Question for Nal re interstitial cystitis

Hi, Nal. I noticed IC mentioned in the list below your signature. Can I ask how long you've had it and what kind of treatments you get for it? I was diagnosed last year about this time and am trying to control it with diet. I had five treatments and they were pretty painful but they worked short-term. She said I shouldn't be on the diet for a long time because it's not very healthy. However, that's the only thing that helps. I wish this site had a forum for IC, but it doesn't, so I've been looking for others with this disease to compare notes with.

I've looked at other forums on the internet and I can't understand all the different treatments others get. My doctor refuses to let me learn to inject my own medicine or let me learn to catheterize myself, and I live 1-1/2 hours away from her, so it's a PITB to go see her. She has the bedside manner of a frog. I only saw her once, then the nurse when I went back for the instillations. She basically told me, "You have interstitial cystitis, read this pamphlet," and left the room. Didn't tell me how bad my particular case is or anything else.

Grrrrr. Thanks for listening and I will appreciate it if you can give me some info.

I am not the person you addressed this to, but I had to chime in with if your diet controls the IC, then stay with that for now.

My mother got harsh, harsh treatments..........I never went that route. I took Macrobid and Pyridium for years. I now have something in the cabinet to control the spasms. (it got so bad with the spasms at one point that it was like giving birth and would release any bathroom control I had.) I avoided things with caffeine tea, pepper and mustard (they were my triggers) I have since added it all back except the tea. 1 glass of reg. tea and I am in so much pain.

If diet can control the pain, that is a lot less harsh on your body that those chemical treatments or taking medications so often. (a lot less expensive and time consuming as well.)

I also avoided baths an switched to a very mild soap. (Right now I am having trouble because I slept for a long catch up nap today and did not drink a lot. Drink filtered water as much as you can stand.)

If you still have menstrual cycles, take a look at the pads that you use. They are breeding grounds for IC trouble. (Also, you might want to look at your spouse/partner........if he is on medications that you are allergic to, it "can" irritate you as well.)

Hello, sorry I just saw this post tonight. First off let me tell you that you can put IC into remission! It took me a long time but I now have fewer and fewer flare ups for which I am thankful

Mine started with a very bad bladder infection in 2000 and 9. We thought we had clear the infection but it never seemed to go away . I always felt like I had to go to the bathroom. That has always been my worst symptoms. I tried every medication out there to help control bladder spasms and for me nothing worked.

In 2000 and 10 hsd a sacral nerve implant put into place. It also did nothing for me but increase my symptoms. I had it removed in 2012. I tried bladder injections, Botox injections, just about every injection you could do to the bladder. Nothing worked

Finally I was able to see a doctor who only specializes in I C. He was wonderful! He recommended I look at my diet to see if I could find any triggers. It took me a long time but I realized that gluten, tomatoes and onions were huge triggers in my diet. One other thing I was told to change was to stop using a Brita water filter! That's one really surprised me. I was told that the PH balance in that water was not acceptable to those with bladder problems. By then switched to a King Soopers brand of bottled water it helped a lot

Finally I was referred a pelvic floor therapist who specialized in working with people who have I C. She has been amazing! These therapists are found in most states and I strongly encourage you to find one. Most are covered by insurance.

I also use valium suppositories if I do have a flare up and they help a lot. I also use a product similar 2 azo that has phenazopyridine hydrochloride 95 mg in it. This also helps me

Finally I highly recommend you check out the IC network on line. That's website has helped me a lot. You can also schedule a phone consultation with the lady who runs that network who has a lot of experience with I C

I hope that helps some? Please feel free to ask me anything you would like regarding this awful syndrome. What type of symptoms do you have? Also if you ever suspect it might be a bladder infection always get those tested

bwfm said...
Pelagicdancer, how did you find out about kava root? Sounds interesting, but I'm a little afraid of the side effects, and I do take some of the meds that are listed as contradictory if taking kava root. I'd like to know more, though, if you don't mind.

It was actually accidental - I took some kava root for another reason and noticed that my IC pain was way better. I then Googled it and found out that it was a common remedy for IC.

Which side effects are you concerned about? The amount that I took was quite small, not enough for me to notice any side effects. It is used recreationally/socially (and ceremonially) on South Pacific Islands but that is in much larger quantities made into a beverage - I have taken kava that way too so I know what it feels like and I didn't get those effects from taking a couple capsules. But we all have different sensitivities and different suppliers may be different.

If you are referring to the claim that it might be harmful to the liver, that is very disputed. A small number of alleged liver toxicity cases surfaced in Europe back in 2001. So some countries issued a stop-sale order on kava until safety assessments could be done. Researchers have concluded it was due to improper parts of the kava plant (leaves and stems) being used to manufacture products - there are some potentially toxic alkaloids found in the leaves/stems that are not found in the root. In addition, the people in the case reports were using other drugs and alcohol as well. Traditionally kava is only used as the root, but around 2000-2001 the demand for kava extracts was skyrocketing in Europe and one or more pharmaceutical companies looking to profit used entire plants for their products instead of just the roots. Other researchers suggested that the use of certain chemicals in some extracts might also have been to blame. I can't help but assume that producers are being more careful since then.

Compare it to something like Tylenol, which causes around 30,000 hospitalizations and 500 deaths due to liver failure per year in the US alone. Whereas last I read, kava had 93 possible hospitalizations and 7 possible deaths world-wide - ever, not per year. Of the 93 case reports, only 8 cases were determined to have a close association between the use of kava and liver dysfunction. The other cases could not be fully assessed due to insufficient data or other potential causes of liver damage.

So I am really not worried about it myself :). I do think it's a good idea to get it from a quality source though and get root or capsules as opposed to a liquid extract.

As for drug interactions, may I ask what drugs you take? And do you have a health care practitioner who would be knowledgable about the subject?

Most drug interactions are just that it might increase drowsiness if you take it with something else that can also cause drowsiness. There is also, as with nearly any herb, the potential that it might increase or decrease the metabolism of a drug. Myself I only noticed drug interactions when I took a lot of kava, like if I drank cups of the traditional beverage as opposed to just swallowing a couple capsules for my IC. The only potentially serious interactions listed are alcohol, leflunomide, lomitapide, mipomersen, and teriflunomide. It is because these drugs are known to potentially cause major liver damage and so because of the possibility that kava might be hard on the liver as well it has been recommended that people not take them together. I can tell you about the interactions with specific drugs if you want, I have taken it with opioids, antidepressants, gabapentin, benzodiazepines etc, so I can tell you my experiences if you want. Of course it's best to consult a health care practitioner who is aware of your health conditions and everything you are taking AND is knowledgeable about plant medicines before starting any new herb or supplement.

I just think the fact that the kava seemed to have actually cured my IC as opposed to being something I had to take forever is pretty amazing.