IC & Me
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TaraMaria
Posts: 1,975
Hi There!!
Learning to live a healthy lifestyle is hard enough let alone adding the strain of Interstitial cystitis to the mix. When I saw that there were actually a few of us on here that suffer with this I thought I would create a thread where we could check in every couple of days or once a week. I know I could use the support and I'm sure you could too. IC is incredibly painful and I'm striving to be a healthy person for my family on top of coping with the health issues that I have.
How about this! To get started:
Name:
Age:
How long you've been diagnosed:
Meds:
Weight Loss Goals:
Triggers:
Story:
I know that I could really use a sounding board of other people who have this pain. I can give encouragement, motivation and love. Lets support one another as we live our lives and overcome this chronic syndrome!
)
Learning to live a healthy lifestyle is hard enough let alone adding the strain of Interstitial cystitis to the mix. When I saw that there were actually a few of us on here that suffer with this I thought I would create a thread where we could check in every couple of days or once a week. I know I could use the support and I'm sure you could too. IC is incredibly painful and I'm striving to be a healthy person for my family on top of coping with the health issues that I have.
How about this! To get started:
Name:
Age:
How long you've been diagnosed:
Meds:
Weight Loss Goals:
Triggers:
Story:
I know that I could really use a sounding board of other people who have this pain. I can give encouragement, motivation and love. Lets support one another as we live our lives and overcome this chronic syndrome!
) 0
Replies
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I don't have IC, but I have several family members that do, so I think it is great that you started this thread!0
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Name: Tara
Age: 24
How long you've been diagnosed: February 2010
Meds: Elmiron, Bladder Instillations
Weight Loss Goals: Right now maintaining but wouldn't complain if I lost 5 pounds
Triggers: Caffeine, onions, mayo, chocolate are definitely ones that I will feel almost immediately
Story: PCOS and endometriosis with severe pelvic pain. After years of ovarian cysts, brutal endometrial pain and severe bleeding I had a hysterectomy in November 2009. Pain was gone for a while but then I noticed more pain that was intensifying. It was different then before. Most likely I could feel it better since everything else was gone. Cystoscopy was done in February which diagnosed me with IC. It was one of the most painful experiences of my life. I woke up 3 minutes after they pulled me from surgery screaming. They started me on Elmiron which I have to believe is helping since I haven't had quite the flare ups that I used to have. However when I do have them, I'm way to hard on myself. No one knows what this syndrome is and it almost seems that since its an invisible disease its not real, so what I'm feeling isn't real. I try to push past the pain and end up curled in a ball. For the longest time I felt so upset because I gave up so much with the hysterectomy to be pain free and I ended up having this. But that was silly. You can't ask why did this happen or why me God. You just have to go with each day, one step at a time. For the longest time, I bit off more then I could chew. And now I have to just cut myself some slack and say it doesn't matter what other people think, unless they take a walk in my shoes, they don't have a clue. Now I try to encourage other IC people as much as I can. Its such an unknown culprit. There really should be more awareness!) 0 -
I don't have IC, but I have several family members that do, so I think it is great that you started this thread!
Thank you!!!) You are sweet!! ) 0 -
Hi Tara,
Great idea for a thread.
Name: Lisa
Age: 32
How long you've been diagnosed: Not formally diagnosed.
Meds: None
Weight Loss Goals: 15% body fat which should be about 58kg (128lb)
Triggers: Unsure what starts it but coffee, chocolate and lack of water prolong a flare.
Story:
I haven't been formally diagnosed but I'm pretty sure I've had IC. I haven't had a flare up for 12 months or so, so hopefully I'm in remission. A bit of history, I had recurring UTIs for 12 months and ended up in hospital with a kidney infection in 2002. That was treated successfully and everything is fine there. I then started to get the UTI symptoms again but my usual method of dealing with it (i.e. drinking a ton of water to dilute and flush out the infection) wasn't working and drinking cranberry juice made things much worse! The only thing that seemed to work was getting a prescription for antibiotics from my Doc. She would take the usual urine sample to get tested and they kept coming back negative! She didn't know what was going on either. My pain was never constant and would come and go at irregular intervals. I finally found a forum (http://www.ic-network.com/forum/) in 2008 and after looking around the site it sounded exactly like what I was going through, though no where near as severely as many women. The next time I fared I used some of the techniques women had talked about (warm bath followed by a warm heat bad on my lower stomach) and it really helped relieve the pain. Somewhere along the line The symptoms have gone away and I haven't had a flare in at least 12 months. I'm hoping this is permanent as I really don't want that pain back in my life.0 -
Name: Dominica
Age: 30
How long you've been diagnosed: 9 months
Meds: no prescription meds, I do occasionally use Prelief for trigger foods
Weight Loss Goals: 97 lbs, down 7 so far
Triggers: still learning what they are, but I know all soda especially my fave Diet mtn dew
, mexican food, acidic fruit, some chocolate......
Story: I had no problems until my car accident in Oct 2008. When I was taken to the hospital that day, I had slight pain in my pelvic area and was told I probably bruised something. Over the next year, I went to the er because either I couldnt urinate, I was losing my bladder function, or I had blood in my urine. First I was told, you have kidney stones which I did then I was diagnosed with possible recurrent UTI. They diagnosed me with the later because they couldnt find anything else wrong with me. In the meantime I had been researching online all the possible diseases I could have, IC was one of them. I found a local uro-gynecologist and once they did the tests, he said I had one of the most severe cases he has seen. He immediately put me on bladder installs, elmiron and a few other drugs. None of these did anything for me except make me broke, because my insurance company (who I also work for) denied my treatment as experimental. Despite this setback, I am actually thankful they did deny it, because it made me take responsibility for my disease and I found several support groups on facebook. I know now what may trigger an episode and work to avoid that issue. Stress is a big one for me. But over the last 3 months or more I have had a major flare, just minor ones. I no longer take any meds except for Prelief which is a powder that I put on my foods if I cant avoid eating something that might cause a flare. I no longer need to wear depends diapers, wore those for over a year. I do still get up at least 5 times a night to go to the bathroom, so I dont get the best of sleep but thats ok. Its better than being in constant pain and having no bladder control. I count my blessings that I know what my disease is and how to treat it.0 -
I'm glad to hear you have some control over your IC Dominica. I've only every had what I think is a mild case of IC and I haven't had any flares for a long time, so I'm counting my blessings.0
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name: Sandy
age: 26
diagnosed: year and a half ago
meds: was on elmiron but had to stop taking it because i lost my insurance and its over $300 a month, but i dont think it was helping much anyway. I take tylenol and ibuprofen for pain atleast twice a day, and i've been getting bladder washes every couple months.
weight loss goal: 125. i lost 70 and was only 5 lbs away from my goal but i am now up 5 lbs from where i was this summer.
triggers: everything! lol. chocolate, citrus, caffeine, carbonation, spicy, ketchup, deep fried foods, cranberry juice, zinc. i'm sure there are a lot more things, and i need to start paying more attention to what i'm eating. its just hard to eat just "bland" food all the time.
story: when i was pregnant with my second son i had a really bad kidney infection when i was 9 months along and ended up spending the night in the hospital. ever since then ive had severe bladder pain. i think thats when it started but my doctor said its unrelated. i went to the medi center several times in the next 6 months or so with bladder pain and they kept telling me it was a bladder infection. finally my family dr referred me to a urologist. i had 2 cystoscopies, a biopsy, and was tested for endo. when i was finally diagnosed they put me on elmiron and that was it. i had to insist on trying other things because i was in a lot of pain. i really think my dr doesnt believe how much pain i am in because he's always telling me he doesnt understand why i would be in so much pain, it didnt look that severe, and "your bladder holds a lot of urine". what the hell do i care?? i still pee every 30 minutes, and am in a lot of pain. anyway, thanks for starting this, i really need some support. very frustrated.0 -
name: Sandy
age: 26
diagnosed: year and a half ago
meds: was on elmiron but had to stop taking it because i lost my insurance and its over $300 a month, but i dont think it was helping much anyway. I take tylenol and ibuprofen for pain atleast twice a day, and i've been getting bladder washes every couple months.
weight loss goal: 125. i lost 70 and was only 5 lbs away from my goal but i am now up 5 lbs from where i was this summer.
triggers: everything! lol. chocolate, citrus, caffeine, carbonation, spicy, ketchup, deep fried foods, cranberry juice, zinc. i'm sure there are a lot more things, and i need to start paying more attention to what i'm eating. its just hard to eat just "bland" food all the time.
story: when i was pregnant with my second son i had a really bad kidney infection when i was 9 months along and ended up spending the night in the hospital. ever since then ive had severe bladder pain. i think thats when it started but my doctor said its unrelated. i went to the medi center several times in the next 6 months or so with bladder pain and they kept telling me it was a bladder infection. finally my family dr referred me to a urologist. i had 2 cystoscopies, a biopsy, and was tested for endo. when i was finally diagnosed they put me on elmiron and that was it. i had to insist on trying other things because i was in a lot of pain. i really think my dr doesnt believe how much pain i am in because he's always telling me he doesnt understand why i would be in so much pain, it didnt look that severe, and "your bladder holds a lot of urine". what the hell do i care?? i still pee every 30 minutes, and am in a lot of pain. anyway, thanks for starting this, i really need some support. very frustrated.
Hey hunny!!! Are you seeing an actual uriologist? Because that makes me livid that he would say those things to you. I've dealt with some crappy doctors in my day, but IC is one of those things that if I hadn't walked in to a urology office with a doctor who knows all about IC, I would probably still be laying on the couch in pain. That is completely unacceptable for a doctor to say it didn't look that severe and that your bladder hold a lot of urine. Um, duh? If my bladder was normal, it would function normally!
Ya know, I'm not sure how long ago you tried Elmiron but this past spring they were bought out by a company and they are no longer considered experimental...at least that is what I've read on the message boards. So depending on when you tried it, you might be able to get it again, if you want. I know that it took a long while for it to take affect for me.
I'm glad that this website exists and that we have the ability to start threads like this. I really want to be able to just post whenever we are feeling good, bad and ugly. IC is wretched. Its been awful for me the past couple of months, but I did go off of Elmiron for a bit. In a way its my own fault. I'm sorry we all have this disease but at least we all know how the other is feeling and can be supportive!!!0 -
Elmiron....SIGH...its a love hate relationship.
:devil: Hate because I'm exhausted.
:devil: Hate because its supposed to take a long time to work (up to a year.)
:devil: Hate because I'm still in pain.
:devil: Hate because it makes my throat all raspy.
:devil: Hate because it affects my coumadin. Elmiron is a blood thinner and makes my blood way too thin with the coumadin.
Love because I really don't find I have to be AS careful as I used to be with certain foods. Love because I have not had an intense flairup while on it.
Thats about it...Haha! I got so fed up with my coumadin being off the charts one week and then bottoming out the next that I stopped taking Elmiron.
What do you all do to bring relief? Nights seem really hard. Right before I fall asleep, its like all I can concentrate on because I'm laying in bed, quiet. It just feels so intense. Anyone notice if swimming makes it worse, from the chlorine?0 -
yes i do see a urologist, and he is the one that said those things. i am going to try and find a new one but i live in a small town so i might have to drive about an hour away.
to bring relief i take tylenol which doesnt really help much. at night if its really bad i take tylenol pm to help me sleep. i still get up to pee like 5 times, but the pain doesnt keep me awake. i stopped taking elmiron in july. thats when i was told it was over $300 a month. how often do you take it and what dosage?0 -
Technically I'm supposed to take it four times a day. But if I were to do that, I would be dead on my feet. The exhaustion side effect is brutal. I take it twice a day, once in the morning and then once in the evening. I've started swimming in the past month at my gym and I've noticed my flare ups have been much worse. I'm terrified its from the chlorine because I really don't want to stop swimming. I've just been muddling my way through it. Right now I'm in the works for another cystocopy. Its been 9ish months since my last one and they have been known to help patients with their flare ups. I'm hoping that will help.
Do any of you spend time on the IC message board? I did for a while and then stopped because of people being either too negative or feeling that my questions/comments got swept under the rug. I might need to try going back though!) 0 -
I haven't really been active on the message board, more kind of used it to search for information/advice.0
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me too, ive never used the message board but have done research there. the cystoscopies didnt seem to help me flare ups, but my bladder washes do. if i had insurance i would get it done once a month0
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These bladder washes, are they supposed to be the same as like bladder installations? I've gone in as many as three times a week to get catheters, with no success. It only leaves me feeling more uncomfortable. I'm not sure what to do about the cysto...I was actually suppose to have it done yesterday. But I canceled Thursday and rescheduled for January. I'm not sure if it helped me or not. I DO know that you are supposed to hold yourself for about 30 minutes after the procedure and I had to go to the bathroom 5 minutes after I woke up. I woke up instantly. They said most people stay out of it for anywhere from 30 minutes to an hour and the anesthesiologist had a hard time keeping me asleep. I keep saying, "I'm in pain, I'm in pain." So I decided not to do it yesterday. Blech.
One of the worst things I've noticed is when I get sick with a cold and I desperately want to chug orange juice or ANY kind of juice...I just can't. Talk about a flare up. I have about 24 hours of juice drinking and then BAM! Its bad...anyone notice this with juice?) 0 -
Hi Tara,
Great idea for a thread.
Name: Lisa
Age: 32
How long you've been diagnosed: Not formally diagnosed.
Meds: None
Weight Loss Goals: 15% body fat which should be about 58kg (128lb)
Triggers: Unsure what starts it but coffee, chocolate and lack of water prolong a flare.
Story:
I haven't been formally diagnosed but I'm pretty sure I've had IC. I haven't had a flare up for 12 months or so, so hopefully I'm in remission. A bit of history, I had recurring UTIs for 12 months and ended up in hospital with a kidney infection in 2002. That was treated successfully and everything is fine there. I then started to get the UTI symptoms again but my usual method of dealing with it (i.e. drinking a ton of water to dilute and flush out the infection) wasn't working and drinking cranberry juice made things much worse! The only thing that seemed to work was getting a prescription for antibiotics from my Doc. She would take the usual urine sample to get tested and they kept coming back negative! She didn't know what was going on either. My pain was never constant and would come and go at irregular intervals. I finally found a forum (http://www.ic-network.com/forum/) in 2008 and after looking around the site it sounded exactly like what I was going through, though no where near as severely as many women. The next time I fared I used some of the techniques women had talked about (warm bath followed by a warm heat bad on my lower stomach) and it really helped relieve the pain. Somewhere along the line The symptoms have gone away and I haven't had a flare in at least 12 months. I'm hoping this is permanent as I really don't want that pain back in my life.
I'm sorry it took me so long to reply to you! Ha ha! First off, I'm glad you haven't had a flare for so long. Second, your story sounds a lot like my aunt's. She has IC but all of her tests came back negative. They finally did a cysto on her and that is when she got her diagnosis. Have you had one of those? I'm sure you have this...I've never had a positive UTI except during my pregnancies. Then I've gotten them full fledge. Is your doc a urologist? Thanks for writing on this thread!) 0 -
Name: Kathleen
Age: 37
How long you've been diagnosed: fall 2007
Meds: Elmiron, Elavil, Vistaril
Weight Loss Goals:125 maintaining, although lately been creeping back up.
Story: I believe I have had symptoms since i was a child, the urgency. Also have vulvar vestibulitis I, which apparently was born with and is autoimmune as opposed to a trauma or secondarily. Did not even know I had the cystitis until had surgery to remove vestibule. My pain remained and doctor said I have IC as well. Apparently, the tissue is very similar between the vestibule and bladder. (my vestibular pain is gone since the surgery) Went on Elmiron in fall of 2007 and took eight months to start working so give it time if you get frustrated. Little by little it did help. I never found any foods that triggered my flares. they seemed to come and go as they pleased even when trying to only eat bland. flares now seem to occur right before my period. Doctor said related to bloating and pressure. they also occur when stressed out.
TaraMaria: Does Elmiron make you sleepy? It never made me sleepy even at first. Elavil did but was okay after about a week.
For flares, I usually place warm compress over bladder area or take a warm bath. Helps to relax and destress which can cause more pain. Used to take Urelle when flare but have not needed them in a year or so.
If you do not like your urologist, find a different supportive physician. I do have a urologist but actually my gynecologist is the most supportive and willing to try different things. He put me on the vistaril to help with inflammation.
take care. I always tell myself when I am having a flare, it will get better, i will have better days, it will not be like this always. i know it is hard if you do not have many of them but keep searching for the right medicines/therapy for you.
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Name: Kathleen
Age: 37
How long you've been diagnosed: fall 2007
Meds: Elmiron, Elavil, Vistaril
Weight Loss Goals:125 maintaining, although lately been creeping back up.
Story: I believe I have had symptoms since i was a child, the urgency. Also have vulvar vestibulitis I, which apparently was born with and is autoimmune as opposed to a trauma or secondarily. Did not even know I had the cystitis until had surgery to remove vestibule. My pain remained and doctor said I have IC as well. Apparently, the tissue is very similar between the vestibule and bladder. (my vestibular pain is gone since the surgery) Went on Elmiron in fall of 2007 and took eight months to start working so give it time if you get frustrated. Little by little it did help. I never found any foods that triggered my flares. they seemed to come and go as they pleased even when trying to only eat bland. flares now seem to occur right before my period. Doctor said related to bloating and pressure. they also occur when stressed out.
TaraMaria: Does Elmiron make you sleepy? It never made me sleepy even at first. Elavil did but was okay after about a week.
For flares, I usually place warm compress over bladder area or take a warm bath. Helps to relax and destress which can cause more pain. Used to take Urelle when flare but have not needed them in a year or so.
If you do not like your urologist, find a different supportive physician. I do have a urologist but actually my gynecologist is the most supportive and willing to try different things. He put me on the vistaril to help with inflammation.
take care. I always tell myself when I am having a flare, it will get better, i will have better days, it will not be like this always. i know it is hard if you do not have many of them but keep searching for the right medicines/therapy for you.
Kath,
I was diagnosed with VV 3 years ago. My doctor did NOTHING about it. He never mentioned a surgery or anything like that. I would love to be free of the pain that it brings me. I finally have a new OB/GYN, but he doesn't really acknowledge the past diagnosis of VV. I know its what I have because, well...its obvious! LOL! I was told mine was autoimmune as well...I've dealt with the pain of it for YEARS.
Elmiron tends to make me feel like I'm on chemo the first couple of weeks I start. I adjust after a while and this second bout on it has been better then the first. Has anyone noticed hair loss on it? I did. I got the sore throat too...
I'm very curious about the Vistaril...I've never heard about it before! I'm not sure what to do. I love my urologist but he is SO heavily booked its ridiculous. My OB acknowledges the pain I'm in and he is AMAZING but he is all about a natural approach. I am too but I've been in pain with the VV for years and years and years. My husband and I have for sure suffered because of it (in the bedroom:blushing:) Things have gotten amazingly better because of my OB, but no where at all where I imagine they should be!) 0 -
I had my surgery after visiting Dr. Andrew Goldstein in Wash DC. He specializes in vulvovaginal disorders. Check out his website: www.ourgyn.com
He actually told me that 95% of women with vaginal pain will not be a candidate for this surgery but only those that have the primary VVI. Luckily, i guess, I was one of those and the surgery, although it was a difficult recovery, was worth it!0 -
Thanks for the website hunny! I will have to check that out. I'm not sure what the difference is, all I know is that doctors in my area are NOT educated enough in the area about it. I've had issues since I was a teenager. Even riding a bike was an issue for me. I really appreciate the website.) 0
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Yeah, and it is apparently a really delicate surgery so do not trust just anyone to do it.0
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