When I was told I had fibroids my doctor gave me a printout of information with all the various treatment options. I read it and decided which options I thought I was interested in and which I wasn’t (interested in myomectomy, UFE, not interested in ablation, hysterectomy). When I saw my GYN, she recommended a hysterectomy. She was happy to refer me to specialists to assess me for other options, but that was what she thought was best. I came home and succumbed to Dr Google, looking for information about hysterectomy. I found good information and bad information; the websites I found were either very medical and objective or pushing an agenda and downright scary, and the best information came from personal experiences relayed in groups and forums. In the end I realised my GYN had been right and a hysterectomy was the right choice for me (you can read more about my experience here).
After my surgery I stayed in some of the fibroid communities and I noticed how many women came to those groups with very little awareness of what options were available to them, and some who didn’t have much of an understanding of how their body functioned – important if you’re trying to make a decision on surgery! Many doctors weren’t offering women choices, or weren’t explaining what the different choices meant. There were websites and individuals trying to get women to part with their cash for snake oil miracle cures and seemingly no regulation to prevent ‘businesses’ from scamming women who were afraid to have surgery.
But what made me downright angry were the websites pushing an anti-hysterectomy agenda, filled with scare stories and misinformation. Yes, there may be other options than hysterectomy, and yes hysterectomy is not the right choice for every woman, but I think every woman deserves genuine, factual information to reach the choice that is right for them. And I couldn’t find a website that was doing that in a friendly, supportive way (the closest was hystersisters.com which I would recommend). I mulled over the idea of creating that website myself for a while but put the idea to one side. However I’d keep seeing women worrying about their surgery, or scared to choose a hysterectomy because of something they’d read online, and I realised I had to make this site. I had to put my thoughts online somewhere for people to find, I had to show the positive side, and I had to help support women who were considering hysterectomy.
There is a certain anti-hysterectomy website out there (I’m not going to name it) that features survey results on it’s site which apparently show how awful hysterectomies are for women. I’ve made my way through post-graduate education (I have an MPhil) and when I looked at their survey quickly saw it was very flawed; it collects data to present a particular view. I decided I wanted to create a survey of my own, asking thorough questions, and providing relevant, applicable results with some scientific analysis. That is still a work in progress but I hope to have it up and running and producing results soon. (If you’re someone who has had a hysterectomy and would like to take the survey please drop me an email at firstname.lastname@example.org and I’ll let you know when it’s ready to go).
I hope you find this website a useful resource, and I hope you can feel confident in whatever treatment you choose 🙂
As women we should empower ourselves with knowledge so we can make the choice that’s right for us!