only mask some of the symptoms and don’t actually treat the endometriosis itself. A laparoscopy is considered to be a useful and recommended form of treatment as it involves surgically removing endometriomas and adhesions. It can also be used as a method to confirm diagnosis, as adhesions and cysts don’t always show in ultrasounds and MRI scans, but a laparoscopy purely for diagnosis is usually advised against. This is problematic though because if laparoscopy is the recommended procedure to get a definitive diagnosis yet it is advised against to be performed purely for diagnosis, it seems that for a woman to be referred for a laparoscopy, previous examinations and scans would need to show presence of endometrial-like lesions in order to do the surgery. It is unsurprising then that there is diagnostic delay for endometriosis. On another note, a laparoscopy is also not a permanent cure for endometriosis, as 40-50% of women who undergo a laparoscopy experience recurring symptoms.
Despite affecting 10-15% of women worldwide, it’s surprising and very disappointing that there is still no definitive treatment for endometriosis. More research certainly needs to be done to find a permanent cure for endometriosis or at least effective pain management methods. At the end of my thesis, I found that yoga had improved various aspects in the participants’ lives such as their mental and emotional wellbeing, social support, and their self-image. However, the yoga did not show a significant impact in improving the participants’ overall pain, though sometimes they would experience temporary pain relief when practicing yoga.
Reflecting on my personal experience and hearing other women’s diagnostic and treatment journeys, I’ve found that it can be really helpful to reach out and find support from other women with endometriosis. It can feel isolating not having anyone in your circle to be able to relate to or feel like others judge and don’t believe your symptoms. Doing things such as surrounding ourselves with supportive people and practicing self-compassion can enhance mental wellbeing; which even though may not make the pain go away, it can make you feel that you are not alone, that you are heard and help you to see your body in a more positive light and exercise more self-acceptance.
- Pretty Jackson
