March is Endometriosis Awareness month!
Before we delve deeper into Endometriosis, know that I am not a doctor, nor do I claim to be. All the information in this post is either gathered from the web, my own experiences, or from people I know!
Many people do not know what Endometriosis truly is and how it affects women around the world. The Mayo Clinic describes it as this:
Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. – Mayo Clinic
Every month as you go through your cycle, this abnormal tissue that grows on surrounding organs goes through the same cycle and all the changes that normally happens such as sloughing off and bleeding which causes the significant abdominal pain.
What the Mayo Clinic does not describe is the unimaginable pain and significant health issues that may arise because of Endometriosis. Not only painful periods but depression, anxiety, suicidal thoughts for some, infertility issues, painful intercourse, bowel issues, and back pain just to name a few.
Endo (for short) is usually classified into four categories: Stage 1-Minimal, Stage 2-Mild, Stage 3-Moderate, and Stage 4-Severe (You can read more on what classifies each category here)!
Although one would assume that the severity of the disease would correlate with the level of pain one would experience, that is not always the case. People with Stage 1 Endo may experience more pain than a person diagnosed with Stage 4.
I want to share my story with you today on what I have experienced with Endometriosis in hopes that I can help others recognize the signs and symptoms. It’s crucial to advocate for your own health!
My story really begins in my high school years but I did not start addressing them until I was about 23 years old. I had always had pretty painful periods but they were always regular. I was never on birth control until I was diagnosed with Endometriosis and never really had any issues but the pain. My pain consisted of mid-cycle pain around the time of ovulation and pain right before my period.
In the fall and winter of 2013 I had several trips to the ER for severe abdominal pain. It was excruciating but I was always sent home and just diagnosed with a stomach bug. At first I always felt like no one truly believed the pain I was in was real. Then I started second guessing myself and wondering if I was really just being a ‘pansy’ since nothing was ever seriously wrong. I later on found out that was not the case after I had a natural child birth and had something to compare it too. It was horrible pain, pain that felt like it was never going to go away.
Like I mentioned earlier my periods where always heavy with lots of clotting, but since no one would believe me, I just assumed it was normal.
In late August of 2014, I was working in KC about 14 hours from where I was living in Houston. I did not feel well that day traveling up there from Wichita but decided to still go thinking it was just something I ate. Later on in the day I started to get unbearable cramps with a burning sensation throughout my abdomen. I also was having major bowel issues. I went back to the hotel room and tried to rest, but I couldn’t. The pain just would not let up. It felt like fire in my abdomen.
I eventually had my boss take me to the hospital where they determined it was a cyst that had ruptured and to go home and rest.
But the next morning, I still did not feel well so I did what anyone would do during pain and called my parents.
My dad drove 4 hours from Wichita to KC to bring me back to my original home (Wichita) until we could figure out what was wrong. I went and saw an OB that I knew and he admitted me to the hospital that day as the pain was still not under control.
I spent three days in the hospital doing countless tests and procedures. I ended up having a colonoscopy that didn’t show anything significant. My last day in the hospital I woke up and was taking a shower and noticed I had started my period. Oddly enough, my pain had went from like a 10 to like a 3. For some reason starting my period had brought me relief. My doctor found it strange that my pain was correlating with my period and agreed to preform an exploratory laparoscopy the next week.
For those of you that don’t know, an exploratory laparoscopy is a minimally invasive surgery that consists of three small incisions in the abdomen. This is the only sure-fire way to diagnose Endometriosis.
After being discharged, I drove back to Houston and the following week drove back to Wichita with my parents. I had exploratory surgery where he diagnosed me with Endometriosis. At this point it was not staged and only cauterized (burned off) which is not the most successful method of removal.
When I arrived back in Houston, I went to a doctor who specialized in fertility to help me decide what medication would be the best to help me keep my Endometriosis at bay. I ended up on a progesterone only pill that only seemed to help for a short time.
By January of 2014, I was in severe pain again. I ended up back in the ER with severe abdominal pain and was told I had another ovarian cyst rupture. After continual pains, I decided to seek out a well-known OB/Reproductive Endocrinologist in Houston to get a second opinion, Dr. Rakesh Mangal.
He is an extremely sought after Endometriosis specialist who you have to be accepted to see. Thankfully, I was because I was at my wits end with feeling horrible.
I was then scheduled for my second surgery in a 6 month period in February of 2015. This surgery was also a laparoscopy and instead of cauterizing the lesions he would instead excise any endometrioma he saw.
Excising is the best option for removal of Endometriosis as it is ‘cut out’ without affecting the organs themselves. It helps ensure that the Endo does not grow back and removes even the deepest of Endometriosis. While Endometriosis technically never goes away, most do find some relief with a combination of surgery, medication, and diet changes.
After surgery I learned that I had Stage 4 Endometriosis because of the amount of organs involved and how deep they were. The doctor had found Endo on both ovaries, both fallopian tubes, behind my uterus which was stuck to my colon and my left ovary, my bladder, my ureters, and deeply infiltrated into my colon. While he was in there he also flushed my fallopian tubes as they were blocked and preformed a PSN (Presacral Neurectomy). I had several adhesions that had to be cut and several large cysts that had to be removed as well. He removed 80% of the Endometriosis and was hopeful that I would get some relief.
His advice to me was to get pregnant as soon as I could, get on a birth control to help suppress the estrogen, and clean up my diet. He stated that there was a good chance that I may have to have IVF if we did not get pregnant soon. I would also most likely need a third surgery to remove part of my colon by a colorectal surgeon and to have a Urologist remove the Endo that was covering my ureters and bladder because they were such delicate organs he could not remove it himself.
Soon after I saw a doctor specializing in naturopathic healing who helped me clean my diet up by eliminating foods high in estrogen. I completely stopped eating dairy, gluten, soy, wheat, eggs, and corn. I also got on a different kind of birth control (I actually tried several before being happy with the Nuva Ring).
While it was a hard transition (I didn’t fully start the diet until September 2015), I had never felt better and my Endo pain subsided. I was able to maintain my diet and birth control until we got married in April of 2016.
I had stopped my birth control the month we were to be married as I knew we wanted to try and get pregnant as soon as possible. I was not prepared though to come back from our honeymoon pregnant! To say we were shocked was an understatement. Being told you may need IVF, you have it in the back of your mind that it will take forever! But God had other plans for us!
I do believe with all my heart that Dr. Mangal was our saving grace. If it was not for his precision in surgery and his recommendation of cutting out the estrogen contributors in my diet, I do not think we would have gotten pregnant as quickly as we did!
Every Endometriosis story is different just like we are all different. The common theme of Endometriosis unites us all though. I write my story today in hopes that I can save someone from the years of struggle and heartache. Finding the right physician and course of treatment is key. Being equipped with the proper knowledge is the key to fast and successful treatment!