Endometriosis

The first obstacle to becoming a parent came long before I met my wife. When I was around fifteen, the period cramps that had previously been uncomfortable twinges began to morph into debilitating waves of pain. The GP that I saw was markedly disinterested in my symptoms and placed me on the contraceptive pill with the instruction to only take the sugar pills every third packet. I elected, instead, to take them only in the school holidays, where my regimen of alternating two-hourly between paracetamol and nurofen while writhing in pain could be conducted in private. I have a fond memory one school holidays of a similarly afflicted friend and I buying back-to-back movie tickets for an entire day at the cinema, curled up in the darkness snacking on popcorn and painkillers.

By the time I was eighteen, the pain I experienced during each period had intensified and lengthened. I was barely able to eat, move, or sleep for three days each time I took my sugar pills. My roommate and neighbours in my student hostel brought me plates of food from the dining hall, and I’d crawl to the shower from my bedroom. I took double the prescribed doses of any painkiller I could get my hands on, and still only received a mild dulling of the pain in return. The GPs I saw every three months to get new pills calmly weighed me, took my blood pressure, told me I was in great shape, and wrote me a new prescription. Help finally came from an unexpected source when my father walked into the lunch room at his work to overhear a colleague discussing a surgery his daughter had just had that had changed her life. Her story could have been mine – five years on the contraceptive pill, worsening pain, disinterested GPs. Desperate, he had taken her to a private specialist, who had diagnosed her with endometriosis and offered her surgery within a fortnight. Two months on, her periods were regular and pain-free. My father obtained the name of the specialist and accompanied me to my rather flustered Student Health GP to demand a referral. After a few minutes of questions I’d never been asked before* and a short internal examination, I was booked in for surgery and had at least three years of endometriosis removed from my abdomen.

I have a lot that I could say about the way that the New Zealand public health system fails at protecting and preserving the reproductive health of young women. I wish you luck in finding someone that did not have to endure years of pain, worsening symptoms, and invalidation before being diagnosed with endometriosis. I was one of the lucky ones: my father’s overheard conversation and the fact that, aged 18, I was still included under my mother’s health insurance, meant that my endometriosis was identified and treated in a relatively short time compared to the wait many others face.

My relief from pain was not quite as marked as I'd hoped, but my periods certainly became far more manageable. I could study, learn, work, travel, and even dance while I had my period – it was life-changing. The surgeon had told me that the endometriosis had not been on my fallopian tubes, where it would have posed the greatest risk to pregnancy, but on my ovaries, which are far more robust. He told me that it would grow back if I ever went off the contraceptive pill, and to continue running my packets together so I only had a period every 9-10 weeks.

Seven years later, however, things started to go downhill again. I was having pain – nowhere near as intense as before, but definitely worsening steadily. My period returned right after it had just finished, and stayed for six weeks, then tapered off to endless spotting. My lovely, wonderful, female GP in Rotorua put me straight on the waiting list to see a gynaecologist – and then I moved to Auckland.

I repeatedly requested a referral to a public gynaecologist from my new GP, only to be told that the problem was hormonal, a symptom of my body suddenly deciding it didn’t like the pill I’d been taking without a single problem for more than ten years. He changed my contraceptive pill repeatedly: one made my boobs hurt so badly I couldn’t stand to remove my bra; another made the spotting worse. After months of pointed cheerleading from my wife I returned to demand a referral, and was finally granted one a year after I’d noticed my symptoms worsening. My gynaecologist was kind, but concerned: my uterus felt stiff, she was having trouble manipulating it, and I needed surgery.

My operation happened on June 25 last year, 18 months after the never-ending period, and the news wasn’t very good. There are lots of medical terms on the discharge summary: “retroverted uterus with difficult uterine manipulation”; “filmy adhesions in both ovarian fossa”; “endometriosis in right ovarian fossa and medial to the left uterosacral ligament”; “unable to demonstrate tubal patency”. The way she explained it to me was that my ovaries were stuck to my abdomen wall with scar tissue from my previous operation. She could see fresh endometriosis growing underneath them but couldn’t get to it without removing the ovary from the abdominal wall, which would only lead to future scarring, which would likely re-adhere the ovaries to my abdominal wall causing further damage to my fertility. She’d tried to flush my tubes only to find them blocked and have the blue liquid flood straight back out all over her white shoes. She placed a Mirena to try to prevent any further endometriosis from growing, but I should not expect to be pain-free.

I cried. I raged. I changed GPs.

The news that my fertility had been so significantly compromised took a while for us to comprehend. It was nine months until our wedding, we were still both driving beat-up two-door cars from the 90s, and our newly adopted cat was still skittish and snappy. I floated the idea of trying to get pregnant before the wedding, but our savings were still too small to pay for that, the wedding, and the car, and we hadn’t even registered with a fertility service yet. Linda had just started a new job, and we couldn’t afford to be down to one income three years earlier than we planned. The Mirena was in place, so things shouldn’t be getting any worse. The spreadsheets stayed as they were, but the  first twinges of doubt began to take the shine off our perfectly-projected future. Perhaps this wouldn’t be quite as easy as we thought.

[*Some of the questions the private specialist ask me to assist with diagnosis were:

• Do your bowel habits change significantly (constipation, diarrhoea, pain passing bowel motions, or a mixture of the above) during your period?
• Do you feel the same, or similar but less severe, pain in between periods?
• Is sex or orgasm painful?
• Do you experience nausea, dizziness, sweatiness or loss of appetite associated with your pain during periods?

If you find yourself answering yes to any of the above, get your sweet ass to a doctor and please, don't leave until you have a referral to a specialist.]