While I’ve talked about making changes to my diet and lifestyle in order to improve my health I have never really divulged why, I suppose I have never wanted to be defined by my chronic condition. I find it more difficult to manage my symptoms when I am focused on them; I seem to have found a way to partition my suffering so that if I focus on other things the pain becomes much more manageable. It was a strange concept that I was introduced to, very Buddhist, I cannot control my pain, but I can choose not to suffer. It takes immense internal strength and focus, I cannot do it if I am tired, hungry or stressed, I need to be in “a good place” otherwise whatever thin wall my suffering sits behind crumbles away.
It has been almost 4 years since my diagnoses and as much as I had hoped that the surgery I had at that time would be a cure, that thinking was naïve. I was absolutely in the denial stage of my diagnoses at the point. I didn’t progress through that as someone normally would, when my diagnoses came I was already angry, angry I was in pain, that my life was shrinking around me, angry that despite reaching out for help I had been dismissed by doctors, my pain being put down to IBS, PCOS and the most humiliating experience of all when one A&E doctor diagnosed trapped gas as the reason for the pain in my stomach, a pain so excruciating that it rendered me mute for hours. After collapsing in pain at work and getting another referral to hospital I was reviewed, told I had a 6cm mass on my left ovary, but that I wasn’t in the “right type of pain” to warrant further treatment. I was then discharged from that service and referred back to my GP for pain medication. When I left the doctor’s office that day I wanted to scream, I could feel it inside me, a hot, angry, course noise desperate to get out, but I knew if I started I probably wouldn’t stop and I had to get to work, of course I had to get to work, that’s what you do isn’t it? Instead of bawling in the street I called my Husband (Then Fiancé) and swore like a drunken sailor and he promised to come to every appointment with me from then on, after all it would be much harder to dismiss me publically and with back-up wouldn’t it? I told him there wouldn’t be any need; I wasn’t going to see another doctor, as they clearly didn’t want to help. It is a rotten, hollow despair that fills in for the hope you once had that you would get help to heal, it toughens you to the world in the worst way, the strength you think you are showing is acerbic to others, words used to describe me during that time were sharp, curt, direct, there was no soft side, I couldn’t afford soft, soft couldn’t handle the pain.
And so I soldiered on trying to hide how much pain I was in and slowly getting sicker as time went on. Eventually we decided to seek help privately, which was simply life altering for me. From the minute I stepped into the private hospital, all doilies and comfortable chairs, the mood was different. The receptionist was warm and personable bringing a tray of tea (teapot and all) out to waiting visitors and patients alike. My doctors listened intently to me, examined me and within ten minutes had given me a clear indication of what he thought was wrong, not IBS, nor PCOS, nor gas but Endometriosis. I was scheduled for surgery to remove the growth (an endometrioma) which had now grown to 9cm (that’s the size of a grapefruit). I woke up from my surgery to hear the most incredible words “I’ve found the reason for your pain”. I felt vindicated, validated and relieved, all I said to my husband was “I knew it wasn’t in my head” and wept. I think at this point I began living in a bit of denial, I felt like a new person after my surgery and the surgeon was confident it wouldn’t grow back so maybe it wouldn’t? When my symptoms started to return I started bargaining, maybe if I give up sugar as well as wheat I won’t get worse, I did, maybe if I give up dairy as well then I won’t get sick, I did. It did come back, its 6cm and growing steadily and spreading.
Right now I am somewhere between acceptance and depression, accepting that radical changes to my diet and lifestyle are needed to give me the best chance at controlling the rampant progression of my condition and depression about how restrictive that feels during this transition point between how things are and how things might one day be.
What I am sure about is that I have to keep trying, my Husband and Son both deserve that.
And Me, I deserve that.