Post Vasectomy Pain Syndrome

[MartinU2062]

A life with pain

So, this is embarrassing for me.

I suffer from Post Vasectomy Pain Syndrome, this condition effects approximately 1 in 100 men that have a vasectomy. the recommended treatment is reversal, however, reversal is not available on the NHS and must be funded privately.

The op

In June 2019 I decided to have a vasectomy as a permanent method of birth control. we have 2 wonderful daughters and do not want to see our family grow.

This is the worst mistake I have made, it has left me feeling mutilated and depressed.

The operation itself went well, in and out of the clinic within an hour with the advise not to move much for a few weeks, regular pain relief, however, I got an infection within a week of the surgery that needed a course of antibiotics.

After the procedure

6 weeks after the surgery, the pain had not subsided so I went back to my doctor who prescribed pain medication and advised it may take a little longer to calm down.

6 months after the surgery, the pain still had not subsided and I had also found a couple of lumps. I went back to my doctor, I was able to give a much fuller description of exactly what was going on, This time, as well as more medication for pain and a course of antibiotics, I was sent for an ultrasound to try and determine the cause of the pain and lumps. the lumps are thankfully only cysts, but everything else looked fine and no cause for the pain could be seen. Once again, I was advised this may take longer to heal.

12 months after the surgery, I cant take it any more, my mood is so low and now even walking for long distances is becoming an issue. I am in constant pain and noting is taking the edge off it. I have tried all sorts of prescription pain medication and nothing helps.

Where I am now

I am like a bear with a sore head and grouchy to be around to the extent that my wife and kids have had words with me about it. I often feel alone and unable to talk about this, I am not the best at opening up and sharing my feelings as it makes me feel weak and helpless, and lets face it, who will truly understand what I am going through unless they have gone through it themselves?

15 months after surgery, I am referred back to the consultant that performed the surgery, who advises I really only have 2 options...... Live with it or have it reversed. he confirmed the pain is not caused by a sperm granuloma, but by an enlargement of the epididymides caused by backpressure in the vas deferens on the testicle side of the blockage caused by the vasectomy.

Please feel free to research the full symptoms of Post Vasectomy Pain Syndrome (PVPS)

How I can resolve this

This month (November), I had an appointment with a private surgeon who confirmed the findings, and talked me through the procedure, the causes, the risks and advised there is 70% chance that this will be cured by a reversal.

The cost of the reversal is £3500.00 as the NHS will not fund this, even though i am in pain. They will give all sorts of pain meds but not operate.

For me, the chance is high enough to warrant the operation but I need help to finance this so i have set up a crowd funder - crowdfunder.co.uk/treatment...

I know this year has been difficult for everyone and any help towards this would make a massive difference - I'd love to live my life without pain again.

[Hidden]

I have looked at a few NHS Trust information leaflets. They all mention your problem as a risk of surgery. Usually you have to consent to the risks of surgery before you undertake it. Did you do that? Did you contact the urology department who carried out your procedure?

[MartinU2062 in reply to Hidden]

Yes I did, they are the ones that pointed me to private surgery for reversal 😪

[Hidden in reply to MartinU2062]

I still have the side effects of my kidney tumour removal. I guess I have learned to live with them. It is not easy and I hope that you get the relief you seek and that the surgery reversal works for you. Take care.

[Ethan_Scruples]

Hi, could you post an update to tell whether you have gotten a reversal, or had any improvement? Thanks!

[Wifeforlife in reply to Ethan_Scruples]

Hi Ethan. I recognize your name from the pvps forum. As I’m always trying to read helpful advice for my husband on that page- What happened? It was so useful in this hard, life changing journey.

Just found this site, but not as sure if there is much help here. 🥺

[SimplySS00 in reply to Wifeforlife]

Hi. I’m wondering what happened to. I too am I wife that has been using the website for guidance and support. Sad the site is down

[MartinU2062 in reply to Wifeforlife]

Hi,I actually went for a reversal - it cost in excess of £3000.

the Reversal this cleared the pain I was suffering , but it was not a pleasant procedure at all.

I was laid up for about 2 weeks, hardly able to walk due to the pain

[Ethan_Scruples in reply to MartinU2062]

That's great to hear. Could you say what month you had your reversal? Did your reversal change sensation during sex or orgasm at all?

[MartinU2062 in reply to Ethan_Scruples]

In February.It has greatly improved my sex life.

The pain I was in was crippling, I did not want to have sex at all because of it.

So glad I had it reversed

[andrews95 in reply to MartinU2062]

Hello. I would like to know how long it took from your vasectomy to the reversal. Do you think time has anything to do with whether or not vasovasostomy surgery is successful? Do you think the time have some relation with the recover after the reversal? I have one year with severe pain right now, I want to do the reversal but I don´t have the money.

[Ethan_Scruples in reply to Wifeforlife]

Hi Wifeforlife,

I don't know what happened to postvasectomypain.org or when the site will be back up. There are a couple of Facebook groups like "Vasectomy support group for men", "Post Vasectomy Pain Syndrome - Support Group" and the one that has the most traffic is "Vasectomy Support Group"

I collect stories at reddit /r/postvasectomypain and am working on an index to all of the stories about PVP that I find on the internet. There are more than 1000 stories indexed there in chronological order.

I'm interested in hearing your husband's story, assuming you haven't already documented it on postvasectomypain.org

[Wifeforlife in reply to Ethan_Scruples]

Hi! Thanks for the suggestions. It was a huge disappointment for my husband to see it taken down as we found so much great information and guidance through that site.We never posted on that page as his story reads very similar to many.

Multiple Urologists taking stabs in the dark to try to figure what is wrong.

He started with the least invasive steps..

Too much antibiotics, varicocele embolization then in July 2021 he had a reversal. Waiting to see if this will end the pain. Meanwhile, anxiety attacks, depression and PTSD.

Would you like the full story here or on Reddit?

We need each one to teach one- vasectomies are no good.

Trying to help spread the word in whichever way we can.

Thanks for your time!

Jenn

[Ethan_Scruples in reply to Wifeforlife]

I hope recovery from the reversal goes well. It's emotionally taxing for sure, but people can improve from this injury for a very long time -- just because you are a year out doesn't mean that you have more gradual improvement ahead.

Whether you put the story up here or on the subreddit is totally up to you. If you put it here, I'll add the story to the subreddit at some point but normally it would take a while as I have a backlog of stories and I only post one per day.

It appear that the owner of postvasectomypain.org currently has no plans to put the website back up. I have asked him if he would make a read-only copy available for archive purposes.

[Ethan_Scruples in reply to Wifeforlife]

Hi Jenn,

Just wanted to follow up to ask if your husband has had some improvement since you posted last. Also I wanted to ask when he originally had the vasectomy (month/year) if possible.

Thanks!

[Wifeforlife in reply to Ethan_Scruples]

Hi Ethan, So husband is now 6 months into recovery from reversal. A little over a month ago he went to see a sports therapy chiropractor. This doctor after listening to his work history, examining his movements and asking about a broken bone in foot (husband wore a boot for over a month) believes that my husband had torn all his ligaments in groin, abductor and hamstring in left leg. Stated that all theses muscles were damaged with scar tissue from not repairing themselves correctly. Dr says that all these layers of muscles in this particular area can cause testicular pain.

Through massage and stretching Dr believes he can alleviate the pain.

We have had a rollercoaster of emotion. There has been some relief- but after over a year of pain he’s still struggling both mentally and physically. We put our trust in each of these different treatments and nothing yet has given him the relief he is longing for. One day he’ll believe in the chiropractor then the next day he’ll question why he ever did the vasectomy and then we start this downward spiral of whys and what ifs.

He has just looked into another therapy the other day. Something about a vitamin shot into the sitting bone area. Unfortunately I haven’t researched it yet because I’ve been at work. I’ll keep you posted.

He is also going to see a homeopathic/naturalpathic doctor soon. At this point we are open to hearing thoughts from anyone else but his Kaiser doctors.

Hope you are well and finding relief and answers,

Jenn

Original vasectomy was Dec 2017. A few problems originally where a possible infection require wound to be reopened, cleaned out, antibiotics then stitched up. Then one or two pain issues and Urology visits throughout the 2 years prior to current pain.

[Ethan_Scruples in reply to Wifeforlife]

>This doctor after listening to his work history, examining his movements and asking about a broken bone in foot (husband wore a boot for over a month) believes that my husband had torn all his ligaments in groin, abductor and hamstring in left leg. Stated that all theses muscles were damaged with scar tissue from not repairing themselves correctly. Dr says that all these layers of muscles in this particular area can cause testicular pain.

Did this injury occur prior to the vasectomy, or afterwards? It reminds me of Choo from the forum, who tore some ligaments after his vasectomy:

hormonesmatter.com/vasectom...

I believe physical therapy can be very effective. Hopefully it can help your husband.

I posted your story to the subreddit today, here:

reddit.com/r/postvasectomyp...?