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I too have the Burning, pain, Back pain, groin, stinging, so so frequent urination feels like my bladder is still full. Feels like UTI but not. It will get better. I cant not say enough go to a doctor who treats iC a lot. I got my IC 8 weeks after I had a bladder mesh put in, they thought I had Honeymoonitis because I just got married too. I just had the bladder mesh taken out in march it did so much damage to my bladder and vaginal wall. I go for a check up next week and I know something is still wrong as it so very very pain full when I am with my husband. I am here for you if needed. I also have RSD in right foot and fibromylia in whole body
 

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Put the camera in your bladder, do you mean a Cystoscopy? What was the
outcome/results? Do you have another appointment? If not, can you ask for a
recommendation to see a Urologist? Have they asked you to do a voiding diary?
 

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Put the camera in your bladder, do you mean a Cystoscopy? What was the
outcome/results? Do you have another appointment? If not, can you ask for a
recommendation to see a Urologist? Have they asked you to do a voiding diary?
I have had this done 3 times in office and then in hospital while being to so sleep because the scrapped my bladder too. Then when I went to have my Precheck up for my bladder surgery they did again. I have 1 photo of 1st time il try to find it
 

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Discussion Starter #44
So sorry to hear about your diagnosis. I also have IC. I've had it since I was a child, but wasn't diagnosed until my 20s. As LS said, IC has many faces. A symptom for one person might not be a symptom for another. I would get a referral to a urologist first thing, and specifically one that is really familiar with IC. They'll likely do a cystoscopy right off the bat, and then you'll be able to start trying different treatments until you find something that works for you.

The good news is that most people are able to find some kind of relief through diet changes, medication, or treatments. Also, if you are able to control it with diet (which would be amazing!), you would eventually be able to add things off the "no" list to see if they trigger a flare up. Just like symptoms, foods that trigger pain differ from person to person too. Years and years later, I'm still finding out what works for me. You are not alone!

P.S. If a urologist wants to put you on a drug called Elmiron, get a second opinion.


Thanks for the reply I can't beliee how common it actually is. I have an appointment with my family doctor September 16 I will ask for a referral to a urologist!
 

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Discussion Starter #45
Put the camera in your bladder, do you mean a Cystoscopy? What was the
outcome/results? Do you have another appointment? If not, can you ask for a
recommendation to see a Urologist? Have they asked you to do a voiding diary?
They just found a bunch of closed blisters and that the bladder was inflamed/swollen he said its interstitial cystitis I have a follow up appointment in October to see if managing diet has worked if not medication is the next step. Nothing else yet.
 

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Thanks for the reply I can't beliee how common it actually is. I have an appointment with my family doctor September 16 I will ask for a referral to a urologist!
Good idea. When your gyno did a cystoscopy, were you asleep or awake? There's a difference in what they can see if they're using a general or local anesthetic. When you're knocked out for a cysto, they fill your bladder with liquid before taking photos.

BTW, I have the same exact symptoms as you and went down the same road for a diagnosis (having recurring "UTIs"). Even if your gyno does know his/her stuff regarding IC, it's always good to get a second opinion, especially for treatment. I hope you find some relief! My symptoms never go completely away, but I haven't had a flare up in months.
 

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Discussion Starter #47
Good idea. When your gyno did a cystoscopy, were you asleep or awake? There's a difference in what they can see if they're using a general or local anesthetic. When you're knocked out for a cysto, they fill your bladder with liquid before taking photos.

BTW, I have the same exact symptoms as you and went down the same road for a diagnosis (having recurring "UTIs"). Even if your gyno does know his/her stuff regarding IC, it's always good to get a second opinion, especially for treatment. I hope you find some relief! My symptoms never go completely away, but I haven't had a flare up in months.


I was awake and they gave no anesthetic they just put the camera in filled my bladder with air so they could see better.

I just feel like I'm scared to eat anything now
 

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I was awake and they gave no anesthetic they just put the camera in filled my bladder with air so they could see better.

I just feel like I'm scared to eat anything now

Most importantly NO fast food, NO junk food, NO coffee, NO soda, NO juice,
NO fruit.(for now, later you will learn what other things irritate your bladder,
some IC patients tolerate more foods than others, depending on the severity.)

The rest you can eat in tiny portions and see how it affects your symptoms.
A voiding diary will help. You simply write down what you drink, the time you
urinate, and the amount, so you could keep an eye on how often you go, and
see if you go more often when you are eating certain foods, doing certain
activities, etc. This way you can learn to stay away from them, especially if
they don't only cause frequency but pain or irritation as well. It will also
greatly help your urologist if you brought the diary with you once you go see
him.

Buy a cup to measure your urine, make a voiding diary for 1 week, and write
down all of your symptoms and all of your questions for the urologist, so once
you go you will be prepared. It's not easy to get an appointment and you
usually have to wait a while to be seen, so better be ready to ensure you
get the most out of that appointment.


 

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Discussion Starter #49
Thanks Ls I have started a diary for NO foods list but it's hard to tell if something I ate or drank was the cause! I've been onlydrinking water I'm going to go to the health store and buy some pear juice if I can find it or blueberry juice they're on the bladder friendly lists online I can't take just drinking plain water 24/7 I always mostly drank water anyways but I adder crystal lite for flavor now I cannot :(

I'm not a coffee drinker and I only drink chammomile tea to help me sleep occasionally which thankfully is on the bladder friendly list! I only drank soda once In awhile gonna e hard to give up my once a month root beer! Lol

I read almond milk is soothing during a flare up and I buy almond milk a lot!

I'm in the middle of moving I'm going to have to find time to make lists of foods that are bladder friendly and try an make up meals I really just feel like I'm going to starve to death I'm an EXTREMELY picky eater this restrictive list is really hard for me!

I got out a good cry today so now it's time to focus on making it positive
 

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Oh Sherri, there is no need to cry girl, you are taking control, you are doing
something about the problem, taking steps in the right direction, that alone
should make you feel better. I know it doesn't seem this way now, but you
are extremely fortunate that your Doctor caught it so early. Right now you
have so so many options of treatments, you can also alter your diet, limit
stress & exercise, etc, lots of things to help you feel better and keep your
symptoms from progressing. Try to not be so bummed about the diet, look
at it as a healthier way of life, most things IC patients can't eat are not so
great for you anyways. You say you can't figure out which foods make things
worse, that is a good sign, because when I eat something I'm not allowed I
often times can not walk at all for the rest of the day at least. For now stick
to the list on the IC network, as a guide. Try to be creative with things that
you can eat, look up recipes, etc, try to make it fun. Most veggies are IC
friendly and there a billion and two dishes that you can make with veggies.
Rice, fish, eggs, chicken, turkey, cheese...these are all delicious foods that
offer lots of possibilities. There is no need to starve. As for water, you got to
learn to love it, there is nothing out there that is better for you, and it is the
safest drink for you right now. It won't burn your bladder and as a bonus it'll
give you fabulous skin. Just have to look at the bright side of things you
know. With IC it's very important to work on not only treatments and diet
but also on your mental strength, because stress does the body no good,
especially an IC body. Try to not worry about the future, just take it a day
at a time, have fun cooking foods in new ways and make sure to keep going
to the Doctors and even get second & third opinions, because IC often times
gets misdiagnosed. Don't give up and don't worry so much, it'll all be ok, as
long as you keep yourself strong up there(mentally) and take care of your
body. Hugs.
 

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Oh Sherri, there is no need to cry girl, you are taking control, you are doing
something about the problem, taking steps in the right direction, that alone
should make you feel better. I know it doesn't seem this way now, but you
are extremely fortunate that your Doctor caught it so early. Right now you
have so so many options of treatments, you can also alter your diet, limit
stress & exercise, etc, lots of things to help you feel better and keep your
symptoms from progressing. Try to not be so bummed about the diet, look
at it as a healthier way of life, most things IC patients can't eat are not so
great for you anyways. You say you can't figure out which foods make things
worse, that is a good sign, because when I eat something I'm not allowed I
often times can not walk at all for the rest of the day at least. For now stick
to the list on the IC network, as a guide. Try to be creative with things that
you can eat, look up recipes, etc, try to make it fun. Most veggies are IC
friendly and there a billion and two dishes that you can make with veggies.
Rice, fish, eggs, chicken, turkey, cheese...these are all delicious foods that
offer lots of possibilities. There is no need to starve. As for water, you got to
learn to love it, there is nothing out there that is better for you, and it is the
safest drink for you right now. It won't burn your bladder and as a bonus it'll
give you fabulous skin. Just have to look at the bright side of things you
know. With IC it's very important to work on not only treatments and diet
but also on your mental strength, because stress does the body no good,
especially an IC body. Try to not worry about the future, just take it a day
at a time, have fun cooking foods in new ways and make sure to keep going
to the Doctors and even get second & third opinions, because IC often times
gets misdiagnosed. Don't give up and don't worry so much, it'll all be ok, as
long as you keep yourself strong up there(mentally) and take care of your
body. Hugs.
Ls is so right most women go a long time for a doctor finally knows what is wrong and able to start treatment. I cried too and I got threw it as I am the worlds pickiest eater. After awhile and your bladder gets under control and heals you will be able to add some foods back. Even when the doctor told me I also had candida I thought that was it, I am done and cried and cried but it been almost a year in Nov and I am doing fine. Get your Bladder healed up and it will get better I promise. LS has the worst case ever she lives day by day and is happy most days, yes she has some bad ones but she gets right back up LS is so strong. Mine is under control now and little by little I add back to my diet and even eat a little pasta sauce, home made of course to control the acid. Please feel free to PM me and I know LS too. You can get on my FB too but have to warn you, I post a lot of bible things. My fb is Theresa Dawnlittlemommy | Facebook which you may like I don't know bible helpes me through a lot. Again I am here for you.
 

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Discussion Starter #52
Hey ladies I did not even see these replies!!! What the heck?!?

Anyways I feel a bit better reading books and that mine isn't as severe as some but what I meant by I can't tell what triggers is bc I'm in constant pain it never goes away some days I eat nothing and have just had water and can barley walk!!!

I'm trying diff supplements and relaxation

I can't eat eggs I'm allergic and I don't eat fish :(

I'm thinking of going gluten free as there's tons of positive studies on the link between gluten and ic have u ladies tried this? Does it work?

I'm reading the better bladder book and to wake in tears

Any other good book recommendations? Of course I read online too but online confuses me some websites say one thing then another contraindics it!

Ugh I can't afford elmiron is $200 a month and pyridium was $400 for 3 months :(

So I have to rely on self help

My dr wants me to get the bladder installations but I probably can't afford that either I work full time as a nurse too yet get screwed for drug benefits pees me
Off!

I'm peeing up to 25 times a day now but am trying to train my bladder to hold it a bit more without harming myself further it's hard at work!!!
 

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Hey ladies I did not even see these replies!!! What the heck?!?

Anyways I feel a bit better reading books and that mine isn't as severe as some but what I meant by I can't tell what triggers is bc I'm in constant pain it never goes away some days I eat nothing and have just had water and can barley walk!!!

I'm trying diff supplements and relaxation

I can't eat eggs I'm allergic and I don't eat fish :(

I'm thinking of going gluten free as there's tons of positive studies on the link between gluten and ic have u ladies tried this? Does it work?

I'm reading the better bladder book and to wake in tears

Any other good book recommendations? Of course I read online too but online confuses me some websites say one thing then another contraindics it!

Ugh I can't afford elmiron is $200 a month and pyridium was $400 for 3 months :(

So I have to rely on self help

My dr wants me to get the bladder installations but I probably can't afford that either I work full time as a nurse too yet get screwed for drug benefits pees me
Off!

I'm peeing up to 25 times a day now but am trying to train my bladder to hold it a bit more without harming myself further it's hard at work!!!

You will never learn what makes your IC symptoms worse if you don't start an
elimination diet and voiding diary. But you do have a guide of what to stay
away from, this is where you need to start immediately. Do not keep eating
the same old crap, this is so important, I can't stress it enough. The right
diet will help you as much or MORE than the drugs. Ps: Elmiron is garbage.

I urinate anywhere from 80 to 100 times within 21 hours. I get a total of 3
hours of sleep per night. I was diagnosed very late, and poked and probed
far too much. Don't wait until you lose your job, your friends and a huge
part of your life...change your diet now. You don't like fish? Learn to love it.

Sounds harsh, but I do not wish this on anyone, especially a sweetie like you
Sherri. You got to kick some IC butt girl!
 

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Discussion Starter #54
None of my friends have even asked me how I was they all disappeared already my family doesn't understand it so they don't really ask much the only support I have is my bf he's the only one that even noticed my suffering for the last 10 months he sat with me countless hours at dr offices and clinics to be told I'm faking there's nothing wrong with me etc I got the diagnosis early bc I am a fighter I have a zero Bs tolerance I had enough one day and snapped on my drs office receptionist who told me I was faking and that I'd have to wait a year to see a urologist well guess what 2 days after I snapped I had an appointment lol

I have heard of people going as much as u and feel so horrible I can barley manage 25 times ill keep working tho bc I have to I could never live sitting around at home I'd prolly die I took all of last week off work bc I couldn't move let along walk I also do not get any sleep I'm peeing and uncomfortable I toss and turn all night I'm exhausted!

I have changed my diet for sure I don't eat anything on the no list I still have my odd Rootbeer but it doesn't make it worse so maybe it isn't a trigger to be honest nothing makes it worse it stays the exact same and doesn't go away I lost 4 lbs since changing my diet and If I lose anymore ill die literally! I'm very underweight I'm scared to end up malnutritioned and end up in the hospital.

I've never eaten fish my entire life probably won't start now I'm not a huge meat eater I only eat tiny portions I actually hate meat so much it makes me vomit if I eat it in large quantities I've tried forcing myself to eat bigger portions but it makes me puke lol I'm anemic and have a severe b12 deficiency that causes me to faint if I don't take Injections which sometimes I need to inject twice a week. Oh I especially can't eat plain meats I have to dip it in something and we ic people can't have dips or sauce :( I tried making it with just garlic for flavor but its still too plain for me I just cannot stop gagging. I've been that way my entire life my mom had to mince up meat and hide it in things to get me to eat it.
 

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That's the thing with IC, you don't actually "see" it, so many don't understand
how much of a handicap it can be. I'm so glad you have a good man by your
side. You want to laugh?(well, or cry) The first Doctor I saw when I started
realizing something is wrong, told me(at 20 years old) that I'm too young, and I
just need to relax, take a vacation! Back then I did not have pain yet, but did
have frequent urination, can you imagine the difference it could have made if he
diagnosed me? And girl you don't need meat, for me personally it makes things
worse. I eat fish, chicken and beans though. You have to find alternatives, you
can't just starve, it won't help your IC either. How about nuts? I personally can't
eat them, but I know many IC people online are ok with them. Nuts are a great
protein source. How about veggies? I eat mostly veggies, it helps me stay full,
you can eat almost all veggies as much as you want. Beans? Do you like beans?
Cheese? Greek yogurt? I wish you'd find the will to stop being so picky, you
need to eat Sherri. You got me worrying about you now.
 

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Discussion Starter #56
Haha I do eat!!!! I just can't eat a lot of meat bc i don't like it I do like beef tho I could eat beef all the time in bigger quantities than other meats chicken I hate like with a passion unless its on a burger and I can't have mayo anymore so there goes chicken lol! Ahh it's hard tho bc if I actually eat something I hate ill vomit lol I do like veggies and I love rice! Jasmine rice was on the good list and I could live off rice lol

Don't worry my bf would hold me down and shove food down my throat if he had to he's been amazing he's been researching tons! I'm so freaken thankful and blessed I have no one else at all! Except my doggies I swear they know when I'm in pain they just lay in bed with me and ninja cries with me a lot of the time!

My doctor kept telling me my urine was negative for infection but kept making me take antibiotics then I said this is not a bladder infection anymore I've taken antibiotics for 9 straight months and I still have symptoms. Anyways I refused to take anymore antibiotics which got me the referral.

Silent illnesses are the worst. I don't want to lose my full time at work as its very hard to get full time so I'm forcin myself to work and trying not to take too much time off trying to say calm and breathe through each shift. Were also in the middle of finding a house to purchase so I need all the $ I can get.
 

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Sherri, I just said goodnight to you in the other thread, because I'm getting
up at 4am, in two hours. But I just have to quickly say this...DO NOT EVER PUT
MONEY BEFORE YOUR HEALTH. Health is everything, the nice house will not
matter if you are glued to bed. Please put your health first an foremost, do not
push yourself too hard physically, I guarantee you it will worsen your IC, I
worked two full time jobs and volunteered in the beginning stages of my IC,
suffice to say my stubbornness made me pay a price. Take care of your body.
Please. Health is everything.


Big hugs!
 

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Me too Sherri, me too. That's why even though I can't work at the bank anymore,
I still work training, grooming and translating from home, I'm not working as much
as I would like, but I'm contributing, I have to. What I'm saying is don't overdo it,
especially at the sake of health.

ok, now I'm going to bed! lol :)
 
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