"Your illness does not define you. Your strength and courage does"
🎧 Episode 24: My scars only tell a small part of my story. Listen here
Have you ever felt like you knew something was wrong with health, but everyone else including the "professionals" told you otherwise?
In this episode, I share my endo story. I talk about the medical trauma I faced as well as the imposter syndrome that crept in.
On this journey for answers and healing, I did not get everything resolved but I learned along the way that it is still important to celebrate every win, even if it seems small. I am not sure what will come next for my endo story, but I do know that many women in the endo community have had 5-9+ surgeries in their lifetime. The sad part about the lack of research is that at this point endo doesn't have a cure.
My mission is to help by sharing my story + symptoms to help spread awareness. A 10-year wait for any diagnosis is unacceptable!
#endothepainFor me, it had definitely been over 10 years. I started off thinking that my symptoms were all G.I.-related (gastrointestinal). I did not know at the time how endo could affect many parts of the body and not just the ovaries.
In February of 2020, My husband and I were in AZ for his job. I have always wanted children so, I decided to find myself an OBGYN to see what was going on. I had an idea that I had endo going in, but I wasn't sure. The only reason I even thought of endo was because of my friend's mom. She told me about Endo and how the symptoms sounded like what I had told her I had. Back when she told me this, I was strongly convinced that I only had stomach issues, such as IBS. What I didn't know then is that Endo + IBS can go together. After the GI doc refused to do any further research after his diagnosis, I gave up on my health diagnosis for a while, because I felt defeated. IBS was a form of an answer, but it was not enough and it had nothing to do with the pain I was/ still am experiencing. Back in AZ, I was able to see an OBGYN who was willing to do the surgery and we planned for it to happen in April. The only issue was at the time something made me feel unsettled about this surgery with my doctor. I thought it may just be the jitters of having surgery so, I ignored it. Until my aunt had a conversation with me about making sure I chose a doctor that I am comfortable with and trust. I honestly couldn't say I felt that way with the AZ doc. Instead of changing the surgery date, I decided to keep it because I was desparate and just wanted a form of relief.
In March, when everything started getting shut down, the AZ OBGYN told me that they had to cancel my appointment. Today, I can say that Covid saved me from what could have been a botched surgery. You would think with all of the harm covid caused that there couldn't be a form of good, but for me there was. I am not saying it should have happened in any sense, but I am thankful covid forced me to listen to my aunt's advice. She recommended a place that she had gone to in her hometown of Boston, MA. Unfortunately, her original OBGYN no longer worked there, but the woman that took her place had an amazing rapport. Since Covid happened, I was able to have video calls with Dr. Elisa while we traveled. I was also able to get her all of my information from all of the offices that I had been to (I went to many throughout our course of traveling). She made a game plan right from day 1 and told me that the type of surgery they were going to perform in AZ, would have been very bad. She said I would have had to find another OBGYN to undo what he was going to do.
In August, we finally had a date for the new surgery. (At this point all communication had been through video so, I actually met her in person on surgery day). Everything was working in our favor for this, my aunt and uncle offered their home to me so, I had a place to recover. Jeremy happened to have time off the weeks that we were there, and one of my best friends came out to stay with me for a few days.
Surgery day came faster than I expected and I was so scared, but luckily at this point, I was allowed to have Jeremy in the room with me. I prayed and asked my Grandma Kate to send me a sign that I would be okay. (She has always shown herself in every hospital situation I have been in. I always found myself having a nurse named in some form of Kathleen Mary. I always know when I hear that name that I will be okay.) After surgery, I woke up with nurses running back and forth, but it was still hazy for me and I could only see them to a certain degree. I can recall myself saying, "Hello, hello? Can you hear me? Can you see me?" A nurse came up to me and I saw the outline of her curly hair, I told her that she was so pretty and that I just loved her hair. (Last time I came to from anesthesia from another surgery, I was crying and telling my mom that I missed my nurse and that she didn't say goodbye to me LOL). The next thing I knew, I fell back asleep and woke up in another room and they wanted me to start drinking fluids. When I was more awake they called Jeremy and wheeled me down to him. I remember feeling so sore and groggy, but Jeremy took care of me. The only thing I didn't realize until after surgery is how many potholes Boston actually has, and how much it hurts to drive over them. OUCH!
After Jeremy got me situated he told me that the doctor had called him while I was in recovery, and told him that she found endo. SHE FOUND ENDO!!!! You would think that would be the worst news to hear, but I needed that. I needed to know I wasn't crazy or that this pain wasn't made up. I felt relieved, after 10+ years I was finally given a diagnosis.
A few days later, it was time to take a shower and I needed help because I could not lift my arms without feeling a slight tug from my stitches. I remember I wasn't looking forward to this, because I was afraid of what I would see under the bandages. Honestly, when I saw myself with bandages, I cried because I thought that I lost my body. I know that is vain, but I had always been self-conscious, (we will touch on this in a later blog). I have to share this honesty with you because sometimes we are so cruel to ourselves when it is unjustified, well maybe more than sometimes. I was told I would only have small scars and they would heal quickly, but to me, the bandages looked like a lot so, I wasn't sure what I would see. Don't get me wrong, I absolutely believe that perfectionism is a bunch of BS and that scars can be a beautiful part of our story in life, but after this surgery, I was all over the place emotionally. I remember second-guessing if I should have even had the surgery done. When the bandages were finally removed, relief flooded over me and I realized it wasn't bad at all.
The very next day, I had a follow-up appointment over video and my OBGYN told me I should see how my period will be three months after surgery.
Present Day: Unfortunately, I am back to the same regimen of two heating pads, 400mg of ibuprofen on every 4 hr. mark, and barely wanting to eat. I will say that Yoga, Fitness, and hiking have made it a bit more tolerable. On a normal basis even with all of the above aides for endo, I would still be in pain sobbing in a ball. With this, I have found it is important to celebrate every win, even if it is small. I know surgery helped me in some manner and will also celebrate that mini win. I am not sure what will come next for my endo story, but I do know that many women in the endo community have had 5-9+ surgeries in their lifetime. The sad part about the lack of research is that at this point endo doesn't have a cure. My mission is to help all generations either by sharing their story, symptoms and to spread awareness that could help someone who may be suffering. A 10-year wait for any diagnosis is unacceptable.