IC with hunners ulcers

[shireen]

Does anyone here have IC with hunners ulcers, the unlucky 10% club of IC?

and do you work full time? I ask because for the first time I am going on sick leave since I got diagnosed last year and I am finding this emotionally very challenging to accept.

[Debbie]

I have hunners ulcers and I work full time, found out Had them and IC in March this year, Doctor still doesnt know where blood in urine is coming from, I think ulcers. I fell sick at work most of the time, treasure times when its not a m pain. Can't really aford to leave, been there 29 years

[christina]

I was diagnosed with ic in November of 2007, I had surgery June 3, 2008 they found 4 hunners ulcers. I am in so much pain in my low back most of the time and my groin and pelvic does anyone feel this kind of pain?

[Jenn]

I was diagnosed in Feb of 2008. My doctor believes that I may have hunners ulcers and I am haveing surgery in two days. I am only 23 years old and I am in constant pain. I am so thankful that my husband of one year is very supportive. I believe that it is hard to explain to him the type of constant pain that I am in. I am very scared to go into surgery. Is the surgery bad?

[Karan]

There truly is hope for IC patients. My daughter, now 22, suffered for four years before we finally got the diagnosis of IC. She did everything on the market at the time, finally doing the 9-week bladder instillations at Vanderbilt Hosp, which did not help. Her life was miserable. I finally found Dr. Russell Roby, in Austin, Tx, who believes that so many of these things are caused by hormonal imbalances and he successfully and regularly treats IC patients. We went to him, and he placed bio-identical hormones under her tongue, and instantly her pain was gone. I wouldn't have believed it if I hadn't seen it with my own eyes. Her pain (7 out of 10) went to "0" within seconds. Do yourself a favor. If you suffer with IC, that is needless suffering. Please check this out. That was in January, 2006, and she has since married, graduated from college, and is living a full, normal, and very productive life. Please don't think this is a hoax or voodoo. There are sound medical principles that are in play here. Please go to www.robyinstitute.com and read up on what he does. It was a miracle that we never thought we would find.

[kim]

Jenn wrote:

I was diagnosed in Feb of 2008. My doctor believes that I may have hunners ulcers and I am haveing surgery in two days. I am only 23 years old and I am in constant pain. I am so thankful that my husband of one year is very supportive. I believe that it is hard to explain to him the type of constant pain that I am in. I am very scared to go into surgery. Is the surgery bad?

I am going for surgery in one day...for Hunners ulcer. Did your surgery help you? Has anyone else had a good/bad experience they might share with me.....please I could really use your help. Thank you.

[sheila]

christina wrote:

I was diagnosed with ic in November of 2007, I had surgery June 3, 2008 they found 4 hunners ulcers. I am in so much pain in my low back most of the time and my groin and pelvic does anyone feel this kind of pain?

I was diagnosed with ic in August 2007, it has been a long painful road, I recently underwent a hydrodistention and cystoscopy at which time 2 large hunners ulcers were burned off. They will come back some where else according to my MD. The pain associated with ic is terrible but having ulcers also makes the pain in my abdomen, inner thighs, and low back almost unbearable. I take MsCotin 30mg 3 times a day with valium suppositories as needed, and I do installations at home which seems to help. The only way I get any exercise is in the pool which also seems to temporarily relieve my pain symptoms along with Ativan 3 times a day Elival with an anihistimine at night and Prelief with any food that may aggrevate the bladder and I use CystoProtek because I cannot tolerate Elmiron. Hope that helps.

[ESJ]

I was diagnosed with IC 5 years ago when I was 29 (I have numerous Hunner's ulcers but one very large one at the base of my bladder). I work full-time but every now and then I have a very bad day where I can't make it in to work. I have the bladder stretch every 2 months under GA. They also burn the ulcers during this procedure. The procedure is fine. It is NOT sore. I get huge relief from it (up to 4 / 5 wks with radically reduced symptoms). Don't be scared of it.

[Cat]

ESJ, Can I ask you where you saw a urologist, or received medical help in ireland? I was discharged from Tallaght Hospital by a Consultant who after a couple of OPD appointments told me I MAY suffer from urethral syndrome but that IC is in my head, not a proven condition and the first condition is largely untreatable.
My GP who has only ever treated one IC patient in 30 years is fantastic and disputes this, he prescribed Elmiron which provided some relief, I also take aloe vera daily and get acupuncture regularly, up to eight times a month depending on the severity of the symptoms at the time. I also attend a herbal clinic where I receive a herbal remedy when it’s completely debilitating. I have read up on the condition extensively and from my understanding, alternative remedies, in particular Chinese medicine is apparently far more successful at treating the condition than western medicine but having not had the fortune to have seen a urologist who believes in the condition, I don’t feel I’m getting the opportunity to find out. Any advice on being a sufferer in Ireland or where to get a referral to would be greatly appreciated.

[Jo Kilkenny]

Hi my mother is receiving treatment from Mr Barry Jones who works in both Kilkenny (Aut Even Hospital)and Louth. He carries out bladder irrigation and DMSO injections. If you contact him he may be able to reccommend someone who can help you.
Can you give us any further information on chinese medicine and acupuncture?Any help would be appreciated. Thanks

[jean]

I was just diagnosed with hunner ulcer..... I can't figure out what the heck am I going too do !!!! please send info please

[Shelly]

jean wrote:

I was just diagnosed with hunner ulcer..... I can't figure out what the heck am I going too do !!!! please send info please

Hi Jean. I was diagnosed in 2003 with IC and hunner's ulcer's diagnosis about 2 weeks ago. Very painful and you gotta love it when they tell you that you have something that is incureable. AAUUGGHH!!! I have had 2 Bladder distentions which the first was in 2003 and did not need another until 2 wks ago. But things are worse this time around. I am in process of trying to locate a natural way to handle this chronic condition. They can burn off your ulcer's while doing the distention. Some people have to do this every 6-12 months. Hope it helps. Shelly

[Elizabeth Brown]

Hi Shelly,
i could understand what are you feeling, i have had IC problems a couple of years ago. A friend of mine suggested me a natural product and i solved my pains. For your information, I followed up a therapy of 5 months to get the first results and from then i took no anti-biotics any longer.

If you are interested to get any further news contact this email address ([e-mail] .uk) where you can explain your problem and find a very good medical support as well.

Please keep me posted and do not hesitate to contact me back for any further information.

[e-mail]

Cheers.

Elizabeth

Shelly wrote:

<quoted text>
Hi Jean. I was diagnosed in 2003 with IC and hunner's ulcer's diagnosis about 2 weeks ago. Very painful and you gotta love it when they tell you that you have something that is incureable. AAUUGGHH!!! I have had 2 Bladder distentions which the first was in 2003 and did not need another until 2 wks ago. But things are worse this time around. I am in process of trying to locate a natural way to handle this chronic condition. They can burn off your ulcer's while doing the distention. Some people have to do this every 6-12 months. Hope it helps. Shelly

[Lisete Toronto Canada]

I was diagnosed with IC with hunners's ulcer's in 1999 I was in extreme pain all the time and had some bleeding. I was on Elmiron for 6 months and was pain free (was pain free but still was urinating 20 times a day) for 10 years but as of this last year I've had flare ups on and off. I now have to go back to my specialist because I'm have burning all day and night, pelvic pain that just won't go away! I can't believe this has returned after all these years of being pain free! I've lived so long almost symptom free and I don't know what's changed to bring this back??

[Shay]

I was just recently diagnosed with severe IC with Hunner's ulcers. I struggled for over 2yrs without answers to why I'm in so much pain. I was even accused of being a drug seeker by some ER doctors. I can't even begin to explain how frustrating this had become for me. I see a pain management doctor and take vicodin es, neurontin, and elmiron. I don't know if this pain will ever go away, but I'm hopeful. I still can't help but be very angry with the many doctors who have accused me of being addicted to pain drugs because they couldn't diagnose the problem. I'm very thankful to the doctor who discovered my problem and is now helping me. I hope no one else goes through the embarassment and hummiliation I went through when I went to the hospital for treatment for my pain and was thrown out and told if I didn't leave they would call the police because they said nothing was wrong with me and I had been to the hospital so many times for the same pain and only wanted drugs. The hospital should consider the way they treat their patients because now I know the pain's not "all in my head".

[ICHelp]

Overview on IC Association website ( www.ichelp.org )
http://www.ichelp.org/Page.aspx...

Also check out literature reviews for latest studies on Hunner's ulcers
http://www.ichelp.org/Page.aspx...

[Aga]

Dear Cat,
could you provide me with the details of the TDM clinic and acupuncturist you go to. I have spent hours trying to find any on Internet, there is lost of them but it is always better to go to somebody recommended. I would really appreciate your help.

[katika]

Dear Elizabeth !

Could you share the natural treatment that helped you ! I am desperately looking for answers.
Hope you are symptom free.
Thanx so much Katika

Elizabeth Brown wrote:

Hi Shelly,
i could understand what are you feeling, i have had IC problems a couple of years ago. A friend of mine suggested me a natural product and i solved my pains. For your information, I followed up a therapy of 5 months to get the first results and from then i took no anti-biotics any longer.
If you are interested to get any further news contact this email address ([e-mail] .uk) where you can explain your problem and find a very good medical support as well.
Please keep me posted and do not hesitate to contact me back for any further information.
[e-mail]
Cheers.
Elizabeth
<quoted text>

[Ana]

I also had to hear that my pain was because of my stress, etc. etc. There are historical reasons for that. Old school doctors think this is a "a "hysterical" disease of women (see below).
I just found some articles from a group of doctors at NY University, who do MRI of the uretra to detect periurethral problems not detectable with cytoscopy. Have any of you had a high resolution MRI done?
Best wishes to all.

http://www.ic-network.com/whatisinterstitialc...

1950's - early 1980's: IC is mistakenly labelled as a psychiatric
condition as various members of the medical community clung to the
misguided belief that IC may have psychosomatic origins. Although a
research study in 1953 first documented the presence of IC in children
(21), IC was unfortunately labeled a "hysterical" disease of women in
an article by Bowers, Schwartz and Leon (22). They suggested that a
woman who had been under medical care from childhood to 29 years of
age with severe IC, may have had "repressed hostility towards parental
figures handled masochistically via bladder symptoms since infancy."
Sadly, this appears to have contributed to an attitude of passiveness
in patient care and physician training that has lasted throughout the
following decades. This attitude was aptly demonstrated by Dr. Daniel
Brookoff, as he explained 'The first time I heard of IC was in medical
school twenty years ago. A famous professor was lecturing. At the end
of his speech he said "There's this disease called interstitial
cystitis. It is little old ladies and they have to urinate a lot.
They're always in pain and they will drive you nuts. It's a
psychiatric disease. It's all in their heads."'(23)

2000's: IC is now accepted as one of the most challenging conditions
known to the urology community. The NIH, as well as researchers around
the world, are devoting millions of dollars towards research that is
slowly, yet surely, revealing essential pieces to the IC puzzle.
Research studies now flourish and cover topics such as epidemiology,
diagnostic methods, new treatments and long term patient care. Medical
journals such as Urology and the Journal of Urology are routinely
publishing articles or special editions dedicated to interstitial
cystitis. A search of PUBMED (28), the free medical research index on
the web, currently reveals hundreds of studies on IC. The research is
fertile, the funding is obtainable, and IC is slowly, but surely,
gaining credibility.

2009: New American guidelines have been released selecting the name
IC/BPS as the formal term to be used in the USA. New treatment
guidelines were also released.

[Erin]

IC not only interferes with my ability to work, I can't even GET there without having to stop several times. If there's traffic, construction, weather or anything else that keeps me on the road longer than about an hour,(and sometimes much shorter than that,)I'm in trouble, into retention and this increases my pain for several days! Anyone have any tips on when you're NOT able to access the rest room immediately? Also, I've been taking Klonopin which was initially given to decrease anxiety. Although I still need to get up many times during the night, I find my sleep doesn't seem as disrupted and I don't feel so exhausted every morning. Careful, though, this is a benzodiazepine and can be addictive!