Interstitial Cystitis?

[camas]

That's great news, kerrilyn. Hope you have continued success with your IC diet!

 

[Frankie Dene]

Yes do keep it up - I've found that if I'm really good that I can eventually cope with a little of what in the past made me worse. so if I go out I can have a bit of chocolate or tomatoes - as long as I keep off them normally. Coffee is one I really missed but have found I can have a one shot, decaf latte with no ill effects as long as I keep off other things I shouldn't have.
good luck - it is great when it goes! and you aren't for ever conscious that it is there.

 

[helsbells]

Frankie coffee was the one I really missed and I still very much have IC but I can drink coffee now :victory: so there is some hope. I certainly can't drink tea, fruit juices etc but bizarrely and wonderfully after about 5 yars can drink coffee. I started with a small shot in cream and after food - both things will slow down metabolism and even now I do try to eat something before the drink, Now I drink full blooded capuccinos, as I have have a lot of dietry restrictions generally this is actually a reason to get out of bed in a morning. I do take Klonopin every other night and I do wonder if this helps some but also can cope with a bit of tomato or chocolate. A lot of people on the ICN boards swear by MSM too but I couldn't tolerate it for other reasons.

Great news kerrilyn :victory: it really is the most miserable pain imaginable

 

[Min]

My IC has been made about 100 times worse by an idiotic doctor who stretched my bladder (hydrodistension) to 'cure' it - ever since the pain has been incredible & stops me sleeping - no painkiller touches it

 

[helsbells]

My IC has been made about 100 times worse by an idiotic doctor who stretched my bladder (hydrodistension) to 'cure' it - ever since the pain has been incredible & stops me sleeping - no painkiller touches it

Min that is awful, I am so sorry for you because I really understand this pain and unless you have had it you just can't imagine (and I get lots of different types of pain) At its worst I was rocking in the corner with it. I almost had the bladder stretch but got warned off in time so only ever got to cystocopy stage - by that time I just clicked as desperate as I was everything that seemed to help others made me worse and then I heard from a couple of other non ME ICers who had been made worse and cancelled the day before I was due to go in! How long ago was this? Clonazepam was the only thing that helped my pain but obviously that has its downsides too.

 

[leela]

min, that's just terrible...i'm so sorry to hear that. maybe it sounds silly, but have you tried kava kava? three squirts of tincture can often work really well for bladder pain,
and it also helps nicely for sleeping.

 

[Min]

Thanks leela - this may be a very silly question, but where exactly is the kava kava to be squirted?

What a good thing you cancelled that op helsbells, it's a barbaric procedure. I hope your pain levels are not so bad now.

The idiot that stretched my bladder spent the next two years offering me another stretch and insisting that all my symptoms including bright red urine, were in my head ( I had a stonking great kidney stone that the incompetent twit didn't find, probably because he was confused by the startling physical similarities of the urinary tract and the head! Bet I'm the only person ever to be offered antidepressants to cure a kidney stone.). I think a plumber would have been more competent.

 

[helsbells]

What a good thing you cancelled that op helsbells, it's a barbaric procedure. I hope your pain levels are not so bad now.

Much better thank-you i still very much have IC/vulvodynia but not as bleak as it once was - I can't say the say for the rest of me LOL

I think a plumber would have been more competent

the scary thing is I believe you

 

[leela]

heehee, i guess i could have been clearer..oral administration is the way to go with kava tincture
perhaps the doctor that thought you had an imaginary urinary disorder forgot that he was an imaginary doctor.
he should go play in the sandbox now, with his other imaginary friends.

 

[Min]

Glad things are not as bleak helsbells

thanks leela, it did have me wondering - will look into kava kava

 

[kerrilyn]

Min, I'm sorry you went through that procedure and it caused even more problems. Sounds horrible.

I think one of the reason I didn't think I have urgency/frequency problems is because I don't drink enough fluids to begin with, I am likely dehydrated most of the time. It's possible subconsciously that I've been avoiding fluid intake to prevent running to the bathroom all the time. I had a tilt table test yesterday (((that was no fun!!!))) and the doc was really on me about such little fluid intake and how that will make dysautonomia worse. Today I've been drinking water, running to the bathroom and 5 mins later I have to go again.

I did get in a few small pieces of tomato the other night, at a restaurant, and didn't have pain. So far so good.

 

[*GG*]

would LDN possibly help with this?

 

[helsbells]

Min, I'm sorry you went through that procedure and it caused even more problems. Sounds horrible.

I think one of the reason I didn't think I have urgency/frequency problems is because I don't drink enough fluids to begin with, I am likely dehydrated most of the time. It's possible subconsciously that I've been avoiding fluid intake to prevent running to the bathroom all the time. I had a tilt table test yesterday (((that was no fun!!!))) and the doc was really on me about such little fluid intake and how that will make dysautonomia worse. Today I've been drinking water, running to the bathroom and 5 mins later I have to go again.

I did get in a few small pieces of tomato the other night, at a restaurant, and didn't have pain. So far so good.

the urologist (knowing nothing about ME/CFS etc) told me this was a common problemn for Icers who do indeed moderate their fluid intake. i have noticed this as i am drinking increased fluid, salt and recup and have deffinately noticed the increase in symptoms again from this. At my worst i used to get up about 8 times a night, we are not back to that yet but deffinately 4 plus times. Interesting comment about the LDN my neuro/gastro asked me if LDN had helped the IC.

 

[kerrilyn]

I might have misread this vitamin C comment. But if it meant it worsens your symptoms, try
buffered vitamin C it made all the difference in the world for me.

Does it have to be Vitamin C without citrus bioflavonoids? I've read bioflavonoids are good, but citrus and rose hips are not, so I guess you want a buffered vit c without them?

 

[helsbells]

I take it Solgar Calcium ascorbate providing buffered vit C. I don't take it very regularly as I struggle to tolerate vit C but this one doesn't hurt my bladder I just struggle for reasons of general intolerances.

 

[caroljean]

I have interstitial cystitis which was diagnosed by a urologist using a cystoscope to find the lesions inside the bladder. I suffer much from frequency along with pain. I was going every 3 months for a surgical procedure that inserts Chlorapactin into the bladder to fight the inflammation. It did help, but unfortunately I came down with an infection each time. Having CFS/Fibro complicates things, that's for sure. Recently I have been trying some herbs--marshmallow root and licorice root which are supposed to help soothe the tissues in your body. It's too early to tell, but I'm all for trying some natural things. Tired of conventional treatments that come with complications because of the CFS. I have really cleaned up my diet also.

 

[Hip]

I discovered that the herb Ruta graveolens (herb of grace) significantly improved my overactive bladder symptoms (which is very similar to IC). In fact, even when I stopped taking Ruta graveolens, the big improvements that this herb made in my overactive bladder symptoms still remained for months, which I found interesting.

Ruta graveolens has both anti-microbial and anti-inflammatory properties, and either of these may be the reason why it worked for me. Leonardo da Vinci praised this herb, and said it enhanced his eyesight, and also his creative inner vision.

Note that Ruta graveolens should not be used during pregnancy due to the risk of miscarriage.