My traumatic experience with Endometriosis
Warning: This blog contains suicide ideation stories and content that may be offensive. Please proceed with caution. Support resources are mentioned and included at the end of this blog.
March is Endometriosis awareness month. I wanted to share my own lived experience with this chronic illness as 1 in 9 women suffer from it.
When I was eight, I had appendicitis. I started developing severe abdominal pain and was unable to eat. I remember being in bed, or in Samoa we used fala’s (traditional woven mats), we didn’t have mattresses if we did they were used to straighten out the fine mats. I recall always being in excruciating pain and people that came to visit my grandparents would state, “Kalofae si mea, fa’a sa ga ai mago, e i ai agufe (Poor thing, ban her from eating mangoes they contain worms). Everyone had their own version of my diagnosis, I was also given Vai saiga (don’t know the english name), and Eno as my grandparents thought I just had a tummy ache. Weeks later the pain became unbearable, and my grandparents decided to take me to Moto’otua Hospital in Apia. What transpired changed my whole life.
Appendicitis surgery normally takes an hour, and the patient may be required to stay 24 to 36 hours. My story is very different. I went in with extreme abdominal pain and was told they had to operate as soon as possible because it was a burst appendix. I remember how scared my grandparents were, they stood around my bedside in arms and said a prayer of protection over me. I felt relief knowing they will be present when I came out. Once the surgery was complete, we were told it was a difficult procedure but they were able to clean out the abdominal cavities caused from the rupture. I stayed overnight, and then was sent home. When I went home, I couldn’t sleep and cried most of the night. I spent a whole day on my fala (mat) and my wound became completely inflamed it created a dome shaped ball under my bandages. I was taken to the hospital again and had to have a second surgery. The details of this are a bit murky but from what I was told they had found a needle in my wound and had to operate again. This time the Doctor mentioned to my grandparents that I was lucky to have lived and told, “your grandchild, will never be able to conceive.” Now how does this happen. I go in with appendicitis and come out barren. I stayed in the hospital for three months with my grandmother by my side during the entirety of my stay and she would sleep on the hard floor by my bed. This just highlights the dangers of under skilled migrant Doctors in vulnerable Pacific Island nations like Samoa. I hope things have changed for the better as my story was based in 1992.
Fast forward to 2008, I was now 25 and had been suffering through severe abdominal pain from the age of 14, the heavy periods started around this age. I thought this was normal and as I hit my twenties I was told countless times to take naprogesic or neurofen plus to help alleviate the pain. Most women in my family had experienced this so I thought it was common. I finally saw a general practitioner (GP) that took my concerns seriously and she referred me to a gynaecologist. It was here I was told I had a condition called endometriosis. To give you a simple definition, it is like having cysts the size of grapes or eggs growing outside my uterus, bowels and any other areas they can attach themselves to. This pain wasn’t very different from the pain I had when my appendix ruptured but imagine having it everyday for over twenty years.
My experience with endometriosis wasn’t easy. I saw GP after GP that had no idea what to do with me. I started calling them Dr Google instead of their names. They prescribed me pill after pill; each had horrible side effects. One of the symptoms was the impact on my mental health. I had suicide ideation and wasn’t sure why I was having these feelings as I am normally a happy rational person. When I told my GP she looked at me like I was having some sort of mental breakdown, (which I was). She didn’t know what to do with my disclosure of suicide ideation. I immediately changed GP’s after this. The final straw was when I was prescribed another pill brand before I flew to Samoa. I was walking with my cousin to a laundromat because the last taxi driver that dropped us off into town was a moekokolo (creep) and we didn’t feel safe hopping into another taxi. While we were walking, I felt my period coming on, and when we arrived home, the back of my denim shorts looked like a crime scene. I wasn’t embarrassed anymore, I was piqued. I wanted to fly back to Australia and karate kick my GP in the groin, and then punch him in the throat, for telling me this pill was different to the others. Yes, I was that angry! I went and had a shower and I stood there for a very long time under the cold water as my period continued to flow with large blood clots. This was another symptom of endometriosis they don’t tell you. The blood clotting is horrendous, the pain was 1000 percent out of a hundred 24/7.
I worked at Brisbane Airport and I used to work very long hours. In my Kmart handbag and locker, I would have a stock of maxi pads, spare undies and multiple black stockings in case I had a leakage. I even had some stashed in my work drawer and my car glove box. I recall when I worked as a dispatcher for an airline, I was meant to meet the flight on arrival as I was one of the bridge drivers. Instead, I was stuck in the toilet with a massive blood stain on my work pants and my supervisor had to run and bring me pants to change into, luckily I had spare undies and pads in my trusty old bag. The anxiety is relentless because I was constantly paranoid about leakage even when I didn’t have my period.
I hated it, this was my norm. When we visited my Gynae she referred me to Brisbane’s best. He mentioned it was time for us to think about having children. I told him this was impossible because of my operation I had in Samoa. We did some tests, and we were told I had a 40% chance of conceiving but with IVF. Dr Evans (not his real name) mentioned he had to operate to remove the severity of the endo. After the surgery he mentioned the scar tissue he noticed from when I had my operation in Samoa. While the laparoscopic surgery helped me for a little while eventually the pain returned within a few months, and I was back to square one. Dr Evans recommended we start thinking about conceiving, but we just couldn’t afford it. The kick in the gut was it will cost around $6k.
My husband and I did a lot of research, and I began to tell the GP’s exactly what I needed from them. My husband bought me Vitamins such as Curcumin, and Ashwaganda to try and help the inflammatory, this helped a little. I tried the Implanon this didn’t work I bled for three months straight and the doctor had the nerve to tell me to go another month. I tried acupuncture, nope did nothing the pain was still strong.
In 2011 on a work trip to Singapore, I started to feel exhaustion like I had never felt before. I couldn’t stop napping I thought it was the Singaporean heat. My sense of smell was multiplied, I felt different as if I wasn’t in my own body. When I arrived home, I stopped by the chemist to grab a pregnancy test.
By the grace of God He heard my cries and blessed me with a beautiful healthy boy. Manasseh was born a healthy 8 pounds 7 ounces and was 54cm long. I remember still being in the operating room after having a C-section. I heard the nurses and doctors say, “how did she get pregnant, where are her ovaries, and cervix, they’re not visible? This is a miracle baby!” As I was being wheeled out, the Doctor said to me while I was in and out of consciousness, “By the way you know you can never get pregnant again.” What a douche bag, telling me I can’t get pregnant minutes after having my first child, seriously mate your timing sucked!
Unfortunately, the words of this Dr became a reality. A year after conceiving, it was back again all the familiarity of the same symptoms. Pain during sex, severe lower abdomen pain, heavy bleeding with thick clotting, multiple showers day and night so I didn’t smell like a Sanitary bin. My older sister talked me into trying colonic therapy as it supposedly helps to remove toxins and waste from your body. If anyone has not tried a colonic it’s horrible you have a tube inserted into your anus and watch (optional) the waste flush out of your system, Gross! Another failed attempt at finding methods to help with endometriosis. I started reading on other women’s testimonies and came across a Brisbane radio host and a well-known rugby players wife who had completed a Chinese herbal tea program. This was probably the toughest. It was a two-week program designed to regenerate my organs, consisting of consuming a concoction of Chinese black tea only, and massages to help the body heal. The whole program cost around $2k, these celebrities living with endometriosis swore by this and they conceived not long afterwards. I on the other hand lasted six days, because I got my period after day three. As mentioned, my periods were very heavy, I was told I was not allowed to take any medication, eat and drink anything other than normal black tea and the Chinese tea. I advised the physician I was struggling to get out of bed because I had become extremely weak from the loss of blood, and he advised me to keep going as I was only on day four. The next day I was taken to the emergency because of major blood loss, and low iron deficiency, (a common side effect of endometriosis). Not one nurse or doctor seemed to care when I was admitted, they said, “Well it’s not an STD, you just have your period” then sent me home with endone. We arrived home at 3am after sitting at the emergency for six hours and I was depleted.
The next day, I went into my massage appointment as part of the program, and he took one look at me and said. “You don’t look well; I think you need to stop the program.” No shit Sherlock, music to my ears. My beautiful husband made me a light soup to ease me back on food as I had not eaten for six days. I had lost six kilos in six days and felt like a feather walking around weighing now at 66kg . In between this I was still a mum and had to do the normal school things with my son including pick up and drop off as he was in prep. Along with all the shit I had to go through, having to still be a functioning mum, was extremely difficult. I struggled to remain present with my son and at times, working full time then dealing with endometriosis and juggling life was madness. The support of my husband Davy has been amazing. He was the one that was doing the chemist runs at random hours of the day and night including stocking the fridge with my monthly chocolate fixes as well as my bathroom cupboards with maxi pads.
In 2019, Davy and I decided to try IVF as one last option before having a hysterectomy. By this time IVF clinics were becoming less expensive, and we tried a bulk billing fertility center. This was a whole other journey. You have to inject yourself daily as well as manually shove vaginal progesterone up your vulva to get the hormones going. I did this for two weeks, it was isolating and terrifying. This whole process cost roughly $800. A lot cheaper than $6k. We were excited but nervous at the same time. I went in to have the embryo transfer. This was an unpleasant experience I laid on the table as they used the largest vaginal speculum to widen my vaginal walls because they had difficulties accessing my uterus. I laid there in tears with my husband by my bedside holding my hand for a good 25 minutes before they found a nurse that could help them with the injection. After what felt like a lifetime, they congratulate you because technically you’re ‘pregnant.’ We went home hopeful and three weeks later I miscarried.
This was it guys, I had given up. In 2020 during covid, I demanded my Gynaecologist for a total removal, a complete hysterectomy. I didn’t want to deal with the pain any longer. I was told of the risks with the surgery; I may not make it out of the surgery room alive or if I did, I would be carrying a stoma bag. Secretly I hoped I wouldn’t make it out alive. I was so exhausted by this time. I couldn’t deal with any more disappointments and suffering. The surgery took 10 hours and I was told they had to have two of Brisbane’s finest Gynaecologist and a bowel surgeon to operate on me because my uterus had become so enlarged it wasn’t safe for key hole surgery and the adhesions from the endometriosis was stuck to parts of my bowels. I have so many scars on my lower abdomen. I forget what my stomach looked like before any of the surgeries including pre-pregnancy.
Since 1992, altogether I had seven surgeries, some were not mentioned in this blog. I am happy to report it’s been three years since my final surgery, and I am pain free. My menopause journey is for another blog but for now I am painless, I am stronger than ever physically. I still struggle with severe anxiety but as a registered Counsellor I am able to regulate my emotions as they come up, exercise and self-care is essential. I have only given you a snippet of my journey but if you or anyone you know is suffering through the same thing, please find a good GP. Understand your rights as a patient, you don’t have to agree to what they prescribe. Tell them what you need from them, it’s meant to be a collaborative process. No one knows your body better than you, make them listen. If they don’t, find a doctor who will. Research so you are well educated about your condition, knowledge is power. Most importantly have a good support system around you. This is one of the niche areas I counsel in so make an appointment reach out if you need someone to talk to via my appointments page and remember, You’re not crazy and you’re definitely not alone.
Other resources available 24/7
Beyond Blue: 1300 224 636 - 24/7 Offering support for anxiety, depression, and suicide prevention.
Kids Helpline: 1800 551 800 - A confidential and private counselling service specifically for children and young people aged 5 to 25.
Lifeline: 13 11 14 - 24/7 crisis support and suicide prevention service.
MensLine Australia: 1300 78 99 78 - Specialised support for men with emotional health and relationship concerns.
Suicide Call Back Service: 1300 659 467 - A nationwide service providing professional 24/7 telephone and online counselling for anyone affected by suicide.
Disclaimer: The language I used in this blog is expressive and descriptive of what I felt at the time. I don’t condone violence of any sort. These are my personal experiences and everyone is different. What did not work for me may work for you. Please sought advise from a professional medical practitioner (GP).
