Lipodystrophy and Women: A Beach Ball on Sticks

May/June 2004

This article is part of The Body PRO's archive. Because it contains information that may no longer be accurate, this article should only be considered a historical document.

Lipodystrophy and Women: A Beach Ball on SticksWhen HIV enters a woman's life it is accompanied by so many thoughts and fears. We think about loss. We think about dreams that we fear will never come true. Will I have children? Will anyone love me? Will I grow old? How will this virus affect my body and my beauty? One learns over time that many of our hopes and dreams can still be reality. Yet the physical changes will likely happen ... or will they?

Society programs us as little girls that we need to look like the models in fashion magazines and actresses on the movie screen. Early on we become convinced that something is wrong with us if our breasts are just A cups or our hair looks like a fur ball that the cat just threw up. As teens, young women and adults we believe that we have to be thin and perfect just like those women. We grow up with an image of how we should look, but the following are some real facts regarding American women:

  • The average American woman is 5'4" tall and weighs 140 pounds.
  • The average American model is 5'11" tall and weighs 117 pounds.
  • Most fashion models are thinner than 98% of American women.
  • Four out of five American women say they're dissatisfied with the way they look.
  • On any given day, almost half of the women in the United States are on a diet.

Marilyn Monroe would be considered fat by today's standards. Her size fluctuated between 14-18. Many women suffer from body dissatisfaction and diet relentlessly in pursuit of thinness and acceptance. Eating disorders develop, low self-esteem occurs and before you know it BAM you're with a man that smells bad and has no teeth. We equate self worth with how we look or how someone tells us we should look.

So you think that all of this is bad enough? Well put HIV on top of it. Women with HIV go through so many emotions. HIV can make us feel ashamed, ugly, dirty and unwanted. If you had negative feelings about how you look it can really make you dislike your body more than you may already. I know this because, most of my life I have struggled with my weight and appearance. I bought into the magazines that I read and believed I was supposed to look that way. When I discovered I was HIV-positive it did not help the situation.


What Is Lipodystrophy?

In 1995 I began taking the protease inhibitor Crixivan (indinavir). Within a few months, I started noticing body changes. My breasts were getting larger (I thought alright ... finally!), but my abdomen was also getting rounder and my legs and arms were becoming thinner. Enter HIV and The Beach Ball On Sticks ... otherwise know as my version of lipodystrophy syndrome. Lipodystrophy can cause fat loss, fat deposits and metabolic changes. Fat loss occurs in the face, buttocks (loss of shape), arms and legs (prominent veins). Fat gain or increase occurs around the abdomen, breasts (in both men and women), on the back of the neck (the buffalo hump) or lipomas (fatty growths in different parts of the body). Metabolic changes can be defined as an increase in lipids (fats) in the blood, which include cholesterol and triglyceride. These changes can lead to increased risk of heart disease. Insulin resistance may also develop which prevents the body from efficiently metabolizing the sugar (and you know we women love our sugar). Insulin resistance can lead to diabetes.

The debate is ongoing as to whether women are at more risk for lipodystrophy syndrome than men. We do know that women are more likely to experience increases in breast size and overall weight gain than men. We also know that fat loss in the face is more common for men than women. Women who experience increase in breast size rarely find this trait to be a good one. It is not like getting some rounded, perfect implants. The gain in the breasts are usually as unpleasant as the gain in the abdomen. The fat forms behind the muscles around the organs and is not soft but rather hard and very uncomfortable deposits.

What causes lipodystrophy? The cause is multifactored. The current theories are as follows:

  1. Taking HIV drugs (while lipodystrophy has been seen in people taking almost any type of HIV therapy, there are theories that some protease inhibitors may be involved in fat gain and certain nucleoside analogs may be involved in fat loss).
  2. The length of time you are on HIV drugs (approximately 10% of HIV-positive people develop fat redistribution symptoms within the first two years of treatment).
  3. HIV disease itself (some HIV-positive people who have body composition changes have never taken HIV drugs).

What Can I Do About It?

The next question we ask is what can I do about it? Will these changes in my body occur? Can I stop them, slow them down or reverse them? I believe that it is possible to make progress on this issue. I say this from my own personal experience and from the current research out there on ways to address lipodystrophy. (See "Managing Metabolic Syndrome" and "Diet and Lipodystrophy.") Everyone is different and may experience different symptoms of lipodystrophy.

What we need to recognize and accept is that women come in all shapes and sizes. We need to be realistic about what our bodies look like. Remember that the average American women is around 140 pounds and 5'4". I come from an Italian family of wide hips, skinny legs and big butts. Even if I work on shaping these body parts, there is always my genetic build up that tells me, hey girl, be happy with who you are. So that being said, we know that we may be able to treat some of the metabolic complications such as increased cholesterol, triglycerides or glucose levels by switching HIV drugs or by taking lipid-lowering medications. The body composition changes are harder to address. The following described methods are currently being tested and researched:

A human growth hormone called Serostim is currently being used to treat fat gain that is identified as visceral adipose tissue (this is fat that surrounds the organs rather than fat under the skin). It has been shown to decrease excess fat buildup and increase lean body mass. It also specifically responds to the abdominal fat and fat pads on the back of the neck. It can, however cause fat loss in the arms, legs or face.

An anti-diabetes drug called Metformin has also demonstrated effectiveness in reducing abdominal visceral fat and insulin resistance.

An experimental treatment using anabolic steroids for the treatment of lipodystrophy is underway. Anabolic steroids are currently used as a standard treatment for HIV related wasting syndrome. Steroids may disguise the visible signs of lipodystrophy rather than stop or reverse loss of fat tissue.

Niacin is a B vitamin being used to treat metabolic and fat disorders with some encouraging early results. Recipients of this therapy have shown reductions in intra-abdominal fat associated with an increase of good cholesterol called HDL. There are many side affects associated with the high dose of Niacin being administered and not everyone can tolerate this method.

Liposuction, a cosmetic surgery procedure can be used to remove fat from the back of the neck and around the breasts. Liposuction cannot be used as a solution for abdominal fat because this fat forms around the organs rather than under the skin and the procedure is considered to be too risky. Liposuction is usually just a temporary solution and more expensive than most of us can afford.

Exercise and Diet

Here in America, we always want a quick fix. Give me that pill to cure my weight problem, my cold, my breast size or my sexual drive. Not everything is attainable without some hard work, commitment and dedication. In 1999, I was a pasty blob of 5'7" and 200 pounds. I was very unhappy with my body and how I looked and felt. I would look at myself in the morning and feel a sense of disbelief of how I looked. My breasts were heavy and out of shape (not the usual perky 36 B cup), my stomach was hard and resembled a 6-7 month pregnancy stage (except that I knew that would have to be the second time that immaculate conception occurred) and my skin, nails and hair lacked luster and vitality.

I made a conscious decision to take control of my life. I was determined to not allow this virus to run rampantly through my body, destroying not only my physical appearance but in addition my sense of humor, my confidence, my love for life and my energy to tackle whatever was most difficult. I made the decision to attack this virus and what it had been doing to me physically and mentally since 1990. If I could live through the death of a husband at 25 and watch dozens of young friends suffer and die I could do this. It was time that I started living again.

I am fortunate to have a very good gay male friend, who resembles a Greek god. He supported me throughout this process and helped by encouraging and teaching me what I needed to know. I had been reading about exercise and nutrition and its benefits. I was ready and motivated to start this change in my life. I started by learning how the foods that I put in my body react to my metabolism and the facts of how I could balance my diet for life and gain back the person I remembered from years ago. I began a workout regimen that consisted of 3 days of resistance (weight) training per week, which I performed with a set of rusty used weights on my coffee table. I also began walking around my block, getting my heart rate going for 20 minutes 3 times per week. I then began eating 5-6 small meals per day that consisted of a lean protein, carbohydrate and a vegetable. I reduced the amount of saturated fat and increased my intake of water. Within one week, I could tell a difference in my energy level and how I was feeling both physically and mentally.

Every Sunday I began making a big meal consisting of anything and everything that I craved (pasta with cream sauce, crunchy Italian bread and a rich sweet chocolate cake) and inviting my friends over for dinner. After the meal my friends got to take home all of the leftovers. I was careful not to deprive myself of the cravings that I had and used these Sunday dinners to satisfy those cravings. I noticed that as I lost weight and became healthier these cravings were reduced. I instead began to crave good healthy foods like fresh vegetables and fruits.

Today, I continue to eat healthy, exercise and weight train. My schedule consists of 3-5 days of working out at the local YMCA. I still combine the cardio and the resistance training. I eat healthy except for the occasional downfall of chocolate or sweets. I lost a total of 50 pounds and drastically changed the shape of my body. That's how I turned the beach ball on sticks into the basketball on bats. The biggest change that I see is my attitude. I am confident, more pleasant to be around and happier with not just life but who I am. I know that I have the power and confidence as a woman to succeed in this world. I feel and look good, and most of all I will beat this pesky virus called HIV!

HIV no longer means death. HIV no longer means that as women you cannot have a relationship or children. You can take control of HIV and what it does to you physically and mentally. There are many ways to learn about how to take care of your body and make changes or prevent these changes from occurring. Talk to other HIV-positive women, get support, speak with your doctor or consider attending an HIV and lipodystrophy forum offered at many AIDS service organizations and conferences. The Internet can be an excellent source of information for new treatments that are on the horizon. If you are ready to make changes and feel better then start off slow, at your own pace. Remember that we are all different and HIV affects each of us differently. Most of all find a way to be happy with you.

Barbara Marcotte is a Treatment Education Coordinator at Test Positive Aware Network.

Got a comment on this article? Write to us at

This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
See Also
What Did You Expect While You Were Expecting?
HIV/AIDS Resource Center for Women


The content on this page is free of advertiser influence and was produced by our editorial team. See our content and advertising policies.