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hi ic family,

from my understanding, this healing journey will be a slow one....meaning two steps forward and one step back.  i'm on a food group 1, i've been under dr. b's care for 2 1/2 months and i was wondering....when did you feel like the pain started going down?  i'd read many of the success stories and it looks like it took about 2 yrs to be almost completely recovered.  i don't mind the diet, but the pain i do.  it's still up there especially right before i start my cycle.  i know everyone's different, but i need some reassurance that manageable pain is nearby.  

thanks.  :o)

Christine222's picture
Christine222

Oh Junie, everyone is so different! I know I did feel much better starting the diet but the day to day pain didn't start to get better until the 3rd or 4th month and now in the 7 - 8 month it is MUCH better!

junie's picture
junie

hi christine222, unfortunately, my pain is 6-8 until when i urinate it goes down to 3-4.  this is my every 20 min. vicious cycle.  often, i wonder "when is this going to end."  i don't mind the frequency, that's how it was last year.  i had no pain and no urgency until jan this yr. i don't have bladder pain, it's mainly my urethra and it is so so difficult with my very active 2 yrs old.  were u feeling worse during your cycle?  last night i thought i was going to die, i literally cried.

porkchop87's picture
porkchop87

I also notice that it is much worse before I am about to start my cycle. Sometimes I wont get any pain prior but other times it is really bad. It changes. It will get better :)

calieve's picture
calieve

I must be one of the less severe cases. I started with Dr. B on 09/15/2011 so almost 3 months ago. My pain went down significantly after the first 2 weeks. Then the beginning of the 2nd month of treatment it went down way more. I only have ureathra burning during ovulation, and for a few days before my period starts. But the pain is so minimal its about a 3 out of 10. So I am only having some pain about 6 days out of the whole month.
 
Also some patients here don't have intercourse at all, I am able to have it about 4 times per month. Before treatment it didn't always feel so good, but now it is better than ever.

deir's picture
deir

Junie- I am so sorry you are in such pain. I have never been that bad so I often feel bad complaining. I have had many a night however where the "pain" (I put it in quotes because it isn't usually what i would perceive as pain but I think that is a weird dancer pain perception thing) was bad enough that I could not fall asleep and I was crying feeling nuts. Those nights are fewer now. My progress has not been smooth and easy to track but now I am noticing more hours in the day that are comfortable and fine if not "normal" yet. Have you ever tracked hours? I find that if I wait until the end of the day  which is always my worst time I tend to forget that I had a few good hours early.The most recent really bad flare p was right before my period and it seemed to have no cause so I am assuming it was hormone related. I have good days and bad days though as I always have ever since this started so I don't think our progress is worth comparing. I just know you will be experiencing some relief and I hope soon. I have a 6 and 8 yr old and a 20 month old and I know how tough that part is and i don't even have close to your level of pain it sounds like. Hang in there ((((((HUG)))))))

junie's picture
junie

hi porkchop87, calieve, and deir.
just dealing with this pain is so draining...but looks like i've survived again.  starting around 2pm, the pain has gun down to 4-5, but i'm always scared when is this pain going to happen because mine flunctuates throughout the day.  :o(  when i have this level of pain, i'm scared to walk, sit, or just simply move because i'm afraid i'll trigger the pain to shoot up...i want to hurry up in getting better soon, so i can take my little sophia to disneyland.

fahlmank's picture
fahlmank

Hi Junie, I have had IC for 11 years (only in treatment four months) and in the first year of my IC, my symptoms sound very similar to yours. The pressure/pain increased until it hit a sort of plateau. I was peeing every 20 minutes, lots of crying ... I totally get it. It is no way to live... and then, slowly the pain began to subside. Very slowly at first and then I could live a normal life within some dietary restrictions. I became asymptomatic for six years. When I had my second daughter ( now 21 months ) I was thrown off balance and my IC came back.. that is when I found Dr. B. I am doing much better already... so the answer to your question is that I have no idea when you will have consistently less pain, but I am 100% sure that it will happen.
There are many who have successfully completed treatment and you will be no exception to the rule!
Katie
 
 

SarahC's picture
SarahC

Hey Junie, it was at about the 3-4 month mark for me. Suddenly had a week where everything was just quieter. Now at about 7 months, I've had about three weeks in a row with minimal symptoms - every day around 0.5 on my pain scale. Hang in there, just keep doing what you're doing. You ARE healing, it's ust happening at a level where you can't perceive it yet. I know that horrible, horrible panic of peeing every 20 minutes. We've all been there, in different ways. YOu'll get through this, and we're here to help you on the way.
 
And on another note, Deir! I'm so glad you're seeing some quieter hours. My improvements started as hourly rather than daily too. Here's hoping for a calmer, healthier 2012, for all of us xxx

junie's picture
junie

katie, sarahc, and tinkerbell7,
thanks so much...in fact THANKS to all of you ladies.  your words mean so much to me. whenever i'm feeling down, i'm going to read what all of you have written to get me back on track.  ((((HUGS))))
P.S.  When things are better for all of us, I hope we can all meet and celebrate!  :o)