Life w/ Endometriosis: Always Fight for Your Health

By: Clarke Jones 

On Nov 27th, 2019, I had excision surgery for stage 4 endometriosis. A foot of my colon, my left ovary & the left fallopian tube all had to be removed due to Endometriosis. I tell this story as a reminder for people to fight for their health. To fight until you find doctors who will fight for you & with you.

Over time, my periods had gotten so bad I wasn't able to walk to get out of bed for 2-3 days, which meant I wasn't going to work during those times. Once a month, my life paused due to my period. I began bleeding during bowel movements which were also very painful. I had dropped down from 105-110 to 90 pounds. I was throwing up during periods and my bowels/stomach affected me throughout the month. I barely wanted to eat.

On the search for a diagnosis, I saw 5 doctors. My main OBGYN told me birth control was the answer, so I went to another, who ultimately told me the same thing. Since surgery was the only way to confirm Endo & even then, birth control would be my only hope to ease it. So I went to another doctor. My general Dr in Raleigh thought that with all my symptoms, Crohn's Disease was it. So for a while, I was taking meds for that, which helped a little bit but that didn't seem like the correct diagnosis either.
I will say, during this time, I did a lot of research & Crohn's has very similar symptoms as Endo. Many people are misdiagnosed. For most women, it takes years to be properly diagnosed. Like 10-15 years due to the lack of knowledge of this disease.

So I went to another general doctor in Greenville, and after hearing my symptoms, she sent me to a GI doctor. When I spoke to the GI Dr, she immediately said "endometriosis of the bowels." She knew exactly what it was. She set up a colonoscopy to confirm & she was right! The colonoscopy showed 2 endo masses in my colon. They were so big, the Drs were concerned if I was having full bowel movements.
This next part of the story is what always gets me upset. So after confirming the Endo, the GI dr calls my original OBGYN, the woman told me birth control was the answer. She calls me the next day seemingly shocked at how big my case had gotten, after talking to the GI dr. I believe she said something along the lines of "You're the talk of the town." She then proceeds to ask me "had you been complaining to me about these symptoms the whole time?" WHAT?!?! I was furious!

I had seen this woman so many times over the past year or 2. My symptoms started as a small discomfort in my bowels & had become full bleeding & in pain while I pooped. I could no longer walk during my period, I would wake up & throw up during my period. I had lost 10-15 pounds over this amount of time as well & she NEVER seemed concerned. Not once. Not once did she order a test or ultrasound of any sort.
The crazier thing is, the GI dr asked me if my GYN had done any tests. I told her, no. She went down a list of tests my GYN could have done. I was shocked to hear that. But NOW, now that it was confirmed that all of these symptoms were really caused by a legit, now stage 4 issue, to where I HAVE to have surgery to save my organs, NOW she is concerned. I did go in to finally have an ultrasound tho, which showed Endo on my left ovary. I just think about how much sooner that ultrasound could have been done if she would have had just an ounce of concern for my case. At that point, my mother called Duke, who had an endometriosis center. She was determined to get me over there. After calling around, she finally got in touch with the assistant to their head GI surgeon & my case was transferred.

Because the Endo was in my colon & ovary, I would have 2 surgeons. The GI & an OBGYN surgeon.
I visited both once before the surgery to talk about my case & we were all locked in.
I was diagnosed on Oct 19th with a colonoscopy & I had surgery on Nov 27th. Duke really pushed & rushed to get me in. In Greenville, Ill just say they dragged their feet. You never really know how bad Endo is until they're inside. Everything doesn't come up on an ultrasound. The Endo was worst than they thought. My colon was cemented to my left ovary. So that section of my colon & that ovary & fallopian tube had to come out. My bowels were reconstructed & I was given an ileostomy bag for 4 months to allow my colon to heal.
The bag was an "in the moment" decision, so I was surprised to wake up with it. He told me it could be a possibility but I prayed I wouldn't be needed. In the end, I'm happy I had it. I couldn't have imagined trying to use my bowels after they were reconstructed. I had the bag removed on March 6, 2020. A Friday. One of the happiest days of my life.

I am SO thankful for the surgeons at Duke, who rushed to get me in for surgery even though it was Thanksgiving. For my mother who FOUGHT to get my case transferred to Duke. My mother & my boyfriend who emptied my bag when I couldn't mentally accept that I even had an ostomy bag. My father who was there every step of the way. My friends who stuck by me & supported me the whole way thru.
You can make it thru ANYTHING! You are all stronger than you realize! I promise 💕 And ladies, get you a man who will empty your bag! LMAO! Who will sleep in an uncomfortable hospital bed with you for 3 nights straight? Who will love you LITERALLY no matter what! On some real, "thru sickness & thru health" type stuff.
Times like these show who is really in your corner & you will be more than grateful for those people.

ALWAYS FIGHT FOR YOUR HEALTH!