Has anyone had Microsurgical Denervation?

So sorry to hear g his Paul it seems the treatment in the UK is rubbish .I am going to ask about that procedure tomorrow .Howard's doctor sent me a very good article that he has written if you send me your email I will forward it to you .I wanted to know how bob had recovered from his detonation operation but he hasn't responded .I want to help my son but scared incase it gets worse after surgery .

HI Paul,

I suffer from the same problem as you. I live in Canada. What has helped me greatly has been Botox injections every 6 months into the epididymis. I don't know if it is available to you in the UK but it is worth checking into. Also when my pain gets really bad a take Percoset which helps a lot. I am considering the MDSC procedure but so far these other simple things really help. Good luck. Howard

Hi Howard,

Thanks for your reply. I will mention it to my GP this week. It really is ridiculous the way we have to become medical experts ourselves to try and find a cure for this disease. At the moment i'm not sure whether to stick with pain management, go all out for denervation or just try and get my over active cremaster muscle sorted out. The pain is annoying but the tight retracted testicle makes me feel like I have no balls and I struggle mentally. I would say that it doesnt hurt much at all when the scrotum is relaxed but only seems to give me pain when it rides up and becomes retracted which happens during every bowel movement or when I have anxiety.. It could be a case of getting the cremaster resected and my problems will be over or maybe anti anxiety drugs can stop it pulling up. I dont even know if denervation would stop the cremastic reflex at all so dont want to have it for nothing especially as its my only testicle.

Pauline you're right the treatment is very poor in the UK. Denervation is probably only done literally as the last resort before orchidectomy and it looks like that Harley Street Clinic is the only one that does it so expect to pay at least £5,000 plus its a real pain to get to. I wouldnt be surprised if 90% of urologists here even know the procedure exists.

Im not sure if I have the same pain as your son but 5 years ago I almost always had a tight and drawn up swollen testicle. Once I went gluten free and had some physio it is now only painful and retracted in the mornings and when I need a bowel movement. Constipation and poor bowel function really effects the testicles and prostate so it wont hurt for your son to try going gluten and even dairy free. Before I made these changes I was constipated, and therefore in constant testicular pain 24/7 while simultaniously trying to come to terms with losing my healthy testicle through misdiagnosis. I was very close to suicide at this point so if I'm still here then your son can get through this too. He will get through this ordeal.

All the best

Hello Paul - Actually it is a coincidence that you mention the cremaster muscle being stuck in the "up"position. One thing the denervation procedure does is to cut the nerves going to this muscle so it does not retract the "balls" during sexual excitement. This was one of the reasons (silly really) that I've held off getting the procedure. After all - no one would notice! But in your case it sounds like it would actually help you with your problem. No one should have to suffer like this in this day and age. Good luck. Howard

Paul , when you go to the GP ask about Flomax .Howard's urologist Dr Kovac suggested it to me for my son .He said it could relax the scrotum .

Hi Pauline,

Thanks for your message. I've tried flomax before but its more for the prostate than testicles. It does relax the pelvis but causes some very weird side effects such as dry ejaculate and a really stuffy nose. It wasnt something I wanted to take long term as it significantly reduced my sex drive, and to be honest it hasnt really returned and that was about 3 years ago. Maybe thats down to depression and low testosterone though. I've just booked an appointment for early next month with Dr Johann Emmanuel at hertfordshire pain consultants who according to his website performs pulsed radio frequency denervation which seems a bit less extreme than the surgery, not sure how effective it is but he seems to specialise in genital pain. Its amazing how quickly you can see a consultant when you self pay but on the NHS I had to wait around 10 months! By the way I messaged you my email address for the Dr Kovac thing.

Thanks,

Paul

Good for you .Im going to see if they can test my son , he's only 16

Hi Paul, I received my appointment through the post today for the pulsed radio frequency denervation, the appointment is not until August, that is six whole months away. 😦

I'm also still waiting for my varicocelectomy appointment to come through, the NHS is absolutely awful, they don't know anything, and they don't care.

Funny you should mention about your pain/ache gets worst after a bowel movement, mine does too, this is normally due to straining of the varicoceles. Its like when you have a ultrasound scan and the radiographer asks you to push down/strain to see if any veins swell and show up on the scan, the same happens during a bowel movement, the blood swells any potential varicoceles as you strain, its like a drainage problem.

I believe my pain problem is either my varicoceles, or my epididymis (2x cysts), or a hernia that has been missed.

Paul, Do you get any leg pain with your testicle pain?

That's a shame the pulsed radio frequency is so far off, but I'm still pleased for that it's on offer.

I've started to get pain going down my legs, which seems to run down the back of my right buttock, right thigh and calf.

Since December I've started waking through the night and feeling extreme pain in between the top of my buttocks. It's like a hot knife is being pushed into the area, I also feel pain deep in my right buttock, almost like a deep muscle spasm.

Pauline to keep up up-to-date, I'm not going back to see Mceleny, this follows him suggesting my problems related to my spine and a recommendation to see a spinal consultant. On this advice I elected to go private again under the Nuffield and had high hopes it was my back. The spinal surgeon said during the initial consultant that he could tell it wasn't my back, he was taken aback that I'd been referred by Mceleny. He recommended I get a MRI in order to prove this, which I did and he was absolutely right, there isn't anything wrong with my back. He said that if I felt the pain is coming from my scrotum or near that area, the pain will indeed be coming from that area and that I needed to go back to urology. I made a point of saying to the consultant that I wouldn't use their urology services again.

The spinal consultant did suggest I make an appoint to see a rheumatologist and immunologist. The concern right now is why I'm getting burst blood vessels in my eyes as well as the genital skin issues.

So I have a rheumatology appointment booked for this Friday and fortunately my NHS genital skin dermatology appointment early next week.

I've started to notice that my right arm pit is starting to smell during the middle of the day. I've never had this issue before and I'm starting to think this is connected.

Hi mate,

My pain is centred in my groin and epididymis but does radiate down my left leg. It was worse before I got an automatic car. It’s a strange phenomenon but usually an hour before a bowel movement my scrotum will tighten and become very painful but shortly after I go to the toilet the pressure will finally be relieved and it will start to hang normally again. This is my biggest problem, hyperactive cremaster muscle. I’m pretty sure I dont have a variococele as I’ve had around 4 ultrasounds and an MRI scan in the past 6 years and they never find anything apart from a small epidydimal cyst. I also suspected a hernia so I paid £3,000 for an exploratory surgery as a consultant I visited was sure I had a hidden hernia missed by the ultrasound but he was wrong. Then I had a lloyd release procedure as professor lloyd in Leicester seemed to think I had inguinal ligament damage. Neither surgeries found anything wrong or made any difference. Hernias generally show on ultrasounds so I wouldn’t go barking up that tree just yet. I’ve had physios, chiropractors, acupuncture, prostate draining, dieticians, pretty much every antibiotic around, you name it I’ve had it, I could literally write a book about this condition (I’ve seriously thought about it as well). The ONLY thing that has helped me substantially is going gluten free as it has made my bowel movements easier.

Are you having your pulsed denervation on the NHS or privately? And which hospital are you having it at? I’m very interested in getting it done as well in the hope that it will relax the cremaster muscle but if it doesn’t I may try and get the cremaster resected. Obviously anything I do has added risk because I only have the one testicle remaining and hope to have children one day. I do have a list of supplements which have been known to help if you would like me to post them on here, maybe they will help some of you guys out?

Hi Jim,

Maybe the blood vessels and skin issues are stress related? Or possibly completely unrelated to your scrotal pain. The pain in your buttocks could be related to the pelvic pain you've got though. There's a book called "a headache in my pelvis" which Ive read and judging by your list of problems it may be worth checking it out. All the best mate, I hope Nuffield can help you out, its a nightmare being pushed from pillar to post with no doctors wanting to take control, they always want to pass you on to someone else. Very unprofessional but I suppose they must get frustrated as well.

cheers

Paul

I also have the same lower back, leg pain you describe. It was diagnosed as the sciatic nerve being inflamed by my scrotal problems. For me this past year the best solution has been a Botox injection into the spermatic cord region. This prevents the nerve pain from migrating into my left lower back and then to my hip where it triggers the sciatic nerve down the leg where the pain would immobilize me. Also I take Percoset (5mg) which stops me from perceiving the pain with almost no side effects.

I'm not sure Paul, it's an odd one with my skin. The skin issue is manageable right now, certainly not as sore as it had been over the middle of 2019. The skin cells around around my circumcising scars seemed to become sore in May 2019, at this time I'd been on and extended course of ciprofloxacin. The head of my penis around the corona become more sensitive to touch. The remaining foreskin and head of the penis seem to dry out.

The likelyhood is stress related, I do battle with anxiety at work and stresses within the relationship.

You should ask your doctor about low dose prednisone (5mg) to clear everything up. I use it from time to time and it has helped me.

I'm not going to have to jump through fire engulfed hoops to get this am I?!??

GP's in the UK can be less than forthcoming.

I guess it never hurts to ask. I went to 3 doctors before I found one that agreed to write me a prescription for Percoset which is an opiod. She said as long as I was careful with it, it was far better than undergoing all the procedures my urologists wanted me to to treat my scrotal pain. That was a year ago and she was right! So you never know the response. Maybe just tell the doctor you want to try it for a few days (the prednisone) to see if it helps so you just want 5 (5 mg) pills.

I think you're right about not suspecting a hernia, my issue seems related to inside the testicle at the head of the epididymis, this is where the pain is.

For example... When my testicle is not hurting, all I have to do is accidentally knock/catch myself at the top of the right testicle and I will feel instant pain, the pain will then soon start for the rest of the day, the pain goes down my leg and into my foot.

When waking up in the morning I generally don't have any pain at all, but as soon as I get dressed and then sit down to have my breakfast, the pain then starts, its because the seam of my trousers or jeans will rise up and press against my testicles, this then sets the pain off.

If I didn't bother to get dressed and stayed in my briefs all day I wouldn't get any pain, so it seems when something presses against the head of my epididymis it triggers the pain, this is where I have 2x epididymal cysts (2mm in size). It stands to reason that the cysts are the problem, or I have some sort of blood drainage problem that effects the epididymis (the varicoceles).

I have two pairs of stretch jeans that I can wear that don't trigger the pain, they are cut longer in the crotch area (this must help). But, all the other pairs I own, such as jeans, trousers and chinos, they all trigger the pain (even new ones I buy).

It seems they are made/cut different. which presses against my testicles. I know this sounds ridiculous, but its true, everyday is a living nightmare for me, I just want to be able to wear clothes without being in pain.

This is obviously completely off topic and apologies in advance. For a while not I've been experiencing odd deep tingling in my spine, which traverses up to my neck. I initially thought it might be medication, but I've come off pain meds for a prolonged period and I'm still getting the sensation. I wouldn't class the feeling as pain, more an intense itch or tickle which feels deep. I also get the same feeling in my front midriff.

I've mentioned on here that I'm booked to see a rheumatologist this Friday, so I'm hopeful of some information.

Could this be my nerve endings completely messed up?

I'm naturally concerned the problem is spreading.

Hi Howard, Is Dr Kovac still in operation, I ask because I've emailed Dr Kovac and also messaged him on fb, but I've had no reply. I originally emailed him back in January,.

Hi mate,

I have a skype appointment with Dr Parviz Kavoussi tomorrow and he offers a cremaster muscle release procedure which can apparantly ease the pain for those of us with hyperactive cremaster muscles. As I've mentioned before, I only ever experience pain when my cremaster pulls my testicle up towards the body so I'm hoping he can help or at least give me some advice to pass on to a UK based urologist who can perform the operation. He's based in Austin Texas but might be worth contacting yourself.

thanks,

Paul

Yes - I just had a correspondance with him 2 weeks ago. It was actually about the cremaster muscle and how the MDSC procedure affects that muscle. He did confirm that that muscle is cut in aggressive procedures so the balls will not retract during sex. I would try him again as he is usually very good about a prompt response. Maybe even phone him and leave a message to look at your emails. Let me know if you still have problems and I will send him a note to look for you.

Hi Howard,

A few days ago I had a Skype consultation with Dr Parviz Kavoussi and I was very impressed. He offered to perform his cremaster muscle release surgery on me but it would obviously involve me flying to Austin Texas. Yesterday I had another consultation with a UK based urologist who also offers a cremaster release surgery which he said is actually called a cremasteric myotomy and has performed many times before. He said he can cut the muscle fibres which cause the retraction so I think i'm going to have surgery with him, hopefully in a few weeks. He did say that it may not cure my pain but as the pain is secondary to the retraction it should help. I have cancelled my appointment with the pain specialist for now. I will update after I've had my surgery.

Sounds like a good plan Paul. Please keep us informed. Have you googled any forums on " cremasteric myotomy" just to better understand what is involved? I always do that now even when it comes to drugs. Good luck.

Hi Howard,

Yeah, there's not much info on it online and there wasnt even a price for it on the system when the doctor was trying to give me a rough idea of price. In the end he said I'm looking at around £2,500 but I havent got a full breakdown of the price yet. I just hope it works. There is a document from the BAUS on surgery for testicular retraction which he showed me but hus technique will be slightly different and won't include orchidopexy. I'm a little bit concerned that the dartos muscle will still pull up even without the cremaster but he reassured me that wont be a problem. I just hope the surgery goes well, I'm fine living with mild pain there permanently, it's just the retraction I find so difficult to deal with. I'll let you know how it goes.

Well all this self isolation is nothing new for me, I cant go out most days anyway due to the testicle pain I have.

How are you getting on chap?

Seems to have gone quiet on here, I guess all routine stuff is off the table.

We have had a big disappointment recently .The urologist We saw for a second opinion said my son was an ideal candidate for denervation surgery and he would refer us back to Kevin McEleny the expert in this who we have already seen .He had offered surgery then withdraw the offer after my son had seem the pain management team .He has again refused to see my son wont even talk to us about why the surgery isnt suitable or discuss other options. The urologist we saw for the second opinion has been had the decency to tell us this option is off the table we only found out by ringing to ask as it was the 3rd of Feb when we saw him .The level of care is atrocious.

Pauline: If you cannot get a prescription for Percoset for your son, ask a doctor for a sample to try. Even one pill would be a great help and doctors are usually happy to give a sample.

My Botox injection has worn off from 7 months ago and I was scheduled for another one in 2 weeks but now it has been delayed indefinitely with everything going on. The only way I can function now is one Percoset pill every 24 hours. After one hour all the pain is gone. I hope you can get a sample pill to try. If we were nearby I would give you one to try. There are no side effects for me other than happiness.

Hi I will ask but don't hold out any hope .The GP cannot prescribemuch and the pain team who can are hopeless and dont care .He's been terrible today .Sometimes it's so bad hes very angry and I feel I cant take it anymore .

We are the same we have no life anyway .

Do you know anyone taking Percoset who might loan one pill?

No .In fact I hadn't heard of it .

Hi Pauline,

Does anything work at all? Even in the slightest to relieve his pain? Is he in constant pain at the same level throughout the day? Pain for chronic epidydimitis is usually reduced (or made worse) from bowel movements, urinating/ejaculating but hot baths tend to be the most effective in relieving pain and reducing inflammation in that area.

I suspect they are refusing denervation surgery due to his young age and the tendency for the pain to resolve on its own. Plus it is quite a big procedure to have with all kinds of risks and doesn't always work. There is always the option of going private though which will cost around £5k. Or you can contact PALS or the NHS commission group for where you live. Obviously at the moment things are going to be very slow moving forward.

Keep us updated, feel free to email me, if there's any way I can help I will.

thanks

Paul

Pauline:

See if you can get some Ativan for your son. For some reason, it is the only thing that relieves my pain. Good Luck and let me know if you have any questions.

Bob

Pauline:

One other thing to try is antibiotics (in specific a 2 week course of Cipro). The doctors think I might also have Prostatitis. Every time I go on Cipro, I am almost normal after 7 days. The problem is that when I stop, I slide right back. It might though give you another avenue to investigate and some hope. I would be happy to answer any questions.

Bob

Hi buddy, I'm hanging in there. I've had lots of pain this past week, I cant help but think this pain is most certainly these varicocelces that I have, or its a bad flare up of epididymitis that has never cleared up. I'm still waiting for varicocle surgery, seems I'm going to be waiting even longer because the state the world is in at the moment... All these people who are getting bored and frustrated because they cant live their lives all due to the lockdown, huh! they should try being me for awhile and see how they like it, I've not been able to live my life for years.

Can you ask your doctor to call in a prescription for Percoset for you? I've had my procedures cancelled till the Fall now (!!!) but one Percoset every other day keeps me pain free with no side effects.

Hi Howard, The docs offer me all sorts of medications, but I've become reluctant to take them now, the side effects are awful. I have had all the strong medications over the years, and none of really work. I'm at the stage where surgical intervention is urgently needed...

Honestly, I also went through all the drugs and stopped all of them because of terrible side effects. Then my urologist gave me one Percoset to try as a last resort before surgery and it was like a miracle for me. I never had a side effect from it and one pill left me pain free for 2 days!! I used it as a stop gap until I could get my Botox injections. I was scheduled for my 6 month Botox injection 2 weeks ago but it has now been delayed. So in the meantime I take 1 Percoset pill 2 times a week and that seems to do the trick. I strongly encourage you to call your doctor and get a prescription to hold you over until you can get a more permanent solution for the pain. I doubt your doctor gave you Percoset. The other drugs turned me into a zombie so I didn't notice the pain, along with everything else. But percoset works by turning off your pain receptors in the brain but doesn't affect anything else.

Hi Paul,

I hope you don't mind me reaching out to you. I have a hyperactive cremaster muscle and came across the cremaster muscle release procedure on a google search, and found the BAUS document you mention but can't find anyone in the UK that offer it/ lists this as something they do. I'm based in London, UK.

Would you mind sharing who the UK urologist is that you've seen? Did you manage to get your surgery rebooked?

Thanks!

Hi Howard

Do they always cut the cremaster during this procedure?

Also this would mean the left and right wouldn't be a matching set?