Endometriosis, I wish I had known
By Lou Pagart
At 16, I wish I had known that the pill I was going to take every day for the next 8 years was going to hide a debilitating chronic illness, allowing it to grow silently on all of my pelvic organs.
At 20, I wish I had known that the concept of passing out from pain when defecating during my period was not normal.
I wish that the version of me at 24 years, getting off hormonal contraception, was ready for what was coming.
Endometriosis, I wish I had known…
My endometriosis symptoms started a year after I stopped the contraceptive pill. Month after month, my period became heavier, longer and much more painful. At the time I was using a copper IUD as my form of contraception, which I knew was known for making your period bleed heavier, so I forced myself to cope with it. Again, I thought this was normal.
Period after period, painkillers had fewer and fewer effects. I couldn't get out of bed and the pain became unbearable!
It wasn't only period cramps; I also had terrible PMS and extreme bloating. There was pain radiating from my back to sciatica! It became very alarming when I spent 10 days per month struggling and suffering, while the rest of the time was spent worrying about the spotting, the pain or the bleeding through intercourse.
I suspected endometriosis, but I knew so little about it and I thought it was rare. I had no idea it was a disease affecting 1 in 10 menstruators.
As I wasn't an Australian resident, I could not afford to go to the GP. Instead, I went to the sexual health centre many times; I got diagnosed with PID (Pelvic Inflammatory Disease) and they removed my IUD. There was one moment I believed this was the cause of my problems and that I would get my life back - nothing changed.
After many doctor appointments, I finally met one who, after ruling out everything, strongly suspected endometriosis. As I could barely walk out of her room, they sent me to the emergency department. They discovered a 7cm diameter 'inflamed mass' on the ultrasound imagery and I was booked for my first laparoscopy surgery, which was to be a month later.
April 2020 - I woke up after my first lap and was diagnosed with Deep infiltrating endometriosis (DIE), widespread on my pouch of Douglas and bowel. They removed the 7cm endometrioma during the surgery, but they did not operate on the remaining endometriosis lesions.
June 2020 - After a few weeks of relief, my symptoms were back - alongside new ones. The bowel symptoms were the worst, because I have deep infiltrated endometriosis on my rectum, and near my appendix.
August 2020 - I got referred to an excision specialist and a colorectal surgeon. Together we prepared for my excision surgery, so that we could remove all of the endometriosis lesions, and separate my bowel from my uterus.
December 2020 - I had the excision surgery, where all they removed all of the endometriosis lesions, except for the Deep infiltrating endometriosis (DIE) ones on my bowel. It would have required a heavier surgery with two bowel resections, so my surgeons agree to hold off. My bowel symptoms were not too alarming outside of my period.
This last surgery improved my quality of life so much!
My periods are closer to normal than ever. It is painful for the first day, and only when defecating, but for the rest of the month it is smooth. (Certainly nothing compared to before!)
My pain level went from 9 to 4.
The days spent in pain went from 10 days a month to 2 days only.
I am currently off any birth control or hormonal treatment, which is a very personal choice. After having 2 surgeries in a year, I promised myself to be in tune with my body. Also, while still eating chocolate and drinking cocktails on weekends, to be as healthy as I can.
I care for my body by eating nourishing food, drinking plenty of water, exercising daily, releasing stress and above all, listening in and being gentle.
I am now (mostly) at peace with my body, but endometriosis has cost me a lot. In terms of the money (obviously), the 2 surgeries, alongside all of the medical visits have cost me over $10,000 in a year.
I am also learning self-love and body confidence - this is a huge one. Endometriosis and surgeries took a massive toll on my feminity and my sexual life: painful sex, bleeding during intercourse, fear, vulvodynia and more fear. I did not have the tools or the maturity to navigate this at the time, and it took me a lot of work to heal from it.
…But I've made it through. Because here is something endometriosis allowed me to explore and master: Resilience. How freaking strong are we all, as endo warriors!
As debilitating as it is, dealing with a chronic illness can be empowering. Just take your phone, open Instagram and watch. The endometriosis community is incredible! Strong advocates, standing up for themselves and helping out others. I learnt so much from reading other people's journeys and sharing mine. I would not know about excision surgery without this community.
I would not feel how I feel today without them.
…And I am forever grateful.
This post has been written for QENDO and shared with consent.
This blog does not constitute medical advice and is a personal story by someone living with pelvic pain conditions. The medications, supplements, health providers mentioned in this blog are not endorsed by QENDO nor does QENDO receive financial incentive for these products or by the medical professionals mentioned. Please consult with your health care team before considering taking any supplement, medication or treatment pathway.