I missed the confetti...

Saturday, March 30, 2019


This is My Endometriosis Story:

I recently attended a conference that wasn't my typical for my travels. I thought I was attending this conference to gain some perspective on my long-term professional goals and uncover ways to engage my creativity. Instead, we did some soul-searching on what matters most in our lives and did some "heart work" to figure out much more than simply what to do next in business.

Disclaimer: This post is about lady problems. If you're a guy who is uninterested OR 
if medical stuff makes you a little uneasy, this one may not be for you.

After two full days together, unplugged from the world and feeling renewed, we got the opportunity to celebrate the work we had done. We had been asked to gather on the dance floor - toasts were being made and you could tell the excitement was building but not quite at its climax. In this moment a painful tinge in my abdomen reminded me I was on my period. Periods happen... like literally every month. It's a thing. For me though, this period started on March 2nd... and it was March 26. I was SO over it, but at this point I've become used to it. I figured I had enough time in that moment to run to the bathroom for a quick change. I knew we'd start dancing soon and having a blast and I didn't want to miss out on the fun. When I returned to the ballroom it was literally covered in confetti. Bright, beautifully colored strips of confetti not only covered the dance floor, but also perfectly clung to everyone who was present. Everyone except me. 

In that moment I thought, well damn if that's not poetic. The party literally started without me. I was too busy trying to fix my problem and there's life, just carrying on without me, not even making an effort to remember I had left the room. It made me think... What else have I been missing? I felt like I was living in a dramatized commercial. The ones where you see a parent watching their child play outside, longingly overseeing from the kitchen window instead of out there in the action.

I was diagnosed with endometriosis in October 2017 after many, many months of uncertainty. Endometriosis is a disorder in which tissue that typically lines the uterus grows outside the uterus. It can manifest in a variety of ways and symptoms that are different for everyone: painful periods, excessive bleeding, and infertility are a few of the most common. I can't quite remember when I first noticed a physical change in my body, but my periods became incredibly painful during college. At the time I just thought to myself that everyone hates their period... right? But those symptoms were always "on the inside" so I felt no cause for concern and never mentioned it to a doctor. 

In the late spring / early summer of 2017 I noticed a small change around my naval. I can only describe it as a what I thought was a cyst or maybe even a blister. There was definitely fluid within it, but it started so small I just assumed there was something superficial happening with my skin - a sun burn, new lotion, or maybe even a new piece of clothing could have caused it. So I let it do its thing. I wore one piece swimsuits and became super self-conscious about my stomach, even more so because I felt that I was gaining weight easier and constantly feeling bloated. The thing that kept me from seeing a doctor was that this cyst-like bump would come and go. I didn't see any rhyme or reason to it, but one week it would be extremely visible and others you could hardly tell I had a belly button at all. 



One day I started to notice there was fluid in there, the first few times it seemed clear and then I noticed it seemed darker, almost like dried blood. But it wasn't forming like a pimple or something you could "pop". Having had cystic acne in college, I was completely comfortable to try and drain it myself... still denying that I needed to see a doctor. So that's what I did and I noticed that there was quite a bit of blood in there, old and new. I knew at that point I needed to have this thing checked out. Of course you can never just go to a specialist first. For me being in a city where I hadn't yet established a new primary physician, this meant a period of time set aside for researching local doctors who were within my insurance network. So this took me a few weeks.

Once I found my primary care doctor, she was great! She also had absolutely no answers for me. I understand now that as a primary care physician it wasn't necessarily within her scope to ask about gynecological problems and to be fair to her, I wan't even considering the possibility of this issue being related to that. Her thoughts were that it might be an umbilical hernia and that I should consult a surgeon.

My first surgical consultation was fairly standard and I left with an appointment for ultrasounds scans to determine if a hernia was present. For most people, ultrasounds are completely painless, but this scan for me was incredibly painful. The mass on my stomach had grown in size, was painful to the touch, and the technicians had to press on the area pretty aggressively in order to obtain an image. My second surgical appointment came to review the results of the imaging, however, still left us without answers. I left this appointment feeling a little defeated but with a prescription for a topical remedy my surgeon hoped would clear the problem. My surgeon told me this mass was entirely superficial and a simple cosmetic issue - there was absolutely no need for surgery. I took the topical home and still, no results. I returned for yet another follow up with no answers and very little hope. My surgeon explained there was the option to surgically remove this unknown mass, but the procedure would be considered solely cosmetic. The decision to move forward with this "cosmetic" surgical procedure came from complete exasperation. I was so tired of having this on my body and not knowing what it was. I was okay shelling out thousands of dollars just to get it removed and possibly still never receive an answer.  

I had never had surgery before and nobody can quite prepare you for how you feel after a stomach procedure. Not being able to sit up or cough or move around was frustrating, but I felt so relieved that I was on the other side of this issue... or so I thought. Not long after my surgery, my doctor called and said they received some unexpected results when they tested the mass that was removed. It turns out that this mass was made up of uterine tissue - at the time I had no clue what that meant. After further explanation, I learned that this meant I had endometriosis. The mass that had formed was developed enough that it started to begin its own menstrual cycle; that was why it came and went and also bled during those times. I basically grew my own little baby uterus on the outside of my body. Kinda freaky right? I was a little confused but mostly ecstatic to have some answers. Does anyone else hate going to the doctor, feeling like crap, only to find out nothing is wrong with you? As I kid, I didn't want to get strep throat or the flu, but if you tested positive for these, there was medicine and clear steps to make you feel better. Without answers, the path to feeling better becomes a little hazy. 

After receiving the diagnosis from the lab results, I had to find a local OBGYN to start helping me navigate what long-term treatment options were available. I absolutely LOVE my doctor and if anyone in the Raleigh area needs a recommendation, I'm happy to provide it. She is encouraging and realistic and has been nothing but the most wonderful sounding board during this very confusing time. I have tried SO many forms of birth control all with little success in stopping the bleeding but more importantly, suppressing the growth of the uterine tissue. Yes, if you are a guy and have made it this far or are simply unaware, birth control has many purposes other than simply preventing pregnancy. I am currently on my fourth round of Depo-Provera and am seeing little success. My doctor has said that we always have the option to go in and "clear me out" which essentially means a surgical procedure to remove the extra tissue that has grown. The only issue is that without proper monitoring, the tissue will just grow back. We'd like to delay this until a time closer to when I decide to try and have children. 

Which brings me to children... At my first appointment I almost jokingly asked about my possibility of having kids because I mean who can predict that? I also have never been the person who has seen myself as a "mom". I babysat for one summer and the kids were pretty chill, so it wasn't terrible. But you could not pay me enough to do it again. I have always assumed kids were part of my future, but I was happy to wait well into my thirties before even exploring that idea. The unexpected answer to my question involved my doctor explaining that by how advanced my endometriosis seemed, she did not want me to get my hopes up for having children. This obviously has come as a bit of a shock at first, but I am hopeful that by having awareness of my situation and access to the medical advancements that exist today, I will one day be able to welcome children into this world. The plan is to have the "clearing out" surgery around this time so I can try naturally at first before exploring IVF or other methods. She has recommended that when I decide I am done trying or hopefully have successfully had the number of children I would like, that we go ahead and remove my reproductive organs so I don't have to continue experiencing endometriosis pain. Of course these are big conversations to be having at my age, but I feel that we are being proactive in the realities of my future. I feel more confident knowing there is a general, but flexible, plan in place for all of the "what ifs".

Endometriosis for me feels pretty small and insignificant compared to some of the BIG reproductive realities that women today face. But it was while attending the conference where I missed the confetti that someone told me "if you don't tell your story, nobody else will". It also turns out that endometriosis is pretty common - 1 in 10 women are diagnosed with it during their reproductive years. That's a LOT of people! I wish that I had more people to relate to when I first received my diagnosis, so my hope is that sharing this will help connect me with others going through similar experiences. Moving forward, while endometriosis frustrates me every single day, I feel healthy and happy and ready to conquer whatever comes next. I may have missed the confetti once, but you can bet your ass I won't be doing that again! I am excited to become even more proactive in figuring out what works for me and what will help me live life to the fullest - it's too short not to. If anyone wants to connect, I'd love to hear from you!


Images provided by Rachel Coffey Photography