Not sure what's going on with me

[klune115 ICN Member Find all posts View Profile Close klune115]

Hi there. This is my first post on the network. I am really confused as to what's going on with me. Maybe someone who has experience and a few minutes could give me any input.
I started having what felt like uti syptoms about 6 months ago. I have never grown out anything in a culture though I have had positive white blood cells. I've been on macrobid, cipro, bactrim and doxycycline. I felt antibiotics helped at first but am now wondering if it was just because the pain seems cyclical. I've seen a urogynecologist, 2 urologists....I've had a cysto.
Apparantly docs don't feel the need to tell you all their findings. After my cysto, doc said I had red inflamed urethra, and bladder looked ok. though it could be the start of ic? offered to put me on elmiron. i declined. Pain is basically all urethral at this point. not in my bladder. He suggested I try taking low dose antibiotics. After 2 months on cipro i felt ok( had some bad days still) but I got terrible joint pain and stopped. Bactrim didnt help nor did macrobid.
Back to the doc not telling me about cysto findings. I requested records for an upcoming appt and saw he noted a tiny urethral polyp and mild stricture. My main problem is frequency, urgency and pain that seems to be worsened by hormones and exercise. Wouldn't these findings be a factor? also he noted bladder normal and no pain upon ditension and no pelvic pain. Why would he offer elmiron then?
I should mention I had an episode like this about 12 years ago that spontaneously resolved. I have been tested for all stds negative. I gave birth a year ago. I also have si joint pain and dysfunction. I also have mild vaginal atrophy that started during breastfeeding.
I guess my question is...has anybody had a polyp that caused these problems? Could urethral pain be caused by hormones or a hormone imbalance? Could ic resolve for 12 years and then come back?
I have an appt in a week with leading urogynecologist in the area. Hopefully this experience will be better than previous.
UUUGGGHHH. This sucks so bad. I just want to be able to take care of my kids and feel normal again.
Anyways, thanks for listening. I see there are a lot of great understanding people on these boards. Thank God for that at least!

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

I wish I could give you a solution, and I know it's difficult to wait for appointments, but your physician is the one who will have to answer your questions.

Not knowing what was wrong was my worst time with IC --- once I had a diagnosis I was able to begin treatments to feel better.

Sending warm healing thoughts,
Donna

[Barbm ICN Member Find all posts View Profile Close Barbm]

In response to Klune115:
1. It is doubtful that the small polyp is causing your problems
2. hormones can play a role in Interstitial cystitis
3. You could definitely have had symptoms of IC 12 years ago that resolved spontaneously and then came back. I had episodes at age 21, 25, 48, that all resolved for years and then major episodes starting at age 58


It sounds very likely that you have IC. Even though your cystoscopy showed a normal bladder you can have IC. Most people with IC do not have hunner ulcers.The Elmiron is definitely worth trying even if the bladder looks normal. Think of it as lotion for your bladder. Good luck!

[Briza ICN Member Find all posts View Profile Close Briza]

Hello
Welcome to the board
I can't answer all of your questions but I can share one of my experiences. Early on during the first year that I was symptomatic before I was diagnosed I had symptoms of a UTI and visible blood in my urine. The test showed white blood cells but no infection. I was treated with antibiotics and my symptoms cleared up totally for a week or two, then returned, worsened, never left, and eventually was dxd with IC. Some variation of that is pretty common here with the onset of IC symptoms.
Hope you get some relief and answers soon.

[fivefoottwo ICN Member Find all posts View Profile Close fivefoottwo]

klune115

Hi,

Even with only your urethral symptoms, you can definitely have IC. That was my only symptom and still is when I am beiong bothered. I also had a cysto done and it showed absolutely nothing. I use Premarin cream once a week and that seems to help. I also use Elavil 10 mgs x 2. Most of my symtoms whether mild or more bothersome seem to appear in the first part of the day. BY late afternoon, or suppertime, I rather feel normal again. I also use PreLief to take the acid out of foods that I feel may bother me. Taking that can be a problem as the I have to be careful that the magnesium in it does not interfere with the absorption of other meds I take for unrelated problems. To my knowledge, there wasn't even any problems noted in the urethra when the cysto was done. Keep hoping for remission and watch your diet. IC can't be cured but it can be controlled. PM me if you wish to talk more about this subject.

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

A polyp can cause a lot of discomfort, depending on its location. I also had a urethral stricture, which was treated when I first developed interstitial cystitis --- that was 36 years ago and I have not had to be treated again. My uro did remove a polyp from my bladder at the edge of the urethra and that also helped me to urinate easier.

Donna

[klune115 ICN Member Find all posts View Profile Close klune115]

Thanks for all your replies!

Thanks so much for your replies. My urogyne appt is Monday so i will try to update. Thankfully I have found an amazing pelvic floor therapist. She told me today I am having spasms in both the urethra and bladder.
She suggested a urodynamics? test. She's going to send a report of her findings to the specialist for me.
I would try the elavil, but I had a manic like episode on it about 10 years ago. I also have heard it can cause major drowsiness and since my 1 and 3 year old keep me up half the night, it isn't an option right now
My pft mentioned taking a low dose antidepressant just to help with the chronic irritation and pain and help to break the cycle of spasming and inflammation. I'd also be willing to try neurontin or something of the like.
At this point, I just need a good doctor who is willing to work with me.
Hopefully they can find the root cause. And if I do have end up with IC at least I can work on getting some relief.
I can't tell you how great it is to have a little support. Thank you all so much

[klune115 ICN Member Find all posts View Profile Close klune115]

Had my appt...

Well, I had my appt with urogynecologist on Monday. He was incredibly nice and listened to all my concerns. He thinks I've gotten good care in the past and said he thinks I have a mild form of IC even though he is surprised I don't have any pelvic or bladder pain.
During the exam he said that I didn't seem bothered much by it. Many people with ic have excrutiating pain upon pelvic exam. So I still am weary about the diagnosis but am putting my trust in this doctor since he seems to be the right guy for me.
He suggested doing 6 to 8 weeks of bladder instillations once a week. He did one in the office that day. He also said he'd be very surprised if that didn't do the trick along with watching my diet.
I am somewhat interested in trying cymbalta, neurontin or even flomax or cardura since I seem to have retention issues now and then.
He says to try 1 thing at a time to not "muddy up" the whole picture. Anyways. Hopefully this will clear up and go away for another 12 years. Sigh.....
I also have noticed when the urethral pain and burning gets intolerable, it suggests a yeast infection. I have had 3 in 3 months. No discharge (sorry tmi) but extreme burning and mild itching. All 3 times the diflucan helped tremendously within hours. The doctor thinks thats a placebo effect...but I dont see how it could be. I'm talking burning on fire in urethra...then 8 hours after diflucan pill I feel almost 80 percent better. I suspect I have a yeast issue from all the antibiotics I was on and when my ph changes monthly the yeast sets in. just a theory anyway.
Thanks for all the help. Fingers crossed i start to feel better and all of you do too!