Following is a story about persevering through a medical diagnosis and trusting your instincts. This is D3 Athlete Karen Pompay's story.
I was never much of an athlete during my childhood. In fact, the best workouts I got in the 1970s and the 1980s were the hours of coughing from my parent's second-hand cigarette smoke (I had abs of steel back then). Fast forward to the summer of 2021, and triathlon training and a healthy lifestyle had become the centerpiece of my identity. My training for the 2021 Kona Ironman was going well under the guidance of D3 coach Brad Seng, and I was excited to race and thought I could do well. Despite feeling like I was more prepared than ever to perform my best at Kona, I kept noticing pain and tightness in my right achilles during my training. Despite the pain, I kept pushing forward. When Kona was canceled because of covid concerns, I raced Atlantic City 70.3 and won my age group. It was a great way to end my season.
With Atlantic City over, I finally made an appointment to resolve my achilles pain. My doctor agreed that an achilles procedure would help me run pain-free. The procedure, which included PRP injections, went well, and my doctor warned me to stay off my feet. Despite the temptation to keep training, I knew now was time to take a break, especially because my husband and I had begun classes to become foster parents.
All was going well with my recovery until I started to get a weird feeling in my pelvis two weeks after the procedure. I thought it was bladder irritability or bad PMS. As a 50-year-old woman, I blame everything on perimenopause. I just thought I was overthinking all my usual aches and pains. It felt strange, but I had been getting pelvic pain for years, so it did not overly concern me.
I then started to get left-sided pelvic pain that extended to my back. I had no idea what this was and following my occasional tendency to be a bit of a hypochondriac, I Googled both "ovarian cancer" and "groin pull." The pain was worst when I walked, but it would go away after sitting down. I have experienced a wide variety of pain, from delivering four kids to thousands of hours of training. Still, this pain was so unusual that my concern kept growing.
After some online research, I couldn't find any explanation for this weird feeling and decided to ignore it. I thought a doctor would tell me it was perimenopause, and the pain wasn't Ironman-level pain, just a dull ache. After completing Ironman six times and qualifying for Kona twice, I don't complain about pain. Plus, women my age are still conditioned not to talk about anything hormone-related.
Then, after a few days of ignoring the pain, it spread to my upper quad and thigh. It felt precisely like muscle pain, but I was still recovering from my procedure and not doing any real working out. The following night, I woke up with the worst quad muscle spasm, but it was gone by the next day. But when I glanced at my left leg that morning, it was swollen from ankle to groin (see image to the right). I immediately knew that it was a Deep Vein Thrombosis or DVT, and I rushed to the hospital crying and scared. At that point, I did not think the original pain in my pelvis had anything to do with the DVT.
The emergency room performed an ultrasound on my thigh and found a blood clot. The radiologist said he found DVTs were somewhat common in athletic people, at least anecdotally. Athletes tend to be overly confident that they are too healthy to get blood clots. This belief is a consequential misconception. Chronic dehydration, long rides in cars and airplanes, a low resting heart rate, and low blood pressure are all aspects of being an athlete that can lead to DVT clots. The doctor said that those things, plus sitting around a lot, contributed to my DVT.
The doctor ruled out a pulmonary embolism, and they gave me a prescription for blood thinners and sent me home. By the time I got home, I could barely stand, and if I moved, I felt pain, throbbing, and a feeling like my leg would explode.
The hospital recommended a specialist, who I called the next day. Their office told me they reviewed the scan, and the DVT wasn’t dangerous (whatever that means). They told me to make an appointment in 5 weeks. With the pain and unclear instructions, I began to get really frustrated. I felt terrible, and I was not getting better, but they told me to resume "normal activities.” Normal activities are a lot different for me than for other people who are not constantly training for Ironmans. I was also scared that a massive clot would dislodge any second and travel straight to my lungs. It felt like the clot must be huge because blood could not get out of my leg, and any activity would cause my leg to swell more.
The leg was the same every day, maybe ever so slightly better than the day before, but after a week, it stopped improving at all. My daughter had a swim meet, and I had to attend in a wheelchair. Once again, my hypochondriac skills activated. Google told me that the long-term prognosis for my type of DVT wasn't good regarding damage to the vein. Post-Thrombotic Syndrome (PTS) is a lifelong condition, and while symptoms can be managed, the condition never goes away.
I called the doctor at the private practice again, who gave me no advice and did not want to see me earlier. He then referred me to the team at the hospital to ask about symptom relief, and I was told by a PA at the hospital to "suck it up." I particularly disliked their advice to “wear a compression stocking.” My problem was not going to be solved by using a stocking.
At this point, I wasn't sure if PTS was just something I would have to accept. The thought of doing Kona IM was just a distant memory - I couldn't even walk, let alone train for anything. The depression hit hard. One month prior, I was winning my AG at a half ironman, and the next month I was walking slower than my 87-year-old aunt.
Thankfully, I made one of the best decisions of my life and sought a second opinion. I went to see Dr. Mohsen Bannazadeh at Stonybrook hospital, and he saved my life. Dr. B is not only smart but cute, funny, and kind. He scanned my pelvis and quickly told me he suspected I had May-Thurner Syndrome. He wanted to admit me to the hospital that night to get me on a heparin drip and perform surgery the next day.
May-Thurner anatomy is a condition (present in over 20% of the population) where the right iliac artery compresses the left iliac vein against the spine. Unfortunately, May-Thurner anatomy can turn into May-Thurner syndrome, and the first symptom is usually a thigh DVT. May-Thurner syndrome usually occurs in women, more specifically pregnant women. It usually occurs on the left side, although they checked my right side too. When I asked Dr. B why I would get a DVT at this point after four pregnancies, he could not answer that question because May-Thurner syndrome is not well understood.
Maybe it was because I was getting older; perhaps hormonal changes contributed; maybe my right iliac artery just got stronger through Ironman training. Sitting around after my achilles surgery definitely contributed to the seriousness of the clot. Still, Dr. B told me he found I had a prior undiagnosed clot so it was just a matter of time before I had that massive DVT.
May-Thurner syndrome is often missed, under-diagnosed, sneaky, and cruel. Dr. B said that every ER should scan the pelvis when someone presents with a thigh DVT. Initially, I went to a well-known, highly respected hospital that serves the metropolitan NYC area. They missed May-Thurner syndrome because they never thought to scan my pelvis, only the leg.
Dr. B put me at Stonybrook hospital that night and performed surgery the following day. He made two small incisions behind each knee, cleared out a massive clot from my thigh (the nurse was showing a picture to the other nurses as the clot was so impressive), and then placed two stents in my iliac vein to open it to restore blood flow. He said the vein was 95% compressed. He found extensive collateral veins around the area that had formed over months or years to get the blood back to my heart. These collateral veins went around and through my uterus, bladder, and ovaries.
He also said I had pelvic congestion syndrome, which many women have even though most do not realize it. The main symptom is pelvic pain because of improper blood drainage from the area. It seems to occur more often in women with multiple children because of enlarged veins in the area that occur during pregnancy.
After the surgery, I had severe back pain from the renewed blood flow for a couple of days, but my leg pain was gone immediately. I started riding the bike later that week. One month after surgery, I am back to biking and swimming, feeling great even though the blood thinners have made me anemic. My achilles is almost perfect, and I plan to start running in January.
Dr. B will monitor me regularly to check that the stent is working correctly. Next year, I hope to be off blood thinners and training for Kona and the 70.3 championships.
I cannot guarantee that my leg will perform as before or that my stent can withstand the training I intend to do. Still, until Dr. B tells me to stop (he shakes his head, smiles, and thinks I am a little crazy with my training), I will be at Kona next year, more thankful, appreciative, and grateful than ever for my health.
If I could help one person understand DVT and May-Thurner by writing this article, it would be worth the experience. My best friend died suddenly at age 44 from a misdiagnosed DVT that turned into a pulmonary embolism. She left behind three beautiful children. It doesn't matter how healthy you may be or how often you train; May-Thurner and/or DVT can strike anyone. It's a lesson I plan to share with people for the rest of my life.
We are truly proud to share Karen Pompay's story with all of you. She has an important message for athletes to know, and we are confident that with her new physician, proper diagnosis, and her sheer determination (one of the driving principles of D3) she will get her chance to race the Ironman World Championships.