topic Re: IC..SO PAINFUL in Wellness

IC..SO PAINFUL

forestview — Fri, 15 Aug 2014 23:29:27 GMT

Is there anyone who knows of a way to stop the awful pain? I have always been told there is no cure. The doctor wants to start bladder installations. Even percocet does not help.

Re: IC..SO PAINFUL

lolakimono — Sat, 16 Aug 2014 00:00:31 GMT

Do you take anything as a preventive, like D. Mannose?

Re: IC..SO PAINFUL

trixielarue — Sat, 16 Aug 2014 00:15:55 GMT

Hi Forestview. I have never posted on the QVC community before but I saw your inquiry regarding IC and just had to respond. I am familiar with this ailment because my daughter came down with this about a year and a half ago and through all of our research and input from a variety of doctors we came across the successful use of aloe vera to relieve the symptoms either completely or at least to a great degree. Specifically a very high potency aloe vera capsule made by a company called Desert Harvest. In fact, they are the first company to do actual clinical trials using high potency, high quality aloe vera capsules to verify that that form of aloe vera actually does give great relief with IC! My daughter was desperate and she started on them exactly as directed and she did find good relief although it does take a little time for the system to get saturated with the aloe and obviously it takes some bodies a little longer than others to begin to see results. But stick with it. Go to their website, desertharvest.com and you will find they have tons of research and resources specifically on IC as well as many testimonials from people who have been desperate for relief. There is some good feedback on the installations that the medical community offers to IC sufferers as well. They offer it because it is really all they have to offer but their effectiveness is questionable at best. Desert Harvest is so focused on helping people specifically with IC that they have customer service reps there to assist you who they themselves have struggled with IC. It was such a relief to find a place that had so much info and experience with IC since it is kind of a mystery what causes it and so many people are told they just have to live with it and suffer. Also in our research we found that acid neutralizing in the diet is very important and she also took an acid neutralizer before each meal and before acidic beverages. It is called Prelief and you can get it in most any of the local drug stores in your area or you can order it on Amazon if you can't find it locally. If you can get the Prelief and start on it immediately that may begin to give you some relief while you wait for your order of aloe from Desert Harvest if you decide to go that route. I hope this helps because I know the pain and suffering can is unimaginable until you experience i first hand. As a note of encourgaemnt, my daughter rarely if ever has any flare ups now at all so IC can get better over time and the body can even heal itself as time goes on with the right treatments.

Re: IC..SO PAINFUL

PalmTree11 — Sat, 16 Aug 2014 00:19:56 GMT

I had to open this thread. I was just diagnosed with IC a few weeks ago during surgery for endometriosis. I had a great doc who also did the bladder scope and found IC. I haven't had my post-op yet, so I haven't started prescription medication, but I will definitely check out the Desert Harvest aloe. I really don't know much about IC since I was just diagnosed.

Re: IC..SO PAINFUL

Daysdee — Sat, 16 Aug 2014 00:25:14 GMT

Sorry, but I'm not aware of what IC is. I have some issues, but don't know if that is the correct name.

Re: IC..SO PAINFUL

lolakimono — Sat, 16 Aug 2014 00:26:38 GMT

On 8/15/2014 Daysdee said:
Sorry, but I'm not aware of what IC is. I have some issues, but don't know if that is the correct name.

interstitial cystitis

Re: IC..SO PAINFUL

GSPgirl — Sat, 16 Aug 2014 00:31:17 GMT

Please, please call your nearest pelvic pain clinic and pelvic physical therapist. There is no cure, but a pelvic physical therapist can help you relieve pain. They have to be Pelvic physical therapists. That's all they do is help woman and men with pelvic conditions. I am so glad you posted this. Good luck. Depending on what state you live in, you can go directly to a pelvic PT without a referral. What state do you live in?

Re: IC..SO PAINFUL

forestview — Sat, 16 Aug 2014 01:44:08 GMT

I ordered the aloe Vera. I would pay almost anything to get relief. I never go out anymore..to top it off I have a uti which is not responding to antibiotics. THANK YOU for suggestions.

I have been to a top pelvic pain specialist..also had the physical therapy with no results. He wanted to inject Botox..results would only last 3 months.

I feel so miserable that DH is getting the wrath of my anger and depression.

Re: IC..SO PAINFUL

forestview — Sat, 16 Aug 2014 01:47:39 GMT

By the way I live in AZ..went to top chronic pelvic pain dr at St Joseph hospital.

Re: IC..SO PAINFUL

Daysdee — Sat, 16 Aug 2014 02:26:01 GMT

On 8/15/2014 lolakimono said:
On 8/15/2014 Daysdee said:
Sorry, but I'm not aware of what IC is. I have some issues, but don't know if that is the correct name.

interstitial cystitis

Thank you for that information.

Re: IC..SO PAINFUL

ThinkOutsidetheBox — Sat, 16 Aug 2014 02:52:28 GMT

Forestview.....get d-mannose as well. I have not had to take an antibiotic for a bladder infection in fifteen years. Long story cut down....the bacteria that cause 90 percent of all bladder infections LOVE D-Mannose. When you ingest D-Mannose and it floats by the bacteria in the kidney, bladder and/or urethra, the little bacteria can NOT resist. They release their hold in the walls of whatever they are infecting, grab on to the D-Mannose, and are carried right out of the body. Watch what brand you get. I tried NOW's once and it doesn't work well. I always order the Solaray or Vitacost brands. I initially take 4 capsules every four hours the first day, then two every four hours for two more days (or as close to every four hours as I can get). After that first three days, take as directed on the bottle for another four day (so a full week on it). If you have constant UTI issues, take one or two capsules daily on a long-term basis. Remember, every four hours on the first day is very important, and drink plenty of water. Restrict your sugar severely while you are trying to use the D-Mannose too. And ladies, even if you do not have chronic UTI issues, taking two D-Mannose capsules before or just after intimate relations will keep the doctor away too.

Re: IC..SO PAINFUL

tuscaloosa — Sat, 16 Aug 2014 03:22:05 GMT

I hear you. I too suffer from IC. What has helped me the most is patting myself dry after urin ting rather than wiping myself. This is the number 1 thing that has helped me. Also, I was prescribed estrogen cream, which makes the sore area calmer and stronger to resist infection. I give my underwear two rinses - plus no fabric softener allowed. The toilet paper I use is white and unscented. I love iced tea, but too much gives me problems along with orange juice and lemonade. I guess you know that soft drinks are a problem. I find root beer the least toxic.

Another great tip: I drink Braggs vinegar and water when I am having symptoms and it really helps with the pain. A couple of tablespoons in water. Sometimes I have more than one glass.

My grandmother used to take a little bit of baking soda at night to prevent problems. Whatever works.

Re: IC..SO PAINFUL

Mj57 — Sun, 17 Aug 2014 21:17:21 GMT

I have had IC for a lot of years. I feel mine was caused at birth of my first son. I take Elmiron, hydroxyzine, at times a numbing pill, I have PFD also my Dr. Finally gave me a small insert of estrogen which helps a lot with PFD mostly. I can't take estrogen since I had a blood clot but this is Minimal. At times I take tramadol. It's a very depressing disease. It to me is worse than my arthritis and migraines. I was doing well but lately been in a flare that I'm trying to get control of. I also do youtube guided meditations they help me feel better if only for awhile.

Re: IC..SO PAINFUL

happygolfcartrider — Sun, 17 Aug 2014 21:32:19 GMT

I had IC before anyone knew what it was. I suffered for at least 20 years drinking gallons of cranberry juice thinking that was the right thing to do for bladder infections and cystitis. Actually ANYTHING with vitamin C is the wrong thing do for IC.

I read an article over 20 years ago about a Dr. that was studying IC, I begged my Dr. to do the test he suggested to see of that was what was causing my pain. He did and said yes I had IC. I asked him to loo back and see that I had asked him about IC ten years prior and he dismissed me. ( It was not a recognized disease at the time) He said yes I had talked to him about it 10 years prior. Anyway he prescribed Elmiron and Nitrofur mac and I have been basically pain free for 20 years.

Anyone with IC should stay away from vitamin C....It triggers attacks. I have been able to have fruit in juice smoothies lately and have had no pain so the Elmiron has evidently done its job. Thank God! I steer clear of ALL vitamins that have Vitamin C and do not drink acidic juices at all. Acid and IC do not go well together.

For those that do not know what IC is...The normal bladder on the inside is smooth, the bladder of an IC person is corroded and that is why acids cause pain.