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Old 04-02-2008, 03:34 PM   #1
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Interstitial Cystitis anyone?

Anyone out there with interstitial cystitis? I'm new to this board and would like to meet people out there that understand the pain and trauma we go through.

Thanks, Sandy

 
Old 04-03-2008, 09:47 AM   #2
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Re: Interstitial Cystitis anyone?

Quote:
Originally Posted by sandy0224 View Post
Anyone out there with interstitial cystitis? I'm new to this board and would like to meet people out there that understand the pain and trauma we go through.

Thanks, Sandy
Hi Sandy,
I'm still in the diagnosis stage but I believe that I may have IC! My urogyne thinks that I have some of the symptoms but has started me on pelvic floor therapy. What are the symptoms that you are dealing with? Did you have a positive pst test? I have pelvic pain( feels like I have a Uti all the time), frequent urination, pelvic tenderness, and recently tested positive for bacteria in my urine. Antibiotics haven't made a big difference with my condition. I'd love to talk to someone else that knows what I'm going through!

Aleet

 
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Old 04-09-2008, 11:02 AM   #3
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Re: Interstitial Cystitis anyone?

Sorry! I didn't see this post til just now.

My symptoms are mostly pain. I also have radiating back and hip pain that is partly from the IC. When I was at my worst I would run to the bathroom 30-40x a day, now it's down to about 20. I have trouble starting my urine stream and can sit there for a very long time doing all but standing on my head trying to go. I have pelvic floor dysfunction they tell me and this is what causes the trouble starting the stream.

I take Azo standard a lot, well, as much as I can without overdoing it. I'm also on pain meds for this and for fibro and other problems.

I have the cysto/hydro done under general anesthesia and they saw the IC in my bladder as well as the biopsy found mast cells, so I got a definitive diagnosis.

Please let me know how you're doing, and again, I'm sorry I missed this thread. I am new and forgot you have to 'subscribe' to the thread to be notified.

Sandy
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Old 04-09-2008, 01:18 PM   #4
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Re: Interstitial Cystitis anyone?

Quote:
Originally Posted by sandy0224 View Post
Sorry! I didn't see this post til just now.

My symptoms are mostly pain. I also have radiating back and hip pain that is partly from the IC. When I was at my worst I would run to the bathroom 30-40x a day, now it's down to about 20. I have trouble starting my urine stream and can sit there for a very long time doing all but standing on my head trying to go. I have pelvic floor dysfunction they tell me and this is what causes the trouble starting the stream.

I take Azo standard a lot, well, as much as I can without overdoing it. I'm also on pain meds for this and for fibro and other problems.

I have the cysto/hydro done under general anesthesia and they saw the IC in my bladder as well as the biopsy found mast cells, so I got a definitive diagnosis.

Please let me know how you're doing, and again, I'm sorry I missed this thread. I am new and forgot you have to 'subscribe' to the thread to be notified.

Sandy
Hi Sandy,
you mentioned hip pain, and I didn't know that was a symptom but I have that too. I urinate a lot and I must go as soon as I feel the urge or my pelvic area will hurt worst. It hurts to sit long (the pain in my pelvic area grows when sitting for long times). Also I couldn't urinate this morning even though having to and now I'm having chills. My last urine test showed bacteria and I have a history of UTI's. I'm now taking Detrol La and doing pelvic floor therapy. Is your pain achy and low in your pelvic area? My pain is mostly achy and almost unbearable at times. I hope that I can get some answers soon. How do you deal with this?

Teela

 
Old 04-09-2008, 03:08 PM   #5
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Re: Interstitial Cystitis anyone?

My pain is achey. It almost feels like early pms pains, like a few days before your period starts....but it's ALL the time. Sometimes it's INTENSE pain if I screw up and eat something I'm not supposed to like citrus!! Anything REAL acidic will throw me into a flare.

I do home instillations of sodium bicarb, lidocaine and heparin and these have helped me immensely. I used to do them every day but now I can get away with only doing them when I'm flaring. I could use one right now I think!

I also take 100mg Macrobid every day for prevention of UTI's after sex and after cathing for instills. It does make a difference in my pain and the uro can't really tell me why. I don't care why, if it helps I'm gonna take it! Anything to reduce the pain!

I've been dealing with this since 2004 when I was diagnosed. I had been in the hospital like 4 times with severe pyleonephritis , passing stones, the severe infections. Then the pain came and never went away. I saw doctor after doctor, finally found a uro that thought of IC and he did the cysto/hydro and saw the IC, so I know for sure it's there.

Some people get relief from the hydro, and I did as well after I recovered. I also have fibro and I had terrible body pains from being on the OR table afterward. I had to increase my pain meds and lay in the bed for days. Most people aren't like this and I know of several who went out to dinner the same night! I know of one woman who has had over 40 hydros done and she gets ultimate relief from them. Her pain comes back and she gets a hydro done, then she's fine for a while! I wish it were that simple for me. I don't like being a patient much, so one hydro is all I'm willing to do!

Anyway, I didn't mean to ramble, it's just been an ordeal for me and most IC patients to get diagnosed and then treated. I've been on Elmiron and it didn't help after about 6 months of taking it. So, now I just treat the symptoms with the instills and I survive. The heparin in the instills is supposed to mimic the effect of the Elmiron, so, my bladder lining may have healed a little bit, I don't know.

I took Detrol LA and it made my hands and feet swell so bad, then I could NOT pee at all and was lucky that I had a cath here at home so I could empty my bladder or I'd have had to go to the ER.

It's all trial and error with the meds.

Anyway, thats my story and then some! LOL

Hope that helps some,

Sandy
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Old 04-10-2008, 10:40 AM   #6
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Re: Interstitial Cystitis anyone?

Hi Sandy, I was diagnosed in 1987 with IC via a bladder biopsy (in my 40s now). It took several years for the diagnosis and I understand how frustrating this pain is! The single thing that has helped me the most when I have an attack is to take a tsp. of baking soda (on an empty stomach is most effective) and drink it with 8 oz. of lukewarm water. Azo is somewhat helpful, but actual cranberry juice seems to make it worse in my case.

After a lot of trial and error with food, and the baking soda remedy, I am mostly pain free. There is hope!!!

Last edited by moderator2; 04-10-2008 at 11:10 AM. Reason: disallowed website - please read the rules

 
Old 04-10-2008, 10:51 AM   #7
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Re: Interstitial Cystitis anyone?

I think the hardest part in all these chronic illnesses is getting past the fact that theres no cure right now. I know they are doing research, etc, but so far it's just treat the symptoms, and if you're lucky the Elmiron will help...but it's like 1 in 3 people that it helps, so the odds aren't overwhelming.

I forgot about the baking soda, I also take Tums, they help as well. Sometimes it's the simple things huh?
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I'm on SSDI with 3 kids, a great man, and several dogs and cats. I have a myriad of pain causing medical problems.

Last edited by moderator2; 04-10-2008 at 11:09 AM. Reason: disallowed website - please read the rules

 
Old 04-10-2008, 12:07 PM   #8
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Re: Interstitial Cystitis anyone?

Hi Sandy, thanks for sharing about your condition. So much of what you said sounds just like what's going on with me(only that my doc has not diagnosed me yet). I'm sorry that you've been going through this since 2004! It's only been six months for me and it already feels like a life time living with pain. Right now I don't have any pain meds. My doc only gave me enough for 30 days with no refill. I feel like if I complain to get more then he'll think I'm hooked or something but I'm really frustrated with the pain. It interferes with my life! My doc said that we will know by week two if the pelvic floor therapy works at all. I think it helps me get to the bathroom in time but that's all it does so far. Anyhow, it's good to talk to someone who knows how you feel!
Best Wishes,
Aleet

 
Old 04-10-2008, 02:01 PM   #9
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Re: Interstitial Cystitis anyone?

aleet- I really hate it when doctors make us feel uncomfortable about pain. If you do have IC it IS a painful illness and it's been described as painful as end stage cancers. Are they going to do any testing to check for the IC? Some uro's will diagnose it based on symptoms now so maybe that is an option for you. I think the diagnosis part is the hardest because you just don't have a definitive answer and the waiting will make you crazy. One you find out for sure there are other things to try that might help you.

Please don't worry about asking your doctor for more pain meds. Maybe you can let him OFFER by telling him that your pain is interfering with your daily activities and that functioning is difficult. Maybe then he'll just write the RX for you instead of you asking.

Pelvic floor therapy might not help IC pain if that's what you have, it might help the muscles in your pelvic floor, but not necessarily your bladder pain.

Good luck with your doc and let us know how you're doing!
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Old 04-10-2008, 06:34 PM   #10
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Re: Interstitial Cystitis anyone?

Sandy,
so far I've had a urodynamic test, a potassium sensitivity test( both water and potassium hurt my bladder),and a urethal pressure test. Based on my symptoms, my doc suspects IC but I don't fit the criteria for more pain with menstrual cycle. My mom said the same thing that you said about the pain meds. I'm tired from hurting everyday.

The therapist asked me what do I wish to get out of the Pelvic floor therapy and I told her, " a cure", "no more pain" and she just looked at me. I feel like I'm wasting money and time on the pelvic floor therapy. Do I have to have a bladder biopsy to confirm if it's IC?

Aleet

 
Old 04-11-2008, 07:57 PM   #11
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Re: Interstitial Cystitis anyone?

You don't have to have a biopsy or even a cysto/hydro. Many uro's will diagnose based on symptoms...and that way they can start you on treatments like Elavil, or Elmiron, other bladder/urgency/frequency meds. Meds for bladder spasms, pain (antihistamines help with the mast cells which cause pain). Right now you could easily take benadryl at night and see if that helps. Most people have to take 50 mg, but I don't know if you are tolerant to benadryl or not. It knocks most people out....but not me anymore! Hydroxyzine aka Vistaril or Atarax helps and is also an antihistamine but it's by RX.

There's so much you can take to help control the symptoms. I know so many people who are fully functional people after taking their combo of meds. It varies so much from person to person that one treatment isn't the fit for everyone.

Maybe at your next appt you could ask him if he would try treating the symptoms along with the pain and see if you make any progress. It couldn't hurt to ask. I sure hope you get some relief soon. I know what it's like to have that bladder pain that just doesn't go away.

Mine has been a major ache the past few days. Feels like period stuff, but that's just ended. ::sigh::

Good luck with your PT and I hope you see your doc soon!!
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Old 04-14-2008, 05:41 PM   #12
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Re: Interstitial Cystitis anyone?

Sandy,
Thank you!!!!! Thank you for all this info!! As a matter of fact I've been taking Benadryl for hayfever and it's been helping with the chronic Pelvic pain(that's what my doc calls it)! I really think that I have IC because so much of what you said is exactly how I feel. I get a little tired with the benadryl but it doesn't knock me out. Actually not much knocks me out. Anyhow, I'm taking all of this info with me to my doc. I'm going to miss the PFT this week because of "that time of the month". I really think that we have to research things for ourselves because sometimes the docs just don't know what the problem is. I guess that's why it's called practicing medicine.Again thanks so much for sharing. I don't feel so alone in this anymore!
Aleet

 
Old 04-15-2008, 09:23 AM   #13
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Re: Interstitial Cystitis anyone?

Let me know how your appt goes!
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Old 05-07-2008, 09:26 AM   #14
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Re: Interstitial Cystitis anyone?

Quote:
Originally Posted by sandy0224 View Post
Let me know how your appt goes!
Hi Sandy,
I just got back from my doc and he's scheduled a cysto/hydro. He thinks that it's IC. I'm hopeful that I'm going to get some relief from this soon. I may continue the PFT because it really helps me with leaking. I think that my visit was a good one. Although I still have this achey pain, I at least know what makes it worst and what makes it bearable. Thank you for your advice, it came very handy while talking to my doc!!

I wanted to ask you about the cystoscopy. Was it painful? How long does the procedure last? Did the hydro make you feel better afterwards?

Aleet
ps. how are you feeling?

 
Old 05-07-2008, 04:27 PM   #15
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Re: Interstitial Cystitis anyone?

I didn't have any pain during the procedure at all. I was completely knocked out, general anesthesia, intubated, the whole works. I wouldn't have had it any other way either! I went home a few hours after the procedure. I didn't have much pain related to my bladder but it did feel like a big watermelon in my abdomen for a while and I couldn't sleep on my stomach which was a problem for me!

I have a lot of other health problems and mostly the fibro is what flared up after the positioning in the stirrups while I was asleep, and all the moving around from bed to table, from table to bed, etc. I hurt like the dickens all over, but this doesn't seem to happen to most people, just seems like I got 'lucky'! NOT!!

After I recovered I did feel some relief from the hydro. My frequency and urgency diminished to a relatively normal amount and the pain was much better.I know of one woman who was diagnosed in the 70's and has had about 45 hydros done because she gets such great relief from them. When her symptoms start flaring she schedules a hydro and that's her treatment. I don't think she takes any pain meds except an occasional Ultram every now and then.

I think following the diet is very important. I know we can't post links here but you might want to do a search for the IC Diet and see what you can find. It's a great help for me to watch what I eat.

Thanks for asking how I'm feeling. I am doing pretty well today because I had acupuncture done today!! This is my second treatment and he really jazzed up the electric stim in the leads. I felt it up and down my spine. I came out of there light headed and slightly buzzed! LOL I swear, it's great relief. My back pain can be debilitating sometimes and this has made it so much better for me. I don't have to hobble around the house all day long and don't have to wear my tens unit! It helps my bladder pain and my all over fibro pain too!!

You might want to check into it and see if your ins covers it. Mine does and I was so excited to find this out! I don't know how many sessions I am allowed but they pay, so far, 100%!

Anyway, didn't mean to stray... I would continue with the pelvic floor therapy too. I am supposed to go in for therapy too but just haven't bothered. It's just one more trip for me a week to go see some sort of medical person. LOL I know it would help me with my issues with starting my stream. I all but stand on my head sometimes to get the stream to start.

Let me know when you get scheduled for your hydro. I was afraid, I don't think you'd be human if you weren't, but it will give you a definitive diagnosis and also rule out cancer, which is a great relief!! He'll take biopsies to look for mast cells in the bladder and look for ulcers. When it was all said and done I was glad I had mine done.

Take care, Sandy
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