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A special Thank You to Ana Maria at Endo Culture for taking the time to let me interview her. She really poured her heart and soul out into these questions, and I really appreciate her for being so vulnerable. The Endo community is full of strong women, and Ana Maria is no exception!
Tell us about Endo Culture!
Endo culture is a place for women that are suffering from endo where they can find tools, information, and tips on how to thrive with this chronic illness. Endo is incurable and the pain interferes with our daily “way of life’, but there are ways to manage it and I wanted to create a place where anyone can find those tools for a happier and healthier lifestyle.
Endo Culture came from my desire to make endometriosis go VIRAL. Endometriosis needs to be embedded in our culture so that everyone knows what the symptoms are, so that the pain that is behind every woman suffering from it can be understood, so that better work laws are drafted for women like us, and so that we get better treatment at any medical facility especially when we are young and have better chances of protecting our mental health and fertility. I want women to not feel alone and feel part of a community that supports them and advocates for them.
For those who don’t know what Endometriosis is, what is one thing you want them to know about it?
I want them to know that endometriosis doesn’t have specific symptoms and it is why it is so complex to treat. We are all different and we all experience different types of pains depending of where it is growing and it’s stages. People must understand that endometriosis causes an imbalance in the entire body and very often it includes our mental health as well. Finally, I would like for them to know that we are not hypochondriacs and that our pain is real.
How old were you when you began having symptoms of Endo?
This is a tricky question for me, I first got my period when I was 13 and immediately, I started having symptoms of endo. I remember since the first time curling in the bathtub crying because of the pain and not really understanding why. I remember telling my mother after coming out of the bathtub that I wanted to be a boy if that entailed me not having periods. The first time that my period came it marked my life with a before and an after, and it was the beginning of a life with restriction and a very painful one.
Ironically, I still don’t think 13 was the first time I had symptoms. I sit now and reflect on the countless small symptoms that I suffered earlier in my life. I remember never being able to drink coffee in the mornings as all the good Colombian girls do because it used to send me straight to the bathroom. Heck, I still can’t have any coffee. I remember countless emergency visits in the hospital because of sudden sharp pain in my lower part of my belly. I remember the doctors almost removing my appendix once because they could not decipher why I was having so much pain. I remember having my entire family (including grandparents, aunts, uncles, and cousins) waiting in a small-town hospital waiting room on a family trip because I was constipated, and it was my second week and I had not been able to go to the bathroom. It was one of the most embarrassing moments of my life, I ruined the family vacation or at least that day because they spent the entire day in the waiting room as I was being “cleaned out with a tube”. It is crazy how many symptoms I had before my period, but I thought of them as random events until I started informing myself more about endo.
How soon after you began having symptoms where you diagnosed with Endo?
It took 17 years to be diagnosed. I have a unique life experience as I have lived for almost ten years in three different countries. This allowed me to understand and navigate the medical systems in all of them. In Colombia, USA, and now Canada the health system is not very different. You will think that because we live in developed countries that we would get better treatment, but the reality is that I was dismissed by all just the same. I have been to the gynecologist since I was 15 when my mom finally decided to take me and since my first visit, I was vocal about my pain but they were more concerned of prescribing birth control than listening to what they believed was normal and that was going to pass. I had countless ultrasounds and it wasn’t until I became borderline anemic and started to have rectal bleeding last year that they finally paid attention to my pain because it was finally manifesting itself with tangible signs.
What’s one positive thing about having Endo?
One positive thing about endo is that I found an amazing community of women that are brave and are fighting together. Just knowing that by sharing my vulnerability I am finding the courage that enables me to help other women and to me, it is the best feeling and truly fulfilling.
Taking care of yourself is extremely important when you’re fighting endo, so what’s your favorite way to practice self-care?
Having a routine, making it my priority and following it. My holistic medicine, vitamins, supplements, exercise and eating healthy changed my life. I still have a long way to go with this disease, but my routine is my fighting armor against it.
Do you have any home remedies for managing a flare up?
One of the home remedies that I make all the time is the ginger, turmeric, lemon tea which I make from scratch with organic ingredients. You can find it in my blog and it truly helps on those days that I am bloated and not feeling my best. If I am in a lot of pain, I drink it hot but when is hot out and I still want to be proactive and prevent inflammation I drink it cold.
If you have a supportive partner, what does he/she do to help you on tough days?
When I get a tough day, he helps me in all aspects really. He gives me emotional support by telling me kind words, by showing his love, and he allows me to rest and take care of my body without stressing about anything else. When I have really tough days I don’t get out of bed, and he is there without judgment and I think that is very important to me because it doesn’t give me unnecessary stress of feeling that I have to do more than just taking care of myself.
What is something encouraging you want to tell your fellow Endo Sisters?
That we are all in this together and we don’t need to suffer in silence or alone. Endometriosis can’t be a silent illness if we all raise our voices together. I want to tell them that we are stronger, that we believe and together joining forces we will find a treatment that can improve our quality of life. Also, that I believe their pain, I understand it, and that all of it is REAL!
Any final thoughts you want to share with Pretty Gutsy readers?
I am a firm believer that information is power, and we need to be informed about all thing’s endometriosis. Since my diagnosis, I drastically reduced my symptoms and it is all because I researched and have been active in seeking different experts that could help me. I want to give women that do not have the time or money to go to experts, the information required to live a healthier life with endo. Since the research is limited, we need to unite and be our own health advocates for the best treatments and possibly one day a cure. The more we let the world know about endometriosis, the more attention it will get, and the more resources will be allocated to its research. Endo Culture is there to be part of a women’s movement to destigmatize endometriosis, to allow more exposure, and to unite us all.