Women’s health is incredibly understudied and underfunded. What is known is rarely taught to women, resulting in us doing extensive research and often relying on self diagnosis. This is why it came as such a shock to me when I got diagnosed with endometriosis, having had no prior symptoms. Asymptomatic endometriosis is when endometriosis presents with little or no symptoms, however an individual with this variation can develop a sudden onset of endometriosis complications.
Just before the start of the last academic year I was planning a well-deserved break to Lisbon after having worked all summer, before final year began . I suddenly started getting bad pains in my sides that gradually got worse, and I developed a fever. I went to the doctor who, after giving me a very quick glance over, determined that I had a kidney infection, gave me antibiotics and told me that I would get better in a few days. But I got worse. I went to A & E a few days later, the pain had gotten severe, and I could barely stand, they took me in immediately. I was told that I must have developed a severe kidney infection but when they scanned my kidneys, they looked healthy.
Despite the large doses of IV antibiotics my condition was not improving. I got further scans and it was discovered that I had an abscess on my ovary the size of a tennis ball which was leaking and creating this severe infection. The abscess was drained and overall, I spent ten days in hospital battling the infection. I had lost six pounds in those ten days from not being able to keep any food down due to the amount of antibiotics I was on. I was told that I had developed pelvic inflammatory disease from getting the contraceptive coil. I got home about a week before college in a very weak state.
I started back at college, but things did not seem okay, I felt very weak and there were many days I did not have the strength to get out of bed. I was still experiencing pain, but I was not sure if this was normal and something that would go away with time. There was no follow up and I was told nothing of what to expect. I went to the doctor asking if this was a normal experience after what happened. She stated that she did not know and googled pelvic inflammatory disease in front of me. She sent an emergency appointment to the hospital for a follow up, which never came. I ended up back in A&E.
After more waiting and another scan, I was told the abscess had come back and they did not know why and said it must not be pelvic inflammatory but had no indication what it could be instead. If a cyst is over five cm it is at risk of rupturing and causing a life-threatening infection which I experienced previously or causing a torsion around the ovary which cuts off the blood supply which can damage or kill the ovary if not treated in time. I was sent to the Rotunda in a taxi as no ambulances were available. I got keyhole surgery to remove the cyst and was warned that there was a chance I could lose the ovary and get a c-section scar. Fortunately, neither of these things happened.
After the surgery I could barely walk, I missed more college and even when I was better, I still had days where I was too weak to go in. Walking and going up stairs caused pain. At a follow up consultation, I was told that the cyst was an endometrioma, which meant I had endometriosis. I was told to go on the pill and sent home. I was planning to wait until I finished college before I went on the pill as I had bad experiences before and could not afford any further setbacks.
I started getting pains in my side again in the second semester, I was informed that I had to wait months for an appointment and when I explained that I was worried that I could develop a serious infection like last time, I was informed by the HSE that they could not do anything unless that happened. I ended up back in A & E towards the end of the last semester, upon arrival I was told that the ultrasounds were not available on the weekends and after waiting five hours I was told to go home and come back Monday. The doctor stated that my pain did not look severe enough to keep in hospital and when I asked for painkillers better than paracetamol, I was told “we are not giving you opioids” even though I never requested that.
I came back on Monday and had an ultrasound and was told that I had two cysts, one on each ovary. The doctors stated that I would have to go home until I received an appointment as the cysts I had were not capable of causing the pain I was experiencing as they were simple cysts which go away with time and are a normal occurrence for women. It was not suggested nor investigated that something else could be causing the pain, instead I was dismissed. I waited for six weeks for an appointment while bed bound from severe pain, I regularly had to ring the hospital requesting the appointment soon. At the appointment I was told that my ovaries had become immobile as endometriosis tissue had caused them to develop adhesions to my abdominal wall, meaning every movement was causing pain. I was given hormonal tablets to take that would remove these adhesions, however this is just a temporary solution.
Endometriosis is an extremely understudied condition especially considering how common it is, affecting up to one in ten women. The average time for a diagnosis is between seven to ten years. As journalist Gabrielle Jackson writes “Women wait longer for pain medication than men, are more likely to have their physical symptoms ascribed to mental health issues, and are more likely to have their disease misdiagnosed, become disabled after a stroke, suffered from illness ignored or denied by the medical profession and wait longer to be diagnosed for cancer”.
There is a massive gendered gap between the research done on men’s and women’s health, many conditions that are mainly affected to women are primarily studied on men, and women are often left out of clinical trials and drug trials. There is no doubt that if more research was done on women’s health and women like me were not dismissed or expected to deal with severe pain, I would have been medically treated better and faster and would have missed less college as a result. Women experience pain regularly but due to sexism this pain is often dismissed or a taboo subject to discuss such as period pains. Due to this women have grown accustomed to living with pain in silence and as a result don’t often look like they are in pain. The lack of education women are given regarding their own bodies further adds to the delay in diagnosis, most education is surrounding our reproductive capabilities and little else and in order to discover details of our conditions we are expected to find this information ourselves instead of being informed by medical professionals.
Trinity was very helpful when I reached out about my issues and offered me extensions but much of what I needed help with was not the responsibility of the college to provide and instead the health system which it failed in many ways. The health system as it stands needs to improve in relation to women’s health. Many women are now seeking treatment for endometriosis in Romania as Ireland’s health system has failed to listen to their experiences or given them long wait times for a condition that if complications are not treated in time can be life threatening. If I was treated and informed better, I would have been able to attend more of my final year and definitely would have been able to get a better final result. By looking at the state of the health care system for women it can be acknowledged that sexism remains systemic as it continues to impact the research that is funded and how women are treated.
