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  • RobinC
    replied
    Just an update - SO much has happened since I wrote that first post! I ended up in the ER on morphine at the end of June, that's how bad my pain got! My uro-gyn scheduled an emergency cysto-hydro the next day, with a laparosopy at the same time, looking for endometriosis. They didn't find endo, but they found a LOT of scar tissue from my c-sections & removed most of it. The hydro relieved my bladder symptoms to this day (thank God, I know they could come back but I'm so relieved). I started with a pelvic floor therapist & got on Neurontin. Gradually we increased my dose & now I'm on the max of 3600mg per day. I couldn't sit for 8 weeks before today, I am now sitting typing this post. I was subsequently diagnosed with vestibulodynia & vulvodynia (mostly vestibule stuff, spasming). I was on Elmiron for a bit, but had strange symptoms like a metallic taste in my mouth & itching all over my body. I got off the Elmiron & those things went away. I'm on the IC diet & it's working well. I've taken Prelief before anything spicy like Thai food & it's been fine. I've found that stress is very much tied into my symptoms. I do stretches & pelvic floor work every day, seeing my therapist for myofascial & trigger point work twice a week, I also start acupuncture next week. I'm going to call a chiropractor too. My therapist said my pelvis doesn't have full motion when I walk, which can press on nerves that activate my pudendal nerve, causing pain & spasms. I have an appointment with an orthopedic specialist in 2 weeks. I also have an appt. with Dr. Conway in NH next month, who is a pudendal specialist. I use lidocaine gel & valium suppositories in my vagina every day & this calms down pain & spasms. I don't wear underwear at home, I use dye-free, fragrance-free toilet paper & always rinse myself after urinating. I'm taking 25 mg of Tramadol 2-3 times a day, which calms the spasms. Before the hydro, I was taking Vicodin every day & now I've only taken it once in almost 3 weeks. I do trigger point massage on myself every day. My c-section scars are BIG trigger points. I still have a long way to go - driving hurts, sitting in the car is tough, or just sitting for too long (I'm feeling the urge to stand right now!) but I'm better, I'm hopeful. I have the BEST uro-gyn looking out for me & I'm making appointments with every doctor or specialist I can to try to get better & better. Dr. Elizabeth Stewart who wrote the V book is my next call. Hope this info is helpful to someone - stay strong - life throws a lot at you but it's worth the struggle. Kind regards to everyone.

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  • char158
    replied
    i just started the diet thing too.. i didnt know about the yogurt.. i will watch it.. i have more trouble the coffee, or tea,, and alcholol.. i stop he alcholol over 4 months ago.. anyway.. because it causes frequency and burning.
    i start visterl and tofranil tomorrow and hopeing it helps..but i really have the feeling that i need to go back to he vesicare for a while.. i really am finding that this have everything to go with anxiety and it just affect my bladder more then anything else right now in my life.. i am taking this 1 step at a time and will go from there.. but i know the diet has a lot to do with it too.
    i also have had a lot of flare ups due to yeast infections and no pills for it.. every few days.. because of the anitbodics i have been on since march.. i feel like i am living in a vicious circle with no end.. but trying to stay busy and when i do that my mind is off of it and i feel better... that is why i think the anziety causes so much of this.. what do you all think? with the meds for tomorrow.. they are 25 mgs not sure if its enough? will it work on some of the pain or not? thanks for listening...
    :

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  • lizzie_71
    replied
    yogert

    Hey there,
    Just wanted to say," stay away from yogert especially greek yogert they are very high in potassium which is very irritating to the bladder.
    I found I can tolerate cottege cheese.

    Best wishes to everyone out there especially new memers still in alot of pain.
    lizzie_71

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  • vivsmom
    replied
    Nice to read this thread

    Since my symptoms started in May 2011. i have been having a time of it. I'm a wife and mom and work. Anxiety and depression related to this pain is too much some days. My urgo gyne put me on an anti-fungal and I'm doing in office instills. PT is also working with me. I had to beg my primary care for Atarax (and It helped for the first day)
    I've never been in pain like this.
    Some days- at least 1/2 days are okay. I know I will find something that works.
    I have been working out every other day and yoga.

    God knows this will get better! Blessing to everyone else out there-

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  • earthlady
    replied
    I was also eating non fat yogurt everyday and stopped when I was diagnosed. Haven't had the courage to try it again so I'm taking probiotics and haven't had any problems with this at all.

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  • meResque
    replied
    Nitrofuranton is an anti-biotic targeted specifically for UTI's.

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  • RobinC
    replied
    No I stopped eating yogurt once I saw it was "iffy" on the IC diet. I'll report back about the D-Mannose. I've been in awful daily pain for 8 weeks now so I'll try just about anything at this point. It just seems strange that there would be an overabundance of bacteria in my culture, enough for one doctor to say I had a UTI but another one said it "wasn't the kind" that needed meds. I'll have to ask him what kind it was when I speak to him next. What is Nitrofuranton?

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  • meResque
    replied
    You aren't still eating yogurt every day are you?? Just had to check. It's on the "try-it" column of the diet, and may make your bladder unhappier than it is already. I've only ever heard good things about yogurt's effects on the body, so I really wouldn't worry it gave you bacteria. I've never taken D-Mannose, but have heard really great things about it on this board. I used to get UTI's relatively frequently, but now I take a dose of Nitrofurantoin every time after I have sex. Since I began doing this, I haven't had one. It's been several years now that I've been UTI free!

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  • RobinC
    replied
    Thanks MeResque - it's funny you should say that because just this morning before I joined the forum, I asked my doctor if I could double up on the Atarax & he said yes. I wasn't getting any of the facial symptoms even before I started the med. For the past couple of years, I thought I had "outgrown" my seasonal allergies, but perhaps they just moved to my bladder! We'll see if the doubling up helps. Have you ever tried D-Mannose? I just ordered it & going to try it because something peculiar happenned that has me thinking. My GYN put me on Cipro for a week, saying I had a "grand" UTI, over 100,000 bacteria or whatever the case. Then after the week of Cipro, my uro-gyn saw the results of the culture & said "you didn't have to be on the Cipro, that wasn't the kind of bacteria that needed anti-biotics". So today I'm thinking "OK then what kind of bacteria WAS it??" I've always been an organic yogurt freak, eating it every day. Did some kind of bacteria build up from that? Is that what the doctor saw? And is it causing these symptoms?? I've heard that D-Mannose flushes unwanted stuff out of the bladder & that studies have shown over 90% of people with bladder issues have relief from symptoms after taking D-Mannose so I'm going to try it. Your thoughts?

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  • meResque
    replied
    I am a "seasonal allergy" IC'er. I generally don't flare (although I do watch my diet relatively well), unless the pollen or mold or whatever it is setting me off count is high.

    I will warn you, I was diagnosed in the late fall of last year, although I was not experiencing bladder symptoms at the time... my doctor put me on hydroxyzine (Atarax) at the time of diagnosis. I was humming along just great, and started bragging to my mom (who also gets horrible seasonal allergies) that the allergy meds I was on were working so well that I didn't even feel my allergies this year. Then BAM! I went into a week-long flare for NO REASON that I could figure out. I went in to see my doctor and he doubled my hydroxyzine, and the flare went away immediately. The dosage he started me on was enough to mask my FACIAL allergy symptoms, but NOT the ones related to my bladder! So if the med starts to work for your face, don't assume it's working down below!

    As earthlady said, most of do MUCH better after diagnosis. I am also back to my normal life, with very few restrictions, other than having to remember to take my meds!

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  • RobinC
    replied
    Thanks earthlady, that's very encouraging!

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  • earthlady
    replied
    Welcome to the ranks Robin. There is a wealth of helpful information here. Most of us do find a way to cope with the changes. I was so bad off at first and in so much pain I thought I would never have a normal life again, but I do. Once I figured out what some of my triggers were, found a way to deal with the flares, and found some medication and supplements that help I am pretty much back to my normal life with few restrictions. Good luck to you.

    Leave a comment:


  • RobinC
    started a topic Just Joined the Ranks

    Just Joined the Ranks

    Hi everyone - I'm really new to the whole IC thing. Last spring I felt some bladder twitches & was told I was probably passing a stone. This spring, starting the first week in May, I got the whole 9 yards - bladder pain, spasms, contractions, burning, frequency, urgency & retention. I had a cystoscopy that showed "no abnormalities" but I don't know if I trust the urologist I used, since he didn't mention IC to me. After suffering through some more really inept doctors, I finally found a wonderful IC specialist just last week, he's a uro-gyno. Since I've always been a season allergy sufferer (itchy eyes, throat, etc), he has me on Atarax - also on imipramine, and I use Hyophen as needed, since the Levsin under the tongue didn't work. I've been eating really bland, trying to get the hang of the IC diet. I was great last weekend, then Monday through today, horrible. He says the drugs & diet are the first line of defense, then if I don't get better, he'll do the cysto-hydro, probably do laparoscopy at the same time to check for endometriosis since everything gets worse around my period (due any minute now). I'm crossing my fingers that this is all allergy-related because it started at the beginning of pollen season for New England & the end of the season is coming up soon. I'd rather have a couple months of this a year than all year round, but of course I realize it's a lifelong condition & may not clear up. I'm married with 2 teenage girls, one has special needs - I haven't been able to really be a wife or mom like I usually am (ie. running around & doing everything for everyone) for months & it's wearing on everyone, mostly me. I work an office job & we know how much it hurts to sit, luckily I can also do the work from home & I do but it still means sitting at a computer at a desk. I'm the type of person who has all kinds of things going on & people say "I don't know how you do it all" - one by one I've been having to put aside things I love to do & it's depressing. But reading about successes here & remissions & the like has me hopeful. I'm also pretty tight with God, which helps Well thanks for reading this & thanks to everyone for sharing, I'm really glad this forum is here. Kind regards to you all, we may have different seats but we're all in the same boat xoxo
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