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DawnCOB

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Interstitial Cystitis / Painful Bladder Syndrome Success Stories

 

COB frequently receives stories from those that have found successful treatments for their bladder condition.

 

The following is a selection of success stories which are featured in either COB magazines or on COB forums. 

 

Where possible a direct 'story' link has been included under the title. If you have comments/questions about the success story please click on the link to take you to the relevant thread to post in.

 

If you have a success story that you would like to be included here please email this to info@cobfoundation.org

DawnCOB

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Amitriptyline

 

http://cobf.websitetoolbox.com/post?id=4968799

I used to post on these forums and read through every little detail to try and find something that would stop my constant pain and pressure i felt.. I got this illness when i was 18 up until 21, with no break from the pain. I was literally housebound i couldn't face doing anything ever.

I tried EVERY
THING. Then at 21 my urologist put me on 25mg of amitryptiline to take once at night and 3 months later my pain was gone. It's been gone ever since and i still take 1 tablet every night. I'm 24 now.

I just can't believe something soo simple would give me my life back!!!!!!!!!!!!
Has anyone else had success with this? Will i have to take it forever do you think? And if anyone has a question i'm more than happy to help!! Thanks, Louisa x

DawnCOB

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Acupuncture

 

excerpt from COB magazine issue 63 2010

 

My acupuncture treatment began in 2007 to 2008 weekly , then as I improved my appointments become less . I have no symptoms apart from a twinge if I have to much white wine! Susan.

 

excerpt COB mag issue 60 2009 (2 pt article)

Before commencing acupuncture treatment IC was controlling my life. I used to have to get up 3 or 4 times per night to visit the toilet. I was regularly self catheterising every day and night. I have now not used a single catheter and peeing more normal. Now I experience no pain. My general health has now improved significantly. Alan

DawnCOB

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Atarax (Hydroxyzine)

 

http://cobf.websitetoolbox.com/post?id=4492714&highlight=atarax

 

Ive been talking atarax for over 4 years, and always take it at night as i find its the best time and dont feel crappy in the morning.the doctors have never told me that its not safe to take for life,so im going to keep taking it as I call it the wonder drug as its helped me so much.when I saw the doctor he told me hes never given the drug atarax to patients with ic before but i asked my GP for it and she was fine  was the best thing me did. Lady in red

 

Is bladder frequency your main problem?If so have you tried the antihistamine Hydroxyzine (atarax) it has really worked for me. Liz

DawnCOB

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Cystistat  

 

 http://cobf.websitetoolbox.com/post?id=3633658&highlight=cystistat+success

 

i have been having cystistat instills for 2 years now. i am currently going every 7 weeks and it has been a success story- touch wood. i always insist they use a small gauge ( size 10 or 12) soft flexible catheter- hydrosil are the best for me. i experience about 4 seconds of irritation, i do deep breathing and make sure i breathe out when the catheter goes in.  with the treatment inside me- no pain but a bit or urgency. i can manage to hold on for 30 mins and this does the trick. i feel a bit of tenderness for the rest of the day- and thats all. DK

 

Cystistat

 

http://cobf.websitetoolbox.com/post?id=4669084&highlight=cystistat+success

 

I have been on cystistat instill for at least a little over a year now and intend to stay on them for the rest of my life if need be!! It took a few mths before i noticed any improvements and things have gotten a little better. However i don't know if thats with having the instills or with the acceptance that i now have ic and the releif that has come with the diagnoses!! Erica

 

Cystoprotek (available from USA ICN network)

 

http://cobf.websitetoolbox.com/post?id=3772424&highlight=cystistat 

 

Before I started taking Cystoprotek I used to have about 50% good days and 50% bad days, however I have never been so bad to miss work etc. so I don't think I have IC that badly.
Since taking Cystoprotek I am mainly pain free, I have been able to give up the ami and I am now only taking Cimetitine.  I have even reduced the Cimetitine recently with no adverse effect. I have to say that I follow the IC diet quite strictly and only drink alkaline water (I have a filter jug).  I decided to try Cystoprotek because it is supposed to be the natural alternative to elmiron

 

 

DawnCOB

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Elmiron

 

 excerpt COB Mag issue 59 2009

I have now been taking Elmiron for 13 yrs and the improvement had been phenomenal. I almost consider my bladder to be normal. Mr M B

 

Elmiron 

 

 http://cobf.websitetoolbox.com/post?id=3697997&highlight=elmiron

I really wanted to share is I have been on almost complete remission over 5 months now I am biting my tongue as I write! I really don’t know why this has happened, don’t get me wrong I am not complaining but it happened almost over night and I was not using any treatment at the time apart from painkillers (Opioids) Now I don’t take any pain killer whatsoever and my life has transform back to normal. Pinar

 

Elmiron

 

http://cobf.websitetoolbox.com/post?id=4695707&highlight=elmiron 

 

I've been on Elmiron for 6 months and over that period of time I have noticed that things gently began to improve.  My frequency and urgency  reduced and i noticed that i was able to hold more fluid too.  It didn't help my bladder spasms or pain though.  i also noticed that some of the foods i couldn't tolerate previously were ok when I was on the elmiron.Jen

 

Elmiron

 

http://cobf.websitetoolbox.com/post?id=3470668&highlight=elmiron

 

 I don't know whether this will be encouraging or not for those members who have recently started to take Elmiron - it takes a long time to work. I have been taking it for about 12 years. When I started Elmiron I had exhausted all other options except drastic surgery and had constant severe symptoms. My consultant had carefully explained the risks of the surgery and level of success which might be achieved leaving me with the thought "when life is so unbearable that you are prepared to take the risk just let me know". It took three years for the Elmiron to become effective. Many was the time that I thought I was just trying to kid myself that it would work and that I should face up to surgery, but gradually.......In a scale of 1 to 10 for pain and impact on life my symptoms have moved from 9.5 to 2. I don't really have pain now only discomfort from time to time.Swallow

DawnCOB

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 Nambudripad's Allergy Elimination Techniques (NAET)

 

 http://cobf.websitetoolbox.com/post?id=3772424&highlight=cystistat&trail=30

 

I have suffered from bladder symptoms for over 15 years and it became worse in 2008 when i became severly ill. I have been diagnosed with adrenal fatigue and underactive thyroid. When i wasn't getting any relief in 2009 i researched and found a book by Catherine m. Simone called - Along the healing path. Recovering from interstitial cystitis. She used a treatment called N.A.E.T and it was an integral part of her recovery. I started the treatment about 5 months ago and it has made a lot of changes with my bladder symptoms and the foods i can eat. I also have thyroid and Adrenal treatment as it is common for I.C patience to suffer from adrenal insufficiency and an underactive thyroid. However all this is private treatment as i got nowhere with my NHS consultants. I see a lady called E N in Newbury for NAET treatment and Dr B D-P for thyroid/adrenal/mineral treatment. If you look on http://www.naet-europe.com. You can find a practitioner in your area.

DawnCOB

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 Prelief  (Diet supplement)

 

COB mag Issue 63

 

I came across Prelief and my life changed. I no longer have the troublesome symptoms and can enjoy all the acidic foods.

DawnCOB

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Sacral Nerve Stimulation (Interstim)

 

I now have warning when I need to go to the toilet and it has made a massive difference to my life. Carol

DawnCOB

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Surgery

 

Cystectomy I have no problems with my stoma and now lead a normal life again pain free. Sue

 

Excerpt COB mag issue 59 2009

 

Its now 8mths since my surgery and I feel like a different woman. I now cope really well with my stoma and it takes very little time to deal with. It is now a just a part of my bathroom routine. Brenda

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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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