At 27 years old, Melissa received her Endometriosis diagnosis. As a nurse, Endometriosis was briefly covered in her study curriculum, but she was still shocked and had so much to learn. Two years later, she is thriving with an educational blog about the disease and shares her story with us today:
“I think you have endometriosis.” These words came from an initial visit with my new Ob-Gyn after seeking out some help with conceiving.
At that point my husband and I had been trying to conceive for over a year and had no luck. Something inside me always knew I would have trouble becoming a mom, but the reality of it had finally hit and I knew we needed to see someone about it . . . but I did not expect this.
Endometriosis. I had heard the word before. Mainly on commercials. There is the chance that it was reviewed during my Women’s Health course in Nursing School. But if it was, the topic was brief and I don’t remember it; proving that there is not enough emphasis on endometriosis education in healthcare programs. Going in for infertility issues, but coming out with education of endometriosis was mind blowing, to say the least. Even as my doctor was asking all of the questions about my HEAVY periods, mood swings, chronic pelvic pain, etc, I still didn’t think any of it was abnormal. Like so many other women, I was taught by family and healthcare professionals that my period pain was normal.
Of course, after that visit, I went home and started researching. I was met with disbelief. Fifteen years had gone by since my very first symptom (severely painful periods), and I was just now learning about this? How was it possible that I was a nurse who couldn’t even see what I might have? I went on to find out that endometriosis is not well understood by the general population and that only few specialists actually know how to surgically remove it. I felt so thankful that the first doctor I saw was a specialist. How incredible that I was lucky enough to only visit one doctor and have an answer, while so many women go through several doctors before finding an answer.
So, I went through with the surgical treatment plan my doctor talked to me about and scheduled surgery for November 8, 2017. After that, I stopped doing research. There was no need, I had my answer and my doctor was going to fix my pain and help my infertility problem. Right? I was poorly mistaken.
Although the surgery did help confirm that I have endometriosis, it made my symptoms almost 10 times worse! Over the course of 2018, I went from being able to hold a full-time job with the usual painful period symptoms that I just pushed through during my cycle, to not being able to function multiple times throughout the month. I had to go part-time and called in frequently. I almost lost my job. My pain was no longer “just” during my period and it was no longer “just” mood swings, painful cramping, and occasional dizziness. My pain was now affecting every organ system in my body.
So, being the researcher that I am, I started looking for answers (because my doctor wasn’t really giving them to me). Low and behold, I found out that my surgeon was not a true endometriosis specialist. My surgery was not the gold standard in treatment. And my surgery was likely the cause of my downward spiral in health status. First off, I was mad at myself for not doing more research from the beginning. I was mad at myself for believing my doctor, something that I never thought that I would have to question. I mean, don’t get me wrong, I have been questioning the orders of doctors since day one as a nurse. It’s literally my job to critically think and question a doctor when they give me an order that might harm the patient . . . even if the doctor is an arrogant butt. So why didn’t I do that for myself? Was it because they had the word specialist behind their title? Honestly, I am not sure, but since the day I realized my situation was the result of misinformation, I made it my mission to share my story and help others advocate for themselves.
Today, I am sitting at home recovering from my second, and hopefully final surgery. I had laparoscopic excision with a doctor that is listed on Nancy’s Nook Facebook Education Page. But even so, I still vetted him myself with every question in the book. I fought my insurance to cover it with out-of-network benefits (at the minimum). And I won. Basically, I did my research and stood up for myself and the best possible care. Today, I am 4 weeks post-op, exactly. I am in pain, but excision recovery is long and hard. However, I can honestly tell that my chronic symptoms have been addressed. Of course, only time will tell, but I have faith in my recovery and the surgical skills of my expert excision specialist.
WORDS OF ADVICE:
My best advice to those of you on your journey to pain relief and symptom control (since there is no cure), is to do your research! Stand up for yourself. Don’t let a doctor diminish your symptoms or make you believe that it is all in your head. And be ready to fight your insurance when you do finally get to your excision specialist. The journey is hard, but I promise you, it is worth it. Because at the end of the day, you can go to sleep knowing that you did everything you could to get the best possible care available.
The Last Word:
For those endo warriors who do not have access to the excision surgery, do not lose hope. There is still so much you can do to help your symptoms. Western Medicine is not the only answer to endometriosis. In fact, most of the relief I felt before surgery, was from dietary and lifestyle changes. Pelvic floor physical therapy is great start as well. At the end of the day, education and research are still key!
I want to send a special Thank You out to Melissa for being brave enough to share her personal story. You and I had surgery right around the same time this year and I hope your recovery continues to go smoothly and that you remain symptom-free. Thank you for all that you do for the Endometriosis community. And for sharing your story and some incredible words of wisdom!!!
And if YOU would like to share your story, you can do so. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.