Kate’s Journey
I got my first period when I was 12. Within 6 months I was suffering from painful cramping, diarrhoea and heavy bleeding. The pain was so extreme that I remember almost blacking out in the school toilets, then spending the rest of the day in the school sick bay, because my mum was working.
When I was around 15 my mum took me to see a women’s health Dr. I was put on the contraceptive pill and told that I most probably had Endometriosis and that it may be difficult for me to have children. Thankfully the pill seemed to settle my symptoms down a little. I still had cramping and heavy bleeding, but I was able to actually function and go to school during my period.
When I met the father of my children at 19, it played on my mind a lot that I may struggle to have children. That made me want to start trying to conceive sooner rather than later. I fell pregnant quickly and was pregnant just before our wedding in 2001. Unfortunately, 2 weeks before our wedding, I miscarried. It was a very long-drawn-out process causing me a great deal of pain and mental suffering. I went on to fall pregnant again 3 more times and now have 3 amazing children aged 23,21 and 16.
After the birth of my 3rd child, I started to have irregular, heavy bleeding again and was sent off to have an endometrial ablation. I was told after this procedure that I had Adenomyosis. Unfortunately, the ablation didn’t work, and I opted to have a partial hysterectomy, I was 33.
After the hysterectomy I continued to suffer with pelvic pain, painful bowel movements and pain during sex. I went to my GP, who continued to tell me that I had IBS and I needed to change my diet. Life was busy with 3 young children and running a business that I just battle on.
At the age of 42, I moved to Townsville to be closer to family. I started bleeding which caused alarm bells. Thankfully I now had an amazing female GP, who listened to me and told me that she thought I had Endometriosis. I was sent for a CT, MRI and Ultrasound. The MRI showed deep infiltrating endometriotic deposits in my vaginal vault, extending to my bowel. After 27 years of suffering, I was finally being diagnosed.
In June 2022 I had my first laparoscopy. Due to the endo being bowel related I had a colorectal surgeon and well as the endo excision specialist operating on me at the same time. The outcome, deep infiltrating endometriosis on the outside of my bowel, as well as rectovaginal nodules, and a vaginal nodule. The specialist’s words to me was “it was bloody everywhere, and its been there a long time” At that stage my ovaries looked ok so the decision was made to keep them to prevent me from going into menopause.
By January 2024 the pain was back, especially in my lower left abdomen. A trip to ED revealed that I now had a cyst on my left ovary. By April I began bleeding from my back passage. I went to see my GP and told her it was only happening once a month, straight away we both knew it was Endometriosis. The colorectal surgeon who preformed my first surgery told me it was probably just hemorrhoids and not to worry. After a colonoscopy he called me to say he was very surprised to have found a lesion close to my sigmoid colon that had tested positive for endo. I needed an anterior bowel resection with the possibility of needing a stoma and ileostomy bag. The Endo specialist also decided that now was the time to remove my ovaries to help slow the growth of it. Surgery was booked for the start of November, by the end of October I could barely walk. I had left my job at the end of September due to the ongoing pain.
I had surgery at the start of November. I had both ovaries removed, 20 cm of my bowel removed, and part of my rectum. An endometrial nodule was found to be growing out of the top of my vaginal vault and into my bowel, fusing them together. My bowel resection was successful and I thankfully didn’t need a stoma. However when the urine catheter was removed, I was unable to urinate, this lasted 4 weeks. I was scheduled to have another procedure just before Christmas to investigate why I was unable to go. Two days before the procedure, I was able to convince the specialists to remove the catheter and let me try one more time, Thankfully I was able to go and avoided another surgery.
Today I am 6 months post op, I am healing slowly, my bowel and bladder function is still not great. I am unfortunately now in menopause due to having my ovaries removed, so I am now trying to navigate all the symptoms and other things that go along with that. I am still in pain every day from other endo related problems, like chronic back pain and hip pain. The toll that Endometriosis has taken and is still taking on my life is so very hard. It has affected my career, my relationships with my children and partner, the physical and mental toll is huge, it is relentless, it is never ending.
