My Endo and Me

I don’t really 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 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 happened to see a box in her office which had ‘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 full force. But I had my Mirena?? I managed to get through my post-grad with panadol and ibuprofen but by the time Christmas came, I was a mess. 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 I had this feeling of relief that I would get help. I was so, so wrong. I was staying in Whanganui, where my partner lived and paid $75 to go 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 very 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 had all been 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 not right. 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 who was a fill-in from my normal doctor. He took more swabs and then decided I needed a longer, stronger dose of antibiotics to really kick this infection. All the while I was becoming increasingly more sick and desperate from not only the antibiotics, but the continuous pain that was not going away. My previous swabs, taken from the hospital came back 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 STI’s 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 is this is 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. Absolutely 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 the phone call. My referral had been declined. No explanation. My heart broke and I went numb. No one was listening to me. I was now very sick from 6 weeks of strong antibiotics and in pain on a daily basis. 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 female doctor who was filling in. I explained AGAIN my symptoms and AGAIN I got a lecture of STI’s 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, just to be sure. A week later, negative swabs results for any STI’s. 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 there was a tiny part of him that 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. 4 months into this ordeal, I went back one final time to a 4th 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, anything else. I cried, “but my boobs are so swollen I can’t touch them!”, tears and hupe running 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 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 so very 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 was waiting to hear. The words I already knew he would say. The answer I already had, “You have a disease called Endometriosis. We need to operate as soon as possible.” 5 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 in 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 really 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 key-hole surgery. There is a lot of mystery around Endometriosis but you can learn more through the NZEndo website. The pain isn’t related to the amount of endo you have either. You could be riddled with the adhesions and be a small amount of pain OR you could minimal adhesions and be in agony.

Finally, my surgery day came. My whānau came and after a karakia and some pre-op mahi, I was under. A few hours laters, 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 I would know. And I think that really is the moral of this story (that is not over by the way) that I know my body better than anyone else does. I knew something wasn’t right, and I think I may have known what it was the entire time. I knew every time a doctor sent me away for another ‘test’ what was going on. I continued to fight and push until me 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 seems to be.

Kia kaha wāhine mā, kia māia, kia manawanui.

- Hera, Aotearoa