Anyone with Hunner's Ulcers please reply

[duana]

Does anyone that has Hunner's Ulcers ever seen blood spots after urinating,Especially in a bad flare?Not bloody red or pink colored urine but just a speck here and there?Do you have micro blood too?


What has helped you feel better?


Duana

[BOARDWORKER]

Duana,

Yes, I've seen blood spots/clots lots of times. More so though before I started on Elmiron, not so much anymore. And then too, I wasn't watching my diet as closely then, so I suppose I was making the situation worse. I never really did anything to make it feel better because I didn't know what to do, but when it first started happening it really scared me!! I can relate totally to how it's making you feel. I hope it passes for you soon and you feel better. Keith

[ICNDonna]

If this is something new, absolutely call your doctor.

Donna

[duana]

This is not new,it usually happens when I am in a bad flare.Even when not flaring the Dr.always tells me there is micro blood.

Keith,do you have Hunner's Ulcers or just a badly irritated bladder?I've never had the cysto/hydro.My doctor diagnosed me by symptoms alone.These symptoms have been on and off for over 10 years.I've had several remissions in that time though.Some lasting me a couple years.Back then I didn't even know what I had and for some strange reason,the symptoms would just go away.I didn't know about the diet or meds. or anything.I wish it were that simple now,that the IC symptoms would just go away.

Hope we all find relief soon.

Duana

[duana]

Donna,hope everything went well with your ultrasound Tuesday.:angel:


Duana

[BOARDWORKER]

Duana,

Yes, I definitely have the ulcers. They were there when I was diagnosed.
Keith

[duana]

Keith,what is your main symptom?Mine is frequency.Sometimes in a flare it gets so bad that the frequency symptom is there even after going to the bathroom.It seems that I need to return to the bathroom after just going.



Duana

P.S.How long have you been on Elmiron?How many months did it take to start improving your symptoms?

[BOARDWORKER]

Duana,
I have frequency, also. Sometimes, like you, when in a flare I have to go every five minutes or so. Real hard to get out of sight of a restroom. Some nights I get up to go 15 to 20 times, not much sleeping going on. People tell me I look tired. Most people just don't get it, they can't even understand. Sure, ok, I'll get up and go again, but then I get there and I can't go. It's like I'm "locked up". I think it's called pelvic floor or bladder floor dysfunction, something like that. It really hurts to get past that and sometimes that takes fifteen minutes or so. I've got the urgency symptom, too. There IS NO waiting..... I gotta go NOW! And then it's just a dribble, because you can't go every few minutes and expect a quantity. It's pretty close to Hell, if not already there!

I've been on Elmiron ever since it was approved ('97 I think, maybe '98). I'd have to look back in my records to say for sure, but it's been a long time. Once I started Elmiron I noticed a change (spelled relief) within a couple weeks.....actually a slight change within the first week!!! After a few months I was almost jubilant because I felt so much better, but I didn't dare screw up and eat or drink something wrong. And I was just winging it because I didn't have an IC diet to go by, then. Now, the Elmiron is kind of loosing it's beneficial effect (or my bladder is getting worse), I just started on Elavil. It seems to make my symptoms better, but I sure hate it's side effects..... What's a person to do????...........

Duana, I hope my rambling answered your questions, it sure helped me to "vent". Thanks for asking, Keith

[Snowden1]

Keith,
How long did the Elmiron work for you before it stopped helping? Do you think if you went up on your dose you may have improvement? What dose do you take now? Have you tried Atarax I had a bad reaction to Elavil too.

Have you tried any insitllations? Maybe some Elmiron instills may help get you back to where you were too? Just trying to help not to be nosey.:)
Teresa

[jvr]

Hi Keith,

Have you tried physical therapy for the PFD? Maybe the Elmiron still working, but PFD is giving you more problems now? I know I've had some wicked flares that turned out to be more PFD flares...

Jill

[BOARDWORKER]

Teresa and Jill,

The elmiron is still helping, without it I'm wrecked ! Just that I think my condition is worsening. My new Uro has talked to me about uping my dose, so that may happen next. At present I am taking one 100mg three times a day. Have not tried Atarax, yet. What dose do you take? I did DMSO instills back in the beginning of this struggle----NOT good, didn't help, mostly hurt! Haven't done Elmiron instills, I'd never heard of them till I joined here. Might try that, too. Thanks.........

No, I have not done PT for the PFD. I know the Elmiron is still working, but like I just wrote, I think my condition is getting worse. Under normal conditions if I'm at home where I know what's in the food I'm eating, I can maintain pretty good, but everytime I go somewhere and eat food that I haven't prepared, I pay the price "bigtime". People just don't understand even if you tell them straight out and you can't really blame them. They have no concept of what we're dealing with. Thanks for your thoughts, too. Keith


THANK YOU, BOTH. IT MEANS A LOT TO HAVE A CONNECTION LIKE THIS........

[bruegelfan]

Hi, I have IC with Hunners ulcurs and I think the Atarax has helped me quite a bit. I'm currently taking 35mg/night and it took a couple of months to really notice a difference. But, I've gone off of it and my worse pain symptoms came right back. They also did Elmiron instills 2x/week for 12 weeks to jump start the Elmiron effect. I think the Elmiron may be helping, but I'm not really sure and am only on my 3rd month on it.

[Snowden1]

Keith,
Uping your dose may help you a great deal. It sounds like some of the Elmiron is still helping. I know many people who are taking 100mg 4x per day some are even taking 600mg per day - provided you don't have side effects. It is good to know about the DSMO - I don't ever want to do that instil - it sounds very painful to me. But, I would think about the Elmiron instil too if I were you:hi:.
Teresa

[duana]

Bruegelfan & Keith,
You both mentioned that you are on Elmiron.Did you notice any side effects when you started?I tried it several weeks ago and had the worst panic/anxiety attack ever.The heart palpitations scared me the most.I stopped taking it but my Dr.wants me to give it one more try.


Brugelfan,since you have the ulcers,have you ever seen blood specks after urination,especially in a flare?Do you have microscopic blood in your urinalysis even when not flaring?

Thanks for any info.

Duana

[systitis]

Hi...I had Hunner's ulcers. My uro did an outpatient laser procedure (it is called fulguration) and it was very helpful. My pain level went down noticeably almost instantly. The uro told me that some patients feel improvement immediately (like me) but for others the improvement takes a bit of time.
He also said that sometimes ulcers return but so far (cross your fingers) mine haven't. If the ulcers do return, I would definitely have the same procedure again. It made a huge difference.

Have you discussed the possibility of fulguration with your uro?

[duana]

Systitis,what were/are your main symptoms?


Do you take any meds.,like Elmiron?

Duana

[Judy777]

Duana,

I was diagnose with IC with Hunners ulcers. I had a hydro/cysto done and the ulcers were lasered off. I take all of the IC meds listed below. The main thing that helps me are the rescue instills with Heparin, Lido and Sodium bicarb that I do at home. Other 2 meds that brought me great pain relief were Lyrica and Atarax. I see you mentioned your doctor diagnosed you by symptoms only. How does he know that you have Hunners ulcers if he did not do the hydro and look into your bladder? Sometimes the blood in the urine could be a sign of an infection.

Hope you start feeling better soon.

Judy

[systitis]

Hi Duana....My main symptom was excruciating, bent-over-double pain that stopped my life in its tracks. Also frequency & urgency. Fulguration diminished the pain greatly. I still have freq but urgency has stopped being much of a problem.

Urelle, Prosed, a sh*tload of antibiotics, OAB meds--nothing helped. Never tried Elmiron--none of my 4 uros rx'd it. I turned down the Interstim & am glad I did.

I'm post-meno ... Estrace cream is very helpful but not a miracle & that along with diet modifications + prelief keep me comfortable most of the time even tho I run to the loo every hour or so (and much more often when flaring).

HTH but feel free to ask anything else ... I'll try my best to help/answer. I know how miserable this is.

[duana]

I've never been told that I do indeed have Hunner's Ulcers....My doctor has known my case for over 10 years and believes the micro blood comes from an irritated bladder and when in a horrible flare I've seen blood specks.I'm starting to believe that I have Hunner's Ulcers and am trying to gather some information myself.


I read on the internet that some people with Hunner's Ulcers do nothing for them as far as having them burned off.Can ulcers actually heal with only Elmiron or instillations?

Duana