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Strongly considering reversal


#1

Hi guys. After reading posts, trying to figure out what is going on with my body, and hoping it would just go away, I’m now strongly considering going for the reversal in the near future. I’ll try to lay out my story in one long post, and then I’m curious to hear what you think. Is this a good decision based on your experience?

I got my vasectomy Nov 2016, about 11 months ago. During the procedure, he did the right side first and it was totally painless. He did the left side next and part way through I suddenly felt pain in the ball and up into my abdomen, had a vasovagal reaction (sweaty, nausea, faint, pale, etc.), and generally felt horrible. The doc didn’t even flinch when I had the reaction and nurses said that happens a lot, so I don’t really think anything went wrong per se during the procedure, but can’t be sure of course. I’m not sure if it was the ‘no scalpel’ technique or what, but he used the cauterizer quite a bit, so I’m guessing probably. It was through Kaiser so I assume would be the latest technique, I don’t know the details.

After the vasectomy I expected it to heal within a couple of weeks, but I was still in pain after 1 month, so I emailed my doctor. The pain has always been on both sides, worse on the left. The stitches healed and the pain was significantly less than initially after, but I still had pain in my testicles and belly, sometimes a dull ache, sometimes more painful. Sitting and physical activity make it worse. At this point I was still icing the area religiously and taking ibuprophen on a regular basis in an attempt to control whatever was going on down there. The doc said continue icing, take ibuprophen, should get better within a couple of months.

I started searching for info, and came across descriptions of PVPS, etc. etc. Somewhere after the first month I took very hot shallow baths (testicle deep) every night pretty much for about 3 weeks. This was a technique I read about to decrease sperm production. I thought it helped me at the time, but the pain didn’t go away completely. The type of pain I was experiencing was aching pain in the testicles, and radiating up into my abdomen on both sides, basically following the vas internally I guess. I would get stabbing pains in the sides of my lower abdomen and testicles sensitive to jostling. I wasn’t writing all of this down at the time, but that is my recollection and some of what I emailed my doctor. Overall I think the pain came down over the first 3 months after the procedure from maybe a 5/10 initially to maybe 3/10. I called my doctor around the 3 month mark and he said I probably still had some healing going on and it should resolve.

So I gave it some time and was able to stop taking ibuprophen, used a standing desk at work to lessen the ball trauma, but the healing I was hoping for was very slow. The pain did seem to come down to maybe a 2-3/10, but my balls were still sensitive to sitting and activity, and I wasn’t able to run or ride a bike really. Around the 6 month mark I went on vacation feeling like it was getting better slowly and hoping for the best.

While on vacation at first we were road tripping and not a lot of physical activity, and I was managing the pain with occasional ibuprophen and feeling relatively good. Later on I went running every day, and had been less strict about wearing 2 pairs of tight underwear all the time… The ball pain increased, and I started getting more of lower belly, kicked in the balls nausea, especially after running. This is when I got most alarmed, I let my guard down hoping I was getting better, but now I was having significant issues again, and the nausea seemed to be a new twist for me. At that point the pain was probably back up to 4-5/10 after exercise, and somewhat different in quality from some of the pain I felt early after surgery. When I realized this was still from PVPS I went back to the tight underwear and compression shorts combo, started taking alleve more regularly, and generally tried to let things heal themselves by limiting my activity and ball jostling in daily activity.

I paid my urologist a visit around 9 months after the procedure just to make sure I didn’t have a granuloma or some other explanation for what was going on. From our earlier phone conversation I had a good idea of what he was going to say about my persistent pain. He examined me and said my exam was perfectly normal, the vas had ‘healed beautifully’, for what that is worth. He really didn’t have any suggestions for anything I could do other than take ibuprophen before I exercise. He seemed to think it wasn’t that bad and I could just deal with it. Easy for him to say. I told him I had read some studies suggesting a reversal might help. He didn’t seem to have much experience with this, I think I am his first patient to have come back with pain like this. He just said reversal could be done, but he wouldn’t recommend it.

After that I went back to what I have been doing since the procedure, which is to give it time and see if I can convince myself it is healing slowly. I am now 11 months post-vasectomy; the pain in my balls has never gone away completely since the procedure. Here is what I am experiencing now:

My symptoms now seem to be related to my activity level. When I wake up and just stand up sometimes I don’t have any pain in the morning. Some days I do have some when I wake up, but it is typically mildest when I first wake up. Then as I go through my day, I can generally stand in one place without much pain. Sitting makes it worse, activity makes it worse, I think heat makes it worse too. If I don’t do too much and manage to stand all day, I can make it through with pain mostly at a 2/10 but it is still constantly there most days. If I have to sit for a long meeting, it makes it more uncomfortable. I get pain in my balls, around what I think is the top of the epi/ also maybe the vasectomy site itself. Then I get pain radiating up into my belly. Sometimes I can push in on my lower abdomen and feel dull pain as I push going up and down what I assume is the vas, up from my balls into my lower belly. Sometimes I feel nausea, sometimes it feels like constipation, and/or bloating. My balls feel like a water balloon sometimes between my legs when I walk around, I take a wide stance so I don’t jostle them. My balls are sensitive to being squeezed or manipulated, feels like from the top end of the epi near where it connects to the vas, but I can’t be sure exactly. Sometimes the epi on the left (worse side) looks large and bulging to me, can see it bulging from under the skin, but I can’t say for sure how it looked before – never looked that closely I guess. Sometimes I get a cramping pain in my belly when I ejaculate. Not every time, but if I do it twice in a day, for example.

After waiting for 11 months, my thinking is that whatever normal healing process is supposed to happen after vasectomy should have happened by now. I clearly have something else going on. I don’t think my urologist screwed up, I think for some reason I am sensitive to this. The pain isn’t debilitating, but it is getting in the way of how I want to live. I want to be able to go running, ride my bike, play competitive sports, etc. all of which I can’t really do in my current state. The pain is relatively constant 2-3/10, and having a seriously negative impact on my life and my family.
From reading posts on this forum I think my symptoms are consistent with congestive type pain and I have a good chance at improvement with a reversal. I have been looking for posts from guys with symptoms like mine that have found some relief, and I found a few who had luck with a reversal. I know it isn’t guaranteed, but I also feel like I have given it a lot of time and I don’t think the pain is going away by itself. I’m planning on trying to contact ICVR this week and see if I can consult with Dr. Marks, I hear he is one of the best. I live in the SF bay area, but I am willing to travel for the procedure to get the best available Dr. I don’t care if I become fertile again if it can get rid of this problem, there are other ways to prevent pregnancy, so I think reversal is my best option. I am of course nervous that another surgery could do more damage and I could end up worse than I am now, but at this point I think I am willing to take the risk.

OK, so now give me your opinions: should I go for the reversal?


#2

No one can tell you one way or the other. I think its a good idea to talk to Marks because he provides a very thorough review of your options. Sorry your here man. Good Luck


#3

Wow. Your story and symptoms are strikingly similar to mine. I had a vas in October 2016. Constant severe pain for months afterwards, then moderate pain after that. I was reversed 3 weeks ago and experienced a slight reduction in pain. Too early to tell.

FYI the reversal was far less painful than the vas. Seriously.

I’m at work now so I’ll respond with more detail later tonight when I get the chance.

Thanks for sharing your story and sorry you’re here.

P.s. I’ll bet your urologist screwed up. My .02


#4

@kevinl

I chuckled at your comment about kaiser and being the latest technique. Sorry. It doesn’t matter who you go to, what method you have, there’s always, always a potential for chronic pain. Every doc will have a bad outcome sooner or later, unless they’ve only done like 20 vasectomies.

If you had stitches, then you have a traditional, scalpel vas.

I had a no-scalpel done in October 2016 by a guy who has done 45,000 and claimed a 1 in 10,000 chance of chronic pain, which is science fiction. Anyways, I didn’t feel anything on the left during the surgery, and then on the right I felt a tingle/shooter go all the way up into my stomach. My right side is and always has been my bad side. Although I didn’t faint or get nauseous or anything, and the pain didn’t really take off until about day 4.

I’ve had epi/testicle pain, cord pain and abdominal pain ever since. It was pretty severe for months afterwards, I was popping lyrica, nortryptiline, tylenol, advil like it was going out of style. And I’m not one to take painkillers. I thought about suicide daily.

I think it was around 4-6 months that the pain got a bit better and I could do most things, but I’d still have bad days with stabbing pains up my cords, into my stomach, I always had post-ejac pain flare ups, but I managed to make it through the day with tylenol and gritting my teeth.

I was reversed three weeks ago today, and my pain returned to baseline after about 10-12 days, can’t remember exactly, so I went back to work quickly. Not lifting anything heavy, but I might have a slight improvement, maybe 5%. No more pain after ejac, which is nice and my balls don’t feel as big and heavy, and I don’t feel like I have a clothespin on them anymore. Perhaps a bit less abdominal pain too.

Do you get any stabbing, burning pains?

Did you doctor tell you of a risk of severe chronic pain? 1-2% AUA guidelines at least?

I can’t tell you what to do, but my reversal surgeon, Dr. Jarvi (PVPS expert in Canada) told me that if you don’t make significant improvements by 6 months, chances are you’re not going to get better, and the sooner you act, the better the outcomes.

If you go for a reversal, only go for a surgeon that treats PVPS guys and knows PVPS. Vas to vas connection only, no vas to epi connections for PVPS guys ever!

Good luck and feel free to PM me if you have more questions.


#5

I was pretty similar to you, I got the reversal at 14 months after deciding at 12. There are some further non-surgical treatments like steroids, NSAIDS, prostate medicine, etc before fully going that route.

I went to Dr P in Orlando for reversal but talked to Dr Marks as well.

My reversal (VV/VV) failed for fertility (clinical findings should have indicated VV/VE), but Dr P only does the VV for pain patients. I didn’t expect a VE would be needed so soon, but it is consistent with some pain I felt after the first ejac on the initial vas.

My reversal was only open a tiny bit for a tiny bit of time, but I’ve gotten nearly total relief, and I’m sterile again. I suspect the removal of scar tissue/clips/damaged nerves gave me relief.

Personally I would have preferred to remain open. However, I was worried if a VE was done then it has more potential for new pain - something I desperately wanted to avoid.

But, I’m able to get on with my life now and feel pretty good, so reversal gave me pain relief and was worth it. I have once in a while mild ache on my worse side, but it is below the level of being a nuisance to me.

My only regret is the damn vas in the first place, of course.


#6

@vasregret thanks for your reply. I consider your story a success story and hoping for something similar for myself. My goal is to be able to ride my bike to work again, but I know it will probably be a number of months before I could even attempt that. I sometimes get stabbing pains in my lower abdomen, I think those have decreased/are decreasing over time. For me the part I most need to go away is the pain/nausea etc that builds up over time as I move each day, and is unbearable when I try strenuous exercise. My other pains aren’t that bad and I can live with it if they don’t go away completely.

Of course I wish I could go back and not have the vasectomy. I watched an informational video before the procedure, I remember being alarmed they mentioned there was a risk of permanent pain, but I’m pretty sure the figure was ‘<1%’. When I searched the internet, that was the figure I found, so I put it out of my mind as a low risk. Overall I really resisted the vasectomy, but told myself my fear was irrational and I just needed to push through. Perhaps I put too much stock in the few guys I talked with who didn’t have any issues, so I figured I would have a similar experience. The uro asked if I had any questions, but I felt like I knew the deal from the video, so I said I did not. So I never had a discussion of the risks with an actual human being before having the procedure. not sure if any discussion would have changed anything, being told the risk is <1% probably would not have changed anything for me.

I think my level of discomfort is relatively mild compared to many on this forum. I feel for you guys and am hoping you find a solution that works.

For the past 6-9 months I have been listening to my body and trying to figure out if this would go away through some natural healing process, as my urologist suggested. I have come to the conclusion that for me it is not going away, it gets to a low level because I limit my activity, limit sitting, take NSAIDs, etc, but as soon as I try to be more active, my symptoms come right back.

From what I have read on here Dr. Marks at ICVR is a skilled surgeon with lots of experience, who has treated PVPS. I like the one-a-day policy, flat no-surprise pricing, and AZ is close enough to me in CA to make the flight relatively easy I hope. I have a consultation with him in a couple of weeks. It sounds like he is on the conference circuit right now, but I am prepared to wait to get the best surgeon I can find. The receptionist first wanted to schedule me with Dr. Burrows, but I really wanted to go with Marks b/c I know he has an excellent track record, and I am less sure about Burrows. I’m hoping I can get on the schedule for reversal ASAP after talking with him.

Anyway, thanks for sharing, it gives me hope. Hopefully I will be able to update this forum 6-12 months from now with good news. I still have a ways to go…


#7

Thanks for the reply Robert, I appreciate hearing your story and it gives me hope for myself. I completely regret having the vasectomy as well, but hindsight… I will listen carefully to the doctor’s advice, and I know everyone prefers more conservative treatments first, but personally I don’t feel like steroids, NSAIDS, Testosterone, etc. are very good long-term options for me. Maybe Dr. Marks will change my mind on that when I consult with him, but at this moment I am pretty convinced that I need the reversal, and I don’t want to wait any longer than I have to.


#8

I think you’re right to begin to inquire into reversal now.

I did not mess with testosterone myself. Steroids gave me benefit though, and the thinking is that steroid + NSAID gets you stabilized and stops the runaway inflammatory process.

From both docs I heard the sooner the better, but under three years was still very early.


#9

My advice to you is, follow your gut.

If I had any secondary advice, prepare yourself physically, and mentally. Take pre surgical vitamins. Be ready for it.

As you may be gathering from others, recovery’s can be far more challenging than one can imagine.


#10

@vasregret … What have you herd about vas to epi being so bad? I know now that the guy was just taking my money … But he was the head of urilogical surgery at UC Davis…and he said that it was the only area that he could find that wasn’t clogged with old dead sperm. What do you think that he should have done? An open ended vas or vas to vas and just hoped for the best, And the only other option was to vlose up and say sorry…why do you think this was so bad and what do you think that he should have done? Thanks


#11

All I can say is that Dr jarvi told me that a vas to epi connection won’t help a pvps guy. Maybe it’s because of the more invasive nature of the surgery, I don’t know.

Dr p says the same thing about reversals for pain and I suspect Dr marks would too.


#12

Update for anyone interested: visited my primary doc today to discuss my PVPS (I’m almost 1 year post-vas). When I saw the uro a few months back he did a very gentle exam, proclaimed there were no abnormalities, I should give it time and take ibuprophen when needed. After that I did a bunch of research on my own and tried to pinpoint the source of pain. For me it comes from a spot near the top side of the testicle on both sides. I suspected this is the epididymis, but I wanted confirmation from a doctor.

My primary doc started his normal exam, didn’t notice anything, then I pointed him to the tender spots. He had to feel around a bit but eventually found the spot on both sides where he puts pressure, I feel pain/nausea. He said he felt a pea-sized lump on the left, nothing palpable on the right (I feel pain on both sides). He said that the pain and lump, likely sperm granuloma, were within the epididymis, but the whole epi isn’t painful, just localized to specific spots on each side. He referred me to a urologist who is supposed to have a lot of experience, I don’t know if he believes in PVPS, I will find out in a couple of days.

I am still leaning hard in the direction of reversal, but wanting to talk it through with some docs and hopefully someone with experience treating PVPS. I have my appointment to talk with Dr. Marks next week, I think he will have the best knowledge and may be able to cure me via reversal, I’m hoping. My thoughts are that since my pain is mostly if not completely coming from the epis, I believe I have congestion pain. My pain started during the vasectomy and never went away completely, clearly the result of the procedure. Seems like the granuloma is my bodys response to the sperm and pressure backup. So, I’m hoping reversal can release the pressure and backup, and hopefully the granuloma within the epi will just resolve over time. Since I just have epi pain, that is not from the vas surgical site healing, that is upstream of the vas. It just seems very consistent with the idea that it is caused from back-pressure and/or the body trying to deal with a bunch of dead and dying sperm in the epi, and that opening the system again might be a long-term fix.

I felt a bit like a crazy quack in the Dr. office pulling out my urology journal articles, but when he started to say this is unusual and there really is no great treatment option, I could say actually there are some reviews of various treatment options and in some cases reversal is curative, especially for congestion pain. Anyway at least I got him to take me seriously and I will see what Kaiser urologist #2 has to say in a couple of days, I will update after that.


#13

Don’t be ashamed to do this. You really need to educate docs on this stuff, and bringing medical articles/journals is a great way to legitimize your problem.

I’m kind of shocked that your urologist didn’t squeeze your epi’s to see if they were a source of pain. He obviously knows where they are, they’re not hard to find, basically it’s like a worm wrapped around your testicle. When Dr. Jarvi examined me, he squeezed the top of my epi, which hurt quite a bit and he said that because of the epididymal tenderness that it was a good indication for reversal.

It kind of makes me wonder if the urologist who did your vasectomy was purposely avoiding touching your epi’s so he could say ‘no it’s not PVPS.’ Just a thought. A lot of guys here have been told some real slimy, shady stuff by the urologists who did their vasectomies.

If the other urologist that you’re seeing suggests something like an epididymectomy, then RUN. That is an old-school way of thinking and has helped pretty much no one.

Good luck and I hope your insurance will cover a reversal if that’s what you decide to do.


#14

Thanks. Unfortunately insurance coverage for the reversal doesn’t seem likely, but maybe if I can find the right Dr within Kaiser to champion my cause, who knows. It’s worth talking with them, but I’m not too optimistic.


#15

Where are you located. I’m a Kaiser guy too. Kaiser offered to cover my reversal 100% if I went through them. Dr. Shapiro in LA would have done it.


#16

I am in the SF bay area. I’m not sure if it would be covered or not… The uro who did the vasectomy wasn’t really understanding my issue, told me a reversal could be done but it wouldn’t be covered and he wouldn’t recommend it. But, today I saw another Kaiser urologist and got a completely different answer. He recognized my issue, that it does happen to some men, and said reversal was a reasonable idea to pursue. This was a major step for me, no doctor has said reversal is a reasonable idea so far until now. But of course he wants to try more conservative things first.

He referred me to a specialist in Kaiser Oakland who does reversals and is apparently the local expert on this stuff at Kaiser. He said that guy would be able to say whether it would be covered or not. It helps to know that it was offered for you through Kaiser, that makes me more optimistic. I’m talking with the Kaiser microsurgeon and Dr. Marks at ICVR next week, so I’ll get more info about all of this. Honestly I have come to terms with the idea I may need to spend $10K to make this go away, but if it does go away I am OK with the expense. I might very well decide to spend my own money for a private reversal instead of going through Kaiser if I think my chances of success are better at a dedicated reversal clinic.

I am not sure I want to rely on the doc at Kaiser to do the reversal, but I am thinking if I can get him to recommend a reversal and that it should be covered, then maybe I can be partially compensated if I go out of network. I will try to get a good sense of his success rate with reversal for PVPS before I let him near my junk with a scalpel. On the other hand, an operation in my area would be a lot easier logistically for my whole family than flying to AZ. Tough decisions, but ultimately whatever I think gives me the best chance to become pain free will probably be the direction I go.


#17

Hi Kevin, I had a reversal and it was one of the best decisions I ever made. Best of luck.


#18

Good to see you again Art. Most guys flee this place when they get to a good place but it really helps guys in the middle of this to see that some people are able to get better.


#19

@Thissucks…sorry i was trying to send a message to a different topic so i tried to delete it. Sorry if it didnt work.


#20

Exactly, else you only hear bad news.