Our Stories

In 2007, I was diagnosed with uterine cancer which required a hysterectomy and dissection of 30 lymph nodes. There was no metastasis, so no further treatment was needed until 2010 when cancer recurred in my groin and iliac regions. I underwent a second (exploratory) surgery, resulting in dissection of an additional 14 lymph nodes, chemotherapy and radiation.

The side effects of cancer treatment, particularly surgical scar tissue and radiation, have affected my life. It’s led to lymphedema and various other related issues which I’ll share here.

In 2015, I began suffering gastrointestinal issues and was ultimately diagnosed with ISBO (intermittent Small Bowel obstructions). It’s treated by a physical therapist (PT) educated in the John Barnes Myofascial Release (MFR) technique and a low residue diet.

In 2016, signs of lymphedema showed up first in my swollen foot and ankle which made weight bearing painful and walking difficult. When the swelling moved up my entire leg and the leg became bright red, I went to the Emergency Department where a physician ruled out a blood clot. I next saw a vascular surgeon who diagnosed venous insufficiency due to lymphedema. The same PT who was treating my ISBO began treating my lymphedema using the MFR technique.

My PT explained the correlation between the lymphedema pain I felt in my leg and abdomen. If there’s a buildup of fluid in the abdomen it can affect ISBO and leg lymphedema pain. The swelling results when lymphatic fluid can’t properly drain. The pathway is clogged, so to speak.

Next came vertigo. An Ear Nose and Throat specialist diagnosed the “edema” in lymphedema as creating enough excess fluid in my body to cause vertigo.

My activities of daily living are greatly affected by cancer treatment side effects (lymphedema and ISBO). However, the support of family, friends and groups such as Inspire help me to be my own advocate. I can find the knowledge I need to treat the issues in my life. This support greatly helps the emotional issues that can arise at times out of pain, anxiety, and the physical challenges.

Since compression is a universally accepted practice in the treatment of lymphedema, my personal goal is working with my Certified Lymphedema Therapist (CLT) to find that perfect everyday use maintenance garment, once our reduction work is complete.

My current regimen consists of wearing a CircAid Juxtafit at home, rather than bandages, for reduction. I also use a Bio-Horizon pump, and see my PT for MFR and CLT for manual lymph drainage (MLD). I elevate my legs as often as possible. I do the exercises prescribed by both my PT and CLT.

Additionally, I recently found the Ketogenic diet to be highly effective in reducing inflammation and assisting in lymphedema pain and swelling.

My biggest disappointment in treating my lymphedema is the extreme lack of knowledge about the disease in the medical community. Even recognizing lymphedema is sometimes a challenge to these professionals.

If one is fortunate enough to find a PT and/or a CLT who knows it “ALL”: garment brands, fitting, MFR, and MLD, you’re ahead of the game.

And by educating ourselves and helping each other, we CAN!

Journey on!

Jeannie Starrett
Porter Ranch, CA

I wasn’t officially diagnosed with secondary lymphedema until March of 2017 but my primary care physician (PCP) had made an offhanded comment about the lymphedema in my legs a few years prior to that. I had never heard the word before and I think I didn’t want to acknowledge it at the time, which I regret, but regrets are wasted time and energy.

I underwent abdominal surgery for perforated intestines in 1996 which resulted in my abdominal lymph nodes being scarred and damaged which in turn overwhelmed my groin nodes. The lymphedema had remained “dormant,” so to speak, for sixteen years but started a slow progression in 2012 until finally diagnosed in 2017. At first I thought it was just normal swelling because of the heat and humidity of our area. That’s when my physician started me on diuretics. For a while they helped pull the fluid from my feet but then I started having the heavy leg sensation, better known as “Heavy Leg Syndrome.” My lower legs started swelling at which time the rheumatologist sent me for physical therapy (PT) where my initial leg wrappings began. After two weeks of daily PT appointments my insurance company would no longer cover the treatment. In addition, the physical therapist kept telling me I did not have lymphedema (LE)

For two years I would wrap when the swelling caused discomfort or wouldn’t go down overnight. After deciding that I needed to advocate for myself, I started browsing the Internet and found the lymphedema support group on the Inspire website (www.inspire.com).

It was there that I read about LE treatment with a CLT (Certified Lymphedema Therapist). I asked my PCP to send a referral for lymphedema therapy and then began a six week (5 days a week) treatment course of reduction wraps and MLD (manual lymphatic drainage) massage which moves the lymphatic fluid to my working chest nodes. It was during my therapy that I learned diuretics are harmful in treating LE and since I wasn’t taking them for any other health issues, I threw them out. At the fifth week of therapy, measurements were taken and custom compression garments were ordered.

I was just starting my therapy when the lack of insurance covering my therapy needs reared its ugly head. Insurance covered 80% of the therapy sessions, the CLT, and the stretch compression bandages which were such a struggle to keep up causing us to rewrap throughout the day and overnight. I decided instead to wear Velcro reduction wraps which my insurance would not cover. Once the custom flat knit compression garments were ordered I had to cover that expense as well and they need to be replaced every six months. Make no mistake, LE is a very expensive and time consuming disease to manage on a daily basis.

My lymphedema is at Stage II of three stages and I’m blessed to have had no bouts of leaking lymphatic fluid, infections, or cellulitis. Daily donning of compression garments takes both my husband and I to put on every morning. I wear 30-40 mm/Hg flat knit compression thigh highs 14-16 hours each day. I am able to sleep without compression and pray that continues long term.

Bilateral LE in both legs has completely altered my daily life. Every day is a struggle to accomplish the simplest of daily tasks not to mention the emotional, humiliating, and embarrassing aspects of the disease. The heavy leg sensation and pain I experience is exhausting and makes mobility very difficult. Despite the challenges of this disease, I manage it to the best of my ability and knowledge. I pray every day for a cure so that I as well as others may someday enjoy life as we once knew it.

*I must say I could not manage this disease without the love and support of my husband whose kindness, devotion, and compassion for me knows no boundaries. Thank you to the love of my life! I am humbled by the many blessings in my life.

Lynn Steiner
Gloucester, Virginia