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Remember,
this is not intended as a forum for medical advice, only discussion.
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: Isn’t 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? What’s 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.
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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 again…. 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! It’s 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 I’m 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.
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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, I’m 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
haven’t gone away, and don’t 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 won’t, or can't, admit it due to the liability.
That’s something you’ll never know for sure since you don’t have access
to the records. What you do know is now you have to be your own best
health advocate.
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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 didn’t 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.
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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 “congestive epididymitis,” 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.).
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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.
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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, “Well, we could image it, but it
wouldn't show anything....” 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.
Duh….
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. I’ve
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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