My Endometriosis Story | Girl Talk Tuesday
I’ve been debating writing this post for a long time. I often talk about my battle with endometriosis, but I haven’t ever told my whole story. I was never sure if this was a blog post topic or if it was more of a YouTube video topic… Maybe it’s a bit of both? Either way, I think it’s time I tell my story since I just experienced yet another cyst just this past week. Also, because I’ve seen so many of you sweet girls comment that you’re living life with this nasty disease too. This post is to let you know, you are not alone!
A word of warning: I’m discussing my medical experience and giving details. If that’s not something you want to read about, keep it moving to another post.
Let’s back it up to a young and sprite Angela. I was a late bloomer and didn’t start my period until I was 15 years old. It was not long after that I began this monthly nightmarish cycle and the nasty cramps reared their ugly head. I would get cramps so gnarly I would be curled up in a ball on the floor sobbing. I remember one time they were so bad my mom almost took me to the ER. I have a fairly high pain tolerance, but these cramps would knock me off my feet.
It wasn’t long after I got my first period that I experienced my first ovarian cyst. I walked around bent over holding my right side for days before my mom forced me to go to the doctor. I was terrified at the thought of seeing a gynecologist. I was young, immature and incredibly freaked out at the thought of a doctor examining my private parts. My doctor quickly sent me on to the hospital for testing and that’s where the real nightmare began. I had no idea what I was in for and the experience scarred me for years. The nurse explained I needed an emergency ultrasound and in order to do so, I would have to get a catheter. I freaked out of my head. The bad part wasn’t the catheter going in, the bad part was it coming out. It was awful. I’d never experienced anything like that and it was all done just to say I had an ovarian cyst that ruptured and you can go home. It was because of this experience (plus feeling like I had been manhandled) that I refused to see a gynecologist for a long time.
After that, I experienced years of bad cramps and irregular, heavy periods that would sometimes last for 10-15 days at a time. I had all the signs of endometriosis, but I just thought I was another teenage girl with bad periods. I mean you hear that from all your high school girlfriends, right? We all would complain about our cramps and compare our flows, so you just think that you’re experience is no different that anyone else’s.
Let’s speed ahead. The summer after my 23rd birthday, I noticed some irregular swelling down there. I figured it was yet another yeast infection (I would get a yeast infection any time I took antibiotics). The swelling quickly increased though. I went to my mom and she took one look and said, you’re going to the gynecologist. I probably stamped my feet and yelled no way… But I knew she was right. So off I went. I had my gynecological exam as an adult, and it was no where near as bad as I had psyched myself up for. She determined that my swelling was due to a Bartholin’s Gland cyst. She then gave me my first ultrasound in many years and found a massive cyst on my left ovary. Due to the size of the ovarian cyst, she sent me along to a specialist. I was referred to Dr. Stephen Mooney in Akron and he remains my best medical experience to this day. Dr. Mooney examined me and said we need to operate soon, so we scheduled my first laparoscopy surgery for the ovarian cyst plus removal of the Bartholin’s Gland Cyst.
The Saturday night before surgery (it was scheduled for Monday morning) I began vomiting uncontrollably. Dr. Mooney told my mom that if she took me to the ER, there was nothing they could do for me because my surgery was already on the books. My abdominal pain was so severe that I didn’t care, I forced my mom to take me to the ER. They ran a couple of tests and said that the cyst had not ruptured but instead became so large that it twisted itself and laid up against my stomach causing the pain and vomiting. They sent me home to wait it out.
Monday morning rolled around and it was show time. During the surgery, they removed a total of 7 cysts. One the size of a baby’s head on my left ovary, multiple on my right ovary and cysts in various places like my fallopian tubes. Dr. Mooney was able to diagnose me with endometriosis because of the type of cysts, which he called “chocolate cysts”. He said I was basically a mess on the inside. The Bartholin’s Gland cyst was removed and packed with cotton. Because I had three incisions on my abdomen along with the huge incision from the Bartholin’s Gland cyst, I couldn’t walk. My dad had to carry me around the house the first two days at least.
When I went back for my post-op appointment, Dr. Mooney removed the packing from my Bartholin’s Gland Cyst and the nurse had to hold me down to the table… The area became badly infected and the packing was horrific to remove. I wasn’t out of the woods yet, I needed a high dose of antibiotics to clear that infection before I could return to work. I think I missed a total of 8-10 weeks throughout the course of this first round with endo.
Dr. Mooney put me on birth control after that first surgery, saying that due to the severity of my endometriosis, I really didn’t have a choice but to start it. If you want to learn more about my birth control history, read this post.
After that, I returned to normal. My periods were less painful and I had normal cycles for the first time in my life.
Speed ahead to two summers later. I started having symptoms of IBS. By this time, Matt and I were dating long distance. We traveled to the Hamptons and I got terribly ill while there. We took a helicopter from the Hamptons to New Jersey to then fly home to Ohio. I was so sick prior to getting on the helicopter that I took a Phenergen for the nausea and slept on Matt’s lap the whole helicopter ride. What a waste of a once in a lifetime trip. As soon as we landed in Ohio, my mom took me to the ER and they hooked me up to an IV with Morphine because I was having horrible upper right quadrant pain. After running a ton of tests, they ruled out gall bladder and everything else under the sun. They sent me home with a diagnosis of IBS. I was referred to a gastrointestinal specialist and started down that road.
The gastro doctor prescribed new meds and completely changed my diet. Nothing would give. The abdominal pain was relentless. Finally I went back to Dr. Mooney and he said it was time to do another laparoscopy.
Welcome to endometriosis surgery #2. This time Dr. Mooney found that my ovaries had grown attached to the wall of my back. He advised that my IBS was most likely due to the endometriosis and he was so right. After that surgery, my intestinal symptoms were basically gone.
I always stayed up on my appointments with Dr. Mooney. When I moved to LA in 2011, I was so upset to leave my favorite doctor behind.
Since being in LA, I’ve been to three doctors for my endometriosis. I’ve never found the level of care or experience that I had with him. When I was home in Ohio back in March, I went in to see him for a check-up. I wish he would magically move his practice to LA!
I’ve been off birth control since February of 2016. I have experienced a lot of my old symptoms of irregular periods and cramping. Dr. Mooney is under the impression that another laparoscopy will be in my near future, and when/if that does happen, you better believe he’ll be doing my surgery. I have done more hours of research than any one person should, on the topic of endometriosis. I’ve tried so many supplements and life changes. I try my best to avoid soy, which is claimed to be a big culprit of the disease. I have been on folic acid for many years. But most recently, I started a supplement called MacaHarmony, which was referred to me by a woman working in the supplements department at Whole Foods. After researching the supplement, I started it and within the first month I had my first regular period in more months than I could remember.
If you think you are suffering from endometriosis, first off… I’m sorry. I know your pain and I know how helpless you can feel. Something I think a lot of people don’t realize, just because your mom didn’t have it doesn’t mean you don’t have it. My mom never had endometriosis or surgeries like this. My aunt and cousin both had it, but that was the only connection to the disease I had.
Do your research. Listen to your body. Find a great doctor. If you don’t feel comfortable with the doctor your seeing or the answers you’re getting, seek a second opinion.
One resource I would highly recommend for my endo sisters is Nancy’s Nook on Facebook. It’s a fantastic group of women who support each other through this journey.
My endometriosis journey is unique. We all have different symptoms, different treatments that are needed and different roads to recovery. I’m not a doctor and my story should not be taken as advice or direction for your treatment. Seek medical attention before taking any supplements.
Leave a comment below if you too have suffered from this nasty disease that too many of us women have. Please share what has worked for you and feel free to also share your journey. ❤️