By the time Katie was diagnosed with Endometriosis her bladder was badly damaged. She feared she would never be able to have a baby. This is her amazing story.
Endometriosis has been has been part of my life for many years now.
I don’t recall my periods being painful in my teenage years but something obviously changed and in my early 20s they became quite painful. The reaction from my GP was that it was normal. However, with the support of my mum, we sought further advice based on the painful periods and the pain that occurred in my bladder that coincided with my period each month. Naprogesic was certainly one pain relief that helped, but I always suspected the painful symptoms when I used my bladder were not normal.
After having a laparoscopy, being diagnosed with Endo and suffered partial excision of my bladder, I was advised not to wait too long to have a family. We certainly took that advice on board but at that point my husband and I had just bought our first home, we were not yet married, busy with our careers and wanted to travel. I guess it was always at the back of our minds.
During the lap I had 30 per cent of my bladder removed but I was told the bladder can stretch, so the advice from my urologist was to practice holding on. The fear of losing my bladder was certainly one of the deciding factors in having the laparoscopy and the partial excision of my bladder. Almost 10 years on, I have a completely healthy bladder.
Anyway, four years after the surgery we were ready to have a family. After six months of trying we consulted with specialists and were advised that IVF was the best option. We were fortunate that our first attempt at IVF resulted in our first pregnancy. A normal pregnancy followed, until 26 weeks, when our little girl decided to make an early arrival. And then six weeks after her arrival, my period returned. My specialists were as devastated as I was. The hope of a normal pregnancy followed by at least six to twelve months of no period to give my body a break from Endo did not eventuate.
The pain and symptoms returned but this time they were impacting on my bowel. Having a few days every month where I felt pretty ordinary and constantly having to rush to the bathroom while looking after a new baby was tough. The pain always arrived before my period and usually stayed a couple of days. Desperate to avoid further surgery I turned to a naturopath specialising in fertility and IVF, following a recommendation from a family member. We worked together on nutrition, exercise and supplements to manage my Endo while also preparing my body for another tilt at IVF and pregnancy. Those couple of days a month when I had my period started to improve and I felt better overall.
I fell pregnant again after my second attempt at a frozen embryo transfer and carried my second baby girl to full term, 38 weeks and 4 days. I have been breastfeeding her for nine months now and my period has not yet returned. I could certainly get used to life without my period – it’s fantastic!
I have been fortunate to see supportive, proactive, professional and caring GPs and specialists, all bar that first one. I don’t want others to feel I have glossed over my experience because there have been tough times without a doubt when I have cursed this condition but in all of this I have always tried to remain positive and hopeful. My husband has been so very supportive in every aspect. Working with a naturopath has not been a cheap exercise but we both recognise the advantages over surgery for my health.
Perhaps in the future I will need more surgery but at the moment I feel that working with the naturopath has given me control over Endo. Managing my diet and exercise means I feel the healthiest I have ever felt. When I look at my two healthy, beautiful girls, I know that Endo has not won. My husband and I are both keen to make sure our girls are educated about Endo should they face a similar situation to me. EndoActive will most definitely help with that.
Thank you so much EndoActive for your video Shared Perspectives. It’s a great resource and one that I will keep handy for ongoing reference. I have always been open with people about my Endo, especially when the topic of IVF comes up. The work you are continuing to do has definitely helped raise awareness of Endo and means it’s no longer relegated to being just a ‘women’s issue’. Please know you have the support of so many women, who until now have not had a voice.
I guess I wanted to say to other women with Endo: please be aware that it may have issues for your fertility but it doesn’t necessarily mean you won’t be able to have a family. My two beautiful girls are testament to that.
