There needs to be more research to find a cure. IC is debilitating and misunderstood by so many people. Thank you Jill Osborne for the support and education you provide.
Better Bladder Book by Wendy Cohan changed my life. Within two days of being Gluten free, beef free, low sugar, and lactose free dairy I’m pain free. Just eliminating gluten made a complete difference. I take herbal supplements, teas, see a Pelvic therapist, and remain as stress free as possible. With this whole body approach I’m only using the bathroom every 2.5-3.5 hours, I’m also only waking up most nights once to use the bathroom. This book was a complete game changer for me.
IC is horrible!! I have had it now for 4 years and finally I’m somewhat under control. I take Elmiron, Gabapentin, Amitriptyline and Pyridium daily. I finally found the doctor who has me under control. I get a cystoscopy with hydrodistention every 4-6 months which help so much. But knowing that I will have to have these for the rest of my life is depressing. When it gets really bad like now waiting for my procedure on November 22, I have to take oxycodone as needed mostly at night because I work during the day. It really has affected my life so much. I understand everyone who has it. There are times where I pee and visible blood comes out. My last procedure I had to get hunner’s ulcers burned and now I just have glomerulerations everywhere which causes me to have blood in my urine. The best way I can describe it is feeling like having a UTI but 50 times worse everyday sometimes.
one query 5 years back i suddently developed frequency to urinate, its like having constant urge to urinate , 1st doctor thought it was urethral stricture , but symptoms were back after surgery , i thought cause as due to blockage in my urethra ,, when i met 2 nd doctor they did cystoscopy , but found like my muscles are not opening properly to urinate out ward , is it related to IC
linda shea I only take 25mg at night. My medication regimen has really worked for the last year or so. The Elmiron I believe is what has helped the most. I just had hydrodistenstion 2 wks ago and feel no pain. They help but not for long. I’m going to be getting the Interstim implant in beginning of next year. If it is a successful trial I will get the permanent device which lasts for 5-7 years. I recently was put on oxybutynin 3xday. That has helped with the frequency but not as much as I thought. The interstim will.
The last 10-12 years of my life have been controlled by IC. The pain at times is so severe, I just want to put a gun to my head and end it. It affects all parts of my life, from my marriage to socialising with friends and family. I have tried so many different medications and none seem to work. I've tried changing my diets with very little difference. I would love to hear from anyone who's managed to control their IC as I'm willing to try anything. I've been taking Elmiron for the past couple of years, plus strong painkillers but over the past few weeks, the symptoms have got worse. I've seen different urologists and they all seem a little lost as to what's the best course to take. I'm a man and to me, it's the worst pain I've ever experienced when it's at it peak. I would love any advice as I'd rather not go down the route of choosing the ultimate cure!! Thank you.
Martyn I am with you. This IC is so bad, I don’t know how I’m still alive. I’ve lost so much weight and on feeding tube. It’s terrible. I’m on Elmiron and it has helped some but not 100%. I still have weekly flare ups and pain every day. I’m sorry you’ve been dealing with this so long. Are you on Ditropan? That has helped me a lot.
@@lorahindsley8274 hello Lora. Sorry to hear of your suffering. It's such an invasive condition. I've been to see a new urologist and he's been great. I'm continuing with the Elmiron and it seems to be taking affect. I also take a strong anti-inflammatory called Naproxen which helps with the pain. The flares are starting get further apart but when they come back, they're still very severe. A friend of mine who also suffers with IC recommended a teaspoon of bicarbonate of soda in half litre of warm water, followed by half litre plain warm water 20 mins later when you feel a flare coming on. This does help. I wish you all the best and I hope for all IC sufferers, a dynamic cure is discovered soon.
Martyn Thank you, Martyn. I do take an over the counter aid called Prelief which is supposed to work the same as bicarbonate. I have not tried bicarbonate though, so next flare, I will try your tip. Thanks so much and I am so glad Elmiron is working for you. :)
Marshmallow root tea twice a day was a life saver for me. Also no tap water, during flair up drink lots of alkaline water. Also no acidic foods and do pelvic floor yoga ( it's on RUclips for free). Make sure marshmallow root tea organic . I have had this 17 years. It doesn't help the urgency much but helps the burning alot. Good luck
I have it- diagnosed with cystoscopy and the syndrome with migraines, fibromyalgia, chronic fatigue, vulvodynia, nocturia and am mostly completely dysfunctional. Treatments made me worse.
I was diagnosed with IC in the early 90s. My urologist found quite a few lesions in my bladder. He studied and submitted a paper on it. It was rarely diagnosed back then. So I was lucky to have him.
@@monesheity5344 ask your urologist or gynocologist. There is a pill that numbs it. It makes your urine orange, but it works when it hurts. Sorry for your pain 💜
@@monesheity5344 I don't know much about you. Me, I had a son in 85, 2 more in 90 and 91. First was 9lbs3oz. Anyway, I had bladder issues and found out I had a prolapse. I had to have a hysterectomy at 38! My daughter was diagnosed with Ehlers Danlose. I had fibromyalgia, lymes, babesiosis and other issues at the time. Found out a few years ago I have Ehlers Danlose and was born with it. It explains all my issues and can cause a prolapse! See a urologist. I hope you find answers. 🙏💜
I take Oxybutynin and Hydroxyzine. I had to eliminate coffee, citrus fruits, carbonated beverages and alcohol out of my diet. I do pelvic stretch exercises from Physical Therapy. I have had this awful disease for 2 years and it started after my partial hysterectomy. Yes, I felt suicidal and I was in despair. You just have eliminate acidic drinks and foods. Don't give up because they are coming out with newer treatments. So many people have this disease now.
I found a girl. Who basically cured her IC and I been following what she did and I definitely see a huge improvement in one week. Taking black seed oil and try to take 1000mg everyday consistently for as long as you need for your symptoms to go away. She also recommended other oils but that was the main one if your desperate try giving this a try. And be patient following drinking the oil with something like honey or a date. To help with the after taste! Hope this helps
Idk if I have this but some days I would have pain and other days I wouldn't. It can vary from pain and the time I would have it but it usually starts whenever I have to pee or release pee. Sometimes my bladder feels like it's bloated and pressure or very stretched after urinating
I wonder if she was ever tested for pelvic floor dysfunction. The fact that she was hiking she might have irritated her pelvic floor. Even if it is IC the majority of women with IC have pelvic floor dysfunction and she might need pelvic floor therapy to get rid of those remaining symptoms. I hope she is still doing well!
Wow I was diagnosed today. Actually Apparently, I was diagnosed as a child but I never knew that. My mom has been having a lot of memory loss lately. Today those records were found by my doctor and I was diagnosed again. The lady in this video is speaking my exact experience.
I was diagnosed with IC when I was 13, 10 years later it turned out it was actually embedded infection. Symptoms are the same, but doctors will rather give you IC diagnosis than offer long term antibiotics that can cure you🙄
@@ThatPaliRN I had burning in urethra and pressure in my blader. Sometimes, during really bad flares, I would get lower abdominal pain. Burning was extreme, it would spread to my thighs☹ My symptoms would lessen when I drink lots of fluids
I have been taking Aloe Vera along with Elmiron. If I could only have one thing I would take the Aloe Vera over the Elmiron any day. It really has worked for me. I was using Desert Harvest Aloe Vera, and it was great, but honestly, it is so expensive I thought I would give another brand a try. I now use WOW Aloe Vera which you can get off Amazon for 75% less cost than Desert Harverst.
@@rashellegabbidon5226 I am completely healed now. I bought this product with a company called harmony with dmannose and hibiscus flowers. I took two a day. It was only 29 dollars for two months supply
I had to have a cystoscopy for this, I’m not sure what its like for women but for a guy i can honestly thing its the worse experience ive ever had in my life.
Hydration is so very important...the solution to pollution is dilution...We IC sufferers are gonna pee a lot....but, I've found that the more we drink, the more dilute the urine becomes.....don't wait for the pain and decide you need to drink....I drink only water and milk....I've tried lots of herbal teas and pear juice.....but, almost all drinks have ascorbic acid as a color preservative..read all labels, food and drink...if it looks like it's gonna hurt, pass it by.
You shared very good information. My Aunt was suffering from this problem. She was very upset at that time. She went to Planet Ayurveda and started his treatment. Now she is fine. If you have this type of problem or any other type of health problem. You must go to Planet Ayurveda.
Elmirion has now showed to cause eye damage and problems. I see a retina specialist now because of taking Elmirion. It won’t come on right away but it can come on years from now. I had healthy eyes my right eye is the problem now. Watching to make sure I don’t have a retina detachment. Beware.
![Gucci Mane & Sexyy Red - You Don't Love Me [Official Music Video]](http://i.ytimg.com/vi/j7IBqyFKT4c/mqdefault.jpg)
There needs to be more research to find a cure. IC is debilitating and misunderstood by so many people. Thank you Jill Osborne for the support and education you provide.
🙏 We need help please help us to find a cure or better treatments 🙏💙
Better Bladder Book by Wendy Cohan changed my life. Within two days of being Gluten free, beef free, low sugar, and lactose free dairy I’m pain free. Just eliminating gluten made a complete difference. I take herbal supplements, teas, see a Pelvic therapist, and remain as stress free as possible. With this whole body approach I’m only using the bathroom every 2.5-3.5 hours, I’m also only waking up most nights once to use the bathroom. This book was a complete game changer for me.
IC is horrible!! I have had it now for 4 years and finally I’m somewhat under control. I take Elmiron, Gabapentin, Amitriptyline and Pyridium daily. I finally found the doctor who has me under control. I get a cystoscopy with hydrodistention every 4-6 months which help so much. But knowing that I will have to have these for the rest of my life is depressing. When it gets really bad like now waiting for my procedure on November 22, I have to take oxycodone as needed mostly at night because I work during the day. It really has affected my life so much. I understand everyone who has it. There are times where I pee and visible blood comes out. My last procedure I had to get hunner’s ulcers burned and now I just have glomerulerations everywhere which causes me to have blood in my urine. The best way I can describe it is feeling like having a UTI but 50 times worse everyday sometimes.
one query 5 years back i suddently developed frequency to urinate, its like having constant urge to urinate , 1st doctor thought it was urethral stricture , but symptoms were back after surgery , i thought cause as due to blockage in my urethra ,, when i met 2 nd doctor they did cystoscopy , but found like my muscles are not opening properly to urinate out ward , is it related to IC
How many milligrams of amitriptyline do you take a day? Just curious I'm on a 100 mg a day
linda shea I only take 25mg at night. My medication regimen has really worked for the last year or so. The Elmiron I believe is what has helped the most. I just had hydrodistenstion 2 wks ago and feel no pain. They help but not for long. I’m going to be getting the Interstim implant in beginning of next year. If it is a successful trial I will get the permanent device which lasts for 5-7 years. I recently was put on oxybutynin 3xday. That has helped with the frequency but not as much as I thought. The interstim will.
I've be diagnosed with IC it's the most frustrating thing ever..
The last 10-12 years of my life have been controlled by IC. The pain at times is so severe, I just want to put a gun to my head and end it. It affects all parts of my life, from my marriage to socialising with friends and family. I have tried so many different medications and none seem to work. I've tried changing my diets with very little difference.
I would love to hear from anyone who's managed to control their IC as I'm willing to try anything. I've been taking Elmiron for the past couple of years, plus strong painkillers but over the past few weeks, the symptoms have got worse. I've seen different urologists and they all seem a little lost as to what's the best course to take. I'm a man and to me, it's the worst pain I've ever experienced when it's at it peak.
I would love any advice as I'd rather not go down the route of choosing the ultimate cure!! Thank you.
Martyn I am with you. This IC is so bad, I don’t know how I’m still alive. I’ve lost so much weight and on feeding tube. It’s terrible. I’m on Elmiron and it has helped some but not 100%. I still have weekly flare ups and pain every day. I’m sorry you’ve been dealing with this so long. Are you on Ditropan? That has helped me a lot.
@@lorahindsley8274 hello Lora. Sorry to hear of your suffering. It's such an invasive condition. I've been to see a new urologist and he's been great. I'm continuing with the Elmiron and it seems to be taking affect. I also take a strong anti-inflammatory called Naproxen which helps with the pain. The flares are starting get further apart but when they come back, they're still very severe.
A friend of mine who also suffers with IC recommended a teaspoon of bicarbonate of soda in half litre of warm water, followed by half litre plain warm water 20 mins later when you feel a flare coming on. This does help.
I wish you all the best and I hope for all IC sufferers, a dynamic cure is discovered soon.
Martyn Thank you, Martyn. I do take an over the counter aid called Prelief which is supposed to work the same as bicarbonate. I have not tried bicarbonate though, so next flare, I will try your tip. Thanks so much and I am so glad Elmiron is working for you. :)
@@lorahindsley8274 Good luck!
Marshmallow root tea twice a day was a life saver for me. Also no tap water, during flair up drink lots of alkaline water. Also no acidic foods and do pelvic floor yoga ( it's on RUclips for free). Make sure marshmallow root tea organic . I have had this 17 years. It doesn't help the urgency much but helps the burning alot. Good luck
I have it- diagnosed with cystoscopy and the syndrome with migraines, fibromyalgia, chronic fatigue, vulvodynia, nocturia and am mostly completely dysfunctional. Treatments made me worse.
Ive been to 2 specialists and 3 gps with only nil results .. i come on you tube after 25 yrs of pain to find the answer..thankyou
I was diagnosed with IC in the early 90s. My urologist found quite a few lesions in my bladder. He studied and submitted a paper on it. It was rarely diagnosed back then. So I was lucky to have him.
How you cure interstial crystities pls help i am suffering this prblm last 1 year pls help me
@@monesheity5344 ask your urologist or gynocologist. There is a pill that numbs it. It makes your urine orange, but it works when it hurts. Sorry for your pain 💜
How r u now. now u don't have any symptoms after that treatment
@@Fuphyter my symptoms frequently urine small amount. Burning night time more wake up for urine
@@monesheity5344 I don't know much about you. Me, I had a son in 85, 2 more in 90 and 91. First was 9lbs3oz. Anyway, I had bladder issues and found out I had a prolapse. I had to have a hysterectomy at 38! My daughter was diagnosed with Ehlers Danlose. I had fibromyalgia, lymes, babesiosis and other issues at the time. Found out a few years ago I have Ehlers Danlose and was born with it. It explains all my issues and can cause a prolapse! See a urologist. I hope you find answers. 🙏💜
I take Oxybutynin and Hydroxyzine. I had to eliminate coffee, citrus fruits, carbonated beverages and alcohol out of my diet. I do pelvic stretch exercises from Physical Therapy. I have had this awful disease for 2 years and it started after my partial hysterectomy. Yes, I felt suicidal and I was in despair. You just have eliminate acidic drinks and foods. Don't give up because they are coming out with newer treatments. So many people have this disease now.
Helo mam i also suffering interstial crystities last one year I feel very bad I how to cure this prblm pls help me 😭
I found a girl. Who basically cured her IC and I been following what she did and I definitely see a huge improvement in one week. Taking black seed oil and try to take 1000mg everyday consistently for as long as you need for your symptoms to go away. She also recommended other oils but that was the main one if your desperate try giving this a try. And be patient following drinking the oil with something like honey or a date. To help with the after taste! Hope this helps
@Alicia Love www.reddit.com/u/heysecretagentx9? her account
The link doesn't work can u link the oil and where I can get it please
i have a terrible case of ic and bladder stones on top of that im highly considering the indiana pouch surgery i’ve had it since i was 15
This is not at all what IC is for me :/ . I'm glad she fine now , but unrealistic for me.
Idk if I have this but some days I would have pain and other days I wouldn't. It can vary from pain and the time I would have it but it usually starts whenever I have to pee or release pee. Sometimes my bladder feels like it's bloated and pressure or very stretched after urinating
I wonder if she was ever tested for pelvic floor dysfunction. The fact that she was hiking she might have irritated her pelvic floor. Even if it is IC the majority of women with IC have pelvic floor dysfunction and she might need pelvic floor therapy to get rid of those remaining symptoms. I hope she is still doing well!
Lindzo89 Correct. I have them both. And IBS.
Wow I was diagnosed today. Actually Apparently, I was diagnosed as a child but I never knew that. My mom has been having a lot of memory loss lately. Today those records were found by my doctor and I was diagnosed again. The lady in this video is speaking my exact experience.
I agree, it is a ,miserable condition to have
I was diagnosed with IC when I was 13, 10 years later it turned out it was actually embedded infection. Symptoms are the same, but doctors will rather give you IC diagnosis than offer long term antibiotics that can cure you🙄
Can you tell me the symptoms you had?
I'm struggling with this postpartum and for some reason I feel like they may just have it wrong
It seems there’s different type of IC. Some from injury and some from deep embedded infection. Treatment tho....
@@ThatPaliRN I had burning in urethra and pressure in my blader. Sometimes, during really bad flares, I would get lower abdominal pain. Burning was extreme, it would spread to my thighs☹
My symptoms would lessen when I drink lots of fluids
@@jaym.57 It's crazy that in 21st century, we can go to space, but not cure (usually) simple bladder problems
Been suffering from IC for years
I will be having a cystoscopy done next week. Afterwards my dr suggested botox to my bladder. At this point I'll do anything to feel " normal " again
We're wishing you a safe and speedy recovery! ❤️
It just feels like your burning with fire slowly
exactly
Can it be inside the vagina ? Or just the bladder
I have this condition but it only happens when I squirm in my chair too much. So it’s like onset PBS.
I have been taking Aloe Vera along with Elmiron. If I could only have one thing I would take the Aloe Vera over the Elmiron any day. It really has worked for me. I was using Desert Harvest Aloe Vera, and it was great, but honestly, it is so expensive I thought I would give another brand a try. I now use WOW Aloe Vera which you can get off Amazon for 75% less cost than Desert Harverst.
Thanks for sharing what works for you
Look at the amount of aloe in Wow. It's less concentrated than desert harvest, thus the cost difference.
How do you use it?
@@Humanityleft I'm guessing drink it. It's also good for heart burn when taken regularly
Been dealing with this for six months
Me too.. it’s driving me crazy, I keep getting antibiotics and it won’t work 😭😭😭
@@rashellegabbidon5226 I am completely healed now. I bought this product with a company called harmony with dmannose and hibiscus flowers. I took two a day. It was only 29 dollars for two months supply
@@amchomemaker how are you now?
I had to have a cystoscopy for this, I’m not sure what its like for women but for a guy i can honestly thing its the worse experience ive ever had in my life.
Same. Never again.. my symptoms got worse after that
i so have IC...who can i call???
welcome too the club
A urologist
Me too😩
you can contact me my phone is 7274746558
@@blancaespinoza1906 some of them doubt you
Im 22 and i have this issue , its terrible, someone has some tips for me?
drink a LOT of water because then if you feel that you have to pee at least it you'll be able too, that helps me a lot
Marshmallow roots Help to open the bladder while u at toilet the pressure is better see a tcm doctor too
Hydration is so very important...the solution to pollution is dilution...We IC sufferers are gonna pee a lot....but, I've found that the more we drink, the more dilute the urine becomes.....don't wait for the pain and decide you need to drink....I drink only water and milk....I've tried lots of herbal teas and pear juice.....but, almost all drinks have ascorbic acid as a color preservative..read all labels, food and drink...if it looks like it's gonna hurt, pass it by.
My ic is horrible! Thanks for the video
Drink barley water and eats figs too and avoid tea coffee acidic foods and avoid bread that is white bread u can go for whole wheat bread
You shared very good information. My Aunt was suffering from this problem. She was very upset at that time. She went to Planet Ayurveda and started his treatment. Now she is fine. If you have this type of problem or any other type of health problem. You must go to Planet Ayurveda.
I bet theres alot of pain medications involved because if you don't treat the pain it only gets worse.
now its more like 10 million. it ruined my life. i was peeing 20 times a day
Look up Anthony Williams medical medium! It's from having strep in ur body
Your right on target... thank you! I will look him up.
I am from Austria Here is very very poorunderstoond pbs I have since since 2 years in thus condition horrible
Sum Sum: So, is it IC? Have you been through cystoscopy? Do you have ulcerations? How were you diagnosed?
Doctora diagosed truth cystokopie.i am naw one month better after I theraied my self at home
Yeah the bottom of the bla blaader was very infammed but as I said its all home naw sice one month
No Diagnose is ic/ painful bladder syndrom
aqxpharma.com is no longer available.
Then what's the point of going to the Doctor? No cure!
Exactly...
@@maryw2096 They'll charge your insurance thousands of $ and do nothing!!!!
ruined my life--elmiron helped
It ruin d my life too baby. It coated me so much. I lost my youth to this disease.
Ruined my life to. Klonopin helps with bladder spasms. Had this for years. Cathing myself now.Doctor doesn’t really know what he is saying.
its hell death sounds better some days..
Elmirion has now showed to cause eye damage and problems. I see a retina specialist now because of taking Elmirion. It won’t come on right away but it can come on years from now. I had healthy eyes my right eye is the problem now. Watching to make sure I don’t have a retina detachment. Beware.
Nope shes in so much pain, I know that walk! Please take off the jeans, ouch!!!
Barbie Flores I think she’s mild. I’m severe I can’t wear jeans. I wear leggings. And you can tell from my eyes I’m suffering. Been sick since 1988.
@@tessamohler7155 🙏🏼❤️
@@tessamohler7155 it is so hard, debilitating.
So like 30 times in a 24 hour period!? Ha, that's nothing, I go like 90-100 times in a 24 hour period..
A BETTER TREATMENT WOULD BE TO ALLO THE PATIEN TO URINATE INTO A BAG. THAT WAY THE BLADDEE CAN HEAL FOR ONCE !!!!
I hate the word CYSTOSCOPY 😤