topic Re: Interstitial cystitis in Wellness

Interstitial cystitis

DMM05 — Tue, 05 Jan 2016 22:00:50 GMT

Hi. Wanted to take a chance here on this board to see if anyone or if you know of anyone that was or has been diagnosed with interstitial cystitis and what they are taking to help this disease. Any comments or ideas would be appreciated.Thanks.

Re: Interstitial cystitis

Hearts4Me — Tue, 05 Jan 2016 22:54:43 GMT

Yes, yes, yes. Sadly I have this horrid condition. I was diagnosed way back in 1990. It's beyond awful and has negatively affected my life considerably. I have been in a major flareup for the last 18 months and am up literally (no joke) anywhere from 7-9 times per night heading to the bathroom.

I am so sorry if you were diagnosed with this....hopefully they were wrong because it's truly life changing.

Re: Interstitial cystitis

sydsgma1 — Tue, 05 Jan 2016 23:00:14 GMT

Yes,mi suffered with ic for many years. I took the ultimate resolution and had my bladder removed...I have been pain free for the last 20 years and never regretted my decision.,I living with a bag has not impaired my life in any way.

Check to see if the Interstitial Society is still in existence. It was a great resource for me back in the day. If you google ic, you might find some support groups.

((((((hugs))))

Re: Interstitial cystitis

DMM05 — Wed, 06 Jan 2016 00:57:16 GMT

I was diagnosed back around 1998 and it is a horrible disease to deal with. Mine has been flared up since last year and nothing seems to work. The only thing that seemed to work fairly well for a long time was cymbalta. Then our insurance company never heard of using this medication for this disease and they wouldn't pay for it anymore so had to quite using it. What upsets me is it is hardly ever talked about like other diseases. It is like I said before a horrible disease to live it. It interferes with all aspects of your life. Thanks for replying to this.

Re: Interstitial cystitis

Toppers — Wed, 06 Jan 2016 04:19:17 GMT

@DMM05 wrote:
Hi. Wanted to take a chance here on this board to see if anyone or if you know of anyone that was or has been diagnosed with interstitial cystitis and what they are taking to help this disease. Any comments or ideas would be appreciated.Thanks.

Yes, it's a horrible condition to have.

I have been dealing with it for a very long time, too.

I have been taking medications for other health conditions, that have also been helping my bladder indirectly. I have always had a more mild case of it.

I am sure you already know this, but if I were you, I would talk to your doctor about it, to see what available treatments are out there for you to try.

I am sorry that you are in such discomfort from it. I do understand.

Re: Interstitial cystitis

Big Sister — Wed, 06 Jan 2016 10:16:38 GMT

I sympathize with you who have this condition. A good friend of mine has been dealing with this for about one year. If she eats chocolate or drinks wine she has a flareup.

Do you notice it is worse with certain foods?

Re: Interstitial cystitis

Shelbelle — Wed, 06 Jan 2016 14:17:40 GMT

My coworker was just telling me yesterday about her friend who has this, she had a pacemaker put in there, seems to have worked.

Re: Interstitial cystitis

hondagirl — Wed, 06 Jan 2016 15:36:28 GMT

It's worth checking this out. A friend of mine has this condition and went to a nutritionist and was told to go on a low oxalate diet. She started to check on all the foods that was on the list of high oxalates and found much relief eating from the low oxalate list... So many foods irritate our systems...

Re: Interstitial cystitis

twinkies — Wed, 06 Jan 2016 17:18:32 GMT

I don't know if this will help you but it helps me alot , I take 1000 mgs of pumpkin seed oil twice a day . One in the morning[1000mg ea, capsules]

after breakfast and in evening after with supper and this seems to help me . I also take cymbalta

cathy from ma

Re: Interstitial cystitis

kaney — Wed, 06 Jan 2016 17:27:29 GMT

I was diagnosed 7 years ago. My doctors prescribed Elmiron, which helps greatly. Although it's expensive, I rarely have a flare, and my trips to the bathroom have decreased. I hope you find relief too.

Re: Interstitial cystitis

twinkies — Wed, 06 Jan 2016 17:28:14 GMT

Just as a note , Pumpkin seed oil has been known to heal the muscles of the bladder and strethen them and heal inflamed tissue . yes you must take it every day , Be oatient give it a week or two to see if it helps the urgency to go ,

cathy from ma

Re: Interstitial cystitis

Stray — Sat, 09 Jan 2016 00:32:17 GMT

I was suffering for a long time but finally referred to a fabulous young physician who has her boards in neurology, urology, OB/Gyn and Internal Medicine. I have so much better quality to my life now. I think it's important to be with the correct doctor with appropriate credentials. It really is trial and error, food, meds, physical therapy, nerve blocks, installations and new devices. It is a rough diagnosis but as said, critical to be with the right doctor. I feel really great and for quite a while.

Re: Interstitial cystitis

pupwhipped — Sat, 09 Jan 2016 16:24:27 GMT

Just curious, to those of you who have this, how were you diagnosed? Did you have a cystoscopy and bladder biopsy? Or were there other tests you had to diagnose this disease?

Thanks for any replies.

Re: Interstitial cystitis

Toppers — Sat, 09 Jan 2016 17:40:26 GMT

@pupwhipped wrote:
Just curious, to those of you who have this, how were you diagnosed? Did you have a cystoscopy and bladder biopsy? Or were there other tests you had to diagnose this disease?

Thanks for any replies.

I had a cystoscopy, and another test to check my kidneys/kidney function.

As I recall, the bladder scope looks at the bladder. I also had a test that checks to see how much fluid the bladder can hold before it feels the need to "void."