Thank you! I hope you find answers.
Tami, I would be glad to talk to you. I am sending you my phone number through a message on this pain forum. My son is 17 and started dealing with this in Spring of his Freshman year. He is now a rising Senior. This week I have been reading a book called Back In Control by David Hanscom. It has taught me a lot about chronic pain. I wish I had this book 2 years ago to be better educated.
@Tami1987. I can not stress enough to go to highly skilled only. I dont know where your from but if from U.S.A people on this forum like @MikeO can give you good places that deal in testicle pain/surgery everyday. If in Other areas just ask some of old timers on this forum. I cant help i am in Australia. I dont even waste time on Uro’s or GP’s anymore go straight to the top. I feel sad when its children going through this. Tread carefully with surgery. Sometimes modern medicine is not good enough for answers with this.They dont even fully know why we get PVPS or why reversal fixes some. All the best on this journey i feel for your family.
Thanks for your kind words.
Hi, so sorry to hear about all the pain you and your loved ones have been experiencing. I want to know how you guys are doing.
My friend’s little boy had surgery last week for testicular torsion. He will be 9 years old next month. The pediatricians don’t understand why he’s in so much pain after the surgery. Pain meds don’t work. I went to see him tonight at the hospital and my heart broke to see all the pain he is in. The spasms come and go the episodes last around an hour.
I read all the stories above and want to know how you guys are doing. Thank you.
I think it has to be heart breaking for a mother to see her boy go through something like this. We have had other mothers on here whose sons have had to deal with this. It seems like we’ve seen more than one person have issues after surgery to correct the congenital issues that can lead to torsion. Hopefully with time your friends little boy will see his pain fade.
I know it must be heartbreaking for mothers of boys and young men to see them deal with this issue. I wonder sometimes if I had sons, which I don’t, if my wife would have been more hesitant to have me take care of birth control with a vasectomy. There is just not enough awareness of how badly chronic groin/testicular pain can affect a mans life. The amount of pain. It’s shuffled off to the side because it’s somewhat unmentionable and no one wants to hear about it for a variety of reasons. Cognitive dissonance.
Thank you Mike for your kind words and warm wishes for this boy. I agree with you, there’s not enough awareness about chronic groin/testicular pain. My best wishes to you! Thank you for your response.
How long after the event did they perform surgery?
Was there lingering pain from the torsion event or is this all surgical pain?
It takes a while for things to settle down when you mess with them down there so there is hope the little guy will be okay.
I’ll find out more information today. Thank you Mike!
@evelyn that’s horrible and I’m sorry to hear about that poor boy. What surgery was it? Orchipexy?
Hi Mike, 6 days after the event they performed surgery.
We don’t think it’s post-surgery pain, because the spasms are similar to what he was feeling before the surgery.
Thank you we are staying positive, thank you for your support.
Hi, he had Testicular Torsion repair surgery. Both of his testicles were moving up and down. He had an emergency surgery due to one of them getting twisted…
The problems is that the episodes of pain he was experiencing before the surgery are still there. He can go hours pain free but then he gets episodes that can last up to an hour. We think they‘re spasms. The little guy describes them as “tight, something ripping, like my body is getting old and it’s going to explode” meaning in the groin area.
A lot of it it’s repetitive from what I’ve read here: Ultrasounds show nothing, pain mends don’t relieve the pain, pediatricians aren’t sure what’s going on…
Thank you all for your support, we’re staying positive for this little guy.
This sounds similar to what my son experienced 3 years ago at age 15. He turns 18 next month. He had a lot of severe abdominal pain for a week before the pain moved down to his right testicle. They finally diagnosed him with testicular torsion and he had emergency surgery. After surgery he had severe pain, but it wasn’t quite the same as before surgery, except his pain has been constant for a solid 3 years. We are flying to Baltimore tomorrow for some diagnostic nerve blocks of the genitofemoral and illioinguinal nerves under MRI guidance at Johns Hopkins Medical Center. My son has been chasing a solution for 3 years now, and he has been operated on by Dr. Dellon in Townson, Md. and Dr. Parekattil at The Pure Clinic in Florida.He is now a Senior in high school, and we are still trying to find a solution for his chronic, constant pain that gives him ZERO relief, even with medication. His sleep is disrupted and he can not walk aroung for very long. His pain level is a constant 5-6 out of 10 for 24 hours a day. So far no one knows why this happened. I think that testicles are not meant to be operated on and are very sensitive organs. Of course, with torsion you are forced to have surgery or lose the testicle. My prayers go out to your friend’s son. My son had torsion surgery in March 2015. After that I consulted with another pediatric urologist (got no where with this), and by May 2015 I was talking with the Pure Clinic in Florida. If I had it to do over again, I would have consulted with both Dr. Dellon or Dr. Williams at the Dellon Institutes and Dr. Parekattil at the same time and get two opinions. Now we worry that my son’s pain has centralized and that his body is sensing pain when there is no reason for it. Who knows. All I know is I want my son’s life back. My heart goes out to your friend and her son. I also think it is important to involve a good pelvic physical therapist to check things out.Get two opinions before moving forward with any additional surgeries. Another child whose mom is on this board is being seen at the Mayo Clinic in Minnesota. I will pray that your friend’s son’s spasms will settle down. Where are you located?
At 36 years old, I can force myself out of bed, put my head down, and go to work. If anything, I do it for my wife and children. I can only imagine how hard this would be for a young boy and his mother. My thoughts and prayers are with you.
No one should have to suffer like this, no matter their age. Hugs to all you guys!
@SPEDRED Prayers for you and your son! I can’t believe all you guys have gone through. I read your story and was wondering how your son is doing. It’s heartbreaking!! We’re in California, I’m passing all the suggestions to my friend thank you! Best of luck with the nerve blocks. I pray that this is over and he gets his life back as well as you. As a mother, I can’t think of anything worse than seeing your kid suffer. But I will say you’re an amazing mom and both of you are such warriors. Prayers for you and your son.
@Choohooo I‘m learning so much from this forum but I think my biggest lesson is the true meaning of strength. Prayers for all of you!
@Evelyn At the heart of most everyone’s problems is pelvic pain. I read a recent study tonight out of South Korea linking pelvic pain to fibromyalgia and other central nervous system disorders. The scrotum is an incredible place. Few surgeons respect the complexity of this area. It’s much more fragile than medicine realizes. Good luck,
We areinSydney amAustralia and my son has the same problem Help! So many doctors so many specialists no help. This is crazy![quote=“SPEDRED, post:1, topic:763”]
Time for an update on my 18-year-old son who has been dealing with 24-7 right testicular pain since March 2015 after testicular torsion surgery. On Monday he had laparoscopic surgery for an open resection of the right genitofemoral, iliohypogastric and ilioinguinal nerves. Two surgeons were involved. This surgery is similar to repair of hernia surgery gone wrong. We are cautiously optimistic that this has solved his right testicular pain. Right now he is coping with post op pain. Recovery will take time. No lifting over 15 pounds for 4-6 weeks. He Needs to be careful to guard the area while the nerves heal. Time will tell, but we sure hope he will get to enjoy college, which starts in August. Jemima, I will be glad to put you in touch with Dr. Williams. We met a doctor from Australia who was training with the Dellon Institutes for Peripheral Nerve Surgery.