Living with endometriosis
Updated: Oct 27
I’m kind of used to living life on the “safe” side or within restrictions that my body will allow me to. I have learned very quickly through other personal experiences, that without health, you cannot do much in life at all.
I was meant to publish this blog about Endometriosis, early 2020 but COVID reached our shores and this blog was shelved as a lower priority. And we managed to live COVID-free for some time, yet here we are, a year and a half later with Delta in our community and the elimination strategy adapted. During our nationwide lockdown, I realised my blog needed to be finished,. (Buckle up everyone, this whole blog will be talking about menstrual health, and may have some awkward chitchat but afterwards you may be able to encourage a partner / friend / relative to seek further diagnosis.)
Endometriosis is a painful disorder where tissue (similar to the tissue that normally lines the uterus,) grows on the outside of the uterus. So, every monthly cycle when women have their period, that outer tissue would also thicken, break down and bleed. The surrounding tissue becomes irritated and develops scar tissue and adhesions.
I’d heard of this condition before, like Chinese whispers mentioned here and there on the internet. Talks of the condition being quite common, but people not realising or being diagnosed early enough. In 2019, It took me fainting on set from abdominal pain and cracking my head on the concrete floor while working on a job, to seek further advice. (Thankfully the ponytail seemed to save me from a concussion.)
I got referred to a specialist who then told me I had Stage 4 Endometriosis.
I blinked through my nervousness to hear the diagnosis.
From pressing on my tummy, followed by ultrasounds, my specialist suspected the endometriosis had grown through the wall of my bowel and stuck my ovaries to the back of my uterus. "Chocolate cysts", were also identified in the ovaries that would need cutting out. Man, I always do everything in life 150%, even physical ailments it seems. He made a comment that he was very surprised about my pain threshold and that I hadn’t been referred on sooner.
The specialist outlined that symptoms that can be experienced are:
pain during intercourse/bowel movements
heavy or abnormal menstruation
constipation or nausea
abdominal fullness or cramping
I was able to identify with some of these other symptoms. For example:
My tummy was bloated 24/7 and anything that pressed on my abdomen brought so much discomfort. I even was asked a few times if I was expecting again.
All the abdominal pain that had progressively been getting worse, like an internal stabbing, deep from within you. Up till the last six months, it’s been fairly manageable, but when it was really bad, I would struggle to get to a bathroom and just go foetal position screaming trying not to frighten my son. Sometimes I didn’t quite get the door closed in time and he would come running in and gently stroke my tummy trying to bring me comfort.)
I had an epiphany moment about the last symptom, infertility. My bubbly larger than life (then) four-year-old was a miracle and no wonder my pregnancy was so painful. Thinking about my inner organs all fused together with adhesions that resembled sticky chewing gum. Then as baby grew, those adhesions, stretched. It honestly felt like I was being torn apart from the inside out and I ended up admitting pregnancy early to my boss because I was bedridden from the pain.
The specialist continued to talk to me about the next steps to help ease symptoms:
Medical treatment (using hormone therapies or a Mirena)
Surgical treatment (keyhole surgery/laparoscopy, including removing the uterus as an option)
If cysts are required from the ovaries, it would most likely lower fertility. For many women, there would be questions around harvesting eggs before the operation, if you can afford it, but for most it may be financially out of the question. Given the severeness of my condition, his recommendation was to operate as he didn't feel medical treatment would help. I was searched his face for reassurance, that he’d dealt with a complex case like mine before to put my mind at ease. He remained calm, was empathetic and provided a solution, so I put all my trust in him.
Post operation, the best case scenario I’d have three cuts in my tummy to allow the affected tissue to be burned out. Worst case scenario I would have to be cut vertically up my body to allow for the bowel reconstruction. That's what the second surgeon was required for. Intense. But they wouldn’t know for sure till they cut me open. I tried to diffuse the uncertainty with humour while getting ready for the operation, trying to hide my nervousness and making small talk with the medical team. They were very reassuring which put me at ease and as I counted back from twenty as the general anaesthetic entered my body and I drifted off to sleep.
After surgery, I came in and out of consciousness. I was half-aware that family had come bearing gifts of sushi and Jasmine bubble tea and had slept well beyond the estimated waking time. But when I did wake properly, I anxiously peeked at my tummy. Good news, just four tiny cuts. Surgeons later informed me the endometriosis was just stuck to the outer wall of the bowel, all adhesions had been burned out, my ovaries cut free and chocolate cysts had been removed. I was pretty jammed up in there but all my inner organs were able to be pulled down to where they would normally sit. The new learning was that I had adenomyosis, which meant that certain symptoms would not be fixed by this operation, for example stupidly low iron levels.
Being diagnosed with a condition which explained my tiredness made me feel less guilty about not keeping up with things. I was always the one to retire early from social gatherings. Previously I'd wondered, "was I “abnormally” tired or was it all in my head?" I look back on my competitive volleyball years with a less harsh lens on my physical performance and amount of recovery time I needed comparably to others.
Surgeons were surprised by my good recovery and limited pain relief. I was very optimistic and positive and would take my gentle morning stroll around the ward as recommended, then completely conked out from exhaustion. (So much for that novel I brought in my overnight bag.) Tramadol seemed to get me through three days in hospital so no need for morphine and soon it was time to return home.
A few days later, I weaned myself off Tramadol, the “happy drug.” which a pharmacist friend told me when that happens, watch out for the “blue” period. I definitely hit an emotional low, feeling incredibly sorry for myself and my incapacity to do anything, but my hormones eventually evened out.
It was super challenging not to engage the core to allow myself to heal. I guess it’s comparable to a C-section, except you’re not just being slit open. In this operation, I’d had an immense amount of tissue removed and now I had to rebuild all that tummy muscle strength up. And you use your tummy muscles for everything, especially as a parent. The job never stops. We bought one of those litter grabbers so I didn’t have to bend over. But I still put my back out a couple of times, once was just by watching tv from a slightly off-centre angle. (I now have a stronger core and body overall, thanks to the desire to pursue a new fun hobby in stunts, which is mostly why I had been absent in the blogging world for the past year after emerging from lockdown in 2020.) And you definitely have to watch those stitches from pulling apart. I'd recommend 3M Steri-Strips, which pull the skin tight together. Only got onto those late, after had issues with my big wound through the tummy button get infected.
Since being open with my diagnosis, I've met others who have had the same operation. Most people the operation, had changed their life and now live pain free. Others have had to repeat surgeries because the endometriosis has just regrown, which may be inevitable in the long run for my case. I’m now just under two years post-operation, and have noticed a familiar pain just faintly on my left-hand side of my lower abdomen. That's ok, at least now I know what I'm dealing with.
I share my story, because I do not want anyone else to go through unnecessary pain or guilt due to unawareness around endometriosis. Now I at least, know what I'm dealing with and can manage it better with medication and exercise. Don’t try to be a tough cookie and endure the pain till it’s unbearable like I did. If symptoms/pain starts to interfere with your everyday life and starts messing with your mental health, please seek further help to reach a diagnosis, so that you or your partner/relative/friend can get the help needed to manage symptoms better. Sending love to all in uncertain times.
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