Has anyone had a spread to their private region,,male or female,,I'm showing signs and symptoms there,,,any insight would be very appreciated and helpfull,and for respect to everyone, anonynous replies to me by PM will be kept confidential,,I do respect everyones privatcy here,Im really getting worried about whats going on with me, Anyone with insight or experience please reply,,,Thank you

Bobber -

Sadly, I know too many women who have been stuck with spread into their pelvic areas, both inside and out.

Ursula Wesselmann, MD, a highly respected neurologist, is said to run a wonderful specialty clinic, the Johns Hopkins Research Program for the Study of Chronic Pain Syndromes in Women, http://www.neuro.jhmi.edu/PelvicPain/home.html I'm not aware of anything like that for men.


Mike

Hi Bobber,
I read some information under rsdrx.com puzzles list #127 described burning, heat symptoms internally and exteranlly in the pelvic region. Also Mayo Clinic.com under diseases and conditions discusses this condition under V and the very last discussion under vulvardynia (sp)? Hope this helps. Your friend, loretta

I'm one of those women with pelvic pain, inside and out. I got shots Friday to help with it. I am back on my Methadone due to it getting worse.

I went to a new Gynocologist Thursday and he had no ideal what was causing the problem and really didn't care to find out. He sent me to a surgeon who thinks mine might be adhesions pressing on nerves. He's the second Dr. who said that.

I have had 5 surgeries in that area over the years so it could be ashesions for me. I just don't know for sure. I had to have tumors and cist removed and a hysterectomy.

It is very frustrating to deal with the pelvic pain. I am more frustrated that it's not something that the Drs. want to figure out.

Ada

Bobber,
I'm keeping you in my prayers, my friend.
I wish I knew something or someone who could help more.
As usual, count your blessings.

Pete

I appreciate all the insight and replies from you all,,This disease has invaded this region,,,The pain started as one random sharp pain in the left perineum area,Then there was a constant dull ache,followed by over the course of a few weeks,pressue in the perineum and pain when I would cough ,,Pain also in the end of the urethra after urinating ,like a UTI,,I went to a colon and prostate MD,,No sign of a fistula or fissure[Ive had both in the past},,But now,the whole area ,rectum,,perineum,scrotum,,burn like there has been acid or hot sauce on them,,and a red inflammed scrotum that comes and goes,,some penile area pain that is random,,I also had a rash come on my inner thigh that would come and go,,,and I had a rash that itched,,,And now theres spider veins forming on the scrotm ,,just like my feet and ankles,,,this is so terrible,,,I read on this site a year ago,where a man had RSD in his privates but dont rememeber his name,,I was really hoping it wouldnt affect the prudendal nerve,,but that is what has happened,,prudendal nerve problems can lead to complications in controlling your bowels and your ability of holding your urine and feeling the urine pass,,,I pray this doesnt happen,,I do have RSD in both legs ,feet ankles,hips lower back anmd buttocks,,Another early warning symptom that is was going into the perineum ,was Rash on inner theigh,rash on back of buttocks after lying down and getting up I could see it inflammed in the mirro,but would fade after a bit,burrning on the buttocks,that moved to the scrotum,,,cramping in the srotum,rectum, perineum area,,,,I will go see a urinologist,to rule out everything else,,,As the MD told me that I have all the signs of a UTI ,prostitis,fistula and fissure,,,but these were ruled out,,I really was dissmayed when the RSd rash,itch,spider veins and burning of the skin appeared,,I just pray that I dont loose my ability to control my bodily functions,,,,,,

Bobber -

Ouch! It isn't cheap, but this sounds like a perfect application for a compounded [made up a specialized pharmacy] analgesic gel. Mine is 10% Ketamine, 5% Gabapentine and 5% Lidocaine in an "OGEL" base. 500 ml's of the stuff costs just over $800 and I go through it in about 8 weeks or so, if I apply it to both feet just at bedtime (when for some reason the burning kicks in - as opposed to "deep bone crushing pain," etc.) and on those few occasions I have to actually wear shoes and socks. Other compunding pharmacies in LA have quoted higher prices, with one in Beverly Hills (of course) wanting three times as much!

After a pointed exchange of letters, Medco agreed to cover it, so long as I pay for it up-front and they in turn reimburse me, less the co-pay.

Basically, the stuff's tricky to put together without crystals forming that makes it uncomfotable to apply and less effective. And I'm advised that the equivolent of 50 ml's of ketamine isn't cheap. The guy who owns the compounding pharmacy tells me that he's basically billing me for his cost of materials along with 4 hours of his pharmacist's time @ $100/hour, with which I can't argue. The pharmacist who actually prepares it has been making it for me since 2003; I wound up at her current shop when the evil landlord declined to extend the lease on her dad's pharmacy, just as the clock hit June, 2008 and the building's been empty since. (Served the landlord right.)

Not sure if you can get it online, but just bear in mind how tempermental the stuff is to make if you see any offers that look too good to be true.

Others may have had better experiences in terms of cost, I don't know.

Mike

Thanks mike
someone else mentioned the same thing to me in a private PM,,,,another warning sign that this was coming on for both of us is , Foul smelling urine,,and with men ,pain in the tip of the penile after urination or ejactulation,,,its not a UTI,,{its from the Dr} refered pain from the prudental nerve which if you have prostatitits,,you have the same symptoms,,,,,,,,yeah im worried,,the other person at times lose their bowels and ability to control their bladder,,,,,do I need a script for that cream? and what is the name of the pharmaceutical who makes it? is it just for pain relief,or does it gives internal relief,?And from my research,,the pelvic floor muscle are affected with cramps with levator Ani-muscle and quadratus lumborum contractures from the RSd,Also it affects and attacks the prudendal nerve,,,,[great],,,,,,,,,,,,,,other early warning signs were, red rash on inner theigh,red rash and burning in lower SI joint,inflammed upper and mid buttocks,,then it walk on around underneath to the perineum,,that nerve travels via lower back thru the buttocks to the canal of the bundle of nerve in which the prudendal is affected causeing this,,,

Hi Bobber,
I'm sorry you are gong through yet another cluster of pain with so many implications...
In trying to find information to share with you, I came across a site that deals with pudendal nerve entrapment, which can manifest with RSD-like symptoms.
www.chronicprostatitis.com/pne.html
If the link doesn't work, google pudendal nerve rsd males..that's where I found the link

I am thinking positive thoughts for you, Bobber
from Hope4thebest

Couple of things:

1. CRPS shouldn't give you a foul smelling urine. That part of it sounds just like the "endogenous" e-coli infection I had a year ago. Appparently, and this is true of both men and women - the bacteria somehow (and quite internally) makes it out of your gut and into your bladder. You should see a urologist ASAP! For this they will make same day appointments. (I was advised that if left untreated, an e-coli infection could be fatal in the long run.) For what it's worth, I was put on a high dose of an antibiotic for 10 days, but the night after I saw the urologist, the contents of my scotum were suddenly enlarged and inflamed, and the next day I was back to have the scotum checked out under ultrasound, as they had done for the bladder the day before, and was given a follow on prescription for the same antibiotic at a lower dose for another 20 days.

That said, where we have the fairer sex beat, is that it's apparently far easier to get a comprehensive culture from a man than a woman. I learned that after the birth of our first child when my wife had a mystery pelvic inflammation that wouldn't resolve for weeks. Then, in an office roundtable at her OB/GYN's someone suggested culturing me, and a urologist identified what it was - can't remember the name but it was something that either one of us could have been carrying around for 15+ years asymptomatically - we both took the same round of antibiotics, and that was that.

AND

2. You definitely need script for the topical gel so long as it carries prescription drugs unless the FDA has okayed OTC sale, which it hasn't in this case. But by coincidence or just the intuition of the subconscious, after writing earlier I was wondering whether it would be possible to keep the meds in suspension in a lotion - and then that was the way you referred to it - where the gel dries up but is still on your skin, long after all of the available medications have been absorbed, which could possibly become a nuisance in its own right with underwear and all. So unless you're living in a culture where it's okay to walk around in the buff, a lotion (or cream) format might be preferable, if it could be done.

Good luck!

Mike