There’s much to be said about women’s intuition. The instinct a woman has can be so intense that nothing anyone says or does will change her beliefs or feelings. For some women, maybe over time, the intuition has been acquired, but for others, it’s been a gift she naturally has had her entire life. Because of this, we not only know better when something is off or doesn’t seem right, but the same goes for our health too. As our bodies send us a message that signals an inferior feeling to investigate that almost sixth sense, our instinct gains control, telling us to identify and resolve what that is. However, I wouldn’t be surprised if a woman’s intuition has been mistaken for craziness, paranoia, anxiety, hypochondria, or depression at some point in the eyes of others, including doctors.

As I have previously shared with KevinMD followers and readers before, I personally went through the circular door of doctors and specialists many years ago. I knew there was something wrong with me. I felt the array of symptoms I had; I could see some of them, and I knew what I was experiencing was both valid and real. My intuition told me something was definitely amiss. The experience I had through our health care system was a disappointment, to say the least. The journey of discovering what exactly was wrong was a monumental task, and it took steering into a new direction and type of care to get answers. Piece by piece, I’d uncover what was wrong and prove so much validity to what I had been experiencing for quite some time. There’s also a root cause to symptoms, which essentially those symptoms are your body communicating to you something isn’t right. Just like our limbs are connected to our spine, symptoms are connected to a root cause. In health care, those symptoms can often be labeled as a diagnosis of a disease.

Anyone following me knows I had been given a diagnosis of granulomatous mastitis (GM) in 2017. The exhaustive journey of so much left unexplained and poorly understood led me on a path to self-discovery, eventually, as the patient, getting the answers we needed of both cause and treatment. I wasn’t about to allow what had happened to me those years prior to repeat itself. This time I was also more generally educated about health and wellness, how the body and systems interconnect, how our environment affects our health, and how what we eat plays into what happens more than many realize. I knew I couldn’t have just magically contracted this disease. My intuition was so intense over this feeling I had that there had to be a cause. Just like Erin Brockovich fashion, I would find out what that was. This is what evolved into me writing my first successful book, Diagnosis Detective: Curing Granulomatous Mastitis. I never gave up, and for that, it paid off.

It’s obvious by now I’ve had some unfortunate health challenges, though, unfortunately, my journey didn’t stop at having GM. Just when it felt like I was moving forward and leaping beyond health obstacles, I’d face yet another diagnosis, and one I don’t talk about as much as I do GM. Though, this diagnosis was one that took me by surprise, and also took several years to get. The gynecologist I had for many years was going to be retiring. My mom’s best friend was his nurse, so there was always this added sense of trust in being a patient at that practice. I had been on birth control pills for most of my life. I talked it over with my former gynecologist (who I highly admired) and we agreed my body was in need of a break for a few very valid reasons. After he retired, I would then put several gynecologists through my own circular door as I struggled to find one I could have the same confidence in. The next two, and also last two office visits, I had with a new health care professional (this time an OB/GYN nurse practitioner), at a different network left me feeling like I felt years ago.

My menstrual cycles were no big deal for me throughout my life until that is, I stopped taking those pills in 2012. I didn’t start developing changes to my menstrual cycle until several years later, however. I had a feeling some symptoms I had started to experience weren’t normal, though she dismissed them as such. Though, maybe it was just because I wasn’t on birth control medication anymore. Maybe it was just a typical ovarian cyst; after all, I had them before. My intuition, though, was speaking to me again. When I expressed these new concerns, I was just offered birth control, yet my former gynecologist felt it wasn’t in my best interest anymore to be on birth control. The last two pap smears this nurse practitioner performed, while normal, were also not sufficient enough from a pathology perspective as her specimens were improper collections. I was just quickly losing confidence in this practitioner and felt like giving up. Though, that’s not my style. I never give up.

While scrolling through Facebook, I came across a post by a different health care network in my area marketing one of their gynecologists. I started to watch it, and what she was sharing in her video interview really resonated with me. She shared she encouraged her patients to eat healthy and live healthy lifestyles, there was footage of her discussing spending time with her nieces and making pizzelles; which my grandfather and I always made every year for Christmas, and it also appeared as if she took care of herself. In my opinion and experience, doctors who take care of themselves take better care of their patients. The more I continued to watch the video, the more I started pondering if seeing it was fate. I was in the market for a new gynecologist, and she was accepting new patients. I scheduled an appointment with her.

On my first visit with my new OB/GYN, she seemed very thorough, allowed me to feel validated by my concerns, and said not to worry as she would be getting a good collection in the Pap smear she would perform. She asked questions about my menstrual cycle and then indicated to me the symptoms I was describing weren’t normal. I’d later find out that, actually, it’s not quite common for many gynecologists to recognize pain, heavy flow, cramps, blood clots, and random pressure as abnormal menstrual cycles. Many women are left to believe their agonizing systems interfering with their everyday lives are normal. Guess what? They aren’t.

My new gynecologist actually thought I might have a uterine polyp or fibroid causing my symptoms, so she suggested we start with an ultrasound and go from there. An ovarian cyst was actually detected, and due to the presentation, as a precaution, she wanted to run a CA 125; a blood test for measuring the protein cancer antigen, which may be used as a tool to look for early signs of ovarian cancer. I thought this couldn’t be good as it did come back elevated. She was fairly confident this cyst was an endometria, however, and can cause elevated CA 125 levels. In reviewing my test results from years prior, an ovarian cyst that had been detected she felt was this same cyst, just bigger. So my lack of confidence in previous gynecologists was then validated.

The next step for me was being referred to a gynecologic oncologist as if surgery was decided upon, she felt that type of specialist would be best to perform the procedure. My next phase of this new journey was having an MRI performed, which did favor and supported the suspected endometria. This would be my second cancer scare, as prior to my GM diagnosis, my mammogram favored breast cancer. I was officially diagnosed with endometriosis.

I would also later find out it’s not quite common to be diagnosed with either condition without laparoscopic surgery or pathology. Though, an endometria is a type of cyst seen in the presence of endometriosis, so I was hoping to avoid any exploratory laparoscopic surgeries. I had to have breast surgery for GM, at the 6-month mark of my antibiotic treatment, and after everything I endured through suffering with that disease, the last thing I wanted to put my delicate body through was another invasive surgery and long recovery. Like the Diagnosis Detective, I was for finding the cause of my GM, I’d also adopt the same detective skills for searching for answers and solutions regarding my newest diagnosis of endometriosis. I also joined a few support groups on social media to learn about the experiences of other women. No one knows or understands a disease better than someone actually living it themselves.

I also started doing significant research, just like I did with GM. After all, had I not done so, my outcome would have been terribly different. After reading about how so many women have multiple surgeries for endometriosis, I thought there was no way I wanted to put my body through that, and there has to be a better way of approaching the condition. To me, it seems like we have to be missing something if that many ongoing surgeries are taking place without resolution or even women reporting feeling worse than they did prior to having surgery. It’s understood there’s no cure for the disease, nor is it understood of the exact cause. There are, however, many speculations, theories, beliefs, and possibilities.

A very common theory of an underlying cause of endometriosis is a genetic component. Our genes can influence our health; however, are they truly our destiny? Look at the gene HLA-B27 and the association with a bacteria known as Klebsiella pneumoniae. So, in that instance, just because someone has that gene doesn’t mean they will develop ankylosing spondylitis. Perhaps the genetic expression of bacteria is what is causing more cases of that disease for those who have the gene. There’s a great podcast, A Functional Medicine Approach To The Root Causes Of Endometriosis, with Dr. Cindy Geyer and The Doctor’s Farmacy with Mark Hyman, MD. This podcast discusses comprehensive variables of what can be causing or influencing endometriosis. There’s discussion on how environmental and lifestyle factors, as examples, can be leading contributors to the condition and, coincidentally, are also known causes of genetic expressions. The podcast also discusses bacteria and estrogen dominance as associations with the condition, which are also topics in medical journals. With bacteria as an association, it could also make one wonder if those women with Lyme disease, perhaps the bacteria known for causing Lyme disease, Borrelia burgdorferi, has led to the potential involvement of endometriosis, where the co-existence of Lyme disease has been reported in cases of endometriosis.

There’s much to unravel when it comes to endometriosis, especially with all of the clinical and published information unveiled. My own functional medicine practitioner has seen a correlation between endocrine disruptors and xenoestrogens as underlying contributing factors to his patients with endometriosis. However, even in that correlation, it goes much deeper as to what is then causing those to both be present and problematic. Just as what I wanted to see changed in our health care system with regard to GM, I’d also like to see it adapted to endometriosis. I think we need to be trying to identify, exclude, and treat any potential underlying influences on the disease. Let’s pretend a woman with endometriosis has undiagnosed Escherichia coli, for example, as discussed in the publication. Maybe that bacterium is fueling the fire or led to endometriosis. If that theory is right, how would surgery for endometriosis be effective or a long-term solution for that woman? Wouldn’t a solution be attempting to treat the bacteria present?

I’ve taken a natural approach to treating and minimizing my diagnosis of endometriosis. I do adequate varied therapies, adapted lifestyle changes, and am consciously aware of my environment in hopes of positioning my body to better handle the cards it has been dealt with. With endometriosis being a chronic inflammatory disease, I do what I can to minimize inflammation in my body too. Perhaps I have had a genetic predisposition to the disease since both my mom and grandmother struggled with similar female-related issues in their time, though I strongly believe my genes don’t have to be my conclusive destiny either.

My last follow-up has resulted in my bi-annual monitored endometria shrinking from 4.2 to 1.8 cm. Sure, some may argue she has stage 4 endometriosis and should have surgery, but then again, I’m also proving that what I’m doing is working. I’m living proof when we do the right things, then the right things can happen. When we can begin to unravel the potential root causes, then we have a chance to unveil the healing process the body is capable of doing. Just like when we identified bacteria as the cause of my GM, no surgery alone in the world without proper treatment would have completely healed me, as even a mastectomy still would have left me with risks of needing to treat the underlying cause. Hopefully, in years to come, more will evolve in approaching, testing, and treating endometriosis. I wish our health care system would take a more comprehensive approach to the disease, like running appropriate testing to look for any and all underlying causes, especially before initiating surgeries. It even dumbfounds me how many health care professionals aren’t even testing the hormones of women with endometriosis when it is understood as being an estrogen-dominant disease. How can they consider prescribing birth control without doing that first? I often shake my head at this. If a car has an oil leak, are we just going to keep putting oil in the tank, or are we going to look for why it is leaking? One is a band-aid approach, the other a root cause. A plant has roots. Are we going to just water it or take care of the soil they grow in? Endometriosis has roots too.

Tami Burdick is a patient advocate and author of Diagnosis Detective: Curing Granulomatous Mastitis.