Today we’d like to introduce you to Lisa Howard.
Lisa, can you briefly walk us through your story – how you started and how you got to where you are today.
When I was 34 years old, I underwent a procedure to remove a dermoid cyst that could develop into cancer. At that time, my surgeon discovered it wasn’t a dermoid. Instead, I suffered from an invisible illness known as Endometriosis.
Endo-what-iosis? That’s what I said. An incurable disease that affects an estimated 1 in 10 women worldwide. Oftentimes, it can be incredibly painful, can lead to long and heavy periods, can make it difficult to conceive, and is difficult if not impossible to see on imaging scans such as ultrasounds, MRIs or CTs. Well, that made perfect sense to me. Ever since I was 13 years old, my periods have been incredibly painful. The women in my family, and the doctors I met, all encouraged me it was normal. That it was “all just a part of being a woman.” Well, it wasn’t! My pain had a name. And it was Endometriosis.
Armed with my diagnosis and very little information, I sought out others like me in the San Diego area. There had to be a support group, right? Wrong. There was nothing. So I started one! I began to do my own research about the illness and decided to share what I learned with the world.
What started as a blog has since morphed into so much more: I still write the blog and update entries as new studies are published, but we also have a private Facebook group of approximately 300 Southern California/San Diego women with Endometriosis, we host once-a-month support group meetings in person, we have a yearly Endometriosis Awareness & Support Walk (this year will be on March 28, 2020!), and we put on workshops about Endometriosis with the local medical community to spread awareness about the illness and potential treatments. Our little San Diego Endometriosis community will only forge ahead!
Those are my humble beginnings and I will never stop reaching out to support those who suffer from this disease. Since my 2014 diagnosis, I’ve had four surgeries to manage my Endometriosis and am currently planning a 5th. This disease is relentless. But one must maintain hope that it will get better. And the best part? I am not alone!
Overall, has it been relatively smooth? If not, what were some of the struggles along the way?
Creating the blog was a simple endeavor. Obtaining the fictitious business name as Bloomin’ Uterus was equally easy. What’s not easy?
The extent of planning that has to go into some of our Endo events, while dealing with the pain myself, is a large bump in the road. But, there are plenty of EndoSisters and their caregivers that offer up their free time to help. We truly are a family.
And there are times where I feel completely underqualified for such a task. I am not a doctor or medical professional. I’m just me: a 40-year-old woman with an illness and a drive to learn more. That self-deprecating talk gets cut right now. I have to remind myself that I am knowledgeable, I have personal experience, I acknowledge and accept the disease and what it brings, and I do my thorough research. But through learning and sharing and working with others, I AM qualified. I can do this. I will do this. And if you are on your own journey toward WHEREVER, remind yourself the same: you are absolutely worth of completing your task at hand. You’ve got this!
Please tell us more about your work.
By day? I am a paralegal working for the law offices of Estey & Bomberger. But by night? Blogger, researcher, and advocate! I am so flabbergasted at the resilience of the human mind and body. When given bad news, one can choose to mourn, sulk, or freak out. Or one can choose to learn, grow, and accept. Granted, I had my time of mourning. I did that. I cried. I lamented. But then I got up, got angry at the years of dismissive doctors and non-diagnosis, and turned that anger into fuel to DO SOMETHING.
I am most proud of, and still cannot believe, that our first Endometriosis Awareness Walk in 2015 had 20 people and our 2020 walk is slated to have 600! How is that even possible?!? I’ll tell you how: There’s a need for that sense of community and camaraderie among those who know exactly what you’re going through. And our annual walks involve friends and family as supporters to walk with us. We all stand together. And we will continue to do so.
I remember how hungry I was for support when I received my diagnosis, and how disappointed I felt when I couldn’t find one. My one and only goal now is to always be there for someone when they are looking for answers or support for their own Endometriosis diagnosis.
Do you recommend any apps, books or podcasts that have been helpful to you?
I do so love to nestle deep into the pages of a good book, but I don’t have a particular favorite. But one does come to mind that I read when I was in my 20s: “Don’t Sweat the Small Stuff and it’s all small stuff” by Richard Carlson. I cannot tell you how many times that book has switched my mental state and gotten me out of a potential downward spiral!
- Website: www.bloominuterus.com
- Email: firstname.lastname@example.org
- Facebook: https://www.facebook.com/groups/1039927769382266/
- Other: https://www.endofound.org (the Endometriosis Foundation of America makes great efforts toward research on the disease)
Colleen Smith, Richard T. Reyes, Exxes Hauffen