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Chronic testicular pain after surgery for testicular torsion


#1

Hello, my son is 15 years old (sophomore in high school) and has been in constant pain in his right testicle since February 2015. I found this forum when I started researching testicular pain after his surgery for torsion (diagnosed with bell clapper syndrome) in early March 2015. Both of his testicles were stitched down, but only the right side has been in pain from the beginning.
First I want to thank everyone who has been posting and sharing information here. You have been a lifeline for me as I have navigated this nightmare with my son. (I have especially been following Don_H and Acschiro since they are also patients of Dr. P) It has taken me a while to decide to post, but I hope that our experience may help others. My son gave me permission to share his story. Even though he did not have a vasectomy, his story does have some similarities. His surgeon turned us away within few weeks after surgery and told me there was nothing he could do - that we needed to go to a pain medicine doctor. We got a second opinion from another pediatric urologist, and he couldn’t help us either and sent us to the pain clinic. We found the PUR clinic on the Internet, and my son has been a patient of Dr. P since May. My son said that he got about 12 hours of pain relief from his first block in May 2015. We were very hopeful going into the neurolysis surgery in June 2015. My son spent the summer recovering, but no pain relief.
We headed back to Florida at the end of August for cryoablation. Again, no pain relief. Of course, we understood the odds for each procedure, and Dr. P has been great at helping us be realistic, but it is difficult not to hold onto hope. At the end of October we went back to Florida for the botox procedure. For the first 4 weeks, his pain spiked up to 8 out of 10, but since last week, his pain level returned back to 6 out of 10, where it has been since March 2015. Dr. P would like for us to wait a couple more months to see if the botox has helped before we move on to Amniofix.
I know that you guys can really relate what we are experiencing. I am sorry to sound melodramatic, but I feel like my son has been robbed of his life. He was a good soccer player, and he can’t play any sports now. He has to leave school at noon each day to come home to rest and ice. Even when he is at school he has to take breaks to ice. It is difficult for him to concentrate on his school work. He has a lot of trouble sleeping, due to the pain and the muscle spasms that bother him at night. He can’t walk for any length of time. He has a lot of swelling in his right scrotum. He had to cancel taking classroom driver’s ed this summer because he couldn’t sit up for 40 hours in a week. He has been taking gabapentin, meloxicam, and oxycodone daily. He recently tried lymphatic massage - we discovered that his right leg was slightly larger than his left leg. This went away after lymphatic massage. He as experienced debilitating panic attacks, and he has seen an anxiety specialist for that.
Earlier this week our pain management doctor told us that there is nothing more he can think of to help our son, and he sent us away with instructions to get the pain medications from my son’s pediatrician. We are on a wait list for a pelvic floor therapist to have an evaluation. They are not taking new patients until March 2016! My son has been a real trooper and seems to hanging in there as best he can. There are many nights that I have fallen asleep saying prayers for him. The financial toll on our family has been difficult. I am thankful that Dr. P and Dr. B decided to focus their practice on chronic testicular pain. I am so sorry that all of you here have been in so much pain, and I have been cheering you on from the sideline. I would love to share a success story in the very near future, and I hope to read more of your success stories too.
Diana, a very stressed out mom


#2

Diana does he have any other nerve symptoms besides the testicular pain? Numbness tingling in legs abdomen etc. Did he have any complications with the surgery, hematoma, etc.


#3

@SPEDRED Diana, what a heart breaking story. I’m really sorry that your son has been through all of this. I’ve often said that the hardest part of my struggle is that I “chose” the procedure that started it all. Hearing what your son has to deal with at this point in his life is clearly worse. Have you ever had him in to see an endocrinologist? I’m not sure how it works for teens but the lack of sleep and chronic pain can get his hormones way out of whack. This will only worsen his symptoms, especially the depression and anxiety. Similarly, a lot of the antidepressants are very effective against nerve pain. You might want to give that a try. I would also be careful how much “icing” he does. If it’s not visibly swollen, I would take it easy on the ice. Ice on injured nerves can only worsen the issue.


#4

@ChoohoooBJ, no we haven’t been to an endocrinologist yet. We are so worn out with appointments and procedures. I will definitely keep this in mind. We are meeting again with his pediatrician next. I don’t think that there is any contest here - no matter how or when the chronic testicular pain happens, it really is horrible, and my heart goes out to all of you guys dealing with this. It is so heart breaking, and I am especially sad when I read that some of the wives are not very supportive. We are going to talk to his pediatrician about one of the antidepressants. He is icing because when he walks or stands up for any length of time, his testicle swells, and the icing helps for that. Thanks for your thoughts and suggestions!


#5

@SPEDRED he’s got a much different situation than a lot of us with his swelling, etc. I’m relieved to hear you’ve been to the PUR clinic. It’s amazing how unprepared some medical professionals can be when it comes to this stuff. Stick with the people that have the experience. It can get especially frustrating when docs don’t have answers. Heaven forbid it should ever come to this, but always remember cryo storage (sperm banking) is a possibility if more surgeries are necessary. He’s way too young to have to think about that but it would be a good insurance policy. Most of us are fortunate enough to have more kids than we can handle, hence, the vas. It is frustrating to hear about marital issues but I totally get it. I have an amazing wife but it has taken its toll on our relationship. Chronic pain isn’t easy for anyone. Some wives feel guilty and struggle to express it. It can become consuming and I find myself trying to limit my “vas conversations” with her even though I think about it 24/7. It hurts my wife to hear me talk about it because she sees the pain in my life and already hurts for me. She longs for normalcy just like I do. It’s a tricky situation. Good luck!


#6

I am I frustrated father in NE with a 16yr old son, sounds like same thing. I need help!!! Please respond to this message so I know if your still having problem and still on this site


#7

Yes, my 15 year old son is still in constant 24/7 pain in his right testicle - still a lot of cord pain too. Please message me if you want to talk. Right now we have made e-mail contact with Dr. Dellon, but he is out in Las Vegas right now doing surgery. We are weighing our options going forward. Dr. P has suggested conservative approach of 3 nerve blocks to see if he can get any pain relief, but I don’t have much hope for that. He has to get pain relief by taking oxycodone and gabapenton. My son will be 16 in March. This started last Feb 28, so almost a year of non-stop pain. No sports. Only half day of school. No real normal teenage life.:sob:


#8

My heart goes out to your son and family. I’m very sorry. You are talking to the pros on this with Dr P etc. Good. You mentioned muscle spasms keeping him from sleeping. Is he experiencing leg, back nerve pain along with right scrotal pain? Just curious. Pain from there can creep. Get that anxiety and your whole body tension climbs.
Don’t be afraid to have hope with any procedure. those shots are very diagnostic. I had them done just for that purpose.(short lived relief) Helps them distinguish what procedure surgical wise will help.
Nobody should have to suffer with this but he’s to young and I’m sure those guys will do their best to help sort this out.
Hang in there your on the right track.


#9

Thank you for the hope. I don’t think that he is experiencing leg pain yet or back nerve pain, just lots of muscle pain in the pelvic floor.We have been waiting THREE months for an appointment with a pelvic massage therapist. We are meeting with a new pain management doctor on Thursday, and I keep hoping that we can find a source for a nerve block closer to home. Flying to Florida gets very expensive. We are searching for next options. I miss the soccer weekends watching my son play soccer! It is helping us to hang in because of folks like you on this forum.


#10

Hi Spedred, we are having the same kind of problem with our 16 year old son. He had his testicals stitched to prevent torsion on Jan, 12, 2016 and as of now he is still in chronic pain from his tesical area. He is missing school and having trouble walking from the severe pain. The doctor who preformed the surgery says that he should not have any pain and that the surgery was a success . We are waiting for a seconded opinion from another urologist and hope to get some more information. If we could share our experience together and talk about this please send me a message at ftgarofalo@gmail.com

Thanks
Frank


#11

Did any of you get resolution or find out what was going on? My son is in a similar situation with quite a bit of swelling and fluid retention as well


#12

Robin, I am so sorry to hear that your son is dealing with this. We have been chasing a solution for my son for over 2 years, and no doctor has been able to explain what went wrong - why my son was in permanent pain after surgery for testicular torsion. My son still complains that he can feel the stitches holding down his right testicle. He had a surgery in December to sever the perineal branch of the pudendal nerve, which is a peripheral nerve. It didn’t help at all. Next we are going back to see a new pediatric urologist. We want to request an MRI or cat-scan of the area. We are considering exploratory surgery to go back into the scrotum to see if those permanent stitches schools come out. My son still has swelling periodically. I have talked to two other families, and both of their sons got some relief from pelvic floor massage therapy. We tried that this spring, and it didn’t help. Neither of them pursued additional surgeries like we did. Right now I am reading the book Back in Control by David Hascom, which is teaching me a lot about the nature of chronic pain. How old is your son, and when did he have torsion surgery? What are his pain levels? Does he go to a pain management specialist?


#13

I hope you get answers. With Mri,CT,Ultrasound, axray. None found a single thing wrong with my scrotum, cords, or lower abdominal pain. I am PVPS sufferer so two different scenarios but still all scrotum related. I have just had a reversal and during surgeon did scrotum exploration removing my testicles which showed few issues ,leaking sperm, scar tissue, and granulomas. This is a example of scans finding nothing when yes there was issues. I hope you find answers on your journey all the best.


#14

Very interesting. Thanks for sharing your experience. It makes me think that we should just skip to exploratory surgery. I’m sorry that you have been through so much.


#15

Scans aren’t going to show anything. In the scrotum, they really are useless. I wouldn’t even bother. An MRI can pick up a nerve the size of a spaghetti noodle at best. Scrotal nerves are like fine hairs.


#16

@SPEDRED I will prewarn you having testicles removed and checked is no walk in the park. The pain is brutal but sometimes there is no choice. Just make sure you go to someone that has done a lot of testicle stuff not just your normal urologist. There is a lot of idiots ready to take your money be careful ask lots of questions.


#17

Oh my gosh… this sounds just like my son. Is your son still in pain? I don’t know where to turn. Our life and his life has been changed forever. My son is 14 and had exploratory surgery and that is what caused the horrible testicle pain. He then had neuryalis )sp? and orchipexy because his testicle was twisting. Now the pain is different. He was 1 year post op first surgery and 6 months from other surgery. He is
Going to a month long pain clinic this month. He can no longer attend school and can barely walk.


#18

@Tami1987. Why did he have exploration in the start? Did he have testicle pain for no apparent reason? Also you need to be extremely careful going in operation after operation. This is my opinion from my research you need 10 to 12 months to see what changes will work. Also neorolysis is very aggressive thing. Most uroligists are unskilled in testicles and scrotum they promise the world but know nothing. Ask lots of questions make sure the person has dealt with testicle pain and fixed it.


#19

I agree with Loz, until you have something like this happen you generally tend to believe that doctors have all the answers and can be trusted to give good advice on this. @Tami1987, I have the deepest sympathy for your sons situation. He’s not alone in his suffering.


#20

He had exploratory surgery because the doctor thought he had a hernia… but the scans showed nothing. The pain at that time was in his lower abdominal wall. They said they didn’t find a hernia but his andominal wall collapsed. I had never heard of this and they weren’t sure what or how
It happened. He recovered and then went back to activities and 7 weeks post op his world fell apart. He would drop to his knees and kick and cry and vomit with left testicle pain. It was very episodic and would be fine one moment and then be in agony. The attacks lasted anywhere from 5 minutes to 8 hours. We were in and out of the ER almost daily and they would give him OxyContin and other pain meds. The surgeon who did his surgery referred him to the pain area and they said they couldn’t perform a block because of so many nerves and the relief would only last a few hours if they were able to get the right nerves. Finally we went to Mayo Clinic and they we’re the ones that performed the other surgeries. He said someone was taking his left testicle and twisting it. Mayo thought he had a nerve entrapment and also said he may be having intermittent torsion that don’t show up on the scans. They have had him on numerous nerve medications and none of helped. They now have him on cymbalta which is used for nerve pain too… or so they told me. This month stay is a pain rehab that we go to later this month. It’s almost as if he is going to have to deal with this pain for the rest of his life. It’s nice to have someone to talk to that understands.