My Endo and Me
I don’t remember when it all began. The debilitating cramps, month-long periods and migraines. I remember when I went to my first doctor for it, though. I was 18 and in my first year of university. She was a lovely female doctor who didn’t know me from a bar of soap, but she could see the pain I was in. She didn’t know what to do for me, but I saw a box in her office with ‘Mirena’ written on it, and I asked what it was. And that was that. The university doctors paid for my first ‘Mirena’ because my heavy periods and headaches that came with them were affecting my studies. Within 2 weeks, I was all fitted with my new Mirena. I had an afternoon off uni, and away I went.
Fast forward through my undergraduate degree to my postgraduate studies in Primary school teaching, and the pain crept back. My migraines had improved, and I wasn’t having periods, but the debilitating pain was back in full force. But I had my Mirena?? I managed to get through my post-grad with Panadol and Ibuprofen, but I was a mess by the time Christmas came. I had weeks of bend-over pain across my whole abdomen. I couldn’t focus and was waking up at night in agony. I had no idea what was happening with my body and why I was in such pain. I never fainted, but I came very, very close. One night it was so bad I begged my partner to take to me the hospital. I managed to stay put, and with a hot water bottle and panadol, the pain subsided enough for me to drift off.
It was that morning we decided I needed to see my doctor. I organised an appointment as soon as possible and felt relieved that I would get help. I was so, so wrong. I was staying in Whanganui, where my partner lived and paid $75 to go to the Accident and Medical there the following day. I had to pay this much as I didn’t live there. I was quickly diagnosed with Pelvic Inflammatory Disease and prescribed some strong antibiotics. I was subject to internal swabs and sent away to collect my prescription. The doctor didn’t explain what it was, and I remember being relieved to have an answer. I rang my Mum straight away and told her. I could tell instantly something was off when I told her with relief what it was. She asked me, “do you know how you get that?” I had no idea. She told me it is an infection you get from having months, if not years, of the sexually transmitted disease Chlamydia. Now I don’t judge anyone who has had an STI as, of course, sometimes it just happens no matter how cautious you are. But I was in total shock. I was SURE I didn’t have it. I had had many STI checks after sex with my previous partners and before my current partner, and the tests were clear. How could this be? My relief instantly turned to dread and then shame. Total shame and embarrassment. All this pain, and it was my fault.
But then there was something in me, maybe intuition, that told me this was wrong. Yet, I took my antibiotics anyways and then experienced a few weeks of emotional turmoil, wondering what was truly happening. I also googled all sorts of outcomes of this disease which, of course, all led to infertility, and by the new year, I was a mess again. And now I seriously freaked out.
After the full course of antibiotics, the pain didn’t go away, so I went back to the doctor.
Another male doctor was a fill-in from my normal doctor. He took more swabs and then decided I needed a stronger dose of antibiotics to kick this infection. All the while, I was becoming increasingly sick and desperate from the antibiotics and the continuous pain that was not going away. My previous swabs, taken from the hospital, returned negative, but he was still sure it was PID, and we would get the positive Chlamydia results the next time. Nope. The results were in, and there was no sign of any STIs in my body. And, of course, the pain was getting worse and worse.
You may be asking why the doctors refused to look at any other diagnosis… and I wondered myself too. I had read about something called Endometriosis and asked this doctor if this was what I had instead. But he shut me down and said there is no way I have Endo because I don’t have regular periods, even though this was due to my Mirena. He told me I couldn’t possibly have it with a Mirena in. No way. Not. He wrote some lame referral to the hospital gynaecologist and sent me on my way. I knew in my heart what I had, but I listened again to the people who know ‘best’.
A few weeks later, I got a phone call. My referral had been declined. No explanation. My heart broke, and I went numb. No one was listening to me. I was sick from 6 weeks of strong antibiotics and in pain daily. And my plea for help from the professionals in this field was turned away. Of course, the pain stayed, and I got desperate AGAIN. So back to the doctors I went. This time it was a female doctor who was filling in. I explained AGAIN my symptoms, and AGAIN, I got a lecture about STIs and how even after negative results, I could STILL have an STI. I just sat and cried in her office, and luckily my sister was there to say the words I could no longer say. What is the point of STI checks if it doesn’t matter what the results are? How can I have PID with now 3 negative results, including the ones I took before my current relationship? She insisted, and I left, defeated again. Oh, but not after more swabs, to be sure. A week later, negative swabs result in any STIs. Surprise surprise.
By now, it was starting to have an impact on the way I felt about my relationship. Did my partner give me an STI? Did I give him one? Luckily, I have the most supportive partner in the world, and he just dismissed these silly doctors and stayed brave for me, even though I could tell a tiny part of him was worried too.
According to the doctors, my symptoms should have been easing up, as the infection would be gone by now due to the antibiotics. Of course, there was no change. Four months into this ordeal, I finally returned to a fourth doctor. I took my Mum this time, and I was sure it would be different. But it wasn’t. The same kōrero, again. I sat there and begged her to think about another diagnosis. I cried, “but my boobs are so swollen I can’t touch them!” tears and hupe ran down my face, “It MUST be hormonal; it must be something else”. She had no answers. She agreed that it wasn’t PID, but she had no idea what it was. That was the final straw. My Mum and I decided it was time to get in the big guns. My referral was declined so that we would pay for the specialist appointment ourselves.
We paid $250 for the most well-known gynaecologist in Wellington. We turned up; we went halves (I was a beginning teacher and still in my first few months of earning after Uni; I didn’t have that kind of money lying around). I will say, though, I am grateful that I had that financial support, as I know that not everyone does. Thank you very much to my Mum & Dad. At the appointment, I explained what was happening to me. He felt my tummy a wee bit and, after 15 minutes, said the words I had been waiting to hear. The words I already knew he would say. I already had an answer: “You have a disease called Endometriosis. We need to operate as soon as possible.” Five minutes later, I was in the waiting room, reading a pamphlet on laparoscopies and the potential risks of surgery. One month later, I was booked for my operation. If you are wondering, Endometriosis is a disorder where tissue that normally lines the uterus grows outside of it. There is not a huge amount of research on it, so no one knows what causes it, but some believe the small adhesions can be formed from your period moving from inside the uterus to anywhere else in the pelvic area. These can only be removed through keyhole surgery. There is a lot of mystery around Endometriosis, but you can learn more through the NZEndo website. http://www.nzendo.org.nz/about-endometriosis The pain isn’t related to the amount of endo you have. You could be riddled with the adhesions and be in a small amount of pain, OR you could have minimal adhesions and be in agony.
Finally, my surgery day came. My whānau came, and I was under after a karakia and some pre-op mahi. A few hours later, I woke up in immense pain with a drain in my abdomen and a confirmed diagnosis of Endometriosis. It wasn’t severe but ‘mild’ according to my surgeon. I would argue what I had been through over the last year was certainly not mild, but I guess it’s my body so that I would know. And I think that is the moral of this story (that is not over, by the way) that I know my body better than anyone else. I knew something wasn’t right, and I think I may have known what it was the entire time. Every time a doctor sent me away for another ‘test’, I knew what was going on. I continued to fight and push until I and my womb were heard.
Following this surgery and a second one this year, I have continued on my journey to understanding my Endo and my womb, and I have learned so many things - which I will save for another story. But above all, I have learned, wāhine, listen to your body, listen to the signs she gives you, and never give up hope that things will get better – no matter how hard things seem to be.
Kia kaha wāhine mā, kia māia, kia manawanui.