My Lipoma Story

January 31, 2012

During the past two weeks since creating my first Lipoma blog, I have received a large amount of mail from many of you with whom have shared similar experiences as I have with our medical system. Thank you for reaching out, sharing your story with me, and I hope we can continue to share, educate, and heal.

I want to share a little bit about me, my condition, symptoms, and experiences. In 2001, I got what I believe to be my first lipoma in my neck, very close to my right tonsil region when depressing in that area. I had a fine needle biopsy with contrast dye, however during that procedure I am certain the radiologist did not get the correct spot as the lump moves quite a bit. There was a negative diagnosis of course and on occasion when I get sick it does flare a bit but does not have the severity of pain that my other areas have at this point. It sometimes feel my throat is closing off and then becomes very alarming.

From 2001-2006 I was very active  and was in the Health and Fitness industry.  I hold multiple certifications as a Trainer and Wellness Coach and hold certifications in nutrition, so if any of you do need help on that front, feel free to ask.  In fact, my specialty area is/was obesity and I worked with thousands of men, women, and children helping them to enhance their lives with exercise and nutrition programs. A very prominent Endocrinologist in San Diego also used to refer his patients to me for after care after they had worked with him.

In 2004, I noticed lipomas forming on my left tricep area as well as on my right arm just above the elbow. Both were severely painful as they depressed on nerves and effected both my work outs and when I used my hand for writing. In 2004 I was with a good insurance/health group who referred me to a Hand Surgeon specialist who examined the masses and determined we should wait a bit and see if they continued to be painful or if they would go away with some lidocaine treatments. In 2006 I returned to see that doctor when the lipomas grew and also noticed getting about 8 behind my knee areas about the size of quarters.

During this time, I also went to see the endocrinologist because I was convinced that something had changed in my body where I was having a VERY difficult time with losing weight. Keep in mind, I was on a very healthy diet and exercise regimen and was very frustrated with my inability to get the weight off working out 2-3 hrs per day.  Upon many tests (thyroid, diabetes, etc), he suspected with great confidence that I had a LEPTIN disorder. Leptin is a protein hormone made by adipose, or fat tissues. The more fat tissues there are, the higher leptin levels get. Leptin signals the hypothalamus to decrease the appetite. It has other roles too, such as in proper development of the body. He determined that my body was not producing adequate levels of leptin not allowing my body to process and/or break down the fat properly. Unfortunately  there were no clinical trials going on to determine what treatment could be done. His suggestion was do continue o with a low fat, high protein, low carb diet and that I would probably need to exercise more than the average person to lose weight.

In 2006 I went to see the aforementioned hand surgeon and had the two painful lipomas in my left tricep and right arm removed. Upon removal, I immediately stopped having pain in those areas. I have just recently summoned the pathology reports and notes from that doctor to see the exact pathology notes and to prove yet again to my current insurance group and doctors that I do, indeed have a history of these, despite their continual insistence that FAT IS NOT PAINFUL and that I DO NOT HAVE LIPOMAS!

In 2009-2011 I began to get more masses that started to become painful. These are most notable in my lower left back, upper thighs and lower thighs, hips, groin and again behind my knees. There are a few small ones on my arms as well. The ones in my back and legs create ongoing dull and often stabbing pain which pulsates and radiates from the back into the groin, into the ares on my legs. I know this sounds like a sciatica but it isn't. I went to see my primary at my new inclusive insurance/medical group (won't name names at this time). She seemed to agree that they may be lipomas. She set an appointment with me to see a Physicians Assistant who handled these. Upon finding out who the apt. was with I rejected the apt. and demanded that the referral be made to plastic surgery. After debating with them for over two weeks they indicated they would not see me in plastic surgery  (cosmetic) and would try to get me to see someone in general surgery.

In late 2011 I went to see a General Surgeon (young female) who was the most outrageous doctor I had ever met. She was rude, completely dismissed my history, and told me I had generalized fat and that fat was not painful. She insisted that I needed to exercise and the fat would go away. I asked her what she knew about lipomas and that I didn't think she understood my situation. I later filed a complaint against her for her lack of open mindedness in even being willing to look into what I am saying vs. dismissing my complaints of pain and the lipomas given my previous history of them.

I should mention, as I have in my bio, that there is an apparent paternal genetic disorder of these lipomas running throughout my family. My father has had over 500 of these removed from his body since 1983 and has hundreds more. My brother has them, my uncle and two male cousins have them. Mine appear to be the only ones that are painful.

I have tried since to get in to see this General Surgeon's boss, the head of general surgery but he has refused to return my calls and doesn't seem to have appointments open. At the beginning of 2012, I recommenced the push with my primary doctor to get me in to the right person. I went back to see her and complained of the pain I was having. At this time, I had started to do more research on the web, came across the MDJunction forum as well as other Lipoma forums and read a lot of white papers and research being done. I have also always sought out any Lipoma Clinical Trials, but my timing has never been good in finding one in my area.

I came across the name of an Endocrinologist MD and PhD in San Diego (outside of my current plan) and began reading some very enlightening information. She appears to be one of only two doctors in the United States who may actually be aware of "painful fat". She happens to practice in San Diego (where I reside) and is affiliated with UCSD Medical and the VA. The other doctor is based out of Mass General on the East Coast. I highly encourage ANY of you who may THINK you have painful lipomas to review her website at www.lipomadoc.org. Please keep in mind that she gets 1,000 of emails and calls from people like us and she does run a practice so be respectful of her time and do all of your research first. Make sure you read up and understand the various type of "painful fat" there are out there: Dercum's disease,  familial multiple lipomatosis (FML), Madelung's disease and lipedema (and lipo-lymphedema). Each of these are distinctly different and she explains this on her web site. Additionally, under the "MORE" section of her web site where it says Video and Radio, I encourage you to listen to all 3 of her videos (especially the one on Dercum's - third one down) and TAKE NOTES.

As I mentioned in my first blog, EDUCATION is key! Not only educate your self so that you can be your own advocate, but you must take these notes to educate those who are not hearing your complaints. Bring in a copy to your doctors and tell them to read it, document that you gave it to them and ask them to communicate with these specialists to help you find out what is going on.

I recently walked right into the Administrator's Office at my health plan/medical group without an appointment and filed numerous complaints and sat down with her and had a frank discussion about my healthcare and my poor experiences with the doctors. Being a thorn in their side to get them to pay attention to what I am saying may sadly be what is necessary to get the referral I need. Trust me, they don't want law suits, but you must be persistent and do NOT roll over if they have deaf ears to your pleas for help. Do not suffer. Please don't be quick to self diagnose. I still cannot say for sure that I have any one of these disorders, but I will bet that all of my issues with leptin, weight management, the masses, the lipomas, and the pain are ALL RELATED. Getting your case in front of the RIGHT person and or doctor who will listen, research, and advocate for you is KEY and critical to getting you the treatment you deserve. We pay good money for our healthcare (at least I do as an independent insurer) and I told them that if I have to go out on my own, spend thousands of dollars to see this specialist and if I get diagnosed with something when they have been telling me I have nothing they will not like the outcome.

As of today, I have found a doctor at my group who is an Endocrinologist who actually knows this outside specialist who I pray holds the key to getting me this outside referral to see her so that I can be diagnosed properly.  I won't bore you with the past two weeks of MRI's they had me do despite my INSISTENCE that the MRI would not show anything. I fought to have an Ultrasound done which can sometimes show Lipomas, but the Radiologist insisted I was wrong, even though the outside specialist is the one who told me that the Ultrasound is the only scan that may show them from her experience. Mind you, this is the ONLY area she specializes in so she is a true specialist in this field.

I will keep you posted on my status  later in the week.

To be continued......

To Your Health,
SDLipomaGirl