Hello, I am a newbie...

[Hopeful2011]

Hello, all.

I don't even know if I should be here. I feel almost guilty writing something here because when I read all the pain everyone is going through- I feel my symptoms pale in comparison. But, I am also in pain, maybe to a lesser extent, and no doctor is helping me. I am falling apart.

Three months ago I had an IVF procedure which ended in an ectopic pregnancy- what are the odds? 1%. I got unlucky.

The day of my egg retrieval, I came home from the clinic and had a very bad feeling of my urethra being irritated. That's when this all started- this pain. I thought it was a UTI, took macrobid, but it didn't help. That UTI-type feeling never went away.

It has been 3 months- and symptoms won't go away.

Symptoms are:
*Urethra burns after peeing, constantly. a lot.
*I don't have to go to the bathroom every 15 mins, but if I drink a lot of water, I have to go every 2 hours, and I CANNOT hold it in.
*Urethra hurts
*I don't have nocturia, but every morning, at 7am, I MUST go, even if I only have a little bit of urine in my bladder.

Urologist: did a cytoscopy- saw nothing.
did an intravaginal test, in which he pressed up on my bladder- I had absolutely no pain-nothing.
but my urethra is constantly burning, and sometimes I have feelings of wanting to go.

The urologist sent me home, said this is not IC. But, then, what is it? No infection in urine, constant burning in urethra. Can anyone help out there? Has anyone had similar symptoms? My bladder is fine, it's the urethra burning which is depressing me.

*Does anyone have urethral burning ONLY?

Thank you for reading....

[ICNDonna]

to the IC Network.

Three months is a long time to have a burning urethra --- I'm sure you are miserable. I do have some suggestions, but absolutely don't know if they will help. (1) If you're taking tub baths, try switching to showers only for a while to see if that helps. (2) Avoid getting soap on the urethra. (3) Use only plain white, unscented toilet tissue and blot, don't wipe. (4) Wear only underpants with cotton crotches. (5) Be sure you drink six to eight cups of water every day. (5) Give the IC diet a try --- you'll find the link to the latest food list in my signature below.

I hope you feel better soon.

Sending healing thoughts,
Donna

[Hopeful2011]

Dear Donna, Thank you so much. I have read your story (I have been lurking on this forum for a month now) and admire you *a lot*. Thanks for this information- I am going to try it.

Are there lots of people out there with a normal cytoscopy who have IC? Am I one of them?

My doctor just dismissed me because he said I had no bladder pain or pelvic /abdominal pain and I was not going to the bathroom every 15 minutes. I almost wish I *DO* have IC so someone can help/cure me!

[ICNDonna]

Yes, it's possible to have IC with a normal office cystoscopy --- back when I was being diagnosed, my bladder looked normal and healthy during the cysto. The IC didn't show its ugly self until I had my first hydrodistention. And yes, it's possible to have a normal sized bladder with IC.

I hope you don't have IC, but if you do, I hope you have a diagnosis quickly so you can begin to take steps to help (unfortunately, there's no cure yet).

Donna

[VickiB]

I think a lot of us would agree that the time when you know something is wrong, -but don't know what, is the worst time of all. So sorry you're there!

You'd said your urologist sent you home. Is he done with you on this? If so I'd say it's time to try another. One revelation I learned with my IC experience was that doctors don't know everything and some are not very good in their field. Even though my symptoms are fairly typical of IC I had so many tell me that I was fine,..go home. I knew I was not fine.

I am another who's bladder looked healthy & normal during an in-office cystoscopy. From what I gather with IC, we all don't have exactly the same symptoms (or combinations of) but we all do have IC. Although urethral burning is not my only symptom, it's right up at the top of my list for symptom hardest to tolerate. It makes my eyes water when it happens!

If your uro is not going to help you with this please do consider trying another.

Hugs,
Vicki

[Hopeful2011]

Thank you, Vicki and Donna. The doctor said that he could not prescribe me Elmiron because there was nothing wrong with my bladder, only my urethra. I told him I don't go to to bathroom a lot (every 2 hours) so again, he and the nurse (who was awesom) said this is not IC.

So he sent me home and send to come back in 2 months if the symptoms did not improve.

I am walking around like a ghost, depressed, but hiding my emotional pain because I don't want to get my wonderful husband depressed. But I have a feeling this is IC.

[sailawaygrl]

Vicki is right. If you know something isn't right and you are being dismissed by your Dr, it is time to find a new one. IC patients can't be fit into one little hole where we all fit a certain profile. We are all different. I have another problem that was diagnosed when I was 18 years old. Years later when I moved out of state I had a terrible time finding a new Dr. Because I didn't fit the exact image of what they thought someone with my condition should LOOK like, Drs would insist I couldn't have it. How crazy!?

I went to two different uros to get my diagnosis and then I saw two more before I found someone that was willing to treat all my symptoms and not just hand me a script for elmiron and send me on my way. There are things that can help you. I am not saying you have IC, but suffering daily is not normal. Keep researching on your own and seek another opinion. That is my advice,for what it is worth!

I hope you find relief. Hang in there, we have all been in your shoes. YOu are not alone, we are always here.

[Hopeful2011]

Thank you, Sailawaygrl- What were your symptoms? I am crying and a wreck...

[Linda May]

Ic

You need to find a new uro it is best to find one in a large city.
You need to have a hydro done before ruling out IC. If you look on the net for urologists when you click on one of them they usually have a rating. I wish you well and I hope you find a good uro.

[NancyB]

Perimenopause?

Dear Hopeful -

Welcome to the ICN. I am sorry you are so miserable.

You didn't say how you were. If you are perimenopausal or menopausal, all you may need is some vaginal estradiol estrogen cream.

Hope this information is helpful to you.

NancyB

[Hopeful2011]

Thank you for the loving words.

I have been advised to do bladder retraining- for urgency issues and the pain signals being sent (urethra). That is supposed to ease the pain somewhat.

Has anyone had any luck with bladder retraining?

[sailawaygrl]

I don't have any experience with bladder retraining. Sorry. My symptoms were extreme bladder pain in the beginning. Even if you don't have IC there are a number of other conditions that can cause a burning problem. If the problem is with your urethra I really don't understand why they would want you to practice bladder retraining. I would try to get an appt with your gyno and see what they think. You need something to ease your pain, now! It could be as simple as a cream. Google your symptoms and see what you find. Research other vaginal problems, maybe you can find something that resembles what you are suffering. Do follow the diet and drink lots of water, the less acidic your urine is the better.
Good luck, there is an answer, sometimes it just takes a while to find the right one!

[Hopeful2011]

Thank you, I am 35, so no, not nearing menopause- yet!

My urethra burns and there is *some* urgency. for eg. if i drank a lot of water, after two hours i simply CANNOT keep it in. so for that they think i should do bladder retraining. at this point in time, heck, i am willing to do ANYTHING they tell me to do.

[Briza]

Hi
There is a forum here devoted to urethral syndrome. You might take a look at the posts there.
Bladder retraining isn't a huge topic on this board. Sure some people have used it and report success. At 35 you might be perimenopausal. Just a thought.

[Hopeful2011]

Briza- you should be careful what you say to people on this forum- saying that I may be perimenopausal sent me into an even deeper depression. Without any medical background, you should be careful what you say- it hurts feelings and what you're saying has no medical basis. We're here on this forum to help- not scare people.