Interstitial Cystitis

[livingwith]

And very poor support from Kaiser Permanente Urologists of Denver.. I finally hired one of Denver’s premiere “private” Urology Specialists to gain the proper IC diagnosis… Denver Kaiser Urologists didn’t care if I had an IC Diagnosis…! They still would NOT help me… they wanted to use old outdated IC criteria.. sad, because sticking your head in the sand like an ostrich, like Kaiser Urologists wanted to do, only prolongs and deepens your pain involvemen...Read the full article

[LivingWithIC]

Wow, someone else had lousy Kaiser Permanente doctors as well. I had horrible OB/GYNs at Kaiser in Virginia. They kept insisting I had irritable bowel.....one doctor even had the nerve to LAUGH at me doubled over in pain which was my final straw. Come to find out after being persistent and going to a non-Kaiser doctor, I have fibroids and IC. My husband still gets angry when he thinks of how ignorant they were of listening to my symptoms (including passing HUGE blood clots which is a major symptom of fibroids). I often wonder if Kaiser hires doctors from the bottom of the graduating class. Hope you are doing okay with your IC.

[liliannablog]

If you are still looking for terrific doctors at Kaiser Denver, please drop me an email at [moderator note: e-mail address has been removed] - I am in your area and have two names for you. Trust me, I feel your pain.

[ce36]

Hi,
I read your post. After reading so many, I was feeling less optimistic. I am a 41 y.o. clinical psychologist, associate professor at yale, mom to a 5 y.o., wife, daugther to a mother w/medical problems. Not only do I support my family through my worklife but I support a staff of 20 regarding their salaries, hence, how I need treatment to continue working.

My history, when I was 19 y.o. I was diagnosed w/endometriosis and had surgery. No one mentioned that there should be follow up. It was tx'd as a non-issue, all set. This past year, I started experiencing excruciating pain beyond my bladder, constant urge to go, urinating all day and almost every hour in the middle of the night. My regular OBGYN said you probably have a flare up of endometriosis ordered a quick and dirty (low level) ultrasounds that show two small cysts and the answer was 'let's just keep an eye on it' and try to medicate, IUD's, hormones etc. One week later, I was even worse. This response wasn't good enough. i did my research and google'd one of the best surgeons for endometriosos (Dr. Anthony Luciano) and he did surgery and removed adhesions, cysts, endometriomas that were all over my ovaries, bladder, rectum, vagina. The adhesions were bad and he showed us the pictures and I could not believe my eyes. I was so happy, optimistic and relieved that they were removed. Two weeks postopt, I started frequently urinating, pain, all over again. I went to see him and he did some tests and said, I'm referring you to a Urologist b/c I think you have IC. I googled and researched it.

As of yesterday, I was started on the Elmiron and the med that turns your urine tang orange/tea color and no contact lens'..I woke up and was so happy b/c I thought wow, I only urinated through the night only once and no pain during 1/2 my work day today and then it started all over.

This specialist is out of town for 3 weeks so I'm about to research the best surgeon for IC to definitely diagnose it, rule out bladder cancer and the ulcers. I like the med regime you are on..I'm familiar w/most of the meds.

My questions to you are as follows:

--do you know who the top IC surgeons are? I'll start looking. Did you have the diagnostic surgery in wich they took a sample of the bladder lining to rule out bladder cancer? and if so, how was the surgery and recovery?

--did you have any ulcers?

--how has the tricyclic changed your life. w/the Tri's aren't you not supposed to eat certain foods b/c of the interactions??

At any rate, I would appreciate any help you can give me. I've had a really hard time the past 5 years taking care of my family, intense ivy league job and losing my father to a stroke 7 mo. ago, my father-in law to a heart attack the 2 years before and my sister-in law to cancer. We've been hit hard and I'm the glue that holds us all together. Thankyou for helping..



I'm optimistic type of person and I really found your posting helpful.

P.s. I'm a bit worried about bladder cancer even though i don't have the typical risk factors but my IC came on like a fire ball starting Aug 2008 and so quickly worsened like a storm w/in such a short amount of time. Any thoughts on that?

Appreciate any helpful hints, comments and suggestions.

Best,
CJE

[TLnielsen]

Dear Sara and CJE...

Sara... thank you for your gentle prod... IC comsumes so much less energy in my life these days. I am incredibly indebted to this support site, and a couple of others that helped get me through the 3 to 4 yrs of my life that I nearly drowned in the pain and confusion of IC symptoms... your site has helped open doors so that I could begin to understand Pelvic Bladder Pain / Interstitial Cystitis (PBS/IC) and its
strangely unique array of onset factors and symptom-clusters.

I am working on a PhD in Health Psychology... I have a background as a School Psychologist, and as a small businessperson. I undertook a Review of the Literature - research paper, on Painful Bladder Syndrome / Interstitial Cystitis - PBS/IC several months ago. Please call or email me if you would like to read a copy of it.. Sara.. please help me find a way to upload or attach my paper to this site.

[moderator note: e-mail address has been removed] or [moderator note: phone number has been removed] cell if you want me to email you a copy of my review of key issues related to Painful Bladder Syndrome / IC - PBS/IC

Back to CJE of New Haven....

CJE,

Learning to live with IC means deep evaluation of your own health and stress issues... which I see that you are well aware of. Each of us has a unique cluster of vulnerable health impaired components.. I'm sorry that you had to experience endometriosis at such a young age... and I am very happy for you that you know the joys of giving birth to a child..! I hope we can all support you, and that you can lead yourself thru deep understanding of your own IC nuances.

You will need to find an Endometriosis / Pelvic Pain expert Gynecologist to pair with a great Urologist... once you find one great Doc or Nurse Practitioner... they will lead you to more resources and good Docs in New Haven, NYC, and Boston...

The best IC doc in Denver is a gal named Nel Gerig... Urologist. I think u should call her staff to see if she will return a call to you for referrals in your greater New Haven area ---> Boston, NYC. Also, a doc I quote resouces from in my paper is a Pelvic Pain - OBgyn expert who practices in Overland Park, Kansas named Dr. Charles W. Butrick.

I feel quite sure that you have IC, from the symptoms you describe... and any DECENT specialist worth their salt, should immediately recognize the fact that your precious pelvic region has been undergoing insults from a very young age..(which should be a tip-off to them in making your proper diagnosis...

My son will graduate as a Medical Doc in a year or so... then will get low pay to be a Resident learning a specialty... sometimes I like to "Live Thru Him" ... so here is what I would do with your unique set of symptoms.

1. Look beyond a surgical solution for IC

2. Get a Pelvic Pain OBgyn that understands how pelvic problems exacerbate other pelvic problems

3. Get a Urologist that jives with your Pelvic Pain OBgyn

4. Get to know a Tufts Univ IC research team, working with Dr. TC Theoharides and his assoc Dr. Sant, read their research on how our bodies may be putting off histamines... causing mast cells in our bladders to go crazy... his contributions to IC are many, but particularly the antihistamine hydroxazine... now standard to offset effects of allergies that we tend to have more troubles with as we age...

5. Keep up with Dr. Susan Keay's research... she's either with Univ of Maryland or John's Hopkins..(Baltimore) .. both these places are stellar resources for IC

6. The Elmiron has a specific way it should be used in my opinion... I don't understand why the drug company and the docs don't give better instructions with it. Try taking it as a "Bladder Installation" therapy, instead of just popping a pill. Here's the difference. When you take a pill in the normal course of the day... we often do it with food (we think gentler on our stomache). But with this drug the intent is to strengthen the bladder walls. So get a 12 to 16 oz coffee mug, heat some purified or spring water and take 1 or 2 Elmiron pills on an EMPTY stomache. What happens when u do it this way is that it goes directly to your bladder with soothing meds to bathe the interior of your scorched and currently permeable bladder lining. The glycosaminoglycan (GAG) layer of your bladder is damaged right now... and your job is to understand the probable paths that led up to the damage...and correct them. Reading Theoharides (Tufts) research will help you understand why your bladder is permeable today. BTW... I took 1 Elmiron pill + 1 glucosamine/chodriotan capsule with a large coffee mug of warm water... retained it in my bladder as "an instillation" for as long as I could. If I woke up during the night, I might take this installation at 2am, so that I'd be sure to "hold it" in my bladder for 4 or 5 more hours.. before waking up to eliminate. Giving the installation that long to sit in my healing bladder was very good for it... and when I start getting pains back... I start on that therapy again to re-build a stronger GAG layer in my bladder... While you are healing you may need to be on Elmiron + Glucosamine for a year or two straight... this is not a band-aid treatment, but a long therapy course, that will only work with use over large blocks of time.

7. Find Elmiron's resources for IC Diet improvements... and the IC support networks often give ideas and thoughts to improve your diet to help your bladder pains... Some of the diet rules are standard.. but you also need to find which unique foods your little body is reacting against.. either as allergy.. or some other reaction. My IC diet needs are very typical of the standard IC diet. When hurting.. no tomatoes or tomatoey types... I love spaghetti and tomatoes... but forget it, and take a Licopene supplement instead for the health benefits of tomatoes.... also forget Orange Juice. My new juices of choice are grape and blueberry... I water them down alot.. at first I did 1/2 spring or purified water and 1/2 juice... but now that I've worked my way DOWN the sweetness chain.... my body likes 2/3 water to 1/3 juice

8. Set your proper doses for:

1 or 2 Elmiron pill prescription, or 1 Elmiron plus 1 strong high grade Glucosamine-chodroiten supplement, www.vitacost.com - taken as a bladder installation

Hydroxazine 25 mg is standard... I can't take entire pill, bedtime take maybe 20 mg, or too groggy.

Tricyclic - Amatriptaline (Elavil) 10mg pill... I take appox 7 to 8 mg of it.. otherwise I get to groggy in the morning

9. I also like Quercetin - Bromalain supplements.... but I have to watch taking them if I am in IC Flare, as people with IC need desperately to lower their Potassium intake ... I don't actually know if Quercetin is hard on a flaring IC bladder.. I am just suspicious because it is a flavenoid... and I think Bromelain is made from pineapples.. definitely high in K and one of the known irritants for IC is Potassium... that's why they made the Potassium Sensitivity Test PST as a potential screening for IC... but YOU don't let any doc do that to you... why purposely hurt a flaring IC bladder like yours...? and if you've managed to heal your bladder... a bit of Potassium probably won't make it hurt... hence, making it a weak IC assessment tool.. however, I love Dr. Parson's Potassium / IC research.. I hope you will read it...

CJE... your cure to IC lies in your ability to understand your own body... your ability to stop the "up-regulation" of pain pathways that is occuring in your body. Elavil, Hydroxyzine, and lowering your stress-levels will really help "down-regulate"... or "Detune" your pains.... CJE.. the endometriosis and etc in your uterus and surrounding areas sent nerve pathways on a frenzy in your body.. when the pains are not cared for and responded to... the stresses in your life cause more pain pathways to open... as if your uterus is saying... OK body, if you don't listen to the pains in just the uterus, I will open a pathway to scream louder...and the pain pathways spred to tangent parts of your pelvic region.. in this case the bladder... I hope you gain control of your spiralling out of control pains, before they go on to possibly damage the nerves in your inner and outer vaginal areas...etc...to cause vulvodynia...vulvar pains. You will need the people in your life... husband, mom , child, work... to understand that you are embarking on a treatment program for yourself.... one that with some work and patience will have you feeling better. But, even when you are doing 70% better, you will need to recognize causes of stress and minimize them... or stop the world and get off... I read one gal who is a busy and successful nurse... she just has to ask to leave work occasionally when life gets too crazy...

Perhaps you can know in your job at what times of the day you need quiet work, and what times multi=tasking work... and sometimes you may need to back way down for a day or a few to collect yourself.. heal back up... I hope u will develop a balancing act that is in harmony with demands of work and you listening to your body's needs. My Best Wishes to You, CJE..! Terri Lee

[ce36]

Dear Terri Lee,
I can not thank you enough for all the information that you sent me and your support means so much. You are a true angel. I will follow up w/your advice b/c I can see you've done an intense amount of research and the medications you mentioned appear to be working for you.
I am also very interested in reading your paper. My email is [moderator note: e-mail address has been removed] or [moderator note: e-mail address has been removed] and if you hit the attach button and browse your documents and then open your paper (by it's document name) and then click attach, it can be sent.

Again, I am indebted to you for your support and all your very thorough recommendations. I will keep in touch,

best,
Caroline




[quote="TLnielsen"]Dear Sara and CJE...

Sara... thank you for your gentle prod... IC comsumes so much less energy in my life these days. I am incredibly indebted to this support site, and a couple of others that helped get me through the 3 to 4 yrs of my life that I nearly drowned in the pain and confusion of IC symptoms... your site has helped open doors so that I could begin to understand Pelvic Bladder Pain / Interstitial Cystitis (PBS/IC) and its
strangely unique array of onset factors and symptom-clusters.

I am working on a PhD in Health Psychology... I have a background as a School Psychologist, and as a small businessperson. I undertook a Review of the Literature - research paper, on Painful Bladder Syndrome / Interstitial Cystitis - PBS/IC several months ago. Please call or email me if you would like to read a copy of it.. Sara.. please help me find a way to upload or attach my paper to this site.

[moderator note: e-mail address has been removed] or [moderator note: phone number has been removed] cell if you want me to email you a copy of my review of key issues related to Painful Bladder Syndrome / IC - PBS/IC

Back to CJE of New Haven....

CJE,

Learning to live with IC means deep evaluation of your own health and stress issues... which I see that you are well aware of. Each of us has a unique cluster of vulnerable health impaired components.. I'm sorry that you had to experience endometriosis at such a young age... and I am very happy for you that you know the joys of giving birth to a child..! I hope we can all support you, and that you can lead yourself thru deep understanding of your own IC nuances.

You will need to find an Endometriosis / Pelvic Pain expert Gynecologist to pair with a great Urologist... once you find one great Doc or Nurse Practitioner... they will lead you to more resources and good Docs in New Haven, NYC, and Boston...

The best IC doc in Denver is a gal named Nel Gerig... Urologist. I think u should call her staff to see if she will return a call to you for referrals in your greater New Haven area ---> Boston, NYC. Also, a doc I quote resouces from in my paper is a Pelvic Pain - OBgyn expert who practices in Overland Park, Kansas named Dr. Charles W. Butrick.

I feel quite sure that you have IC, from the symptoms you describe... and any DECENT specialist worth their salt, should immediately recognize the fact that your precious pelvic region has been undergoing insults from a very young age..(which should be a tip-off to them in making your proper diagnosis...

My son will graduate as a Medical Doc in a year or so... then will get low pay to be a Resident learning a specialty... sometimes I like to "Live Thru Him" ... so here is what I would do with your unique set of symptoms.

1. Look beyond a surgical solution for IC

2. Get a Pelvic Pain OBgyn that understands how pelvic problems exacerbate other pelvic problems

3. Get a Urologist that jives with your Pelvic Pain OBgyn

4. Get to know a Tufts Univ IC research team, working with Dr. TC Theoharides and his assoc Dr. Sant, read their research on how our bodies may be putting off histamines... causing mast cells in our bladders to go crazy... his contributions to IC are many, but particularly the antihistamine hydroxazine... now standard to offset effects of allergies that we tend to have more troubles with as we age...

5. Keep up with Dr. Susan Keay's research... she's either with Univ of Maryland or John's Hopkins..(Baltimore) .. both these places are stellar resources for IC

6. The Elmiron has a specific way it should be used in my opinion... I don't understand why the drug company and the docs don't give better instructions with it. Try taking it as a "Bladder Installation" therapy, instead of just popping a pill. Here's the difference. When you take a pill in the normal course of the day... we often do it with food (we think gentler on our stomache). But with this drug the intent is to strengthen the bladder walls. So get a 12 to 16 oz coffee mug, heat some purified or spring water and take 1 or 2 Elmiron pills on an EMPTY stomache. What happens when u do it this way is that it goes directly to your bladder with soothing meds to bathe the interior of your scorched and currently permeable bladder lining. The glycosaminoglycan (GAG) layer of your bladder is damaged right now... and your job is to understand the probable paths that led up to the damage...and correct them. Reading Theoharides (Tufts) research will help you understand why your bladder is permeable today. BTW... I took 1 Elmiron pill + 1 glucosamine/chodriotan capsule with a large coffee mug of warm water... retained it in my bladder as "an instillation" for as long as I could. If I woke up during the night, I might take this installation at 2am, so that I'd be sure to "hold it" in my bladder for 4 or 5 more hours.. before waking up to eliminate. Giving the installation that long to sit in my healing bladder was very good for it... and when I start getting pains back... I start on that therapy again to re-build a stronger GAG layer in my bladder... While you are healing you may need to be on Elmiron + Glucosamine for a year or two straight... this is not a band-aid treatment, but a long therapy course, that will only work with use over large blocks of time.

7. Find Elmiron's resources for IC Diet improvements... and the IC support networks often give ideas and thoughts to improve your diet to help your bladder pains... Some of the diet rules are standard.. but you also need to find which unique foods your little body is reacting against.. either as allergy.. or some other reaction. My IC diet needs are very typical of the standard IC diet. When hurting.. no tomatoes or tomatoey types... I love spaghetti and tomatoes... but forget it, and take a Licopene supplement instead for the health benefits of tomatoes.... also forget Orange Juice. My new juices of choice are grape and blueberry... I water them down alot.. at first I did 1/2 spring or purified water and 1/2 juice... but now that I've worked my way DOWN the sweetness chain.... my body likes 2/3 water to 1/3 juice

8. Set your proper doses for:

1 or 2 Elmiron pill prescription, or 1 Elmiron plus 1 strong high grade Glucosamine-chodroiten supplement, www.vitacost.com - taken as a bladder installation

Hydroxazine 25 mg is standard... I can't take entire pill, bedtime take maybe 20 mg, or too groggy.

Tricyclic - Amatriptaline (Elavil) 10mg pill... I take appox 7 to 8 mg of it.. otherwise I get to groggy in the morning

9. I also like Quercetin - Bromalain supplements.... but I have to watch taking them if I am in IC Flare, as people with IC need desperately to lower their Potassium intake ... I don't actually know if Quercetin is hard on a flaring IC bladder.. I am just suspicious because it is a flavenoid... and I think Bromelain is made from pineapples.. definitely high in K and one of the known irritants for IC is Potassium... that's why they made the Potassium Sensitivity Test PST as a potential screening for IC... but YOU don't let any doc do that to you... why purposely hurt a flaring IC bladder like yours...? and if you've managed to heal your bladder... a bit of Potassium probably won't make it hurt... hence, making it a weak IC assessment tool.. however, I love Dr. Parson's Potassium / IC research.. I hope you will read it...

CJE... your cure to IC lies in your ability to understand your own body... your ability to stop the "up-regulation" of pain pathways that is occuring in your body. Elavil, Hydroxyzine, and lowering your stress-levels will really help "down-regulate"... or "Detune" your pains.... CJE.. the endometriosis and etc in your uterus and surrounding areas sent nerve pathways on a frenzy in your body.. when the pains are not cared for and responded to... the stresses in your life cause more pain pathways to open... as if your uterus is saying... OK body, if you don't listen to the pains in just the uterus, I will open a pathway to scream louder...and the pain pathways spred to tangent parts of your pelvic region.. in this case the bladder... I hope you gain control of your spiralling out of control pains, before they go on to possibly damage the nerves in your inner and outer vaginal areas...etc...to cause vulvodynia...vulvar pains. You will need the people in your life... husband, mom , child, work... to understand that you are embarking on a treatment program for yourself.... one that with some work and patience will have you feeling better. But, even when you are doing 70% better, you will need to recognize causes of stress and minimize them... or stop the world and get off... I read one gal who is a busy and successful nurse... she just has to ask to leave work occasionally when life gets too crazy...

Perhaps you can know in your job at what times of the day you need quiet work, and what times multi=tasking work... and sometimes you may need to back way down for a day or a few to collect yourself.. heal back up... I hope u will develop a balancing act that is in harmony with demands of work and you listening to your body's needs. My Best Wishes to You, CJE..! Terri Lee[/quote]

[liliannablog]

Just wanted to give you another resource -- http://icresearch.umaryland.edu/ is the University of Maryland's IC website. In cooperation with the National Institutes of Health, they have two studies (EPIC study and the MAGIC study) going on right now regarding IC. The first report on one of the studies has just been accepted by the Urology journal: Warren, J.W., Howard, F.M., Cross, R.K., Good, J.L., Weissman, M.M., Wesselmann, Langenberg, P., Greenberg, P., Clauw, D.J. Antecedent non-bladder syndromes in a case control study of interstitial cystitis/painful bladder syndrome. Urology 2008 (accepted).

The other study is long-term and involved genetic testing of IC patients and family members so I think that report will take longer. Anyway, they have good information, some very nice people you can email to and some terrific links on their website.

BJC

[TLnielsen]

Dear BJC...

I REALLY appreciate that you've taken the time to share a wonderful IC resource with me....!

I will head straight to the site.... and read about the resources they offer... I think Dr Susan Keays IC research also came out of the Univ of Maryland... I'm so glad there are several talented people there who garner IC research dollars - and the follow thru with the research..!

I know I will enjoy discovering more about the IC talents and resources at Univ of Maryland...

Let me know if you would like to read a copy of the Review of IC Literature that I performed about 6 months ago... It contains a lot of info on the latest and greatest in PBS/ IC ...

** [moderator note: e-mail address has been removed]

In my paper you will find many things that you know about IC... and perhaps walk away with a bit more.... Sincerely Terri Lee



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