Urethral pain please help!!

[marcomom]

I hope someone out there can relate and offer some help. February 2011 I started having UTI symptoms, had cultures and all came back negative. I was put on antibiotic anyway, the constant urge to pee was still there for weeks. I had a pelvic ultrasound and all was good with my uterus and female parts. I was then referred to a urologist and she checked to see if my bladder was emptying..when she stuck that thing up my urethra i thought i was going to die!! the pain was excrutiating..she said oh Im sorry that usually doesnt hurt. So now she knew something was wrong and I had a cystoscopy a week later and she found that my urethra is inflamed but my bladder is fine. put me on macrobid once at night and prosed ds. I have my follow up this wednesday. I am still very uncomfortable with the urge to pee but not as frequent..does anyone have any advise as to what I can use topically to ease the pain? The prosed ds worked for the pain but I cannot handle the side effect of a racing heart beat..I am very sensitive to medications. I have never had any problems with my bladder maybe one or two UTI's my whole life.. I am 44 with three children. One more thing...I went off the BC pill in February after 14 years of use. I have asked all my doctors if this could be hormone related they said they don't know:/..I have had my hormone levels checked and they are all in normal range..please anyone help..I feel like I am slowly losing my mind with this constant urge.

[NancyB]

Estradiol Cream

You might want to ask for gyn for some estradiol cream to put on the outside of your urethra. It won't hurt you, and it might help enormously. You are getting toward that time of life where you might have peri-menopausal symptoms.

Hope this is helpful to you.

NancyB

[shlaward]

My urologist prescribed a specially compounded 3% cortisone cream, which helps with the urethral discomfort. I use it when in extreme discomfort, but after 2 or 3 applications, the discomfort dissipates and then I don't have to use it for a while, so it's not a medication that one has to use everyday all of the time. My doctor said it could possibly cause yeast infections, so I use it only when necessary, but I've never been prone to yeast infection and never had one as a side effect. It would be nice to have a vaginal applicator for this medication, but there is no such thing, so one has to resort to manual insertion. However, the misery of urethral discomfort and constant urges to urinate will motivate one to do just about anything! ha! I also received a lot of improvment with my symptoms with the Elmiron and don't think it will have the racing heartbeat side effect or any other side effect. This medication is tolerated very well by most people. This medication is used only to treat IC and is expensive. Even with insurance it's usually a higher copay, so be prepared for the expense. I hope this helps you and that your doctor will be willing to prescribe any and everything available and recommended for the treatment of IC. That's what my doctor did, just gave me a list and prescriptions for all and let me try them until I found out which things did or didn't work for me.

I hope someone out there can relate and offer some help. February 2011 I started having UTI symptoms, had cultures and all came back negative. I was put on antibiotic anyway, the constant urge to pee was still there for weeks. I had a pelvic ultrasound and all was good with my uterus and female parts. I was then referred to a urologist and she checked to see if my bladder was emptying..when she stuck that thing up my urethra i thought i was going to die!! the pain was excrutiating..she said oh Im sorry that usually doesnt hurt. So now she knew something was wrong and I had a cystoscopy a week later and she found that my urethra is inflamed but my bladder is fine. put me on macrobid once at night and prosed ds. I have my follow up this wednesday. I am still very uncomfortable with the urge to pee but not as frequent..does anyone have any advise as to what I can use topically to ease the pain? The prosed ds worked for the pain but I cannot handle the side effect of a racing heart beat..I am very sensitive to medications. I have never had any problems with my bladder maybe one or two UTI's my whole life.. I am 44 with three children. One more thing...I went off the BC pill in February after 14 years of use. I have asked all my doctors if this could be hormone related they said they don't know:/..I have had my hormone levels checked and they are all in normal range..please anyone help..I feel like I am slowly losing my mind with this constant urge.

[marcomom]

Thank you for your quick replies..I was given estrace and have tried it but I have been trying so many meds that I don't know if it actually is helping. My uro told me to use hydrocortisone but again not sure if it helped, it's all so confusing trying different meds. I have even used lidocaine, tea tree oil, vitamin e. I have not taken the Prosed for two days, I was so tempted today because I was in such pain at work. I didn't because I cannot handle the anxious feeling and racing heartbeat. I will definitely ask about the 3% cortisone cream at my visit on Wednesday. I hope she can shed some light on why my urethra is inflamed with no bladder inflammation. I just pray it goes away!!

[MelindaP]

I wonder if you could tolerate Urelle? That's what I use & found I liked it better than Prosed DS. I think they are a little different. It might be worth trying. As for going off your BCP, I beet you anything that that was the culprit. I was on a low dose monophasic BCP for many years & my symptoms started shortly after I went off it. I am back on it now, & it does help control my urethral symptoms but I still have flares a few times a year (having one now-ugh)! When my IC first hit it felt like just my urethra too. I went to see Dr. Moldwin (ic expert) & it was concluded that the IC is in my trigone area in the bottom of my bladder, around the mouth of my urethra. That's why it feels like it's my urethra. So unfortunately for me, anything topical won't really work. I agree with the above poster that Elmiron does help tremendously, it just takes awhile to work. In the meantime, try 1/4 baking soda in a glass of water. Sometimes that helps. Hope you find relief soon!
MelindaP

[twinsister]

Estrace cream

I say stick with your estrace cream for awhile. I had horrible burning for years in that area. I finally found a doc that gave estrace to me and it was and has been a life saver. I have prob been using it for 15 years and every once in a while I think maybe I can stop using it and boy am I sorry.... so I will prob use it for the rest of my life.

[sailawaygrl]

Hi Marcomom and welcome to the ICN,

Melinda is right that you should talk to your Dr about the Prosed giving you the bad side effects. Don't suffer through them, there are alternatives. Be sure if you do try the baking soda and water not to do it if you have any blood pressure issues, it isn't safe. I hope that you and your Dr are able to find a good treatment plan for you and you are on your way to pain free days soon.

Below you will see a link to the Patient section of the ICN, be sure to take a look around there. You will find a lot of useful info there that can help you better communicate with your Dr.

Wishing you the best,
Sandra

[MamaZ]

I have similar sounding issues.

What happened when you tried lidocaine? I've never had any success with cortisone creams either.
Have you considered/heard of valium suppositories? I've found both those and the lidocaine work great together when my urethra is at its worst. And when it is, my bladder starts to spams and I have to pee constantly. The suppositories slow that down. I'm also on VERY low doses of Elavil and Hydroxyzine and after a few months now, I feel as though they are definitely making a difference in pain levels. I had zero success with oral medications that are supposed to numb the urethra (pyridium, Uribel, etc.) and they actually made me feel worse. Messed my stomach up and made my urethra tingle in a very bad, uncomfortable way.

My next stop is physical therapy. I'm hopeful that's a major part of the puzzle and will be hugely helpful.

[nottoc4]

I am quite a bit older than you(68) but my biggest problem with the Urethra was that my tissues were so thin from lack of estrogen and effected the Urethra too.I was put on Premarin every night at bedtime along with Elmiron and a few other things for my IC. The Premarin has my tissues much healthier now and no more spasms of the Urethra.I only use the Premarin 4 nights a week now and will for the rest of my life. My suggestion based on my experience is to continue with the Etrace for at least a year and take your finger and put some of the cream on your Urethra every time. That's what my UroGyne had me do and it has worked for me.I haven't had problems with the Urethra in years.

[marcomom]

Thank you for all of your support. I am so happy to have found this site and forum just because no one understands..I have stopped the prosed its been three days, I am using the estrace, but not sure how often to use it. Not sure if I should rub it on the area everyday or use it vaginally and how often. My first gyno is the one who gave it to me and really had no instruction for me just rub it on is all he said. I have started to take aloe vera pills with calcium and magnesium, I don't know if it's a placebo effect but I am not having the urge to pee as often and I can wait up to two hours to relieve myself. I am hoping to get some answers tomorrow at my uro visit. I am even thinking about going back on the BC pill next cycle and see if my symptoms subside. Does anyone have any suggestions as to a low dose bcp? I have also watched everything that I am eating and drinking for the past two days. I am praying for a miracle..want my life back and to smile once again.

[sailawaygrl]

Good luck at your appointment tomorrow. Be sure and right down your questions so you don't forget any. I am glad you are feeling somewhat better right now. Please don't think you won't smile again!! There are sooo many things for you to try before you give up on smiling!! And even then you don't want to live like that!

I wish you the best.
Sandra