My Endo Journey

Hello there,

I'm Maria, an endo/adeno survivor, women's health advocate and journalist. I'm glad you stumbled on my page because if you are struggling with the horrors of endometriosis I hope to offer some insight and hope for you.

I’m happy to see that the global conversation is finally shifting towards women’s health and endometriosis is a huge topic circulating across social media platforms.

But first, what is endometriosis?

Endometriosis is an inflammatory disease that impacts 1 in 10 women worldwide. According to the American Medical Association it can take anywhere from four to ten years to get a proper diagnosis, and in some cases even longer.

The disease itself causes similar tissue to the uterine lining to grow outside the uterus. This tissue forms lesions throughout the abdominal cavity and can grow on major organs such as the bowl, bladder, diaphragm, lungs and in some extremely rare cases, the brain.

There is a common misconception that endo is just a “bad period.” Even if that were true, it would be a terrible thing to live with. Unfortunately, those with endometriosis can experience pain anytime during their menstrual cycle, along with a myriad of other symptoms like chronic fatigue, muscle spasms, pain with sex, urination, or bowel movements. It can also cause anxiety, depression, and in some cases, infertility. 

Personally, it took me about seven years to get a diagnosis after doctors found a massive fibroid on my uterus and a large cyst on one of my ovaries. The doctor suspected endometriosis, but could only confirm it with laparoscopic surgery.

My first surgery was successful in removing the fibroid and cyst, and some endometriosis lesions. I was told I still had endo on some of my organs, but my surgeon didn’t feel comfortable removing it. Of course, knowing very little about endometriosis 12 years ago, I had no idea that would become an even bigger problem down the line.

I had relief for about four to five years after my first surgery, but my symptoms returned. The painful periods, the chronic fatigue, the frequent urination...ect.

My second surgery was around six years later. This surgeon was reportedly an endo specialist and removed my appendix (which was about to burst because endo was strangling it) and removed as much endo as possible. Once again, the endo seen on my organs was left where it was and I was closed back up.

Excision vs. ablation

I must mention that the two surgeries were very different. My first surgery was excision, where the doctor cut margins around the endo lesions, much like a cancer doctor would with a tumor. This type of surgery gives the doctor more confidence they have removed the entire lesion.

My second surgery was ablation which is commonly used by OBGYN’s to treat endo. Ablation is when they burn the endo away, but as an endo expert recently told me...there is no guarantee they burned enough, or didn’t burn too much and the burning can actually cause more scaring inside.

Needless to say, I started to see symptoms return in a year or less following my ablasion surgery. I tried everything from birth controls, to acupuncture, yoga, supplements and more. Luckily my acupuncturist guided me to a true endo specialist in Boston because SHE was also an endo survivor. (Endo girlies unite).

Sadly, my third surgery required a hysterectomy at the age of 38 because I learned I also had adenomyosis, which meant endo was inside my uterus. With adenomyosis there is no way to remove the lesions without removing the uterus itself.

Dr. Luke Chatburn (My savior)

Dr. Chatburn was a God send because he removed the endo that was covering my bowel and bladder. He also removed endo he found inside both of my hips and said he removed EVERY endo lesion in my abdominal cavity.

Now there are currently about 100 endo specialists in the U.S., per my research. However, when I asked my surgeon, he said that number was closer to 50, maybe less. Of course with a shortage of endo specialists, they are in high demand and with that comes long wait times. I was on a six month waiting list for my initial appointment and then waited another year for my surgery.

For those of you who are struggling with endometriosis or suspect you might be, this website/podcast, is intended to help answer questions, raise awareness, and bring some peace to those who are suffering.

I will mention that a great resource for all things endo is the Endometriosis Foundation of America. I highly recommend visiting their site if you have any questions. I have personally spoken with a representative of the endo foundation and I finally felt like someone understood the heartbreaking journey I've been on.

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