hi, my name is lisa for 2 years i have suffered with continual urethral spasm until 3 months ago, no specialist could find any proof of my complaint nor could they give me any relief 3 months ago, i began being seen by an angel (Prof VC) he did a urodynamic study on me which showed very clearly that my muscles are in continual spasm the only way i can describe it is that it feels like a UTI with no burning sensation when i void the pain is so severe that sometimes i feel like i am losing my mind and i have a compulsion to cut myself my angel began giving me botox injections to see if by paralising the muscles, they would stop contracting today was my second set of shots, the first had no effect except for irritating them and giving me a spastic crisis i also found out today that although he has emailed my results around the world, noone has ever seen this condition in HUMANS apparently, more primitive life forms do suffer with this condition so i am a beast and am considering making an appointment for myself with a vet perhaps there is some management for animals with this condition that could help me i know it sounds like i am joking and i am laughing but it sounds sensible to me and i am desperate when i type urethral spasms into google, articles on cats turn up and now i intend to read them one of the drugs mentioned was pyridine do you think this could help me? so far we have tried diazapam baclofen the only thing that helps in any way is oxycontin, i think it numbs me allegra ice helps too but living with a block of ice between my legs is very socially stunting i am a mother of 4 boyz and my life is overwhelmed please help!!!!
-------------------- lisa Posts: 7 | From: australia | Registered: Jan 2006
| Logged: 60.225.33.15 |
posted
Well in people form its called phenzapyridine, also known as Pyridum. You CAN get this over the counter with NO PERSCRIPTION. The over the counter name is URISTAT. the only difference is the dosage, which i believe is 95mg, while the prescribed dosage comes in 100,150, 200 etc. All you have to do is take 2 over the counters to get prescription strength. I have had recurrunt and chronic renal colic, bladder infections, and urinary pain for a long time. Two years ago i found uristat and seriously it made the difference of me staying at home or going to the emergency room. Try it and let me know if it worked. It will turn your pee red/orange so dont freak out. it numbs the whole urinary tract.
Posts: 1 | Registered: Jan 2006
| Logged: 24.209.139.97 |
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i think i have read about this drug before...it stains your contact lenses too, doesnt it? angela, thankyou for responding, i will go to the pharmacy today and see if i can buy some
posted
I don't know about the land down under, but here in the states there is also an OTC drug called Cystex. It uses a different chemical and doesn't turn your urine red or orange. Two every 4 hours works. Not as good as azo, but less time brushing the toilet. Also if you have burning, try to ajust your ph level less acidic and more alkaline. This I did eating apples, carrots, milk, and fig newtons. The website said figs dried, but what the hell. That there took care of the burning. The next thing to search on the web is cystitis. The more you don't relax you bottom end, the worse it gets. Learn to sit and let go. Hope some of this helps. I just happened by this site looking for more info. As a guy theres not much. I had to sign up just so I could give you my two cents. If you want to see what cystex looks like here in the usa, go to walgreens.com. It a nationwide chain of drugstores and enter cystex in the search box. Good Luck and relax any way you can.
Posts: 1 | From: So Cal | Registered: Feb 2006
| Logged: 68.183.29.31 |
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Thanks everyone i have popped in to tell about the new management in case its ever of any help to anyone else (i treids the pyridium for 3 weeks, it didnt help, i guess because i dont get burning, the muscles just kept spasming regardless of the numbing, in fact they kept spasming evem though they are fully psralised by botox) so now....i am on a oxalate free diet (a complete dietary change for me as i live on leafy green vegetables) apparently oxalate irritates the pelvic region and my diet is very very high in oxalate so i hope it will make a difference (i am throwing myself into this one, it keeps my mind occupied and its a self help thing, which i love) i am also on gabapentin (neuroxin) which i cant find in this forum, but i will keep looking and post somewhere my angel said it is used for epilepsy but what it will do for me is change the nerve pathways, hopefully making them tell the muscles they dont need to spasm any more as the realisation thaty the botox wasnt going to work, nor the pyridium nor anything except narcotics, i became quite agitated, stress and agitation always make me feel the pain much worse and i became desperate again...walking the hallways of my home at night, trying to control the compulsion to cut and divert my attention from the embarressing obsession between my legs. I wrote raw and desperate emails to my doctors, but now i have hope again and though the pain is at best rating a 5 on the pain scale, hope makes it bearable. thanks again for your support and suggestions...i hope this helps someone else in some way lisa
-------------------- lisa Posts: 7 | From: australia | Registered: Jan 2006
| Logged: 144.136.120.79 |
Gabapentin or Neurontin is an Anticonvulsant. It's unlableled use is for chronic pain and is very often used for diabetic neuropathy. I am a nurse that also may be having urethral spasms, not as severe as yours. It is frustrating because until now I always believed I had another UTI. I have already undergone a VCUG and am gearing up for urodynamic testing and a cystoscopy. I too have found it interesting that when I google urethral spasms there isn't any medical basis for it at all. My symptoms are transient and were always relieved with antibiotics until last year after I miscarried. Now they come and go even after a course of antibiotic therapy. I finally am seeing a urologist for the first time to seek treatment. Please keep me posted on therapies that are working for you and I will do the same.
Posts: 1 | Registered: Jul 2006
| Logged: 65.25.127.9 |
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Hello thanks for sending me the priv message, i had not visited this forum for the longest time and am sorry i did not respond to you. but now i am confused....are you Lisa B? or are you yet ANOTHER nurse with this condition? if same then i write to your priv email, if not then we will include you in the priv loop. For the forum and others i will followup here on my treatment. The gabapentin did not suit me. It gave me virtigo and made me feel very unwell. I stopped after 10 days of hell. Since then i have seen a pain specialist and was told the reason i was so sick is that i began on 900mg and should have built up to that number over a period of at least a month. He gave me lyrica which i did increase slowly but still made me ill. so no help there... The only thing that has made a huge difference is Belladona and Opium Suppositories. For those of you in the states, they are easy to get as long as your doctor has no problem with prescribing narcotics. ofcourse they must be used ONLY when the spasms are driving you crazy because like any narcotic, tolerance builds and you can easily end up with tolerance and an addiction. Within one hour of inserting a B & O, my spasms decreased by 60%, the most relief i have felt in years. My doctor had 6 sent to Aus but as you can imagine, it didnt take long for me to use 6 and now i am again in the frustrating position of knowing of something that can work but not being able to access it. My doctor was trying to get a compounding pharmacy to make some up but here in Aus, he can not access neither opium nor belladonna. I have asked if he could make up some with oxycontin and valium to see if they worked as well. I am waiting to see what he thinks. hugs
-------------------- lisa Posts: 7 | From: australia | Registered: Jan 2006
| Logged: 144.136.125.24 |
posted
Hi - I'm Jen. I have had chronic bladder infections for years (had most of my right kidney removed when I was 9 because of scar tissue). After my surgery I went for years and years and years without infection or pain, but for the past 15-20 years, I have had HORRID bladder (urethral?) spasms. Been through all tests - VCUG, etc. etc. etc. Apparently, I have NOTHING WRONG WITH ME, which is a relief since I am in almost CONSTANT PAIN! Urologist after urologist shrugs and says, "Hmmm - looks like nothing is wrong." I am so desperate for relief; it is sad how many hours I sit on the porcelain throne in agony and tears. I have tried Prosed, which works sometimes, Levsin (which doesn't seem to help much) then get desperate and start medicating myself out of desperation (let's see - what do I have in my medicine cabinet?!?!?!). Food doesn't seem to make a big difference, although I have never sat down and made a food journal. I am also taking bipolar meds, which may or may not affect the problem, although I had the problem before I started these particular meds. It is so on-and-off. Tonight I finally resorted to Ambien & Klonopin (regular meds), Prosed DS and Levsin (thinking why not), added Ibuprofen (the more the merrier) then added Robaxin and Soma (Calgon, take me away!!!!). I am finally off the pot and feel like I can function for the next 10 minutes before I zonk off. What is so frustrating is that I am constantly told nothing is wrong, which FORCES me to self medicate simply out of desperation (I hear you - Lisa - kept thinking sticking a knife in my arm might distract me from the pain). I would prefer not to dope myself up so much, but if you can't function, then what is the point? If anyone has additional insights, they are appreciated. If not, just know you are not the only lab monkey out there. lol, Jen
Posts: 1 | From: United States | Registered: Aug 2006
| Logged: 208.186.134.103 |
posted
Hi ! .. I am looking for names of companies that MANUFACTURE Phenazopyridine Hydrochloride .. I am aware of the OTC version of this drug AZO Standard, manufactured by Amerifit brand; Would anyone have any idea about a few other manufacturers
From my research I have come to believe that there aren't many companies engaged in manufacturing this product because of a possible carcinogenic effect and its dye based structure -which is difficult to handle during the manufacturing process as it leaves a lot of stains .. Is that true ??
Posts: 1 | Registered: Feb 2007
| Logged: 203.145.141.114 |
posted
Hi everyone its been a long time since i stopped in here to see if anyone had come up with any new ideas. I am sad to read of Jen. I understand your pain and your need to try and rid yourself any way you can. Have you had a urodynamic study? Noone took me seriously until i did (i dont think they believed me)Once they can see how severely the urethra and bladder spasm, they can no longer ignore it, say its all in your head, expect you to live in so much pain. That cocktail you make yourself sounds lethal. It would be much kinder on your body to be placed on a pain regime so your pain is controlled and the docs are able to supervise your intake. Be very careful mixing meds wont you? I so understand why but it always concerns me. Before my docs saw what i was enduring (and in fact when i was diagnosed with chronic pancreatitis, i was SO greatful because then they had the diagnosis they needed to place me on a pain regime which i so desperately needed for the urethral spasm) i would have taken ANYTHING to stop the pain. hugs
-------------------- lisa Posts: 7 | From: australia | Registered: Jan 2006
| Logged: 121.210.176.55 |
posted
Hi am sitting with the same problem for about a year.in and out of drs tests cystoscopies.surfing the net then i found this site am living constantly with pain no sleep nothing.my drs chased me away then i found this site am going to buy those tablets t mrrow,hopefully am going to get trelief from the pain.will keep you postedthanks feeling better now.frans.i actuaaly shot myself so bad was the pain.was d nosed with a uti,was treated got better now after 8 months back again.also have a pain between the wind and the rain.corresponded with a dr on all ecperts and he also sugested that i try peridium.all test neg.my pain is in the urethra.and i getspasms all the time.was on how many courses of antibiotics .out of desperation i went and bought some medicines from a homopahic dr but hopefully i am on the rght track now will keep you posted kassiemier
Posts: 1 | From: south africa | Registered: Nov 2007
| Logged: 41.206.160.2 |
Lots of people have it. Dr's might be ignorant though about it. It is VERY painful and does feel like your losing your mind as it's that nerve pain that really gets to you not superficial or w/e
Posts: 1 | Registered: Feb 2008
| Logged: 67.170.153.195 |
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lol, Jen
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