flares

[BAM]

I have a question. I am new to IC but have done my fair share of researching it. I read about flares and have read that they last from 3 to 7 days or so. My question is....are flares when one is in terrible pain? IF that is so then what do you call days of discomfort that gets worse all day until by 4 in the afternoon you feel totally wiped out and just looking at the time you can go to bed? I feel like in some ways I have not quit flaring if you count those days as well as the really painful days. Or are those days considered the good days? I mean they are better than the others. But do you have days where there is no discomfort/pain? I think that in the last 7 months since I have had this I could count on two hands days that felt like i was normal. Is this normal for IC? Or do you learn to live with the lesser symptoms and be thankful you are not at 7 to 10 on the pain scale? i can't really tell when a flare is coming on because sometimes the discomfort will turn intoa major flare and sometimes it will not.
Also another question......does anyone hurt to touch around the urethra.....maybe not hurt but are quite sensitive?

[ICNDonna]

What kinds of treatments/medications are you on?

I feel good most of the time --- I always have some frequency, but don't usually have pain unless I'm flaring. Are you following an IC diet? That can make a huge difference.

Warm healing thoughts,
Donna

[ICLori]

Hi, BAM, it hurts for me when I press on my urethra, and also it hurts if I press on my lower abdomen, just above my pubic bone, where the bladder is.

For me, a non-flare time is when I maybe still go to the bathroom more than average people, but I feel just fine in-between trips to the bathroom and don't feel that "gotta go" every second of the day even right after urinating.

A flare is when I can't sleep because I'm peeing every 20 or 30 minutes, and I feel an aching and pressure even between voiding, and often feel like voiding again the second after I finish going. I mean, that's what my flares are like.

The first year I was diagnosed with IC, I'd have maybe 1-2 months of a flare, then 1-2 months of non-flare. By the third year after I was diagnosed, I was in a flare 90% of the time, and I finally got put on Elmiron and Atarax which seemed to help some. I had a nice 4-5 month remission. During that remission, I sort of forgot I had IC. I felt great, felt like my bladder would never hurt me again. I ate and drank anything I wanted, even had intimacy once or twice with my husband (although I was still deathly afraid of it, sure it would bring pain).

Now I am starting my 9th week of this flare, and they are doing a hydrodistention/cystoscopy next Tuesday for me. I'm lucky they could get me in so quickly, less than a week after the uro suggested one for me.

I've also got a meeting scheduled with the pain clinic, and I will be going to a urogyn too to ask what he can do for me.

If you are in discomfort each day, and don't feel normal each day, it's worth it to see what medications you can take, that could make you feel normal.

Are you taking any medications right now? If so, do they seem to be helping?

Some of us can't have a pain-free day without narcotics. I am starting to think I might be one of them, at least when I am flaring.

Blessings, Lori

[BAM]

Lori,

Thanks for your input. I guess I am in a flare all the time since I definitely do not feel normal. I am taking Elmiron, unitact and will be getting done with my 6th DMSO treatment this coming Wed. So far nothing seems to be helping a whole lot. Usually by 2 or so in the afternoon I will be feeling lousy and just want to crawl into a bed and hide.
I am going to go to a different uro in about 2 weeks and hopefully he will be able to "see" what the next step should be. I follow the diet but it seems there is always something that harrasses it. I have been living on rice and bland vegies for I don't know how long. and water.\
I know stress is a biggie and this past year my life (well really the past 3 years) has been nothing but one big stress. As soon as I think I have taken care of one stress then another one hits me. I sat down one day last week and wrote out all that had happened to me or us and it was amazing. I keep thinking things have to get better but so far there is not a break in the action. I probably need to take some relaxation classes or something. thanks again

Barb

[Dixiefireball]

do you think it could be an UTI?? I do hope you feel better soon
sending you hugs and prayers
Rhonda

[PikkuMyy]

This post isn't about sex and romance

MODS - shouldn't you move this to the "flaring" board so she'll get more responses?

[countrysweet]

Hi! to you all !!!!!!
the question was asked about any-one having sensitivity in the urethra area (well oh my god that a a fact ) and making love for me is the big killer ,it hurts bigtime !!!!!!!
there is supposed to be something to but on the general area to numb it ,but what it is called ,and where to find it is the big problem .
This causes a lot of flareups for me as well as diet and having to hold off using the washroom .

catch you all later
love this board
country

[July]

Bam,
You said that you have been living off of rice. I have a theory that if you eat too much of one thing, it can bring on a flare. I use to eat rice all of the time and think it made me flare. Now I eat it every once in a while and seem to do fine. And yes, the urethra pain is a big symptom for me. It makes sitting uncomfortable. Countrysweet...how do you manage sex with the urethra pain? Sorry so personal.. :hmm:

[rhea]

For me the urethral pain is worse than the bladder pain at times, especially during and after sex. I hate it!! I have tried all kinds of things and to date nothing helps. The only thing that "comforts" a bit is little ice paks after and taking a bath immediately after sex. I am talking "that was great, gotta go take a bath". I have lived with IC most of my life and tried all most of the things out there so if anyone has some new ideas please let me know!!! As for the numbing gel, tried lidocaine-caused more problems in the end...Thanks for listening...

[Babs RN]

I really don't get urethral pain, but after intercourse my bladder throbs, back aches and perineal area(whole genital area)feels raw and hurts to sit. I with Rhea with the bath, I also sometimes just hop in the shower and let the warm water hit my back especially. Hubby is in Iraq so sex hasn't been an issue since New Year's Day, the day he left.

Hugs,
Barb :grouphug:

[countrysweet]

Well managing my love life has been a trying thing ,I feel like I am depriving my hubby lots.
But about the pain, it is unbareable to say the least ,so it don't happen very often ,and I know I tense up real bad ,waiting for the agony so there is not much pleasure for either of us .
And as far as this being to personal ,there is no problem ,we are here to try and help each other .

countrysweet (lorna)

[July]

Thanks Countrysweet!
It is so frustrating!

[Yogajo37]

when I was first diagnoseed I had all the symptoms you mentioned. <y ureathra killed me... one doc even dilated it (ouch) saing that was the proble. I was not able to have sex foe almost a year. My last relationship ended b/c of it. However, I am now undergoing a treatment at my doc using Traumel injections throughout the vaginal walls in the bladder, urethra and pelvid floor muscle and it has been over a year and a half and I have been able to have pain free sex. Not hot and heavy crazy sex. Lub is a must but I swear by these treatmenst. When I started they were 1x per week for 13 weeks then 1 x /month then every 3 months now when and if I need it!!! My new man loves it! If I have breakthrough pain I us the tablets crushed in olive oil and place in inand around the vaginal canal where I need it! Heaven. There is hope just keep looking for the right treatment. Took me 8 years to find the right doc.

And like someone else said..we share all here do not be afraid to share stuff here the more we know the more we can support and suggest stuff to each other!
Joelle

[countrysweet]

I am so glad I have some-one to compare notes with .
Could you please tell me what the tablets were that you mentioned in your reply ??
I am willing to try anything at this point ,and i will talk to my doctor about the injections as well ,even though it sounds painfull .


thanks again countrysweet (lorna)