FSGS & Extreme Edema

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Posts: 1
Joined: Sat Dec 15, 2007 11:48 pm
Location: Los Angeles

FSGS & Extreme Edema

Postby weedheaded » Sun Dec 16, 2007 12:01 am

I was recently diagnosed w/ FSGS. I currently weigh about 40 lbs. more than my normal weight. I just started steroid therapy this week, and I take Lasix and also meds for thyroid, cholesterol and high blood pressure.

My main concern is the swelling of my scrotum. The swelling of the feet, ankles, calves, knees, thighs, hips, and stomach I can deal with. But my scrotum has swollen to the size of a large grapefruit. I can't walk normally, I can't sit down for any extended period of time, I can't sleep comfortably. It presents all kinds of problems.

My doctor doesn't seem overly concerned about my scrotum. He said all the weight will come off gradually, maybe 2-3 months (I gained it in about 1 week) and that my scrotum will progress at the same rate. I don't know what I'm going to do if that's the case. I can't go to work like this. I went out this morning and bought an XL jock strap, but the problem is the waist is way too wide, and the part that actually holds your sack is way too small. I'm thinking about asking my friend Sally to take two of them and sew it into one super jock strap.

All kidding aside, though, I would appreciate any suggestions, advice, or even just related experiences from anyone who has gone through something like this before. Thank you. God bless.

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Dr. Chan Lowe
Medical Doctor
Posts: 4069
Joined: Fri Dec 08, 2006 3:35 pm

Re: FSGS & Extreme Edema

Postby Dr. Chan Lowe » Tue Dec 18, 2007 10:58 pm

Hi Weedheaded,

This can be a difficult situation. Your doctor is correct that the best way to correct this is slowly. Rapid removal of large volumes of fluid can cause dramatic and dangerous problems with electrolytes and other body systems. The trick is managing the swelling until it resolves.

The excess fluid is basically gravity dependent so it will tend to collect in areas that are lower, such as the legs and the scrotum. It may help some to try to elevate your scrotum while you are lying flat. This can be done with pillows. While standing, if you are not able to find a supporter you may be able to make one that will work at least a little with some gauze wrap (commonly called Kerlex) that can be obtained from your local pharmacy.

Follow up with your doctor is important.

Best wishes.
Advice and opinions given are based on the information provided and must not be considered an official medical recommendation. The limitations of the internet prevent an appropriate evaluation. Always consult your doctor if there is concern.

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