June is Lipedema Awareness Month – I’m sharing my story to help raise awareness.
In my previous post, I shared my diagnosis of Lipedema Stage 1, Type 3 & 4, along with other conditions such as FLM, and she suspects EDS, and Veinous Insufficiency.
After receiving the diagnosis, my husband and I decided to continue IVF to expand our family. This time, we opted for a donor egg to prevent our child from inheriting my challenging genetic conditions. It also allowed me to avoid the hormone drugs used in the egg retrieval process, which had previously caused significant swelling and fatigue.
Knowing that pregnancy can trigger Lipedema, I was determined to manage its progression through careful diet management, wearing compression garments, engaging in regular walking, and swimming at the local pool. Despite my previous painful pregnancy experience, I believed that I had identified the source of my discomfort and hoped for a smoother journey this time.
To prevent the same pain, I had experienced during my previous pregnancy, I began physical therapy. I attended sessions twice a week, focusing on strengthening my hips. Additionally, I made it a habit to visit the pool three or more days a week and daily walk to get my kids from school. Then Covid hit.
During my pregnancy, I made a conscious effort to avoid nightshades in my diet. While my goal was to follow a low-carb eating plan, I developed a meat aversion and found myself craving cheese quesadillas, so I made them with almond flour to adhere to low carb. Overall, it was a relatively good pregnancy compared to my first, although I did struggle with some neck, back, and hip pain that my physical therapist addressed. The most significant issue arose on the day I received the d-tap vaccine, which triggered severe neck and back pain, as well as uterine spasms when I stood for prolonged periods or when walking. As a result, I had to refrain from standing and walking for a month until the spasms subsided. I should have learned from my previous pregnancy experience.
Fortunately, I managed to avoid giving birth on the side of the road, after getting a flat tire. I made it to the hospital just in time and I felt relatively good after delivery. However, approximately two weeks post-partum, I started experiencing intense pain in my hips. Over the course of a few months, I discovered that I had developed a sensitivity to certain plant-based foods that were increasing the joint pain. Legumes were among the culprits, although there were others that proved challenging to identify. Unfortunately, I began losing mobility, and the pain became too severe to carry my baby or engage in activities such as wearing a baby carrier.
Given the level of post-partum pain I was enduring, I wasn’t able to exercise. I allowed some carbs in my diet, mostly sweet potato and almond flour products, just I could produce milk. I brought a vibration plate, and I resumed physical therapy after four months. Despite several months of therapy, my condition did not improve, prompting me to request imaging from my doctor. However, instead of supporting my request, my doctor suggested finding a new physical therapist. Frustrated, I turned to the internet for information and came across the heightened risk of labral tears in individuals with EDS who had gone through childbirth. I persisted in advocating for imaging on my hip.
Following an MRI, I was referred to an Orthopedic Surgeon who diagnosed me with Complex Labral Tear, Glute Tendinosis, Osteoarthritis, and minimal cartilage, all resulting from undiagnosed Hip Dysplasia. Consequently, I required a left total hip replacement. It was yet another genetic disorder that went unnoticed during my younger years and it explains why I couldn’t do squats and lunges in the past. During this period, I relied on crutches for mobility and was unable to carry my baby. Additionally, I experienced an excruciating amount of pain in my right foot. I was told it was just plantar fasciitis, but it felt much worse than PF.
I visited a vein doctor in order to address Veinous Insufficiency. Given their specialization in women’s legs, I assumed they would be knowledgeable about Lipedema. Surprisingly, this doctor, who had also worked as an OB, and her staff repeatedly confused Lipedema with Lymphedema. Despite the confusion, they did confirm Dr. Herbst’s suspicion regarding Veinous Insufficiency. I had surgery scheduled to address my veins, but I had to cancel it in order to prioritize a different surgery that was crucial for restoring my mobility – a Left Total Hip Replacement.
I underwent hip replacement surgery when my baby was just 11 months old. I know what some of you are thinking. I should not have had a baby at age 44. I am actually glad I struggled with infertility. If I’d had my babies in my 20’s, it’s likely I would’ve needed a replacement much earlier in life. This would’ve also caused the Lipedema to progress much earlier. Replacements only last for 10-20 years, I could be getting my replacement replaced at this age, if I’d had my babies in my 20’s. Infertility was a blessing in disguise.
While most people can begin walking with a hip replacement on the same day, utilizing a walker, my surgery did not go as smoothly. I was prohibited from putting any weight on my hip for five weeks, confining me to bed rest except for engaging in some physical therapy exercises. Despite my concerns about weight gain, I surprisingly lost 10 pounds during this time, leaving me with 20 pounds of baby weight to lose. I often wondered if any of the medications influenced this outcome, as I continued to eat the same low-carb diet.
Once I regained the ability to move without the aid of walking aids, I hoped to shed the remaining baby weight by returning to the keto diet and exercising. I hadn’t gained any weight, but my thighs looked bigger. However, I encountered difficulties with my right hip, which still has Hip Dysplasia. I started keto, but the weight was not budging. I noticed that some individuals on keto had switched to a carnivore diet with success. I consulted my doctor, who recommended that I continue consuming green vegetables. I opted for a Ketovore diet, which is Carnivore with vegetables and nuts.
I was burdened by a long list of health problems for which I found no relief. Gout, tennis elbow, severe dry eyes, unquenchable thirst despite consuming lots of water, kidney pain, dry skin, hypercalcemia, high DHEA, high testosterone, PMS, headaches, poor sleep, intermittent carpal tunnel syndrome, excruciating foot pain due to plantar fasciitis and diminished fat pad, mild depression, and an inability to lose weight were among the issues I faced. Both my new hip and my old hip caused me pain, and I continued to walk with a limp. The hip replacement side appeared visibly larger than the other, it was also painful to the touch, making it impossible to lie on my side. I couldn’t help but wonder whether the hip replacement surgery had damaged my lymphatic system and if the Lipedema had progressed in my left hip.
I worried about the Lipedema advancing in my left hip, I attempted to secure a lymphatic pump through my insurance. Unfortunately, my request was denied, and the representative I spoke to insisted that I go on a diet first. WHAT!?
It was beyond frustrating to feel like I was doing everything right according to what I had been taught, yet still experienced debilitating pain and ALL these other symptoms. I felt much older than my years and questioned whether I deserved such a wonderful husband. I believed my children deserved a better mother who could embark on adventures with them. It felt as though my brain was betraying me, and I reached a point of surrender.
In my next article I’ll share what has been causing so much inflammation and what brought me relief.