“What do you mean it’s not just Endo?”

Well, here we are again. I figured it was time for another post considering that I’ve racked up a couple new diagnoses over the last few months, so my story continues. I made my last post a few months ago, when it had been about 1 month after my endo surgery with the specialist in New York. At that time, my pelvic pain and full-body fatigue had not improved yet at all, but I’m happy to say that it has improved some since then…well the pelvic pain has at least. I have good and bad days and am still living in pain each day, but a couple of months after I returned to Alaska after my last surgery, I began seeing a new primary care provider who took the time to seek out if I had something else going on that could explain why my fatigue, joint pain, brain fog, and chronic whole-body pain only seemed to be getting worse while my pelvic pain had improved a little bit. I remember her saying, “Sarah, I’ve only just met you, but I can tell you right now that I don’t think endometriosis and adenomyosis are the only health conditions you are living with every day.”

Before I knew it, I was being referred to a pain specialist and a cardiologist to do more workups and evaluations. I answered lots of questions, did a lot of tests, and performed a lot of strange body movements for the pain specialist. I talked about how debilitating my joint pain was, mostly in my hips, knees, and ankles, and how it has gotten so bad that I can’t run anymore and struggle to go up and down my stairs sometimes. I explain how I’ve gained a pretty significant amount of weight because I am in so much pain that I can hardly ever exercise. After a few minutes of discussion, I was quickly diagnosed with Ehlers Danlos Syndrome (hypermobile type), otherwise known as hEDS. I left the pain appointment with a daunting and overwhelming packet full of information to learn about hEDS and how to attempt to manage it, but I remember feeling relieved that there was yet another explanation for the way I’ve been feeling for years. For those that have never heard of EDS, there are 13 different types you can be diagnosed with, but I’ll focus on my specific type for this post. Hypermobile EDS is a connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain from your joints basically moving in ways that they aren’t supposed to. I guess being double-jointed and doing “party tricks” with my body when I was little didn’t end up being as cool as I thought it was at the time. People with hEDS may also experience digestive and skin problems because those are areas where soft/connective tissue are heavily involved. While I was still in the appointment where I was diagnosed, the doctor showed me this huge list of other conditions that are commonly associated with EDS or have also been discovered in patients with EDS. She tells me, “people that have these types of diseases rarely ever have just one,” and I gave her an “are you kidding me” type of look. The list included conditions like Mast Cell Activation Disorder, GERD, interstitial cystitis, Raynaud’s, fibromyalgia, diverticulosis, etc. I quickly was able to pick out conditions from the list that I had already been diagnosed with: endometriosis, scoliosis, anxiety, depression, IBS, and something that I would later be diagnosed with but didn’t know it yet, Postural Tachycardia Syndrome or POTS.

Apparently, POTS and hEDS run together VERY frequently, which explained why my PCP just went ahead and referred me to both the pain specialist and cardiology at the same time when she formed her own suspicions that I had hEDS. POTS is one of a group of disorders where orthostatic intolerance is involved, which basically just means an excessively reduced amount of blood volume returns to the heart after someone changes positions, usually from sitting or lying down to standing up. Two of the most common symptoms of POTS is lightheadedness and fainting, which is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. When my cardiologist asked me if I ever experience lightheadedness, I replied by saying “well yes, but I just always thought it was due to the pain I was experiencing from my endo.” I eventually found out I was wrong about that and had, YET ANOTHER, explanation for some of the symptoms I was experiencing including my brain fog, lightheadedness, frequent ringing and whooshing noises in my ears, my inability to stand for long periods at a time, heart palpitations, chronic fatigue, why my feet get incredibly swollen when I fly (don’t judge me when you catch me with my compression socks on), and why my feet sometimes get a dark purple color when my legs are below my heart for a longer period of time. I remember in high school I was at someone’s house for a party and was sitting on a barstool chair, and a guy pointed at my feet and loudly said, “OH MY GOD, WHY ARE YOUR FEET SO PURPLE?!?” as they were dangling below me, and I felt my face get beat red and brushed it off as fast as I could. I also recall when my heart palpitations started when I was stationed at Eglin in Florida. A military doc had a heart work-up done on me then, but when everything came back normal, they just blamed the palpitations on anxiety. I wanted to just scream “MY ANXIETY IS BECAUSE NONE OF YOU PEOPLE BELIEVE ME.” If only they had taken the time to look at other possible causes for the palpitations other than an obvious cause that would smack them right in the face, I maybe would have found out about this a lot sooner and could’ve learned how to manage it by now. When I did the NASA test (something that can diagnose you with POTS) at my cardiology clinic, the woman doing it on me said “Um, we can go ahead and stop now if you’d like. I have everything I need,” and in that moment I realized we had stopped early because I had already met the criteria needed in order to be diagnosed.

Luckily, I have a couple of friends diagnosed with both hEDS and POTS as well. They have been a godsend in figuring out how to manage these diseases. What is hard about these particular diseases, including endo, is that what works for one person may not work for the next person. You really have to figure it out for yourself and do some trial and error. I have realized that it’s a very long and rough process to find what works for you, but it’s important not to lose hope. It’s so very easy to let yourself go down a dark path and think “I’m never going to feel better” or “I’m never going to live without pain,” and trust me, I still have some really bad days when I let myself think like that. It’s okay to feel down, as long as you don’t let it last for too long and get yourself in trouble. I remember one particular friend saying to me, “you won’t feel this bad forever Sarah,” and I could’ve just broken down and cried right then on the phone. I thought back to when I went to the doctor while still active-duty in Alaska complaining of how bad my knees hurt and saying to the doctor, “it is NOT normal for me to feel like this at 30 years old,” and she dismissed me and said it was just “normal wear and tear” on my body. Finally, I had doctors that were believing me and willing to take the time to figure this out.

When it comes to managing POTS, I have realized just how important hydration is (after preaching it to patient after patient once I became a nurse). I have learned the importance of salt in my diet and getting enough sleep. I have a ring that monitors my heart rate each day, and I can see when it reaches crazy highs during the day, so I know when to chill. Learning to manage the hEDS has been more challenging. I now go to physical therapy to ensure I am working on joint stabilization and making the muscles that surround my problematic joints stronger. I have been working hard to decrease the inflammation in my body by going gluten free and changing the way I eat. I take what seems like a million vitamins and supplements to give my body what it needs to perform better. I am also on a low-dose pain medication to help me out in the meantime. I’m still deep within the process of trying to feel better, but I have hope that I’ll get there one day. I’ve lost about 20 pounds so far, and yes, I am on a semaglutide medication to help in hopes that losing weight will help decrease the constant inflammation.

Honestly, one of the biggest lessons I have learned throughout all of this is that you should NEVER apologize for doing what is best for YOU. If I have a day where I’m feeling like shit, I’m going to bail on you if we have plans and not push myself too hard while hoping that you’re an understanding friend. If I need my alone time to be in my feels and just chill, I’m going to do that and not be apologetic about it. I have realized the importance of surrounding myself with people that genuinely CARE and want what’s best for me, even if it means I disappoint them sometimes. I honestly have the most thoughtful and supportive friends in the world. When I recently took a trip overseas, my best friends made sure I was feeling okay at all times and were concerned about me having a gluten-free option wherever we ate (10/10 do NOT recommend being gluten-free in Europe though…I smelt fresh-baked bread EVERYWHERE – HAH). My bestie, J, is constantly asking what’s next on my to-do list with my health and how the process is going. I would never expect anyone to understand what I’m feeling or what I’m going through, but having people around you that truly care is an insurmountable feeling. I also can’t forget about my family because I know and feel it in my heart that they are always praying for me and thinking about me.

As far as what the future holds, who knows honestly. At my last drill weekend for the reserves, I spoke with the doctors in my unit and told them about what has been going on with me (which is why I now feel comfortable enough to share this update). I shared my diagnoses and asked them what they thought the Air Force Reserves would do with me. They were unsure, but said they would back me all the way with whatever I had hoped the outcome would be. Let’s be real – I am in no condition to be of assistance to my brothers and sisters in arms in a deployment scenario, but I can still do my jobs back at home. I struggle with running so severely, that I can barely pass a PT test without feeling like my body is going to fall apart on me. I told them that as much as I wanted to fully leave the Air Force when I had made that decision for myself, I would accept whatever the outcome was. If they allow me to stay in while trying to get better, then great. If not, then I will gracefully bow out and be thankful for the time I was able to serve and the people I was able to meet.

Phew – if you made it this far, then a round of applause goes to you. As always, thanks for being a part of my journey, and I’ll continue to be fully transparent and honest about my experiences in hopes that it could maybe help someone else. Another important lesson I’ve learned is to ADVOCATE for YOURSELF because no one else is going to do it for you. It just takes that ONE provider, that ONE person, who is willing to take the time to look into why you could be feeling the way you do. Just one human being that is open to looking beyond the common diagnoses that they typically see.

If you or anyone you know has been struggling with endometriosis, adenomyosis, EDS, or POTS, feel free to reach out. I am by no means an expert and am still learning, but like I said before, it helps to have people in your corner that genuinely care. We all have our own struggles going on and you never know what someone may be going through, so never forget to be kind and as always…..

Peace & Love,

Sarah