Dealing with Orchialgia

[mrt (imported)]

I thought I would kick this off by re-introducing myself and saying a little bit about dealing with Orchialgia.

Which btw = Chronic Pains of the testicle(s). I got it thanks to a really bad case of the mumps long ago when that was still a fairly common disease. Mumps mostly makes you feel like a chipmunk with too many acorns in your cheeks but some cases also get into the testes and can cause serious pain and damage if your past puberty. In my case I had a "pair" that felt like they had just taken a line drive shot from a major league baseball star. OUCH! The sharp pain dialed down to a dull roar and I just "got used to it."

The problems it caused mostly concerned sleeping. Being woken up at 4AM on a regular basis to stabbing pains or just dull throb (of the ungood kind) really didn't make my day. I tried taking OTC pain relief (minor improvements) and in general just put up with it. Long drives were murder. Sex could be very painful. In short no fun.

Years later I started acting "depressed" and lost interest in everything including sex. My Doctor said it sure sounded like "depression" but she checked my hormones and found my levels to be quite low and considering my age really low indeed. Orchitis had apparently fried my testicles. So I went on a drug called Androgel which is a Testosterone gel. This made life a ton better! It also caused atrophy of my already screwed up testicles. When they got small enough they started to migrate up my inguinal canals quite often and I found that the pain was less when they were up inside me. For a short I tried "tucking" at night so I could get 8 hours of sleep. This seemed to help but when they came back down the pain was worse so I got up the nerve to bring it up with the same doctor who cured my "depression" with HRT (Hormone Replacement) My doctor went over what she knew suggested that one of the courses of action would be replacement of my atrophied parts with implants thus curing the pain and the disapointment over having testicles better suited (size wise) for an 8 year old boy. My initial reaction was horror. The only thing I heard was surgical "removal" and this didn't work with my male ego.

After pondering it for 6 months and reading up on Orchialgia I found that while that was one way to deal with it there were others. And I felt less concern for my Natal pair as they continued to shrink, cause me pain because while on HRT. The truth is that they were not doing anything - anyway. So why not?

I spoke to a Urology "expert" I found on the internet. I had a few poor experiences and asked my family Doctor to select a new one for me. The new one was very straightforward and we tried a variety of drugs, injection therapy etc. I had some tense moments when I was asked to have a once over my a mental health professional. I didn't like the idea that my "sanity" was being checked. I thought I had a pretty good reason to go forward with this and thankfully the "shrink" assigned to me agreed! So I opted for Bilateral Orchiectomy and silicone implants. As my original doctor suggested this was a pretty sure fire way to cure the pain and restore the visual appearance that I wanted. I continued to stay on Hormone replacement Therapy and am very happy with my decision and my current treatment. I do regret not having done it earlier.

I got a lot of good advice from people on this forum who had "been there" and or "done that" I started up a forum on Yahoo Groups dedicated to treating Orchialgia so that future patients who want to get information on the treatments available and to be able to talk to men who have been there and done that. I also got some excellent advice on implants from Dr Alter who was the surgeon who worked on my friend "Hairless."

Its at http://health.groups.yahoo.com/group/Orchialgia

If you have (had) Orchialgia or are a significant other of a man with this problem your welcome to jump in. There is a files area that has some good info that may help you (or your Uro) with what the SOP for treatment of this fairly rare condition is.

If anyone has this sort of problem and is freaked out about public posting I'm happy to talk by Private Message. Don't think your the only one or there are no alternatives. And btw I'm not saying my solution (surgery) is the only way to deal with this.

[kristoff]

And while feeling free to post at MRT's yahoo site (encouraged), please also feel free to post here as well. Our site often comes in fairly high in the orders of searchs for things like eunuch, castration, orchiectomy and orchalgia. I would like for us to also be a purveyor of good information and experience to those needing it.

[gandalf (imported)]

This is what was wrong with me. I finally got the second Dr. to look further than the prostate. The first Uro saind it was prostatitis and after 30 days proclaimed me cured, even if I still had pain in my testes. the second uro tried all sorts of tests. The last on ewas novacaine in the right one. That didn't stop the pain so he agreeed the only solution was to remove the offending organs. Thank God he did and I really am hjappy with the results. Of cocurse, one of the provisions was to go on hrt since my insurance would cover it.

[mrt (imported)]

Sister K is correct. I'm this is just as good an area to talk and meet people to discuss Orchialgia. The one plus to the yahoo group is that its got a library section so you can download stuff. And if there are people freaking out about people with other deals going on they can go there where its just Orchialgia 24:7

And btw as I read my post I should have said that much of that 6 months pondering surgery was spent here talking to people like Hairless, DocT and many many others about what that option would really be like.

A belated thanks to everyone who makes EA possible.

[mrt (imported)]

This is what was wrong with me. I finally got the second Dr. to look further than the prostate. The first Uro saind it was prostatitis and after 30 days proclaimed me cured, even if I still had pain in my testes. the second uro tried all sorts of tests. The last on ewas novacaine in the right one. That didn't stop the pain so he agreeed the only solution was to remove the offending organs. Thank God he did and I really am hjappy with the results. Of cocurse, one of the provisions was to go on hrt since my insurance would cover it.

This seems to come up quite often. Doctors that say "your ok" when your clearly not. Thankfully you found one that listened to you, didn't think you were goofy and helped you!

[gpb3aol (imported)]

So the 64k question is, "can you fake the symptoms"? Sounds like a way to get around the mental health blockade.

Pauline

I thought I would kick this off by re-introducing myself and saying a little bit about dealing with Orchialgia.

Which btw = Chronic Pains of the testicle(s). I got it thanks to a really bad case of the mumps long ago when that was still a fairly common disease. Mumps mostly makes you feel like a chipmunk with too many acorns in your cheeks but some cases also get into the testes and can cause serious pain and damage if your past puberty. In my case I had a "pair" that felt like they had just taken a line drive shot from a major league baseball star. OUCH! The sharp pain dialed down to a dull roar and I just "got used to it."

The problems it caused mostly concerned sleeping. Being woken up at 4AM on a regular basis to stabbing pains or just dull throb (of the ungood kind) really didn't make my day. I tried taking OTC pain relief (minor improvements) and in general just put up with it. Long drives were murder. Sex could be very painful. In short no fun.

Years later I started acting "depressed" and lost interest in everything including sex. My Doctor said it sure sounded like "depression" but she checked my hormones and found my levels to be quite low and considering my age really low indeed. Orchitis had apparently fried my testicles. So I went on a drug called Androgel which is a Testosterone gel. This made life a ton better! It also caused atrophy of my already screwed up testicles. When they got small enough they started to migrate up my inguinal canals quite often and I found that the pain was less when they were up inside me. For a short I tried "tucking" at night so I could get 8 hours of sleep. This seemed to help but when they came back down the pain was worse so I got up the nerve to bring it up with the same doctor who cured my "depression" with HRT (Hormone Replacement) My doctor went over what she knew suggested that one of the courses of action would be replacement of my atrophied parts with implants thus curing the pain and the disapointment over having testicles better suited (size wise) for an 8 year old boy. My initial reaction was horror. The only thing I heard was surgical "removal" and this didn't work with my male ego.

After pondering it for 6 months and reading up on Orchialgia I found that while that was one way to deal with it there were others. And I felt less concern for my Natal pair as they continued to shrink, cause me pain because while on HRT. The truth is that they were not doing anything - anyway. So why not?

I spoke to a Urology "expert" I found on the internet. I had a few poor experiences and asked my family Doctor to select a new one for me. The new one was very straightforward and we tried a variety of drugs, injection therapy etc. I had some tense moments when I was asked to have a once over my a mental health professional. I didn't like the idea that my "sanity" was being checked. I thought I had a pretty good reason to go forward with this and thankfully the "shrink" assigned to me agreed! So I opted for Bilateral Orchiectomy and silicone implants. As my original doctor suggested this was a pretty sure fire way to cure the pain and restore the visual appearance that I wanted. I continued to stay on Hormone replacement Therapy and am very happy with my decision and my current treatment. I do regret not having done it earlier.

I got a lot of good advice from people on this forum who had "been there" and or "done that" I started up a forum on Yahoo Groups dedicated to treating Orchialgia so that future patients who want to get information on the treatments available and to be able to talk to men who have been there and done that. I also got some excellent advice on implants from Dr Alter who was the surgeon who worked on my friend "Hairless."

Its at http://health.groups.yahoo.com/group/Orchialgia

If you have (had) Orchialgia or are a significant other of a man with this problem your welcome to jump in. There is a files area that has some good info that may help you (or your Uro) with what the SOP for treatment of this fairly rare condition is.

If anyone has this sort of problem and is freaked out about public posting I'm happy to talk by Private Message. Don't think your the only one or there are no alternatives. And btw I'm not saying my solution (surgery) is the only way to deal with this.

[mrt (imported)]

So the 64k question is, "can you fake the symptoms"? Sounds like a way to get around the mental health blockade.

If you reread my history you will see that I was asked to do a mental health screening prior to orchiectomy surgery FOR Orchialgia. So I don't see how faking Orchialgia would avoided anything???

Btw as much as I didn't like having my sanity questioned by being asked to submit to this screening I now agree it was a worth while step and fully understand a surgeon being reluctant to do an Orchiectomy without one. I also agree that this is a valid step before SRS (Sex change) surgery.

If you want Orchiectomy on demand for non medical reasons you can always opt for Dr Kimmel but frankly I think sitting down and going over your reasons for this with a good mental health professional is worth while. For me it re-enforced the logic of what I was asking for, the whys and so forth. And what I expected to get out of it and what another person thought of it. *He said it seemed perfectly well thought out. Getting the benefit of a mental health thumbs up was a plus as well.

[Marco Polo (imported)]

Hello all. I'm into my sixth month of dealing with Orchialgia and had a flare up occur over the last couple of days which has me coming back to the well. The good news is that the pain isn't as intense as initially, and now it seems to be consistently in the right testicle. I spoke with my Urologist about an Orchiotomy, and he's done them before for Orchialgia, even bilaterals. I was surprised to hear that from a small Texas town doctor. Anyway, he only will perform it after a long period of time (read: suffering), like 3 - 4 years.

I've come to understand that removing a single nut won't really affect my quality of life, so I'm more anxious to have it removed now. So my questions are: do I keep pressing this guy, start soliciting from the three nearby university medical centers (Dallas, Houston, San Antonio) or just keep checking locally.

The other question my psch doc brought up and that was the issue of phantom pain. has anyone experienced this? I can't imagine it being worse than being kicked in the balls, but maybe it's more frequent or something. I don't know anything about it.

Finally, I'd like to say thanks to MRT for his kick ass Orchialgia Yahoo group, it's very active and has a lot of good info.

Marco

[mrt (imported)]

Hello all. I'm into my sixth month of dealing with Orchialgia and had a flare up occur over the last couple of days which has me coming back to the well. The good news is that the pain isn't as intense as initially, and now it seems to be consistently in the right testicle. I spoke with my Urologist about an Orchiotomy, and he's done them before for Orchialgia, even bilaterals. I was surprised to hear that from a small Texas town doctor. Anyway, he only will perform it after a long period of time (read: suffering), like 3 - 4 years.

I've come to understand that removing a single nut won't really affect my quality of life, so I'm more anxious to have it removed now. So my questions are: do I keep pressing this guy, start soliciting from the three nearby university medical centers (Dallas, Houston, San Antonio) or just keep checking locally.

The other question my psch doc brought up and that was the issue of phantom pain. has anyone experienced this? I can't imagine it being worse than being kicked in the balls, but maybe it's more frequent or something. I don't know anything about it.

Finally, I'd like to say thanks to MRT for his kick ass Orchialgia Yahoo group, it's very active and has a lot of good info.

Marco

Your way too kind. Orchialgia is chronic pain greater then 6 months if I remember how they define this. I would first ask this doctor if he would put up with waiting 2 1/2 years to have a broken bone properly set? And I would of course try the other options besides Orchiectomy to see if there was one that made things better. Nerve meds work for some men for example.

Phantom pains can happen from ANY amputation. And don't kid yourself. Orchiectomy is amputation of the testes. If you have to do it I strongly suggest you INSIST on inguinal Orchiectomy. It leaves a scar in the pubic area but this allows the surgeon to remove most of the spermatic cord.

One of our friends said they can do this now with a laproscopic "device" through the scrotum. If so? Great. If not? Inguinal! Insist on it. You get the highest chance of a complete cure.

Cord pains are just as big a problem (I've heard) as testicular pains. My Pain doctor suggested that before they cut the cord and remove the testicle Inject long lasting nerve blocks to the cord. Stopping any feeling before castration has reduced the frequency of phantom pains in some studies he saw. All I can report is it worked (twice) for me and I'm pleased with the outcome. Talk to the Surgeon about implants. If you have one out you might as well get one in. They come in a variety of sizes (from tiny) to huge. But you have to select a good company and "type" They make water filled ones, Silicone Gel (Overseas and soon in the USA Again) and solid SIlicone models. Insist on seeing (and squeezing) a sample) you might have one or two for the rest of your life. Might as well be the ones you want.

Don't fool around too long if this doctor can't find a solution. Check out that U hospital. Thats what I (and others I've spoken to) have done. Small town Surgeons just don't see that many Orchialgia patients.