I have never forgotten the moment. Lying on my back in an STI clinic, my legs up in stirrups, an older male doctor staring into my vagina. Looking up at me and shrugging, he dismissively told me, “I can’t see any reason for your pain. It’s nothing more than the niggling backache I get.” And he walked out so quickly that I didn’t even have time to ask a question or utter a response.
Recently, social media has been flooded with the story of a young girl with endometriosis who committed suicide. The details are unclear, so I wouldn’t want to assume that she took her life due to endometriosis, but she had been struggling with trying to get the right support from doctors in the past months and had been made to feel like she was exaggerating the pain for attention.
Sadly, yet I regret to say unsurprisingly, current research and other women’s stories back up her experience. Last year, The Independent reported that women with chronic pain conditions, like endometriosis, are more likely to be misdiagnosed with a mental health issue, wait longer to be seen than men in A&E, and are given lesser treatment when they finally are seen. As if that wasn’t damning enough, a study titled, “The Girl Who Cried Pain,” found that women have to prove just how sick they are before they’re treated with the same urgency and concern as men.
When my depression symptoms kicked in as a teenager, I also became incredibly insecure. So it took a lot of courage to open up to my GP about how I was feeling and I was easily shut down. Despite both of my parents and other relatives having sought support from this same doctor for depression and despite a difficult family life — which he was well aware of — my GP told me he was certain I could talk to them about whatever was bothering me and sent me on my way.
My poor physical and mental health issues carried on until I hit my late teens and early 20s. I had seen various doctors for the pain I was experiencing during sex and for my bladder discomfort and urgency, and over and over again I was referred to the STI clinic. I was put on drugs for chlamydia that made me vomit before they had even sent off the test results and was given various antibiotics for nonexistent kidney and bladder infections. When the debilitating cramping began, I thought someone would listen, but the pattern kept repeating itself.
History changed when my then-boyfriend attended a doctor’s appointment with me and insisted that my pain looked, to him, agonizing. I remember the shock, and then embarrassment, I felt when the doctor looked at him seriously and wrote out my first referral to the gynecologist. I felt ashamed that I wasn’t ever able to get them to do the same, and that my boyfriend must have thought I just didn’t try hard enough.
Now that we are beginning to talk about endometriosis and the gender pain gap, I have more confidence in demanding my needs. Now that I understand my body and the system, I’m more likely to fight my corner. But for all those years as a struggling teenager and young adult, I was in despair; I questioned my sanity, just like so many others have.
I am simply lucky that my endometriosis hadn’t grown rapidly in all those years I went undiagnosed, and I am simply lucky that the mental anguish of not knowing what was wrong with me didn’t push me over the edge. But others aren’t so lucky. Every story I read or listen to reminds me just how much we know our bodies, and just how easily we can be shut down. So, today’s column isn’t about shining a negative light on the medical industry, but rather shining a spotlight on the women who are fighting for a diagnosis, the right treatment, the right care, and the right to have medical rights.
It’s OK to ask for a second opinion. It’s OK to disagree. It’s OK to insist on checking again or trying a different treatment. Keep a diary of all your symptoms, take notes, and believe in yourself and your experience. Do not worry about being disliked, being seen as a nuisance, or being seen as hysterical or a hypochondriac.
This is your body, your life, and your pain. And now the evidence shows that we’ve been telling the truth all along. So, go in with courage and confidence and always expect more than a shrug for an answer.
Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.