Urethral pain???

[Roxie2007]

HI! I'm Roxie.
I'm new to this site but not new to IC. I've been suffering for over 25 yrs. and have had MANY tests through the years, but it wasn't until last year that I found a specialist in Houston who diagnosised me with I.C. I've used Ditropan XL pills for years...and then in patch form, since it came out a cpls years ago. But...Since the diagnosis I've been on Elmiron and for the past 3 months Elavil. (which has really helped with the frequency I was having and helped with a lot of the bladder pain).
My problem now (and it seems to be getting worse!) is urethal pain. About every 4-6 weeks I am in major pain and it takes a presciption of Cipro to releive the pain! Luckily I have a dr. who'll prescibe it for me that often!
I've read some old posts on this site of others who have had this pain but it doesn't sound like anyone has had a presciption medication that helps it. I've just sent off for MSM. (0rdered it online) I've read that does help (and I sure hope it does!!) Has anyone else used it and if so will you write and let me know how it worked for you...good or bad?? And any other advise you might have......or just to say Hi. Thanks for your help! Roxie :help:

[lisalau]

Hi Roxy and welcome!
wish i could put the smiley up with the welcome sign but i have n idea how...just use your imagination, please!
i, too have trrible urethral pain and the only thing i have found that helps is freezing my bits, once they are sufficiantly numb (and sore from the ice) the urethral pain settles for a little bit
I hope what you ordered helps, i dont know it but i am sure others who do will be along shortly
hugs and welcome again
lisa

[Roxie2007]

Hi! Thanks for writing! It's actually nice hearing from someone with the same problem! I guess I should have realized that others suffer from this too......but didn't.
I haven't tried ice but sure will! Right now I'm on the antibiotic and feeling much better...almost normal! But I know as soon as I'm done with the prescription for a week or so I'm be back in pain again! :(
My husband has read up on the MSM and it sounds like it might help. I guess time will tell. The company that makes that product is Jacob Laboratories...you can find it on Google.
Once again, thanks for writing! Roxie

[Bessie]

Hi there and welcome to the board :welcome:

I also use cold to help with the pain. Sometimes it seems to relieve the pain a little.

I hope the MSM works out for you. I think I am also going to try it.

I also live in the Houston area :hi:

[lisalau]

Anti Bs never help me, i have to wonder WHY they help you. Have you been investigated for a diverticulum? (a small pouch like extrusion in the wall of, in this case, the urethra where a small amount of infection may hide, flaring occassionally and therefore responding to anti Bs)
I am very happy they do help you because without relief this is a nightmare....i have almost lost my mind with this pain and wouldnt wish it on anyone
does your doc have any ideas as to why they work?
do you culture for infection when this happens?
sory for being so nosy...
hugs
lisa

[Roxie2007]

HI! No I don't culture as an infection when the antibiotics work. There's actually a forum on this site about antibiotics working for those with IC even when they don't have an infection. Aetna insurance has fought this very thing and going to review the whole problem in October of this year.
I have diverticulitis..but not diverticulosis...
I agree this problem is a nightmare! I am doing SO much better since starting on the Elavil a few months ago, plus the Elmiron, but still having the urethra pain. I can't seem to get a handle on that.
I am very careful with the foods I eat. I had Gastric Bypass surgery 3 yrs ago and also have Barrett's esphogus so my diet is VERY limited!
Thank you for writing and feel free to write again. It's nice hearing from someone with the same problem! Roxie

[Judith67]

Hi Roxie..I was surprised to see someone on here besides me. I usually get on at odd times and seems I'm the only one on here. I too have urethral pain as well as bladder pain. It starts in my bladder and moves upward into the urth. and if its a particular bad one it moves on into my kidney. I've learned over these past 2 years to grab the ice for my crotch and the heat pad for my stomach, along with my pain pill. Try to get it stopped before moving upward. Heat on my bladder area makes my pain worse. So I carry ice bags along with my pain meds wherever I go.

I'm new to the board too, but boy it has really helped me through all this horrible disease. I've learned a lot about it and how to help the pain . I've recently gone on Algonot+ and it has helped me tremendously. They say it will take about 3 or 4 months. But thats ok. I'll do about anything to get rid of the pain. It seems so much better and not so severe.

God Bless you in this new journey...We're all in this together...Judith

(Point of interest...I am not Judith56, moderator)

[lisalau]

Thats very interesting, thanks!
Tha only time i have responded to anti Bs is when i culture but i have a theory on this...
just as IC is different for each person (though i am sure many have the same symptoms also) i think the CAUSE of our IC may be different and thats why diff people respond to diff things
I have a genetic inflammatory disorder and i believe IT is responsible for my IC symptoms. For years i saw urologists who kept telling me theres a lot of inflammation but nothing that describes what you are telling us you feel...and so like many others, i suffered because THEY could not a find a cause for my symtoms.
and like others, it was considered i was either attention seeking or had some kind of somatiform disorder, athough this was never said, i could FEEL them thinking it
once fmf was diagnosed, amyloid deposits were discovered surrounding my whole urinary system and so tests were finally ordered which showed (surprise surprise) continuous spasm (that just doesnt happen in humans lisa) ulcers, extensive inflammtion (they had seen that)
but noone else on this forum has amyloidosis or fmf and yet i share the same symptoms as many
urethral spasm
burning
inability to relax the pelvic floor and void naturally (i have to use a catheter)
cramping pain
swollen sore external genetalia
i hope one day someone will find something that will ease these symptoms for us all regardless of the cause
noone who hasnt felt it can imagine what its like...for me it is the sensation of a +++ UTI all the time
it has changed who i am
i have only had this for 4+ years, it frightens me to think who i will be after years as you have suffered
warm hugs

[lisalau]

its 2pm on Syd Aus and this is my usual time on here Judith although if i dont put my head down for a nap the children will be home and i wont get one
so...
hope t see you in here soon
til next time
lisa

[mich2604]

My Urethra has really been bothering me the last few days. At times it feels like something is crawling on my urethra.

Does anyoneles have iritation on the skin near the urethra......mine is iritated and scratchy........it maybe yeast for me.......going for cultures tomorrow.


this has changed me too, im controled by my crotch and its been this way ever since i had Bacterial vaginosis, jan 2006- i often wonder if the infection wasnt treated long enough.

[sami4]

One of my main symptoms was urethral pain, stinging, sharp pains, spasms. I found out it was actually coming from the pelvic floor and not the urethra. The pain was being referred to the urethra, but originated in a pelvic floor spasm. The thing that helped me the absolute most was Elavil, and topical estrogen cream around the vulva, urethra area.
Dont be too quick to assume your pain is really in the urethra, have them check out pelvic floor and lower back where all the nerves to the uterus, bladder, vagina run through.
Sammi