November Hopeful Venters or Venting Hopefuls

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HI everyone- Sarah- I am taking your cute phrase for this thread!

 

Vent: fear. will i ever be normal? Am I the one Dr B can't fix? I wish I could stop thiking about this for more than 5 minutes at a time.

I am frustrated that I can't just get a cup of coffee with a friend

 

Hope: I had sex last night and I am ok today!!!! It has been up and down with me as far as that goes.

soniafa's picture
soniafa

hope: painless bladder 4 days in a row :D!!
 
vent: vaginal and urethra burning, itchiness and dryness :(.....yeast or cleansing symptom?.... any thoughts?
 
hope you are all doing better
 
xx

SarahC's picture
SarahC

Hey - I am proud to see my phrase make the thread title!!
 
sonia, your pattern sounds very, very similar to mine. GREAT you've had pain-free bladder - I found that the pain moved out of my bladder into my urethra, then into my labia/all external tissues, then into my vagina. Has been variuosly itching/burning/irritable. Vaginal stuff def easier to deal with. So hopefully this is progress for you too!
 
ok, but VENT - am in a crappy flare. Burning/buzzing/prickling in labia and urethra has come back (hadn't had if for a good couple of weeks - had forgotten how grim it is!). Am feeling grim and glum - and just like you, deir, I have The Fear. Will I ever feel reliably normal again? Every time I relax into feeling a bit better it comes back to bite me on the ass again. Find it v hard not to feel gloomy about the future when I'm feeling cruddy. You just can't think about anything else.
 
HOPE - spoke to Dr B last night and she seems unfazed. Am adding in digestilac as soon as it arrives - anyone else have any experience of it?
 
Deir, it is GREAT that you had consequence-free sex! So brilliant. It makes me so happy, being able to have sex again :)

delie's picture
delie

wow Sarah you describe ic symptoms so well, I find it difficult to describe to Dr B but you nailed it, if you don't mind I'll use cheers delie

soniafa's picture
soniafa

Sarah!
 
I'm taking digestlac and I think is helping me a lot with the vaginal stuff... I think you will get better very soon...! but I have to disagree with you ;) for me THE WORST are the vaginal-urethral symptoms....honestly... the crawling, buzzing, pressure, irritation, bugs feeling is sooo disturbing that I get anxious till the roof... I rather to have low bladder pain than those horrid feelings down there... I cannot focus at work and i want to eat all the time because i feel hysterical...
 
The problem at the moment is, if I take more than 1 bifido my bladder is in PAIN big time, but the vaginal-urethral symptoms disappear... but If I take only 1 bifido x dose the bladder behaves well but the vagina is weak and the yeast comes back... oh dear...
 
Deir- so good you had sex without problems!!! that's a big achievement!! :)

SarahC's picture
SarahC

Waaaah! Bloody flare is still hanging around!
 
VENT - have had a flare-y week, more external sensation/itching and so forth again, and pain in labia, and then added in digestilac last night. And then had quite bad urethral burning and a bit more frequency, which was a bit sucky. Dropped it today and mailed Dr B and we're going to just a 1/4 of digestilac a day to build up tolerance. Fingers crossed. Am just hoping flare buggers off - it's been five days now and after three days I lose my confidence and think I'll keep flaring for ever. Did some crying over wonderful, patient partner last night!
 
but HOPE - my intestines seem much better. Solid BMs for a week!

SarahC's picture
SarahC

oooh one extra HOPE - even though I was up and down a bit in the night last night, I've noticed recently that I don't *always* wake up feeling like I'm dying for the loo these days. I seem to remember from pre-IC  that it wasn't always the case that the first thing I thought when I woke up in the morning was "woah - I need to pee!". Would be ace not to have it be my first thought every day!

deir's picture
deir

Hope-  THank God!! ( I mean that pretty literally) My mental strength has gone from a shaky 3 to a confidant 8. I have truly turned a corner.
 
Vent- Can't figure out how to add veggies from list 2 since my increases in symptoms are so inconsistant. It isn't getting easier to tell if something is bothering me at all

deir's picture
deir

HUGE VENT: My husband and I had planned a mini trip away for the night and day tomorrow. I was going to nurse my daughter to sleep, then we were going to try to go out to a nice restaurant where I was hoping to just get a steak and potato, go to a hotel nearby, and thn spend the day together tomorrow away from the kids and the house. My MIL cam up from NC for the week. ANyway- last night i had maybe the worst flare ever. I have no idea why and again I am back to fear land. We are suppsed to be going out tonight but we canceled our reservations.:(My friend was just telling me about the trip she and hrhusband are taking to Georgia for tehir anniversary next week. Ugh. I feel so bummed.
 
HOPE: I do have some emotional PMS today but it really only started yesterday and my period is due tomorrow or Sat so that is really good for me. I used to get alot of rage and irritability which would build. Despite last night's horror and today's disappointment- I am still better.

SarahC's picture
SarahC

oh, deir! I'm so, so sorry, what absolutely crap timing. Have you mailed Dr B? What form did the flare take? Is it subsiding at all? Hope you can at least spend some time together and your mother can take the children for a while. So know the jealousy of other people doing fun stuff without a second thought!
 
as for me, VENT - I'm flaring in what's usually the quiet time of the month for me, which is doubly disappointing. Weird pain like someone's sticking a needle through my clitoris (lovely!) and sort of generalised soreness. Now on day three so have mailed Matia. Hoping it's down to a) trying tomatoes for the first time or b) the fact I'm currently doing five hours of commuting a day due to various childcare issues (three more weeks of this to go). Feeling a bit sorry for myself; just wept all over my amazingly patient and long-suffering partner! Dearie me.
 
but HOPE - I am sleeping through the night (by which I mean from 10ish to 5.30/6) almost without exception now, which is pretty ace. This has changed in the last month. Also, the diarrhoea is much better, which is really great for me. Urgency really seems to have gone now too. All that's left is the stupid pain, which darts hither and thither! The bummer is that I had this madcap theory that when the diarrhoea went the pain would go. Alas, not yet!

SarahC's picture
SarahC

Hey Tink, don't worry about wobbling with the bif! I did, massively - had to go down to a 1/4 of a capsule a day to start with as I had terrible burning with it - but it made a real, step-change difference for me immediately, and seems to help me every time I up it. In fact Dr B mailed me today to tell me to up my bif as I've been having a dodgy couple of days (due I think to massive overexertion which is alas not optional!). I was so excited when she told me to up the bif!!