We continue today with another special “endo interview”, having as a guest an endometriosis patient, but also an endometriosis advocate, a woman who tries every day to educate people around the world in acknowledging endometriosis importance.
I met Lia Borio only online, through her Facebook Group, Endo Sisters Page, but also through her Instagram page, a place where you can find a lot of delicious, healthy recipes, perfect for the endometriosis diet.
About her journey with endometriosis, her projects, her dreams, but also her thoughts for the other “endometriosis sisters”, in the next lines, in a special interview Lia has given to me.
Marina Rasnoveanu: Tell me more about your journey with endometriosis.
Lia Borio: Well, unlike many others I was never seeking a diagnosis. I was misdiagnosed for years with pre cervical cancer and having a nine colposcopies from the age of 14 to 22. After not conceiving fully in my early 20s I quit going to Gyno‘s for over 15 years. At age 37 I started bleeding for 45 days straight. I went to Gyno & they wanted to do a uterine biopsy talking about uterine cancer, but was unable to take biopsy due to my cervix was fused shut. They went in for laparoscopic surgery and thats when endometriosis was discovered. I had some complications with my OBGYN surgery and with the “burning“ all the Endo out. I was in an incredible pain.
I told my OBGYN something was terribly wrong and her response was, “You are going to be in pain, you have endometriosis. Thank your mother.“ Then she tried to push Orilissa on me. Needless to say that was the last time I ever saw or spoke to her. I contacted a specialist and received expert excision and hysterectomy due to severe Adenomyosis keeping my ovaries. I have refused all synthetic hormone treatments due to poor side effects and it doesn’t nothing to treat actual endometriosis. I have managed symptoms with lifestyle change and anti-inflammatory diet. I am currently being monitored for endometrioma on left ovary and “spot” on right ovary with serial imaging with 3D endometriosis ultrasound every 6 weeks at Cleveland Clinic, United States of America.
Marina Rasnoveanu: What made you start and administrate an Endometriosis Facebook Group and how it evolve during the time, how do you perceive it now?
Lia Borio: I started my private little support group just to get some like minded, supportive, positive women that are going through the same struggles. It’s invite only. I started it after my first surgery waiting for my specialist appointment. This group is something I don’t like to promote as I like keeping it small and intimate. I have made so many amazing connections in this group with women I consider my true friends. That group is my life line for so many things.
Marina Rasnoveanu: How the things and the perception on endometriosis have changed from when you first knew about endometriosis and the present day?
Lia Borio: As I stated above, I was never seeking a diagnosis. It was accidentally discovered. I was always told our family had “bad periods” and that it was normal to be in severe pain and not be able to do anything one week out of the month. I was brought up to learn to just deal with the pain and horrendous ridiculous bleeding. Now that I have been diagnosed and realize how I was entrusted to an untrained OBGYN to push and treat me with awful drugs that do nothing to treat Endo, but serve as a bandaid. I am infuriated at the misinformation and plain lack of education of these doctors performing surgery & lack of skilled doctors available to us.
Marina Rasnoveanu: Tell me more about your project "Endovidualeats Calendar".
Lia Borio: I used meals off of my Instagram account Endovidualeats. This is an account I started and I post daily meals with all ingredients following my own personal Endo/anti-inflammatory diet to help inspire others. I made a recipe calendar full of gluten & dairy free meals. The calendar is a way for me to participate in Fundraising this year with donation being made to extrapelvicnotrare.org I have a close relationship with founder Wendy Bingham and I agree with her message and mantra. She receives no funding from big Pharma and I was hoping to help raise the organization some funds this year and help her spread her message; “One purpose of Extrapelvic Not Rare (501 c3) is to prompt redefinition of endometriosis as a disease with body-wide lesion potential and capacity to disrupt systemic homeostasis. Myths continue to perpetuate that disease outside of the reproductive organs, support structures and local area is ‘rare’, the reality is, extrapelvic endometriosis is not rare; its un-, mis- and delayed in diagnosis”
Marina Rasnoveanu: I know you are preparing also a website, can you tell us more about it?
Lia Borio: I just recently started website at www.endovidualeats.com it has both US and international sales link for calendar available with a small bio on me and a direct link to my IG page.
Marina Rasnoveanu: How is endometriosis seen, diagnosed and treated in your country? Are there a lot of doctors specialized in endometriosis?
Lia Borio: In my country endometriosis is seen as a gynecological issue, not a whole body disease. It is poorly diagnosed and delayed. Medication is often put before any patient care & well-being. It baffles me how we can prescribe meds with possible severe life altering complications to women with “suspected endometriosis“ Laparoscopic surgery is the only definitive way to diagnose and they have untrained Gyno’s performing them….some who don’t even know how to detect all forms, colors, and types of endometriosis lesions. There are trained specialists, but they are difficult for some to obtain whether it be for financial reasons, distance with travel, insurance, or just plain availability. If you are able to obtain a specialist there are multiple hoops to jump through. I do believe our country does have some of the best specialists available if you were able to connect with them.
Marina Rasnoveanu: What were your top 3 struggles when talking about endometriosis?
Lia Borio: Infertility, unable to fully conceive, and requiring a hysterectomy. None of these are my best subjects
Marina Rasnoveanu: What most valuable thing endometriosis have taught you? Do you think there is a "good side" for endometriosis too?
Lia Borio: The most valuable thing Endo has taught me is how quick something can change your entire path in life. My partner and I joke about PRENDO; things I did pre-Endo. Some examples are eating fast food, going out partying, and wearing tight clothing… all PRENDO. It has also taught me incredible resilience and strength that you are forced to have if you don’t just roll over and crumble. Do I think there’s a good side to Endo…? Sure. They amazing endoviduals I have met through the support groups, fundraising, and through my Instagram. If it wasn’t for the community I would not have met all of these awesome people.
Marina Rasnoveanu: Because you have an Instagram page focused on healthy diet for endometriosis, tell me more about your journey with healthy food and your endometriosis.
Lia Borio: I started following my own personal anti-inflammatory diet immediately after my last surgery. I noticed such a difference almost immediately with bloating and indigestion issues. I lost about 20 pounds due to decreasing inflammation. I just started posting pictures of my meals in my support group and a member suggested starting an Instagram. So I did. This April will be one year the account has been active with over 16.5K followers. It has really brought me something positive to channel energy through all of this. Not only has changing my diet become a lifestyle, but it has now become my hobby. Yes I am gluten free and dairy free, but also no refined sugar, no processed foods, no soy, no fried foods, no GMOS, and I cook with organic avocado oil only. There are no cheat days for me because nothing is worth the way I feel afterwards. I highly encourage you to change your diet to your own tailored needs to manage symptoms.
Marina Rasnoveanu: What would you want all doctors who treat endometriosis to know and what would you tell to all our "fellow sisters" out there who confront endometriosis?
Lia Borio: What I would like to let others know especially doctors that are treating us…is to continue to get updated information and research on this disease especially if you are allowed to perform surgery. I’m tired of knowing more than doctors. All of these self-proclaimed “Endo specialists“ are telling us to just get pregnant, telling us to have a hysterectomy. There is no cure. Why isn’t there continuing education courses that are mandatory? Endo is a whole body disease. It has been found on every organ in the body. It is time we stop making this a “taboo women’s condition” and start helping the millions of people suffering. To all my fellow Endo sufferers, please don’t give up, educate yourself, and advocate, advocate, advocate.
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