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Anyone else have Interstitial Cystitis??

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Posted 1/15/2013 5:35 PM (GMT 0)
It is so annoying and I'm sooooo SICK TO DEATH OF IT!! mad It's one of the more intolerable symptoms I have--the constant feeling that I have a UTI. There is seemingly no relief. The only time I got relief is when I was on heavy abx but I had to come off because it caused me hearing loss in one ear. I've been doing herbals ever since which is easier on my body but has given me no relief for the IC. I'm at a loss. I don't want to see a urologist because all they will do is more useless, painful tests when there isn't a know cure for IC anyway. It's not bladder cancer because bladder cancer only has blood in the urine--no pain. I don't have that.

I'm at my wits end. I feel like I say that every week. tongue But I mean it today. I can make it through the fatigue, the burning skin, the brain fog. THis is relentless and ruins any chance of feeling normal. I'm so sick of it.

Sorry to be a whiner and complain. I know everyone is sick of this. I just don't want to overwhelm my poor hubby with my constant complaints. Hope you all don't mind! tongue
Posted 1/15/2013 5:36 PM (GMT 0)
Sometimes, I feel like drinking myself into a stupor. I really do. I know it sounds childish and immature. I don't drink alcohol, but sometimes I'd really like a vacation from this insanity. I'd probably do it, but I know I'll suffer for it the next day so it's not worth it.
Posted 1/15/2013 5:46 PM (GMT 0)
Hihi Shabychic, that's what I told a friend several times lately, really!. I just want to get drunk to relax for once, or eat pancakes or cake with an additive... (I hope this post won't be censured). BUT: I'll get an allergic reaction to the alcohol, that'll be a no-go, so will the other thing... your last post made me laugh out loud, although it's tragic... sorry...
Posted 1/15/2013 5:47 PM (GMT 0)
Have you tried drinking loads of Cranberry juice?

You need the pure organic sort,my daughter has suffered from this complaint in the past and has been advised to drink at least 2 litres a day.

It's a very old fashioned remedy but it works for her.

Tickled
Posted 1/15/2013 5:54 PM (GMT 0)
Tickledpink is right, cranberry works really quick, you can drink it or take it in capsules. Goldenrod helps keeping the urinary tract clean. Have you tried one of these?

Post Edited (MarieLS) : 1/15/2013 11:03:23 AM (GMT-7)

Posted 1/15/2013 7:01 PM (GMT 0)
Wow, Tickled! 2 litres a day of Cranberry juice?? Holy smokes. I have in the past drank alot of sugarfree organic cranberry juice and it didn't seem to help much. I later read that they think the reason it works is just because it changes the acidity of the urine. But, since I'm already trying to stay alkaline, drinking PH water, watching my diet in all the usual ways, I figured the cranberry juice may not make that much difference relatively speaking.
MarieLS, never heard of Goldenrod, though. Hmm.. I will try that. Can't hurt at this point!
Posted 1/15/2013 7:04 PM (GMT 0)
Yes, I have this...again...didn't know it was from Lyme. There is a concentrated cranberry that I get. It is really expensive. $18/bottle but it has no sugar and you just use like an ounce then fill up a glass with water. In the summer I had a bad UTI - I thought the Bactrim was killing me so I stopped using that and just drank the cran-water. I'll let you know when I get home.
Posted 1/15/2013 10:57 PM (GMT 0)
Hey Shabychic,

I had that, and boy was it painful. I was sitting in the tub for hours to try and relieve the pain. Here's the trick... No cranberry Juice!!!! None. I was under the same notion, but cranberry juice, because of the acid, actually inflames the bladder more and can cause cracks in the lining. Cranberry is excellent for the bladder when there is an infection.. not with Interstitial Cystitis. I used Azo, that took the edge off, but what really did it was diet. Acid is not your friend with Interstitial Cystitis, eliminate it, no coffee either. The best thing for it naturally is cantaloupe.,,yes cantaloupe! I know there is a lot of sure in it, but it is excellent for calming the inflamation in the bladder.. I heard also watermelon, and tried it, but nothing worked as well as the cantaloupe. I ate half to one a day, until syptoms resided.

http://www.ic-diet.com/IC%20Diet%20and%20Food%20List.html

This is a link to foods that are safe, which work for some, and which to avoid.

Hope it helps. It was a couple days of cantaloupe for me and my pain subsided.. Just stay away from cranberry...

Samantha
Posted 1/16/2013 1:44 AM (GMT 0)
Thanks everyone! I appreciate your input!

Wow, Samantha, I've never heard that before but I am sure as heck going to try it! I am eating the cleanest I've ever eaten, no coffee for 7 mos. now, I am completely of dairy, gluten, no alcohol and the only 'sugar' I eat is in the form of honey or xylitol. My doctor did kinesiology and said those two sweeteners were ok for me, but that's it. And I only have very limited amounts. I am thinking that my vitamin C supplement may be too harsh and that is what is causing this flare. I just don't know. But I am going to try cantaloupe even tho I'm not supposed to eat it and see if it helps. I'm bordering on desperation here... Like taking pain pill desperation... smhair
Posted 1/16/2013 3:12 AM (GMT 0)
I was told to stay away from vitamin c as well when I had the flare up.. Acid is your bladder's enemy right now..lol
Posted 1/16/2013 6:48 AM (GMT 0)
Well, thanks Sam.

I stand corrected!

You learm something new every day here,it's just difficult to retain all the information sometimes!

Tickled
Posted 1/16/2013 7:14 AM (GMT 0)
Have had IC for a few years. I do have a urologist and he's been a lifesaver!! He did some pelvic floor injections for me that we're wonderful. He also has me going to a pelvic floor therapist. That by far is the best thing I could have ever done for my bladder!!! You might wnt to give that a try. I've been where you are right now. It STINKS!!!

No cranberry in my diet. Was told that's a huge no no for IC sufferers. Azo does help. Also so do Valium suppositories that you use vaginally. Your pelvic floor can really contribute a LOT to all IC symptoms. It would be worth getting checked out. Feel better soon!!
Posted 1/16/2013 11:18 AM (GMT 0)
Nal, I've always stayed away from urologists because I was told they would do a bunch of useless, painful procedures that wouldn't actual cure the IC, just make it worse because it's actually Bartonella/Lyme infecting my bladder. It never occurred to me that they could actually help get me out of pain! LOL I may ask for a referral after all.

Lymer, my first LLMD diagnosed me with it. I had a bladder infection in May that felt like it never went a away, yet all my cultures/broths kept coming back negative. I never went to see a urologist because my doctor that had IC herself said they do things like inject solutions into the bladder which cause scar tissue that the bugs hide behind and that you'll never get rid of it then, because you'll be trying to get abx behind scar tissue. There isn't actually a cure for IC, you just deal with the symptoms apparently, so I figured why torture myself if they weren't going to cure it anway? But as Nal pointed out, apparently they can give you injections to help with symptoms--I'm all for that!! LOL Inject away!!
Posted 1/17/2013 3:48 PM (GMT 0)
Hey Shabby -
Sorry to jump in late but I thought I had ICC. I was running to the bathroom every 45 mins to 1 hour for a week. All of my urine tests showed no issues. I ended up at an endocrinologist (for diabetes insipidus), Nephrologist (to rule out kidney disease), and urologist. The urologist quickly evaluated me for ICC and determined that I had pelvic floor dysfunction. It is totally fixable but can cause burning, pain, aching in the bladder. It can lead to frequent urination, bladder incontinence, and the feeling of a constant UTI. I too was sent to PT focused around pelvic health. We have a local group in my area that only works with women on that issue. I did have a bladder scope to make sure that there was no bladder cancer but all was fine.

I'm not sure how old you are but as we age our bladders start to drop and weaken. If you've had kids it ads to the overall stress on the bladder. I am 35 and this started when I was 34. I thought it would never stop. It flared up about the time the lyme was making it's greatest stand in my body (before I knew what lyme was). It was tough but eventually as I treated the lyme and attended the PT, it helped a lot. I can honestly say that the PT didn't fix it, but it gave me tools to figure out how to fix it. I have learned a series of exercises including how to massage my pelvic muscles to release them, how to do my kegels properly to help strengthen and support the pelvic floor and how to simply realign my hips when they are out of whack (I can tell by a slow stream and a general aching in my bladder and feeling that I didn't completely void). My PT is trying to get me to help her submit a case study about how lyme affects the bladder to a medical journal. She feels like she's learned a lot and wants to share with other PTs and urologists how to handle lyme patients and ICC like symptoms.

Do go see a urologist and request Pelvic PT. I bet it will help a ton, and hopefully it will get rid of ICC. From what I've read, many LLMDs believe that if you treat the lyme the ICC will completely disappear. Many believe it's a result of lyme and if you treat lyme, it too will go.
Posted 1/17/2013 5:20 PM (GMT 0)
I have Interstitial Cystitis, I have had it since I was 10 years old and NOBODY could tell me what it was, kept testing me for UTIs...Until I went to an adult urologist who diagnosed me within 10 minutes...apparently it's not something they see in pediatrics. It is so debilitating but I take Elmiron, which over time creates a coating on the inside of the bladder to relieve the pain of the sores on it. For those of you saying that you "had" IC, I don't think it's an illness that goes away. I think once you have it, you always have it. But I could be wrong.
Posted 1/17/2013 5:31 PM (GMT 0)
Justascarf, thanks for your input. I've had two c-sections and I have wondered before if it was a pelvic floor thing. Since at one point when I was on abx I had NO symptoms, I always attributed it to the Lyme attacking the bladder wall. But I definitely think that PT would probably help it as well. One homeopath told me to sit on a tennis ball and roll around on it for 5 min. a day because there is a nerve between the anus and vagina that controls the bladder and that is what he recommends for his IC clients. After I stopped laughing I told him I'd try it, but I never did. Maybe I will until I can get some real answers. Try not to make a mental picture of that though! LOL
Anduncan, that is an awful long time to be going thru this misery! I'm really sorry for you. It could be irritable bladder maybe, but it was an ER doc that first told me of IC. I have read a book by a woman that claims she cured her IC, not much differently than the protocols we use for Lyme. But she says it's possible, but from what I've read, it is a chronic condition with no cure. So I don't know. But I know I'm sick of it.
Posted 1/17/2013 5:44 PM (GMT 0)
Hey Anducan -
How long do you believe you've had lyme? Are you done with treatment? Did your ICC get worse or better or stay the same with your lyme treatment? I'm curious as ICC seems to be a symptom seen in many late stage and chronic lyme patients.

I used to hang out on ICC boards and what I saw was a lot of people all of the sudden having issues that led to a diagnosis of ICC. My issues went on for about 4 months before getting treatment and then lasted another year through treatment. According to my Urologist, she said that there are people who have ICC since childhood but that there is no real test to say if you have ICC (like a blood test). She said she has seen many patients who's bladders look like they have ICC but I live in a lyme area and after referring them to docs to see if they have lyme, many have had lyme treatment and later bladder scopes show no more irritation.

Apparently lyme and candida can live in your bladder and it can cause lots of issues that appear to be similar to ICC. Many of the people I knew on the ICC boards have sought out LLMDs to get evaluated and eventually treated for Lyme and have found the ICC symptoms after 10+ years to completely disappear. I agree that if you have ICC it is always there, but I think there are a few other things that present as ICC symptoms and one can be due to lyme. I don't know if your lyme treatment has impacted your ICC at all. I hope for your sake that treating the lyme might help your ICC but I know there are people who have ICC and have to deal with it for life, versus those who have similar symptoms appear and can then treat them in other ways. Good luck!
Posted 1/17/2013 9:19 PM (GMT 0)
I've had IC for 6 years, but was just diagnosed about a year and a half ago. I haven't begun treatment for Lyme, just supplements and trying to kill the yeast and detox right now. I believe I've had Lyme since I was about 6 or seven, hard to guess exactly as I was bitten by ticks on a daily basis (lived in the country and spent most of my time in the woods. I always came home with ticks on me). I lived there from ages 3-7 and my symptoms started around 6 or 7. Yet I've just now started going to an LLMD. I do have a yeast overgrowth in my intestinal tract.
Posted 1/17/2013 9:29 PM (GMT 0)
Anduncan, I just wanted to throw it out there that if you do search for Dr. Fry on this forum it will bring up a an excerpt from an interview with him where he talks about a protozoa he discovered that is common in his Fibro, CFS, MS and RA patients. It is very interesting reading and you may find applies to you since you were bit so many years ago by ticks. I believe his only issue was that he can't prove that the protozoa came before the diagnosis, but it's obvious that it is highly suspect that all of these patients with these chronic diseases have this protozoa. He has already mapped it's DNA and named it. He just needs more money to prove that the protozoa is what in fact caused the disease. Worth the read!
Posted 1/17/2013 9:46 PM (GMT 0)
i have the ICC too. you mentinned that cranberry juice is notgood, what about cranberry pill? do u think i should take d-manose for uti......constant need to go to the bathroom.........so sick of this
Posted 1/17/2013 9:55 PM (GMT 0)
hi vacant! I took d-manose for it once. but i think it's only useful if you have actual bacteria in the bladder to attach to the manose molecule. If you have IC, it's more of an irritation or ulcers of the lining causing the pain which won't be helped by d-manose. At this point, I'm afraid to take anything because I just never know if it's going to be too much for my bladder or not. I took d-manose a little over a month ago because they had in fact found a bacteria after they cultured it for 8 days but it didn't do the trick and it gave me awful stomach cramps! don't take more than is recommended. My doctor told me to take a couple of doses within a 24 hr. period to "hit it hard" and it was a nightmare. I ended up going the abx route anyway just to get rid of it. I was abx for a month which is 2x as long as normal for a UTI so you'd think it would have killed it. Who knows. Always a guessing game...
Posted 1/17/2013 9:56 PM (GMT 0)
Vacant, I had terrible urgency issues and I went on a bladder relaxer, Enablex, which helped tremendously with the urgency and frequency. I don't know about cranberry pills.. but I assume they contain the same acid as in cranberry juice, and might irritate the bladder.
Posted 1/19/2013 3:47 AM (GMT 0)
I have ic. Bladder problems are really my only Lyme symptom. Constant utis, and frequency. I've been dealing with it for about 5 years. Definitely made progress though my bladder isn't 100% better yet. But I've improved a lot and still making progress with the Lyme treatment among others. Feel free to pm me if you'd like. I've done a lot of research related to the bladder/ic.
Posted 7/2/2013 9:50 PM (GMT 0)
twinkl1999,


I have lyme and ic and the bladder pain has been bothering while on treatment for lyme. what has helped you?
Posted 7/3/2013 12:50 PM (GMT 0)
 

I am not sure if I have it or not. I spoke to my gyn. at my annual check-up. The main symptoms I had was bladder irratition and pain, frequency and some incontinence.  The symptoms increased with lyme flare-ups and with herxing.

The doctor felt it was neurologic and due to lyme.  He did tests which showed I had a very large bladder (I won the award of holding more water than anyone he had ever seen). On a follow-up we spoke about the future possibility of surgery that he and a urologist would perform together.  I asked if this would go away with the resolution of lyme and he said no.  We discussed how much the problems were bothering me and concluded to put this on hold for now.

There is an over-the-counter drug which helped my symptoms can't remember the exact name but c.v.s. carries it.

Hope this helps!

Anna

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