Words can not explain how important other “Endo Women” have become in my life. They were an incredible source of strength to me throughout my journey to having a hysterectomy and continue to be a source of support in my life.
“Endo Women” are a special lot. Most are directly affected by Endometriosis, some are affected by other forms of chronic pelvic pain like Adenomyosis and Fibroids. Regardless of the official medical diagnosis, what unites us is our experiences with enigmatic conditions, our experiences of pain and our common tenacity to do battle against the odds.
My first experience with Endo Women was when I was still living in Canada. A monthly support group ran at the local women’s hospital. I’ve never been one for “support groups”. It really wasn’t my cup of tea and I really didn’t know what to expect. But I was stuck in a terrible battle with gynaecologists trying to get them to take me seriously, and I needed all the help I could get.
I didn’t say much at the first meeting, but was made very welcome by the group leader and the others, and I spent two hours absolutely mesmerised by the experiences people shared, but more so by the amount of personal strength each and every one of those women demonstrated.
Endometriosis is a condition that has no boundaries. There were women there from every ethnic and cultural background, every class distinction and level of educational attainment, straight, lesbian and bi, all ages ranging from 17 to 50. Everyone one of them was doing battle with both their bodies and with a medical system that didn’t understand them. In a rare moment of belonging, I fit right in.
I learned so much from them. What could go wrong and what could go right. Who the doctors worth seeing were and who wasn’t worth your time. What treatments to stay away from. What to ask and say to a doctor and how to stand up for yourself. My inherent scepticism learned to give alternative and complementary medicine a chance. I came to appreciate that everyone’s experience is unique, has value and needs to be believed. My dark sense of humour came to appreciate that there were conversations Endo Women could have together that we could never have with anyone else.
There was a sense of camaraderie that was difficult to describe. There were times when we would laugh hysterically (sometimes in bad times, there is nothing else you can do), other times when we shared incredible joy (especially with those who had been experiencing infertility who were finally realising their dream of parenthood), sometimes we shared anger (usually at the medical system) and many times we shared tears. Tears of anger, frustration, sadness and loss. Lots of them.
I learned a lot about myself through these women. Most importantly, I learned that I was not on my own and that although everyone’s experience is unique, there were common threads that united us. I found a lot of personal strength in that. Their experiences also helped me to keep perspective on mine.
I’ve connected with other Endo women since coming to the UK. When there was a support group in my city, I spent the first meeting canvassing every woman there about who their consultant was and what they thought about them. That’s what finally led me to a consultant who actually believed how much pain I was in.
Face-to-face support groups have been a bit more limited over here, but I made good use of online forums for both Endo and hysterectomy. A bit more caution needs to be used in the online world as not everyone is necessarily as they would be in person, but these women were a fountain of information. I’ve met some amazing women through these channels, some of them have become very close friends.
Although there is technically a support group for IBD in my community, it hasn’t been active for quite some time (the perils of health related support groups, it depends on volunteers whose health is about as good as yours!), and my experience with online IBD support hasn’t been brilliant. Although there has been some useful information shared (you mean, I’m not the only person who had a bad reaction to Azathioprine?!), I have generally found people on IBD forums to be a bit negative. Endo Women, while even at their worst, seem to be able to pull together enough strength to have at least a bit of positivity, and failing that, are at least able to roll out the tea and sympathy.
In my darkest hours, Endo Women have walk me through my journey, and at times, almost carried me. I’ve been extremely privileged to know each and every one of them.
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