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Researching for my husband (I'm the wife) :)


#1

First of all, I apologize if I’m treading on what is generally a guys only zone. My husband is in enough pain that he’s just sort of over this part of the condition - the researching, talking, etc. I hope you all don’t mind if I ask a few questions?

The rundown…
We have 7 kids. After #6 we decided to be done, and since “everyone” does the vasectomy thing, we opted for that over me doing something permanent because, you know, it was less risky. Ha."

Spring 2014 - original vasectomy. Hubby felt waaay more than he should, and just never healed. By fall of that year, he was still in high amounts of pain that was exacerbated by standing, walking, sitting, driving, straining, sex and not having sex.
Fall 2014 - saw a new urologist (his had retired). Tried a round of antibiotics, suggested a cortisone shot, but basically the urologist told husband he had PVPS, and there wasn’t much he could do. We were then referred to the top teaching hospital in our state.
Spring 2015 - saw specialist. Specialist felt that husband’s pain was NOT related to chronic infection, said that a reversal was our best option gave the success rate at 72% reduction in pain, especially since it’d only been just under a year since the original vasectomy
May 2015 - had the reversal. Doc said there was so much scar tissue that he’d have guessed husband was at least 15 years out from his vasectomy. No clue why, just made that observation - he was rather puzzled by it.
Summer 2015 - no reduction in pain, but we got a baby! Shock of a lifetime but that little guys is our bright spot and joy, however unexpected.
Fall 2015 - no change. Husband’s pain continued to stay at a steady 5-7, same pain triggers. He began working less (has a desk job as a CPA/business advisor), started gabapentin along with Norco, also started Flomax.
Spring 2016 - still no change. Husband was able to get in with the pain doctor at the same teaching hospital, but all he did was prescribe more pills - antidepressants that were thought to help with nerve pain. They didn’t, just made husband incredibly sick and nauseous.
Fall 2016 to Now- Pursued nerve scrambler therapy. Had pretty good results as long as he was receiving treatments every day. Had to take a break due to a month of bad weather. Pain came roaring back. Decided to not pursue further, as it was very expensive, the commute was 2 hours round trip, and the time in the car nearly canceled out the treatment’s good effects.

Meds he’s tried: gabapentin (sp?), Cymbalta, Norco, Flomax, cannabis (oil/tincture, edibles). None of those meds worked, however he’s still on Flomax. The nerve treatment made it possible to get off the Norco, but he’s probably going to have to get back on it.

What we’re looking for…

ANY news ideas. Specialists? Medications? Therapy regimens? We’re now 3 years out from the initial vasectomy, 1 year 10 months from the reversal, and he’s miserable. We are thinking seriously about pursuing a second opinion. His specialist at the teaching hospital seemed to think husband was NOT a good candidate for denervation.

Any thing would be appreciate, and thanks again for your time!

Jenn B.


#2

Hi, Welcome i feel for your husband its a hard road to recovery. Where exactly is your husbands pain coming from?


#3

You have not described your husbands pain in detail. Where does it hurt? i.e. spermatic cord area, testicle etc… What kind of pain is it? i.e.Is it burning pain aching pain throbbing pain etc… Does it respond at all to Neurontin? Does it respond at all to Norco? Did he get any relief from the reversal? Have you had diagnostic nerve blocks?

Sorry you are in this boat. Glad to see you are helping. My wife has never been that involved and it has hurt our relationship deeply.


#4

My thoughts:
Autoimmune or anti inflammatory diet.
Try lyrica and nortriptyline or both together. Gabapentin did nothing for me but these helped!
Tramadol helps but its not ideal to be on it too long and is an opiate sorta.
Maybe try a steroid pack.
If these conservative measure don’t help then you need to reach out to either:
Dr Parekattil in Florida or Dr Jarvi in ON Canada.
very sorry you guys are here, but your not alone there are quite a few knowledgeable guys on here.


#5

He describes the pain as twofold - a dull ache that radiates throug his entire pelvic floor area, and a pain he describes as congestion, and this pain usually flares up when we haven’t had sex for a while (his pain limits it greatly). Sex doesn’t necessarily diminish the pain, and often the contact hurts to the point of distraction, but it does help to at least stop the pressure from building. He is often also sore to the touch in the testicle area (not sure if it’s both sides?), but the biggest pain is the dull ache. Sometimes he describes it as a migraine that’s not in his head, sometimes it burns, sometimes is radiates into his upper thighs. This layer of pain seemed to respond to the nerve treatment he was doing, so we call that “nerve pain”, but really we have no clue.

I believe he tried they nortriptyline, and it made him incredibly dizzy, He’s extremely sensative to motion sickness, so the dizziness made him motion sick, which made him nauseaus…it was a bad month or two. He got off that one and on to something else (another antidepressant) but the pain didn’t change. His doctor suggested Lyrica but said it’s hard to get insurance companies tocover it, so she had wanted him to try increased doses of the Gabapentin and other antidepressant meds so we could show the progression of what DIDN’T work. HUsband has another appointment with her in a week or two, and he’s planning on asking her about it.

I’m not aware of Neurotonin but I’ll ask if my husband is? I don’t think that’s something the docs have thrown at him. Haha-we feel like we’re at the point where they’re just spinning a wheel to pick the next thing for him to try. :slight_smile:

The specialist pain doc did suggest looking into a cord block, but once he analyzed where hubby’s pain was coming from, and talked it over with his colleagues, he came back and said he wasn’t sure it would help, as they weren’t entirely sure of which nerve path to target. My husband, Michael, is a little wary of gigantic needles going into his body, and since the doc wasn’t 100% on the idea, neither was Michael.

I am not familiar with a steriod pack, what is that, exactly?

Also, have any of you met any sort of success with a specialized diet? Michael is skeptical of natural methods, and we’re tight on money, so we haven’t really tried anything out of the box, especially after our learned the hard way, expensive nerve therapy treatment over the winter.

THANK YOU so much! Michael and I both have just hit a wall, and while there are a million and one websites about what PVPS is, I can find very little practical, real world help from guys who are living with the nightmare that is PVPS.

Very appreciative of anything you can share!
Jenn & Michael


#6

May 2015 - had the reversal. Doc said there was so much scar tissue that he’d have guessed husband was at least 15 years out from his vasectomy. No clue why, just made that observation - he was rather puzzled by it.

This sounds exactly like what my own urologist told me when he removed my vasclip and cauterized my vas deferens.

It’s consistent with what Dr. Marks (https://www.dadsagain.com/main.php?url=/about-dadsagain/dr-sheldon-marks/) has seen in his patients.

My experience was that the vasclip removal for me removed scar tissue, but I subsequently got more scar tissue from the clip reversal - that took about 3 months which looks like roughly May to Summer 2015 for you guys.

I’m surprised that nothing seems to have taken the edge off of pain including cannabis. The only things that worked for me were Elavil (amitriptyline) and cannabis as far as pain meds - microdenervation with Dr. Parekattil in Florida was what finally worked for me.

Dr. Parekattil can be found here: https://www.purclinic.com/?staff=sijo-joseph-parekattil-md

As far as diets - I had mixed results and it’s really hard to know what actually helped. I used large doses of omega-3 fish oil (1.5g of omega 3 daily) in an attempt to reduce inflammation and had a strict ‘clean’ diet of high quality protein and leafy greens.

I’m going to PM you my personal information - maybe that’ll help.

Sorry - I’ve been busy with life and haven’t been able to participate in the forum as much as I used to.


#7

Welcome to the forum. Please be assured that this is not a guys only zone. All are welcome here to share their stories, provide treatment info etc.

With that said, I’m sorry to hear about your husband’s pain. As a matter of fact, his pain sounds incredibly similar to mine, although I am only 5 months post vasectomy and have only tried conservative treatments thus far with little success.

I would strongly recommend reaching out to the PUR Clinic in Florida, or Dr. Keith Jarvi in Toronto (he runs the Men’s Health Institute, which is affiliated with Mt. Sinai Hospital).

Unfortunately this is a common, yet poorly understood condition and only a handful of uro’s worldwide can properly treat it.

For my neuropathic pain, I have found that a combination of lyrica and nortryptline work quite well, with little side effects. I’m frustrated to hear that your insurance company won’t pay for lyrica. Is a generic pregabalin not available? In Canada I pay about $40 per month for pregabalin (generic lyrica).

I have also found that pelvic floor stretches/relaxation helps (maybe 15% pain reduction), but if I don’t do the stretches regularly (3 times daily) the pain comes roaring back. The stretches I do are from Amy Stein’s book ‘Heal Pelvic Pain.’ It was like $10 on Amazon and I think it was worth it.

I also take naproxen (aleve) 220mg’s twice daily, along with extended release tylenol (the arthritis stuff) twice daily and it helps me get through the day. It’s not a fix for sure, but the past two days I was feeling so…uh well, I don’t want to say good, but not as bad as usual that I stopped taking my meds for two days.

I’m back on the meds now as the pain came back unfortunately.

As to a steroid pack, it’s basically a declining dose of a steroid to rapidly reduce inflammation. It helped me the first time I took it, but the second time, not so much. Be careful as steroids can have some nasty side effects. Hip necrosis is one of them, although fairly rare.

Anyways, I hope this helps somewhat and good luck with your husband’s treatment.


#8

This post hits very close to home for me, because like you, I am a wife who trolls this website often, to get ideas for my husband who has suffered from chronic pain for the last 4 years, 3 months. Just to give you a synopsis of our hell, we decided to try and have a baby but my husband needed a vasectomy reversal after getting his vasectomy over 20 years earlier. After a ton of research, we went with Dr. Sheldon Marks in Arizona. We figured it was better to pay more, and travel from California to Arizona, banking on the fact that he would be awesome. From the minute he woke up from surgery, he has had major testicle/abdominal pain, mainly radiating from his left testicle. My husband is pretty determined and proactive, so we have traveled from California to the PUR clinic, Dr. P, 12 times (YES 12), then twice to Baltimore for a surgery with Dr. Dellon the first time, and Dr. Williams the second time. 14 procedures in all.

He has had everything from denervation (the worst pain), to a left testicle removal, to Botox, to Amnio fix, to homeopathic medicine, Chryo, ultrasound, pain management, hernia removal, blocks, and nerve removal. He also has a vasectomy, to try and repair what might have happened during the reversal. In the beginning, the pain was terrible. He was living with constant 9-10 pain. Dr. Marks completely abandoned him-after prescribing him numerous antibiotics/steroids, etc. He dislikes pain medication but has tried them all, including weed. Gabapentin/Lyrica make him totally spacey so he won’t take that as a rule although he has tried them all. He is now on a seizure medication called, (Baclofen) which seems to be helping slightly. He takes tramadol and tries to avoid Oxy. He hasn’t needed it recently and sees it as a last resort. The last surgery with Dr. Williams was 3 months ago. He removed more of the genitofemoral (Dellon started the process), and the ilioinguinal. It has resulted in some improvement-he is now at a 3-4 most days when he used to be a 7-8 even after all the surgeries at the PUR clinic. This is typically the story. He spends a couple of months recovering from a major surgery, he lays in bed to work (thank goodness he works from home), and we ask each other what might be old pain, or new surgical pain. It gets better for a bit, then he typically relapses as soon as he starts moving around too much.

As for his area of pain, the testicle is gone, but most pain radiates from his “stump,” or the area where his vas was cut. You can feel a lump. This pain radiates up through his abdomen. Before this last procedure, he had what he would describe as a “background” pain, like the electric pulse you get before a major leg cramp. After his surgery with Williams, that is now gone. We were warned that the nerve removal/exploration might result in some thigh pain/numbness which it has-but it doesn’t bother him too much. As of right now, he has good days and bad days and we have agreed with his doc that we will give him more time to heal-at least through the summer before thinking about another nerve removal surgery.

The idea is that this was the result of a stitch through a nerve when he had his vasectomy reversal. The bummer is that we never got pregnant. So, as the wife of someone going through this-it is VERY real. He is an incredible husband/father but this has changed our lives in so many ways. We take it all one day at a time, and our agreement with each other is that I won’t quit on him, as long as he never believes that this is our new reality-and is always proactive as to ideas/research/surgeries. Surgery sucks, and we have spent more time dealing with surgeries, recoveries, and pain than anything else. But he is WORTH it. Husbands-if your wives aren’t a part of your “journey,” please have them read this. My husband gets down, and so do I, but if the roles were reversed, he would have my back.

You are a good partner, we should all be looking for ways to help those we love! If I can be of any help to you, even for moral support, please let me know. I GET it.

Good luck everyone!


It's just in your head
#9

I will look into Dad’s Again and the PUR Clinic! I’ve actually looked at the Dad’s Again website, but wasn’t able to tell if it was strictly reversal for fertility. My husband sure can’t be a dad right now, he’d love to be one again!


#10

We’re in the US, Eastern Oregon, about a mile from the Idaho border. My husband’s name is Michael. :slight_smile:

Michael’s doc hasn’t tried yet to get the Lyrica, but she said last fall that it would be helpful to have a sort of document of the progression of needed medication in order for it to be approved by insurance. We’re on state Medicaid, which is usually great, but sometimes frustratingly confusing. I will pass the names of those two meds on to Michael, and he can ask about it when he sees his primary doc next week. When we saw the pain specialist last spring, he gave us 3 options to try for the anti-depressant, and I believe nortryptline was the one he didn’t try. One was Cymbalta, and the other started with a d…can’t remember it now.

The specialist did suggest pelvic floor therapy, but it made Michael miserable. He did it for about 3 months and finally quit because it wasn’t helping. We kind of think his therapist wasn’t probably the best, but she was the only one in our rural area, and the next options were an hour away in Boise, Idaho. The time in the car always undoes anything he’s trying to fix, so we didn’t even pursue another one.

I think he’s tried steroids, and they haven’t done much.

Thanks for the tip on the meds! Maybe that’ll be a good combination for him/us.


#11

Thank you for the moral support! Being the wife is tough because PVPS isn’t concrete. I mean, if Michael were going through chemo treatment, people would know what that was, and relate real-world experience with it. You tell them PVPS and they look at you like you have a third eyeball.

I don’t know what we’ll do next, but I’m ready to have my husband back, we have seven kids (crazy, I know!) and my youngest 3 don’t even remember the Dad that the older kids know! We’ll talk about things we used to do, and they have NO clue. It’s heartbreaking to me and to him, and he gets to deal with all that AND the pain. My parents just offered to take all the kids when the baby is weaned (he just turned 1) they’ll watch the kids so we can get away, and we just decided to do a stay-cation because we can’t go anywhere. He’d just lay in a hotel room and be miserable.

Anyway, thank you!!! <3


#12

Sorry to hear you guys have been through this.
I have been to both Marks and Dr. P. Especially since he has already had a reversal, your best bet will be to talk with Dr. P. Good Luck!

Awesome job guys. Swarmed it. Hopefully this sets her in the correct direction!


#13

Lots of great advice here.

Good luck!


#15

I’m very sorry to hear about this. I was all gung ho about scheduling a reversal since no one seems to get worse, but this made me think twice.

Thank you for sharing your story. It’s important to talk about this condition and the damage it causes.

Please check out the thread about spreading the word and I would encourage you to submit a news tip to the various major news outlets.

Eventually they will pay attention and make a story.

Matter of fact, I saw an article on a major British newspaper, can’t remember which one, but a young father got a vas, wasn’t told anything about the risks and now he’s unable to work and has horrendous non stop pain. He even tried to kill himself recently.

We need more stories about this in the news, especially with the AUA and NHS pain figures being quoted.


#16

I just want to repeat that to try Nortriptyline and Lyrica at the same time or maybe add one after the other. Also it is very common to have bad side affects but maybe hang in for a week or two and see if they diminish. There might be a chance that they are more effective together. Then over time if they help you can maybe wean off one, then maybe the other. The hope is over time they will help stop the verves from firing. At least that’s how I understand it. And again Gabapentin was the worst drug I have been on for me, so please don’t lump all these anti depressants together.


#17

I second the part about to many medications, and I will throw in “unusual reactions to them”. I remember a guy much like the guy in this threads topic. He ended up having a seizure to a medication given to him by a pain management specialist. Ended up doing 10k in damage to himself in one day.


#18

I honestly don’t have anything to add. Continue to love and support your husbands. They need it way more than you realize. My wife and kids are the only reason I’m still around.


#19

I am also another woman actively on this pain forum. I’m the mom of my almost 17 year old son. Today is the 2-year anniversary of the beginning of his groin/right testicular pain. We are not sure if his emergency testicular torsion surgery made the pain permanent. He has had one surgery and several procedures by Dr. P. at the PUR Clinic plus two surgeries by Dr. Dellon. Both are good doctors, but so far we don’t seem to have a solution. We have traveled to Orlando, Baltimore and Las Vegas for surgeries and procedures. He has to spend most of his life lying down. He looks handsome and healthy, so it is difficult for people to believe what he is dealing with. He is willing to have another pheripheral nerve surgery this summer.I have asked him to consider going back to pelvic floor massage therapy to see it that might help. Right now he is on Lyrica, but he liked Gabapentin better. He is taking 5 mg of oxycodone in the morning, but his pain management doc wants him off that drug. My son says that is what helps him. It is so frustrating!
You are not alone, so welcome to this group. It breaks my heart that this testicular pain is so difficult to solve.


#20

I feel like a sponge - I’m soaking all of this in!!! I need to either have my husband go through this all, or compile it into a succinct, linear flow of thoughts, probably a spreadsheet, since he’s a CPA that that’s his second language. haha

GREAT news just today, Michael followed up with his pain care doc, the one who’d done the nerve scrambler therapy, and they are now covered by Oregon Medicaid!!! We still have to wait for the official ok from Medicaid, but things are looking very hopeful. IF Medicaid will cover the therapy treatments (they’re $300/session) then Michael is absolutely willing to drive the hour it takes to get there. He did treatments for about 12 weeks in the fall, and while the pain wasn’t 100% gone, I’d say he went from a solid 7-8, down to a 2-3, and he says that during the treatments the pain actually STOPPED. We’re really excited about this, as it’s more…safe…than pursing something surgical at this point.


#21

hello, I am 19 years old and put of nowhere I started having pain very simular to the pain folks round here get. I am a Blackfoot, Idaho resident so there’s not the best doctors anywhere near me. I was 17 when my pain started. I have had an epididectomy, nerve blocks, denervation of the spermatic cord, triple hernia repair and on the 10th of january I had the testicle removed. the only thing that worked out of those was the nerve blocks and it only lasted 3 days. with all of those procedures has caused a lot of scars tissue to form and my left inguinal canal has been completely closed off. the incision got infected and I have to pack it with 7 inches of gauze 3x a day. on my last surgery my doctor mad the note that my outer inguinal ring had been excised and left “violated”. I was not a candidate for the denervation or nerve blocks but they helped for a couple of days and then came back with a vengeance! tell your hubby to wear extremely supportive briefs because in the long run it helps!