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RSD or crps2 of testicles


#1

Have been told by two different docs now I have RSD or CRPS 2 of the testicles. Just thought I’d mention it for others who have been struggling with this for a few years to possibly look into it. It explains why some of us don’t seem to get better no matter what procedures we try.


#2

Scott, can you tell me how the docs are coming to this conclusion? I was put on (or back on) percocet, and gabapemtin last week along with valium. I am speaking with Dr. Williams this coming week and need to bring up everything. I am getting worse myself as of lately.
Thanks Joe


#3

It’s a diagnosis based on symptoms, time, etc. it’s actually kind of a fall into diagnosis when nothing else explains the symptoms. Type 2 CRPS is caused by known nerve damage. Is your scrotum red? One of the hallmarks of RSD:CRPS is the area is bright red. The skin also becomes atrophic (thin) and quits growing hair over time. My scrotum has been red since 2 weeks post vas. Blocks would always turn it back to its normal color, but this last set didn’t. I’ve also noticed I’m growing less hair on scrotum and the skin is turning a shiny red and the skin is also flaking. Basically all the diagnosis really indicates is nerve damage. It’s just a way to name it, but RSD is known to have stages 1,2 and 3 which helps with a time line and possible treatments. Treatment is blocks, spinal cord blocks, nerve medicines, pain medicines, spinal cord stimulators. etc. its also known to spread to other areas. Can explain the numbness I’ve had down both legs and now into abdomen and arms. it’s best to have a doc familiar with RSD, usually a pain doc. I asked dr p about it and he said not to worry about what they call it or name it the goal is to get out of pain. Just let’s me know it was definitely nerve damage that caused this whole mess. I had the amnio done last week. Usually blocks help a day or so. This time 30 minutes after waking up pain was back to normal. The nurse said I rated the pain as a 3/10 on waking up from anesthesia. Just pisses me off that all of these Uros act like there are no complications from vasectomies. This has been a life alternating battle. I can’t even play with my kids, only work part time now. It’s hard to even lift my 2 year old. Luckily I own my own business so I have only lost half my revenue with not working. Haven’t had sex in 6+ months because the pain spikes so bad I get nauseated and that was the whole goal worry free sex. Is take a Brady bunch of kids over this nightmare!
I’ve talked to some other specialist friends and some of them believe the best solution is multiple blocks in a short period of time to try and get the nerves to calm down. My next options with dr p is to do monthly blocks. At this point if they told me I’d be 50% better cutting them off is go grab the knife myself! If you have any questions message me and I’ll give you my phone number. Basically every doctor I’ve seen have no answers or think your crazy besides dr. P pretty sure its cause he’s seen it all. I know Choo Choo has been researching it a lot too


#4

I just got off a site that describes symptoms and almost all seem to fit except the skin and hair. One says it Waxes and wanes too. I am so confused and scared being I have been regressing and my area has no PVP docs. I can’t afford to go to Fl. to Dr. P and need Dr Williams to do the blocs and amnio fix. I may do this sooner rather than wait till my insurance changes over. I took a Percocet this evening for the first time and had no pain for the first time at night in quite a while. In the morning I am usually ok till around noon then everything changes.
Scott I am so sorry to hear none of this has helped. I agree Vasectomy is a life ruin er. <y thoughts continue to return to V day… I can’t even believe people who had pain didn’t fess up to me and tell me the truth that they had issues.
Anyway thanks for the post I PM you soon
Joe


#5

Hey guys, what is the amino fix?


#6

Hey Mike
This is the stem cell injection along with nerve block agent how I understand it. You can google amnio fix nerve block and get a better definition. I am just going by what i remeber from a quick call to Dr Williams secretary. Plus i have know memory anymore my heads all messed uo lol. Drugs man, the Drugs did it. (My sad Chong impression)


#7

Mike
I also think this is what Dr P uses for the wrap too but Im not sure. I remember him using the biowrap for me which i believe was pig tissue. ??


#8

I’ll second Scott on type 2 CRPS. It’s kind of a funky fringe neurological diagnosis that isn’t well understood. It can come in all shapes and sizes and is triggered by a nerve injury (type 1 is the same but idiopathic cause). Some people get the redness and feel no pain at all. Others have pain with no redness. It can spread and even cross the midline and affect previously healthy areas. They believe there is an immune component but don’t really know. Personally, I don’t have redness or hair loss (at least not yet) but do get a deep burning sensation in different areas of my body. It feels like a really bad sunburn that is painful to touch. I’ve had right knee pain and left hand knuckle pain that started week 2. Ironically, the skin burning is right quad and left forearm, consistent in location with the joint pain. Most docs don’t know about it. If you have migrating symptoms or stuff that just doesn’t make sense (I’ve had hearing loss, vision loss, myoclonus, vertigo, anxiety/depression, forgetfulness/brain fog, joint/back/neck pain, 24/7 migraine since day 2), I would encourage you to find someone that has experience with it. Even if you don’t have it it will get you networked with doctors that know how to treat complex nerve pain conditions. These people get it. I’m sick of being looked at like I’m crazy. The right docs are crucial. Case in point, CRPS has a tendency to alter your endocrine system. Just a 25% change in testosterone is enough to cause anxiety/depression and increase pain perception. Many CRPS patients find hormones help even if they test at “normal” levels. I’m not saying testosterone is the answer but I do know several people that have been diagnosed low T post vas. The first doc I saw I had to explain what CRPS was. He wouldn’t even consider sending me to endocrine because “vasectomies don’t change hormones”. He couldn’t think outside the box. I’ve since been diagnosed low T. CRPS needs to be treated early and it’s important to never use ice in the affected area. How many urologists have told you to ice it and wait 6 months? I saw a specialist yesterday who all but guaranteed the diagnosis. My next appt is with neuro to confirm it. She also happens to have it herself. Within an hour I had referrals to neuro, internists and anesthesia/pain docs. Referrals I’ve been asking for for months but never received because my PCP thought I was overreacting. I also want to thank Scott. Haven’t even met the guy and I love him like a brother. Very smart kid!


#9

Thanks Brandon I’ll let you know what Cleveland says next week.


#10

Hello all. I’m new to forum. I have not made any comments but have read most of them. I have post vasectomy pain syndrome for 18 years and have gone through the whole deal. doctors pretending they have no idea. I saw this post and had to comment.
The pain has gotten worse over the years and I said this is ridiculous. Got 3scrotal ultrasounds done about 6months apart. They saw hernia and varicocele and post vasectomy vas deferen changes. I am suffering all the typical symptoms of pvps. What caught my eye was my Doctor also diagnosed me with rsd when I went to him begging for help almost in tears with a red scrotum in hand.When at its worst I think it’s one of the most painful and debilitating condition for a man. Going for left sided denervation in a couple months. Crossing fingers. If it doesn’t help I may have to cut them off myself. Went to pain Dr yesterday. He understood. He had a patient commit suicide three months ago because of this issue. I’ve been off work for a year. It pain Groundhog Day everyday. Dr prescribed tramadol to go along with hytrin,celexa,that my reg go already had me on. I had the pain for all these years but when my pain was at its worst in June of this year I noticed my scrotum was purple then back to red. This rsd is no joke. The pvps was ignored by ***** for so long (Doctors afraid to admit it exists) that now it’s a whole different condition now. Had someone helped with this pvps 17 years ago I wouldn’t be in this horrible predicament. If you have pvps get the pain under control immediately with whatever. Pray you never get to rsd point. I’m not sure this is reversible. Hope denervation helps or tramadol . Rsd is a serious condition when it happens on your pinky finger but when it’s your scrotum. OMG.
Cheers fellow suffers. I’ll return with any success my situation. Thanks for all your posts. Only thing that kept me sane.


#11

Roscow read my post in new topic. Head of Cleveland clinic doesn’t believe its RSD I asked him 3 times he thinks its nerve issue caused by immune system attacking it


#12

How red is red? This isn’t something I think I am experiencing but just curious. I had some redness shortly after and my sack feels thinner since the swelling went down.


#13

You just can’t have pain in the same place for this long before body gets pissed off. Comes and goes with level of pain.


#14

Old thread but had to bump it.

Met with Dr jarvi yesterday and he mentioned the possibility of crps. Great.

He did say he wasn’t sure as he’s not a neurologist however, but I do have many of the symptoms.

His thinking was to do a reversal first in order to put me back to the way I was. His opinion was that the vas caused all of my issues since they didn’t start until immediately after. He really gets it.

I must say that Dr jarvi is honestly the best Dr I’ve seen. Ever. I think it would be worth it for anyone suffering from pvps to see him regardless of where you live. Awesome bedside manner and a wealth of knowledge, and a great listener to boot.

Obviously I’m terrified to go under the knife again but I know I’ll be in good hands.


#15

Anyone still out there dealing with Crps of the testicles? I’m going on almost ten years of this shit off and on. I’ve been in remission for years then it comes back. The original etiology was chronic epidiemitis and soermatocele… First urologist was a dumb ass but don’t know for sure if he had anything to do with it. See pain doc… Nerve blocks make life bearable but to the normal person a day in the life would send them straight to the er. Started this wonderful journey at age 21… Stole my 20s from me… Now I’m sitting here thinking this shit can’t be happening still. Now I’m stuck in no man’s land. No urologist seems to know… No one wants to do surgery and not sure I want that again… Pain doc wants to try a radio-frequency nerve ablation which I’m open to trying but it’s out of pocket. Or he wants to do a spinal cord stimulator. I’m convinced the crps has calmed down and the pain is eminating from the epididimys but no one has answers and I feel lost. Depression is sevre…i keep pushing on but damn shit is nearly impossible. For me when my lower bowels are full it puts pressure on the genitofemoral nerve and causes immense pain until I have a bm. Has anyone done cord stripping or microsurgical dennervation of the spermatic cord? I need help. Thanks for anyone who sees this. Sorry you all are here


#16

Still dealing with it. If I was you I’d contact either Dr p in Florida or Cleveland clinic. Both radio frequency and drg are options. Drg has helped knock pain down but not eliminated pain at all. Who diagnosed you w crps. Interesting
a bm relieves the pain. Bm stretches the pelvic floor muscles so I wonder if that is some of the relief you get. The testicle pain will definitely cause them to tighten. Did original doc perform a surgery? Post didn’t say

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#17

Sorry if I wasn’t clear. First surgery was when I was 21 done by a Uro for Spermatocele and Hydrocele – bilateral I believe. No diagnosis of CRPS after, but my pain after that original surgery got worse 2 months after the surgery. Doc kept telling me to take advil and that I was fine. I was clearly not fine as any 21 year old doesn’t fantasize about spending time in the Urologist’s office. Finally ended up at a G.I. doc because the referred pain was in my back, lower stomach (like getting kicked in the nuts). He was a great doc…listened well. We did a colonoscopy and he put me on Gabapentin and nortryptelyne as he thought it was nerve related. Didn’t seem to help for first few months…same pain. Then I ended up moving for a job to Hawaii …and between the drugs and the fact I had to “sruvive” in a new environment I went into practically complete remission. Only was in pain once every few months. The original diagnosis was Chronic Epididymitis so if I was in pain I’d beg for antibiotics and anti inflam. and typically I’d be fine. 3 years later I had a job sitting in a chair all day and the pain came back. Went to a surgeon and told him I was going to cut off the right nut and put it in his hand if he didn’t do something. He told me it might not help, but we did a partial epididemectomy on the right. Same as first surgery I felt better for a month or so…then it got worse. Kept getting worse…that doctor said he’d only seen one case like me in the past so I started begging high level Urologists to see me and one referred me to pain doc. Tried gabapentin again and it didn’t help. Did nerve blocks to the genitofemoral nerve and that has been keeping pain manageable…but still not good. Unfortunately I feel like we all have to self diagnose to some extent. The second Uro said when he opened up the scrotum my right was severly trapped in scar tissue and the look on his face was like nothing he’d seen before. I think for the most part the crps is in a “calmer” state and only affects me when the full lower intestines put pressure on that area. Then relieving the bowel helps get it back to a manageable state. But because of this I don’t eat enough and have continually lost weight. I think it is more scar tissue in my right as I can feel a nice lump on my epididymus and it’s painful when I touch it between my fingers. I have a friend who’s a doc and suggested before that desensitization was key …so I tried “masaging” the area that hurts but it didn’t seem to do much other than make things worse. So I’m stuck wondering if I need to have a full Epididemectomy or Orchiatomy or if the scar tissue and such isnt anything “bad” if I should just try the nerve ablation and see what happens. Just sick of dealing with it. Thanks so much for reaching out


#18

If it was me I wouldn’t go back into scrotum just risking more scar tissue you need pain guy to do diagnostic blocks of Gf nerve if it helps most likely nerve and options would be laparoscopic removal of Gf nerve, ablation of nerve
(nerve fibers do grow back) or remove testicle at inguinal canal ( solves Gf nerve epididymus etc whole kit and kaboodle) unfortunately if it is crps doesn’t guarantee to fix the problem. They still don’t know how to treat crps effectively. If crps also
could try ketamine infusions work in percentage of people unfortunately not me. They are also doing low dose naltrexone. Drg was designed specifically for crps they do a trial if it doesn’t reduce by 50% they won’t install it. I’d get pain doc option and
option from dr p or Cleveland doc can’t remember his name.

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#19

Okay – I’ve got an ultrasound Thursday just for peace of mind. I’ll schedule pain doc – I think ablation still sounds like a better option. I’ve met too many that didn’t like DRG or had tons of complications. would much rather try Ablation or Spermatic cord dennervation as the GF nerve blocks have been very effective I think these may work best. Just out of pocket for ablation and I don’t think anyone around me does the cord stripping.


#20

Look up guys who have tried ablation and denervation and pm them

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