My Story: Becoming an Endometriosis Advocate

By Saniya Ghanoui —

HG explains how her first experience with endometriosis shaped her life. The stigma surrounding endometriosis pushed HG to self-advocate and inform others about this illness.


OBOS Today: So, Heather, I know that you wanted to speak about endometriosis; can you go into a little more detail of why you wanted to share your story today? 

HG: Absolutely, so you know endometriosis, as Dr. Karen Jones has said previously said, it’s really been normalized, to the point of invisibility in terms of being a quote-unquote menstrual disorder. And actuality, it’s so much more than that, it really is a systemic disease that really just encompasses and negatively impacts so many aspects of a person’s life beyond painful periods. You know, and I think it’s really, really important that we confront the stigma about quote-unquote painful periods head on and really start being much more inclusive in the endometriosis experience. You know you don’t need a uterus to suffer from endometriosis. Not everyone with endometriosis identifies as female, you can have the disease after hysterectomy, you can have the disease if you don’t menstruate. You know there’s so many different aspects of it, above and beyond just menstruation and just beyond painful periods that we really need to talk about, and we need to talk about it as loudly at as often and in as many spaces as we can. 

OBOS Today: That’s really great. When did you first learn about endometriosis? 

HG: So, my story is, you know, not, not, much different than anybody else’s probably. Even really before first period I had symptoms, which I was later able to identify as probably endometriosis, and I’m talking young, I’m talking 11, 12, 13 years old. And after, you know, after my first period, it was like, “Oh, I guess, this is it, this is how it’s supposed to be.” So, I went through all of adolescence, and my teenage years really struggling; missing school, missing out on social functions, time in a life that was really supposed to be, you know, formative in terms of social relationships, academia things of that nature, but it wasn’t until my very, very late teens, 19, when I was actually diagnosed. And I was very lucky, and I say that, you know not tongue in cheek, I was lucky because one of the very first few physicians that I saw took me seriously, whereas most of the endometriosis community goes through an average of five physicians and about you know six to 12 years delay in diagnosis.

So, I had the surgery at around 19 and he told me, “You know, yeah, you’ve got this disease, here’s some pills, we’ll see ya.” And I thought, “Oh, there’s got to be more to it than this,” and that was really where the change occurred for me, because I, you know; they said, “Well, why did you become an advocate, why do you work in endometriosis?” I really didn’t have a choice. If I wanted answers for myself, I had to get them. And, in doing so, gradually, you know it evolves over time into really using that experience of my own, to try and help others so, I mean, I don’t want to say endometriosis took over my life, but in a way, it really did, because it, it wasn’t just something I struggled with or suffered from, it actually became my profession. And it’s been That way, you know all these decades later and we learned lessons along the way, that we want to look back and share to those behind us, you know, they say, well, we don’t want anybody to suffer in silence, they’re not silent, they’re screaming to be heard so. That is what I do, I try to, you know, reach a hand back and help inform the journeys of those who come behind us.