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From: LF
Date: 7-3-03
Subject: Improvement in Chronic Pain Situation Through a Helpful Doctor

The second urologist I saw is Dr. Frederick Burrell who works out of Med Clinic in Sacramento. His office address and phone # are 3160 Folsom Blvd. Sacramento Ca. 95816. 916-733-3333.

My own situation has improved notably after Dr. Burrell made a single anesthetic injection into my vas deferens near a small granuloma. That was in February 2002 about a year after I was snipped. For about two months I had been experiencing pain anytime I tried to have sex. Before that I had congestion and inflammation in my testicles which persisted off and on during the first year after surgery. I had been pondering having a reversal but he dissuaded me from having one without trying a series of anesthetic injections first. In his estimation reversals alleviate pain in only half of the attempts and there was nothing to lose in trying the injections first. Not long after the first injection and up to now I've been pretty good except for a brief and occasional ache after ejaculation.

Response: Isnít it ironic that we have these vasectomies done with the promise of permanent contraception, then many of use end up with substantial permanent pain when we try to have sex? Whatís wrong with this picture?

Thanks for the recommendation of Dr. Burrell. It is good to know of doctors who have the ability and willingness to treat PVPS well. I hope your situation continues to improve.
 
From: TH
Date: 7-7-03
Subject: Leave the Equipment the Way God Made it.

I also want to thank you for the support. It relieves me to hear that some medical professionals are finally admitting that they have been causing further and more involved damage to the human body by performing these so called simple procedures. Bottom line, leave the body alone as God intended it to be, intact and whole in every since of the word. Anytime we go messing around with nerves and hormones we are asking for trouble.

Why is it with men that anything done below the belt is considered just a simple little snip and not to be taken with much more than a grain of salt, AND, if there are complications, you don't dare say anything or you are considered a wimp or wussy! When is the rest of the medical community going to realize the permanent damages they are causing, both physically and mentally?

I appreciate the guts you have to come forward and let people know they aren't alone. It isn't easy letting the whole world know about a very personal problem like we are dealing with. It's embarrassing to say the least and to let the whole world know takes a lot of moxy. Now we have to make the medical community aware. We're starting to make (some) headway with the issue of circumcision, finally, now we need to add the vasectomy to the list!

Just curious, what is your background? Are you in the medical field at all?
I also appreciate the offer to talk about it. I'm not one to open up like I have here on the computer, especially about something that I feel has done so much personal damage, yet is taboo to speak out in public about. It seems it is easier to let your feelings known over a computer than in person although there should be some sort of support group for those of us that have gone through such a life altering procedure with the idea that it is no big deal and once the little snip is done you won't have anything to deal with or worry about againÖ. WRONG!

Response: I couldn't agree with you more. God was a pretty good designer, and, as a race, we seem intent on modifying the design for the sake of convenience. Using surgery to try to correct something that is broken and lie-threatening is one thing, but surgery to disable a healthy functioning system is another. BAD IDEA! Itís asking for trouble. The problem is the medical advice we get says we can make all of these modifications to one of the most basic systems in the body without any negative result. This assertion defies common sense and what your body naturally tells you.

As far as guts goes, I have often wondered where courage stops and stupidity begins, but Iím going to tell the truth of my experience anyway, and give a forum for others to do the same. The status quo never changes until someone pushes outside the box. Here we are. If anyone is going to help us in our healing, it is going to start with ourselves.
 
From: TE
Date: 7-8-03
Subject: On the Rocks

I've been reading your website for the last few months, and learned a lot. I'm going through hell now myself. But first off, I see a lot of the info on the web is dated 2001 - any reason for not following up with it, or, like me, are you sick and tired of the topic?? It's almost hard for me to talk about my issues any more.
I went to my endocrinologist this morning for another follow-up appointment. We're now doubling the Testim dose to two tubes per day, and nothing saying we might not go for three or four by the time we're done. I was off of the medication for 2-3 days a few weeks ago, and could not even get out of my office chair at one point. I feel as though I am now disabled without HRT [Hormone Replacement Therapy].

Bottom line, I had a great urologist with 25 years of experience, and according to him, no andrology problems like mine from any patient whatsoever. My endocrinologist, also with 25 years of experience, has me as his first patient with this disorder due to the vasectomy. He agrees in concept that autoimmune orchitis is to blame, but since there was no testosterone level taken prior to the vasectomy, there is no way to prove this all happened.

I'm going to try to chase down some of the info from the links page you have. I want to first determine what happened to me, how it happened without warning from the urologist, and how this should not happen to any more men. I'm considering a malpractice lawsuit, but without the data, I'd be throwing my chances for success away. Thank goodness for the insurance as the cost of my meds I picked up today, without insurance, would have been $256 for this month's dosage.

Marriage? On the rocks. I received the vasectomy as a stipulation of marrying my second wife. A year after the marriage, I am no longer the same person I was, and she calls me a "stranger". How much fun vasectomy can be!

Response: Let me send you my book on disk free of charge so you can have all of the current references available. Let me know an address to mail it to, the file is too big to send over the Internet. Feel free to call if you would like to discuss any of the things you have mentioned further. Needless to say, I understand, and, yes, in some ways I'm sick and tired of writing and talking about this too, but it has to be done since there are so many guys like you and me that have had such bad experiences.

As far as the updates go, Iím posting them as fast as I can get to them. I reply to messages within a few days most of the time, but posting them to the web site takes more time, and I have to fit all of that in amid my daily medical and pain management, while trying to have a life and provide for my family. I think you know the drill. Just be assured, I havenít gone away, and donít intend to. As far as the web site is concerned, it has been one of the best tools for communication and healing available, and far beyond my initial expectations.

Like you, testosterone therapy has been one of the cornerstones of my post-vasectomy treatment and has helped me eliminate autoimmune symptoms and improve my energy levels, neither of which were problems before my vasectomy.

By the way, my urologist claimed to never have had a pain problem with a vasectomy patient before me after more than 1,000 vasectomies. When the articles I pursued in the local press came out, men started contacting me with another story about him and his partners since the other patients finally had someone to talk with who would listen and believe them. There were dozens of other men similarly afflicted in my small area alone, some of whom lost testicles because of their vasectomy problems.

Besides, it's all over the literature, which you will see in the book. My guess, if your doctor has been practicing for 25 years, he's seen plenty of this, and just wonít, or can't, admit it due to the liability. Thatís something youíll never know for sure since you donít have access to the records. What you do know is now you have to be your own best health advocate.
 
From: JH
Date: 8-07-03
Subject: Autoimmune Cascade Following Vasectomy

I am in my mid-forties, and had an open-ended vasectomy a year ago. My friend had a vasectomy done at the same time, and he has had no problems. On the other hand, since that time I have acquired lactose intolerance, irritable bowel syndrome, Hashimoto's hypothyroidism, Rosacea, prostatitis, and interstitial cystitis. Information I have acquired suggests all these problems can be related to autoimmune responses of the body - yet no doctor I have seen, including first and foremost the initial urologist who performed the vasectomy, believes there is any link to the vasectomy. I even went to an immunologist to have a full blood profile. He ruled out all major common autoimmune problems, such as RA, Lupus, and MS, and he could not conclude that my body has had any marked increase in my overall immunological response to the vasectomy. Yet he also admitted that there could be as many as 5,000 antigens associated with autoimmune responses of the body, and you just can't test for everyone of them. Nonetheless, I can't dismiss that there is a correlation. In particular, the symptoms related to the prostatitis and bladder problems have had no help with antibiotics or other drugs - so I continue to suffer from mild testicular pain, lower abdominal tension, a constant feeling of fullness in the lower abdomen, sense of urgency, and reduced bladder function, all of which are magnified after ejaculation - reducing intimate relations with my wife. It is ironic that the procedure I underwent to enhance intimacy has now had the opposite effect.

I have accepted "what is" at this point. Maybe it is totally coincidental, and there is no link between my current physical ailments and the vasectomy, but from what I can surmise, once autoimmune problems manifest themselves, there is no cure, no reversal, and no stopping the body's responses. Whether it is a virus, stress, childbirth, or other environmental factor, mostly women seem to acquire autoimmune problems brought on by some catalyst. I believe in my case the vasectomy was a catalyst - maybe in combination with stress, of which I have had much of the past 8 months - maybe genetic predisposition - who knows.

What I am now focusing on is stress reduction, diet, and exercise, as I realize this is my best defense to reduce the possibility of acquiring additional medical problems, autoimmune or otherwise, in the future. I just hope my urologist can at least find the right treatment to help with the plumbing, because it is hopefully a while before male menopause! I welcome your response. Also, feel free to utilize my experience to anonymously share with others who may visit your web site.

Response: Medical literature is replete with studies of significant and numerous autoimmune responses that occur after vasectomy, yet the medical community steadfastly denies any association between vasectomy and the kinds of diseases you describe. What does your common sense tell you: You didnít have a vasectomy and were perfectly healthy, then, you had the vasectomy and started to get sick in numerous ways? What is the likely suspect?

The problem is that autoimmune responses are so complex and baffling to medical science, and no one can predict how your body is going to respond to significant amounts of sperm antigens. Autoimmunity is the biggest mystery area in medicine. Very little is known about how to treat, or even diagnose many autoimmune diseases. Check out the web site for the American Autoimmune Related Diseases Association for more information.
 
From: SK
Date: 9-18-03
Subject: Went ahead after warnings; chances of pain were small

Firstly, I'd like to congratulate you on putting together such an informative website, dontfixit.org. And I hope you are in good health.

I hope you don't mind my imposing on your time, but you clearly are extremely knowledgeable about post-vasectomy pain, and I could certainly use some good advice.

I had a closed-end, scalpel vasectomy eight weeks ago. I cannot claim to have been uninformed about the prospect of post vasectomy pain, as I had read a number of websites (including yours) focusing on the pros and cons of doing the procedure, but in the end I decided the risk was small. And the benefits of sterility seemed highly desirable, as my wife and I do not want more children and have always had an active and enjoyable sex life. Well, we shall see...

In my case, the first week or so after surgery was more or less uneventful. I had a bruise and some swelling, but I did not need to take any pain medications. The next week I started to feel some pain in my left testicle and started to take Motrin three times a day. By the following week I was feeling about 90 percent; even went out for a swim.

Since week three, though, I've been in moderate discomfort on both sides. Mostly just a feeling of pressure that comes and goes, made worse by physical activity. Doc said give it time ("it's congestion") and changed the medication to Naprocin. Doesn't do much, if anything. And now, within the last 24- to 48- hours, I have been in some serious pain. The location of the pain is right where the vas was cut, on both sides. And it's constant now. I'm worried. Can't sleep. And I'm a mental wreck.

I know you're not a doctor, and I'm sure you get a million messages like this, but I'd be grateful to get your sense of what's going on. I'll be seeing the urologist again soon, and I'd like to know what to ask, what to expect, what to request, what to demand.

For example:

+ should I go on antibiotics, even if a urine culture comes back negative for bacteria? I've read that some men get (bacterial) epididymitis and that antibiotics can help, even though my urologist dismisses this as a cause

+ is it too early to do a nerve block shot?

+ what type of diagnostic tests should be done at this point, e.g., MRI of the scrotal area?

+ I was intrigued by the notion that reducing the manufacture of sperm via hormone therapy may help. Are there any side effects?

Obviously, being in Japan limits my options, but if this gets worse, I'll gladly come home to talk to some specialists. Perhaps it's a bit early to be thinking about worst-case scenarios, but I just have this "feeling" that this isn't going to get better. Thanks in advance for any insights.

Response: I'm glad you're getting on the situation early. Many doctors will tell you, "Don't worry, this will go away" at this stage, which is only true sometimes. The doctor that says congestion is the problem is probably partially right since all men who have a vasectomy have ďcongestive epididymitis,Ē which can be silent or painful, but what you describe is most likely a result of rupturing that has occurred in you epididymis, probably on both sides by now from the sounds of it.

Sperm is getting into your bloodstream where it was not naturally meant to be and your immune system thinks it's being attacked by a foreign substance at the rate of 50,000 cells a minute. Antibodies are attacking the epididymis, and probably the testicular cells themselves by now which causes a chronic inflammation and pain. The symptoms will probably wax and wane over time as is typical for autoimmune responses. Does this sound correct to you given the experience so far?

You can have a reversal done to alleviate the pressure, but the immune system assault will continue as long as you are producing sperm, since antibodies are now being produced en mass that will cross the blood-testis barrier. The only way to stop the immune system reaction is to stop sperm production, either by removing the testis, or by using testosterone therapy or some harsher form of medication.

Presumably, according to my immunologist at least, the immune response may moderate over a period of five years or more. The important thing for me was to get the systemic response to sperm to stop since it was making me feel like I had the flu emanating from my groin spreading throughout my whole body every few days for no reason. That effect has moderated as my sperm count went down to zero. Others have described similar results on testosterone therapy. By the way, the more fertile you were before the vasectomy, the more likely you were to have a significant immune reaction. I guess no one told you that.

In the long run, the only way to eliminate or at least localize the response is to put the pieces back together in original condition with a reversal, trying to take out as much of the damage and scar tissue as possible at the same time. You stand the risk of tissue injury in this surgery since it is a major one. A reversal did not alleviate the nerve damage I sustained from my vasectomy that has caused me continued pain, though I have been able to mitigate the autoimmune responses. If you go onto testosterone therapy, mitigate the autoimmune responses, have a reversal and then go off the testosterone therapy subsequently, you may very well have a continued immune response, but if the reversal is successful the reaction may be restricted to the genital tract, as is the case for me and many others who have had reversals. That is why I have had to continue the testosterone therapy for four years now since every time I go off it the antibodies come back and my pain symptoms worsen.

I'd be glad to send you a JPEG version of my book on disk if that would help you with further information and research. Let me know.

I don't mean to sound negative, but you deserve to know what you are up against. Be hopeful, but be prepared for what may be a long haul. Let me know how I might be of help in any way (i.e. further correspondence, doctors to talk to, phone calls, etc.).
 
From: TP
Date: 9-19-03
Subject: Eunuch?

I had my vasectomy in August 2000 here in the UK. I am 48 years old now.
All went fine, healed up quick, I had no problems at all, until the start of this year. The pain comes and goes, but when I have the pain the whole scrotal area is painful, and the testicles ache like hell. I find the pain is also in the top of my legs as well. The testicles are extremely sensitive and the pain is really severe and it is if I have been hit there, but the pain lasts for ages. I find sex painful at this stage, but try to have sex every 2 to 3 days. This seems to keep the pain to a minimum.

I have read most of your site, it is very good, and informative for which I congratulate you. I am really glad I have found you. I have thought about testicle removal, but as you say this can lead to more problems, but not as much as those who have to have all the other surgery first, before removal.

It really is a problem the medical world has to face up to, I doubt it will be long before I have constant pain, or a time when I have little pain. My wife has felt for the obvious lumps etc., so far,nothing yet. I know that if the pain does come on a more constant throb, I shall have the testicles removed, I cannot put up with this dull ache or pain. I have had my kids and so my testicles have had their use, and it leaves the "eunuch" problems to deal with then.

Response: Don't be too quick to sacrifice the boys down under. The pain specialists I've seen say that doing surgery to relieve chronic pain caused another surgery has a 50/50 chance of working at best. Personally, I know several guys who've had testicles removed for pain and hurt as much or more after. This relates to constant trauma to the central nervous system, known as Central Sensitization. See Dr. Carruthers there in the UK regarding Testosterone therapy to get your sperm production down, and consider a reversal in the long run, which he can advise you about. If you don't want to do a reversal, an open-ended vasectomy may relieve the pressure, though autoimmune responses will continue. I'd be glad to send my book to you on disk for reference if that would help.
 
From: KK
Date: 9-29-03
Subject: Pain during ejaculation

Thank you for responding. Also, let me say that this is all very difficult as you know. This is also difficult for me because I think my situation is far from worst-case- I feel almost guilty complaining or worrying when I read all these horror stories. I thought I would write out more of the details.

I'm 39 and generally pretty healthy. Vasectomy was March 7, 2003. Seemed to be more swelling and pain than the 'norm.' I returned to the doctor, they put me on anti-inflammatories for 30 days. I was not ready for sexual activities for around 30 days. I diligently ejaculated 20+ times in about one month before the semen analysis. First analysis was positive! I was freaked. Ultimately I had a second test that was neg. and then a third to verify which of the first two was wrong (third was neg). I gotta believe the first test was simply botched as I believe I was fully flushed. That was three months down the road before it was all done.

It seemed to be doing pretty well after that, dull little aches and occasional twinges diminishing in frequency. Then, in about the 5 or 6 month range I started to notice some pain during intercourse or masturbation, I even recall once it hurt quite badly when I awoke with an erection. The kicker was last Wednesday, during masturbation this pain hit me like never before. It was in sync such that as climax approached the pain peaked. It was so bad it stopped the ejaculation/orgasm. As soon as that stopped it let up. I tried again, same thing. I persevered and the third attempt was able to finish, but the severe pain persisted for a solid 5-10 minutes. I still have a dull ache right now, 5 days later.

Anyway, I was of course concerned that I was turning into a bad case. I called the urologist, and he said to come in. He said that the swelling, etc. was not 'remarkable,' there appeared to be no infection, any of that. He said basically time will heal, it will resolve. Yet he had made some comment like 'he'd never heard this complaint.' He recommended an anti-inflammatory medication, offered me an antibiotic, yet said I didn't need one.

The more I thought about what he told me, the more bothered I got. If he hadn't heard that complaint, then doesn't this make it an unusual case (at least in his experience). He said, ďWell, we could image it, but it wouldn't show anything....Ē Isn't the point of imaging to see things you can't feel? Now, he's not a real young guy (not like the guy who did the vasectomy). I called him back. I asked about isn't this unusual and he said, something like well, it's not unheard of. I asked about the Ibuprofen... when am I supposed to take it if it only hurts during ejaculation. All he really said was it shouldn't be taken long term. DuhÖ.

Response: The weird part about hosting this web site is having completely frank and honest discussion with other men I have never even met before about intimate parts and functions of our genitals. I've gotten used to this as doctors must, but know that for most guys, not only is the pain a problem, but discussing it can be an even bigger problem. You wouldn't believe how many times the first contact I get is from a man's wife or girlfriend because he is so stressed out about the problems he is experiencing and the prospect of revealing what's going on to anyone else.

That said, it sounds to me like several things are going on in your case that I can relate to. For one, after my vasectomy, I had consistent body aches and flu-like symptoms that radiated from my groin outwards. I also had sinus congestion for months on end, and that had never happened to me before. Once I had a reversal done and started the testosterone therapy and got my sperm count down, these symptoms went away for the most part. I am left with pain from nerve damage during the original surgery. The nerve damage gets aggravated whenever I move. Your description sounds more like congestion, rupturing and autoimmune symptoms, which is more common than extensive nerve damage, but the two can occur together as in my case.

I remember that when I tried to ejaculate before my reversal, it often felt like I was being stabbed in the testicles. The vas is composed of three layers of smooth muscle that contract during ejaculation. Iíve heard numerous men complain of pain and/or changed and diminished pleasure sensation and orgasm after vasectomy, which makes a lot of sense if you are cutting off the connection to part of the system involved in the process.

I can't help but think that in my case the natural strong muscle contractions that occur during ejaculation were squeezing tissues that were already inflamed and sensitized, causing more ruptures and autoimmune responses. Since my reversal and going onto the testosterone therapy the stabbing pains have diminished, but I get vice-like sensations in the inguinal canals at the creases of my groin during and after ejaculation quite often that make the prospect of intercourse with orgasm and ejaculation very unsavory.

I have several suggestions in this regard. Before you attempt any kind of sexual activity either solo or with your wife, sit in a warm tub for up to several hours and be conscious of breathing as much relaxation down into your pelvis and genitals as you can. This can become a meditation practice that is very helpful, not just for your sex life, but for pain relief and centering yourself in general. Try stretching while in the tub too. The more relaxation and blood flow you have in any area of the body, the more healing will occur. There are also some stretching and massage exercises that have been developed over thousands of years that are discussed in my book. I'd be glad to send you a copy free of charge.

For myself, I have had to learn how to have and enjoy intercourse without ejaculating on the rare occasions that I can attempt it. This has also become a practice of self-awareness for me, and when the pain becomes too severe during sex, I stop or at least slow down. When I have pushed through in the past, I pay for it with extra pain for days afterward. This is a huge change from what I would have considered more typical "goal-oriented" sex before my vasectomy. Even at that, I still feel that it is important to have as much of a sex life as possible to have a relationship with my wife and keep my system healthy. I'm sure this is true for others as well in their lives.

My experience has been that normal sex can push the line between pleasure and pain. Sex while experiencing post-vasectomy pain syndrome goes way over that pain line, so that we need to adapt our sex practices to the reality of our conditions. It becomes a practice of self-awareness and self-kindness, which are good things to engage in. The motivation to do so is quite significant.
 

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