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Still Having Testicular Soreness/Pain After 4 Years Post-Op Kidney Donation

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possum:
Hello.  I donated in late 2008 and immediately had pain in left testicle.  Swelling and prostate symptoms followed. Today, almost 10 years post op, left testicle is swollen up to about 3-4 times normal size.  I am hoping to get in to a urologist here in Houston asap, but long story short, 1) this should be a disclosed risk (left testicle pain or symptoms seem to be very common after donation), and 2) i chose to ignore it but is has gotten worse, i assume fluid draining surgery is in my future.

jamorris67:
I donated a kidney in Oct of 2018 2 weeks after surgery I had a right side testicle with varicocele and hydrococele.  I was told in all pre op consultations that only the vein, artery, and ureter would be compromised,  never once did anyone exam a testicle, or speak of testicular involvement or mention cutting my gonadal vein.  I am now 6 months post op still experiencing painful testicle, painful sex, and swelling,  my right testicle is 3 times bigger than the right, and being told to wear a jock strap I guess for the rest of my life and on my last Doctor visit was that I would most likely have to have it removed to stop the pain and swelling or learn to live with it.  I am mad as hell and seeking lawsuit at this time.  I was never informed of this and I had I of been I would have never agreed to transplant.  Its an outrage. 

MJG:
Instead of starting a new topic, I decided to reply to this as it is what I am experiencing. I donated a left kidney to my Dad, as I was told it was the preferred kidney. After the operation, the side of my left testicle was sore like I had been kicked. It was also swollen. I was told it was normal and would go away. Now, 5 years later, there is still some pain, but the swelling was much worse. The swelling seemed to get worse if I was on my feet or working in the heat. I was told it was a hydrocele and that I also had an inguinal hernia. It was suggested that the hernia was possibly allowing fluid from my abdomen to fill my testicle. I had both operated on at the same time. The next day, my testicle was as large as it had been. I had read it could take a couple of months for the swelling to go down after a hydrocelectomy. Three months later, I am still having swelling that increases depending on my activities. I went back to the surgeon, and he sent me in for another ultrasound. I was told by a nurse my hydrocele had returned an I would need another operation. I questioned this, and questioned why the size changed. She suggested that maybe lymphatic damage had occurred and said she would ask the surgeon. I just got a call back saying all they could do was try the operation again, and if it was lymphatic damage, then there was not much I could do. So I looked up lymphatic damage from kidney donation. Apparently it is common. So getting another hydrocelectomy is taking a chance that it will come right back. I will still have to stay out of work another for 4-6 weeks (I do physical work) not to mention more scar tissue which adds to the swelling. Very discouraging. Not sure how I will move forward on this. If I were about to donate a kidney, I would suggest the right kidney, less chance of long term problems.

Michael:
I'm so sorry you're going through this. Testicular pain is unfortunately pretty common following kidney donation -- studies report rates from 45% to 55% -- but the pain typically doesn't last for most donors. The cause is ligation (closing off) of the gonadal vein during the donation surgery. That can be on the right or the left side. I've not seen research linking lymphatic system issues with living kidney donation but there's a good chance I missed some studies. (It's a common complication for recipients.)

I'm not sure what to say other than it sounds like you're getting professional medical advice, which is important. What I've read is that this kind of issue is handled by a urologist, so hopefully that's the kind of professional you're dealing with.

Thank you for sharing your experience, and please let us know how things go.

Fr Pat:
Dear "MJG". I'm very sorry to hear of your difficulties. I myself did not have that complication. Although I am NOT NOT NOT a medical professional I will just pass along something I have read from past donors. Some donors have had serious problems of continued swelling of the abdomen (not testicle). When it did not resolve itself as it usually does in donors the doctors found that a lymph vessel had been nicked during the surgery, so lymph fluid was constantly leaking into the abdomen. A donor with that problem was told by her doctors that the nicked lymph vessel could repair itself with time if the donor would follow a certain diet. I don't recall what foods had to be added or dropped. With time (weeks) on the diet the leak healed. So IF your problem is caused by leaking lymph fluid (as the nurse suggested) it appears that something MIGHT be done about it through this particular diet. How they would go about verifying that your problem was due to leaking lymph fluid I don't know. In the case described regarding lymph leak into the abdominal cavity they took a sample of the fluid to see if it had lymph fluid. I don't know if that experience is of any use to you, but I pass it along.

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