I am what a person with an invisible illness looks like.
I don’t stand out in a crowd nor do people on the street express concern for my health. I smile and laugh with my family and friends. My life appears to be good. But get to know me a little bit more and you’ll see that there is a lot going on beneath the surface.
On the 9th February, 2016 I was diagnosed with endometriosis during a laparoscopic total hysterectomy. I was 30. Finally I had arrived at the end of my 18 year battle to find answers. Endometriosis had covered the outer rear portion of my uterus, my fallopian tubes and my uterosacral ligaments. I had adhesions fused to my bowel. One of my ovaries was distorted and twisted out of place and my uterus was one of the most retroflexed (folded in half) examples my surgeon had seen. What are the symptoms for all of these abnormalities? My day to day life. This struggle could have been minimised if my concerns were heard at the start.
March is international endometriosis awareness month. I thought it fitting to tell my story now in the hope that no other woman has to go through the prolonged struggle that I have had to.
It’s graphic. It’s detailed. But that’s how awareness is spread.
I remember my first period very clearly. I was 11 years old and settling into life at intermediate school. One night I woke up to crippling pelvic pain like nothing I had ever experienced before. It made me feel nauseous, dizzy and weak. I went to the toilet and saw a lot of blood. Panic set in as I woke my mum who assured me I was going to be alright. We talked for a while about periods and how to control the pain. Mum, who also suffered from painful and heavy periods, explained about keeping on top of pain killers and the use of heat packs. Thankfully the pain eased off a few days later and I returned to my normal life. Apprehensive about when this would hit again, but happy it had finished for now. My mum believed it was normal, her mum believed it was normal. It was seen as just part of a woman’s lot in life.
One month later I was once again popping pain pills. I had to have a few days off school due to the pain. This was the story of my teenage life, every month, for the next seven years. Each month my period would get more and more painful. I had to miss school for a few days every single month.
Somehow, despite the time away from school, I managed to gain University Entrance and began my tertiary education in 2004. Things continued from bad to worse. Not only was I in tremendous amounts of pain during my period, I had now started hurting mid cycle when I ovulated. I had to deal with this hell twice every month. Fatigue was my new best friend and I had barely any energy due to the stress pain was putting me through.
I booked in to see the GP at Student Health to demand answers. I knew that what I was going through was not right. Something was wrong and I wanted to know how to fix it. After going over my symptoms with the Dr, I was prescribed stronger pain killers and put on birth control pills. I was advised to run packets together to eliminate my period completely. That was their answer. Stop the symptoms and I would be fine. No need to dig deeper into the cause.
The pills I was on definitely eased my symptoms. I was able to manage my pain enough to focus on my studies. I still had episodes of excruciating pain, but they were few and far between. In 2009 I enjoyed my first year teaching after gaining my Graduate Diploma in Teaching. My husband and I were married in early 2010. Our lives were almost perfect and my horrific painful teenage years were a distant memory.
Until we decided to try for a baby. Of course this meant I had to stop taking the birth control pills. Exactly one month later my life was once again turned upside down. The pain was severe. I was vomiting and shaking. It was no longer related to my cycle, instead there all the time. Whenever we had sex the pain was so excruciating that we had to stop. We could no longer have sex a mere 3 months into our marriage. That definitely wasn’t normal so I went back to my Dr.
‘Psychosomatic pain’. That is a diagnosis I was about to become very familiar with. It’s a really fancy, subtle way of saying you don’t look sick so it’s all in your head. Instead of being referred to a gynaecologist, I was prescribed 3 sessions with a counsellor. My pain during intercourse, according to the counsellor, was caused because I didn’t love my husband. It didn’t explain why I couldn’t use tampons either, or internal examinations which were both equally excruciating. This was by far the biggest insult I had been dealt during my whole struggle with pelvic pain. Needless to say, I walked out and demanded to be referred to a gynaecologist.
Sadly the gynaecologist I saw was no better. After an ultrasound scan came back with no abnormalities, he reluctantly put me on the waiting list for diagnostic laparoscopic surgery and informed me that “when we don’t find anything, you’ll find your symptoms will go away”. He said that if anything was wrong it would have shown up in the ultrasound (endometriosis DOES NOT show up in an ultrasound FYI). I sunk into a deep, dark depression and gave up on any hope of a normal, pain free life. There was no light at the end of my tunnel. Severe pain was just going to be in my life forever. No one apart from my immediate family and close friends knew the extent of it. A lot of people in my life got sick of me being sick and drifted away. My mum saw me pass out right in front of her during a pain episode. My husband held me as I thrashed around in bed, screaming in pain. I took strong pain medication before sex so that we could try to get pregnant. I was exhausted and just lay in bed all the time. That was my ‘normal’ life.
While pregnant with and breastfeeding both my daughters, I had what I considered a holiday from my hell. Even drug free labours were less painful than dealing with my period. Sex was still too sore, but that was my only symptom. Easily avoidable but to the detriment of my marriage. But my painful periods soon returned, each time worse than before. I was told that I can’t possibly have endometriosis as that is cured by having children (which is a lie). All of my symptoms were pointing so clearly to endometriosis and yet none of the Drs or specialists I saw were willing to admit that was what was going on.
While pregnant for the third and final time, I didn’t get as much of a ‘holiday’ from pain. In addition to pain both during and the day after sex, I was now experiencing a lot of pain during bowel movements especially after our son was born. I dreaded having to go to the bathroom. When my period returned that was it. I couldn’t take it anymore. I made an appointment at the private Oxford Women’s Health in Christchurch and borrowed some money from my parents to pay for it.
Dr East was amazing. He was the first medical professional I had seen that understood my struggle. He believed me when I said I was living in daily pain. After hearing all my symptoms he said that he would be very surprised if I DIDN’T have endometriosis. We discussed my options in depth. As I don’t have health insurance, it was sadly not an option to have the leading endometriosis surgeons in the country treating me. My husband and I had decided our family was complete, so a request was sent to my GP for an urgent total laparoscopic hysterectomy and bilateral salpingectomy (tubes removed but retaining ovaries) through the public system. This was in October, 2015.
I saw a public gynaecologist 3 months later. She thankfully understood the struggles I had been through and agreed that the planned surgery was necessary. 2 weeks later I was lying on a theatre table, being put to sleep.
Finally I had answers. Painful sex was because of my retroflexed uterus, which had also squashed my bowel causing the painful bowel movements. My severe period pain was because I was bleeding internally every time. My back ache, leg cramps, fatigue and depression. There were answers for it all. Endometriosis.
A hysterectomy is NOT a cure for endometriosis. It might ease symptoms but there is no guaranteed cure. It might grow back and cause all the same problems. I might need further surgeries. But right now, 3 weeks post operation, I feel like I have won my battle just by being diagnosed. No one can fob me off with psychosomatic pain ever again. I have to be taken seriously from now on. And for that reason alone, I have won.
What is endometriosis?
Endometriosis is when the tissue similar to the lining of your uterus, grows elsewhere in the body. During your period, this abnormal tissue bleeds and becomes inflamed. Only there is nowhere for the shedding tissue to go. This causes pain, scar tissue and can fuse organs together over time.
What are the symptoms?
- Painful periods
- Bowel issues similar to IBS
- Painful sexual intercourse
- Lower back and leg pain
- Ovulation pain
- Bladder issues
How can it be diagnosed?
Endometriosis can ONLY be diagnosed via laparoscopic surgery. Around 1 in 10 women are diagnosed with endometriosis, usually after an 8 year struggle on average. But many more women remain undiagnosed and suffering.
Where can I go for support?
If you are in New Zealand, I highly recommend contacting Endometriosis New Zealand. Their website is a comprehensive resource, as is the book Endometriosis and Pelvic Pain. ENZ can put you in touch with local support groups and events.