Thursday, December 3, 2009
Wednesday, December 2, 2009
Hunners Ulcers
I "Bing-ed" Hunners Ulcers.... and this is what I got!
Put that in your family scrap album....
You are right... I am NOT feeling good today.
BaDing BaDing!
IC Update: Screaming with Pain!
Dave is annoyed I was posting my IC stuff on the family blog... so I am moving everything here. So.... boom.... everything is moved here, without a moving truck or one of those packing pods! Wow.... didn't even have to use my "That Was Easy" button!Wednesday, December 2, 2009
IC Update
Before I get s
tarted on this blog entry, I just want to say thanks to Dave for so many things in my life. But, the number one thing I am thankful for right this very minute is this tiny lap top that is my communication and record keeper. I'm so lucky to be leaning back in my recliner with the lap top on a BIG pillow right next to my face. There are blessings everywhere!!!I've had some very terrible FLARE UP days... Dave has been trying to help with the Hepran Treatments... not as easy as it looks! Terribly terribly terribly painful... Yes, I was screaming in pain again... I wanted to run, just run as fast as I could... get away from the pain.
Took several hours for the pain to subside. Nightime was just aweful, spent a lot of time in the recliner, in the bathroom... documenting my nightime adventures. Then I had to get up and go to work...
Teaching school is not something you can just call in and say "I'm sick!" I haven't felt good enough to be ready to teach each day, the day before or the day after. I'm lucky to get to school on time and figure out what to do with these kindergarten kidlets. They are so high skilled this year, I can't use the curriculum as it is written, I'm having to do a lot of creative lessons to keep them learning.
So, with all this pain...being up all night AGAIN... called Dr. Stout and went in to see her this AM..another trip to SLC---- hate, hate, hated the drive!!! Pain!! I AM FOLLOWING THE IC DIET! Could it be stress? NO.... My bladder is still raw, very raw.... and everything going through down there just hurts. It just hurts bad.
Results of the 9:30 AM Emergency Dr.'s Office Visit:
UTI ---I have a true UTI -- rare for me with these treatments. (See added meds above)
SURGERY ---I need another hydroextension surgery scheduled for December 11th.
PELVIC MRI --- December 4th Davis Hospital 8:15 AM
UPDATE: No tumors.... good news!
TREATMENT --- Friday December 4th 11:00 AM --- Murray
SURGICAL FOLLOW UP --- 4:00 PM January 4th.
And... we're off and running my friend. Running and running and running and running (I see a pattern here!) It's been a very long day. I'm going to say my prayers, take meds... and really really really try to not go to the bathroom more than 2 times during my sleep time! That would be a blessing.
Monday, November 30, 2009
What's in Your Ice Box?
I.....C....!
Get it?
IC?
ohhhh yeah! I....C !
It's for all that Vulva PAIN down there! Yikes!
Sunday, November 29, 2009
Throw out Perfectness!
You know... I've never let myself get this cluttery before. In fact, I've been a little on the perfecionistic side of life.... but, I've since learned that perfectness is over-rated! Funny.... OMGosh-les....My OCD turned into IC !!!!
When the lady of the home is in a flare.......... she doesn''t clean up after herself. And... hey.... I'm feeling comfortable with it this way.... and, yes! I cleaned up just a little before the photos! Hey, I admitted it! Now, give me a break cause I don't FEEL LIKE CLEANING UP~~~ and I'm OK with it if you are! And, if you're not, I'm still okay with it.
I love HOME!
No, you cannot see inside the refrigerator!!! LOL
Friday, November 27, 2009
Breakin' out for a Movie!!!
I'm probably the last woman in the family to see New Moon! Well, Annie tied with me! Anyhoo... I'd felt terrible all day today. Andelyn wanted to go see New Moon terribly bad, and she didn't want to go alone. We'd hoped to go with Kychelle, but she was exhausted from being up most of the night with Zeke (who doesn't like to sleep!) I wasn't sure I could make it through a 2 hour movie. But.... I took 2 different pain pills, a muscle relaxer, lidocane...wore stretchy comfy pants... and off we went.
** Did you know that people are wearing appropriate comfy jammies and bringing pillows and blankets to the indoor movies? Awesome! Just a note for next time!
We sat where I could have 2 seats... I took both of them, lying down!!! I only had to get up 4 times (potty & standing breaks!) I was so drugged out by the end of the movie, I couldn't drive home!!!! The movie was awesome! I think I've joined the Edward team...sorry Jacob....wait...I adore Jacob too, ah Bella, we are both in trouble!
I cried (well, actually I sobbed) all the way home, not because of the movie.... because of these silly dang drugs....they make me feel so depressed.
Thanks Andelyn & Kychelle for encouraging me to go, even when I didn't feel like I could. It was good for me to do something fun, stone drugged out of my mind...but FUN. LOL
IC Therapy... Mine!
OMaGoodness! This makes me feel INSANE! But, all in all, I am Thankful this Thanksgiving for Medical Science.... Here we go............ Yes, everything in the photographs I take for Interstitial Cystitis. I've put these on my website so I can remember what I'm taking each med for and so I can print it out when I go to the doc's...cause they always want to know "What meds are you taking?" LOL
Along with the meds... I will begin Physical Therapy for Pelvic Floor Spasms at Salt Lake Regional Hospital (I feel like I am having a baby contraction all day long!!! Funny eh?) in January...waiting on $$$ to pay for the treatment. As you can guess, these meds don't come cheap every month. My insurance has been fighting me on many of them... sometimes I don't even get a full months worth with one copay...but that's another battle for another time.
My PT: Laurie Colosimo
I can't wait to get started with optimism I will feel better in time...xoxox
In August I had the Hydrodistention Procedure . Surgery for IC...FUN!
Update: Dec. 11, 2009 2nd Hydrodistention Procedure. Not as helpful.
Prescribed Meds:
January 4, 2009 UPDATE:
Neurontin 100 mg 3X/day
Urella Replacing Peridium
Liodocaine/Prilocaine 2.5% ea
Topical Pain Reliever
Apply A Pea-sized amount 2/daily
Elmiron 100 Mg...
IC Medication
2 Capsules on an empty stomach AM and 2 Capsules on an empty stomach PM.
Nitrofurantin Macrobid 100 Mg
For Infection Precautions
1 Capsule prior to Catherization
Hyomax-Sl 0.125 Mg
For Bladder Spasm & Pain
1 Tablet 2-3/per day
Hydrocodine/Apap 500Mg
For Pain
1-2 Tablets every 4-6 hours
Promethazine 25 Mg
Nausea
1 Tablet every 6 Hours as needed for Nausea
Cyclobenzaprine Hydrochloride 10mg
Pelvic Floor Spasms/Muscle Relaxant
1 tablet every 4-6 hours
Amitriptylin 10 Mg
Low grade Anti-depresant to help with sleep.
1 Tablet nightly at bedtime
Phenazopyridine 200 mg
For Urethra/Vaginal Burning & Pain
1 Tablet every 8 hours as needed
Bupivacaine 10ML
Bladder Treatment
Mix as Coctail - Insert through Catherter Into Bladder Daily or as needed for Pain
Heparin Sodium Injection 10,000 USP Units/ML
Bladder Treatment
Mix as Coctail - Insert through Catherter Into Bladder Daily or as needed for Pain
8.4% Sodium Bicarbonate Injectable 50mL
Bladder Treatment
Mix as Coctail - Insert through Catherater Into Bladder Daily or as needed for Pain
Premarin Vago .625 mg
Insert 1 grm 2/week
Vaginal Strength & Pain
OVER the Counter:
Prelief
Takes acid out of foods
2-3 Tablets at meals
Acacia Fiber
Daily for Irritable Bowel Syndrom
Specially developed for IC Patients
All this medication plays havic on the digestive system and being constipated is a daily event! Yahoo for Me! LOL
A Prescription Medication that is NOT for IC that I take:
Alendronate Sodium 70 mg
** (Just a Note:) This was the only prescription medication I took on a regular basis before being diagnosed with IC in July.)
1 Tablet Weekly 30 Minutes before eating
For Bone Health
Vitamins/Supplements... MOST are off limits.
These are the ones that I can take without too much distress:
Vitamin B12
Vitamin D
Vitamin E
Calcium
Thursday, November 26, 2009
The Tinkerbell Philosophy
The Tinkerbell Philosophy:
The Universe sprinkles us with it's own special fairy dust every day, giving us fun imaginations, happiness and compassion! It floats onto those we're around, onto the ground for others to pick up and into our hearts to lighten our load. Stretch out your arms so that you can gather the most ...fairie dust to start your day....so you can give more throughout the day. It's simple, really.
Coping: I Can Do This
Today, no matter what the world throws your way take a moment to decide, 'How will I respond?'. Calm wisdom always trumps quick judgement! You can do this....you're meant to do this....you have everything you need, IN THIS MOMENT, to make any decision. Take a deep breath, settle your thoughts, detach from the outcome, and step into your authentic self!
Wednesday, November 25, 2009
Your Spirit is Tapping
Hey there....Your spirit is tapping you on the shoulder, reminding you to pay attention to her, love her, laugh with her. She's just waiting for you to consult with her and include her in your day. What's really amazing is that even when you ignore your beautiful spirit, she's still there...patiently waiting for you ...to take notice of the positive energy and love she offers freely. Give her a hug, would you?!Tranquility Circle
Received this from a FB FRIEND... really needed it today, and everyday.
HUGGLES!!!
Tuesday, November 24, 2009
It's Your Life
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| Make a Smilebox slideshow |
So many moments my IC day can bring me DOWN ... So I created a little Smilebox reminding me of those I love.... the family in my life who I need to stick around for. I don't have to be everything to everyone... I just have to be here..............and not there! Thanks for letting me share my family with you!
I'd like to make a smile box of my friends... I've had some very loyal ones (one very special one SM!) over the years, and with this IC JOURNEY have made more friends--- who have IC like me! I love all of you so much... you'll never know how comforting it is to have friends like YOU.
Huggles & Kissels
Monday, November 23, 2009
Keep Climbing
The Climb Songwriters: Alexander, J; Mabe, J;
I can almost see it
That dream I am dreaming
But there's a voice inside my head saying
"You'll never reach it"
Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking
But I gotta keep trying
Gotta keep my head held high
There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb
The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking
I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going
And I, I got to be strong
Just keep pushing on
'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!
There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Somebody's gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!
Keep on moving, keep climbing
Keep the faith, baby
It's all about, it's all about the climb
Keep the faith, keep your faith, whoa
Sunday, November 22, 2009
Friends with IC Talk About Their Journey
Ilana
hi there new to the group, was diagnosed 2yrs ago. on Elmiron and flomax. Have trouble empting my bladder, have not had a cystoscopy. Have a lot of trouble sleeping because of the discomfort.
Angela
Had my cystoscope and hydrodistension plus my dr biospoied 2 ares in my bladder. I do have IC and she put me on Elmiron. Man I hope this works.
Amanda
Having my interstem implanted on Thursday everyone wish me luck!!!
Elisha
Hello! New to group- 3 months into IC. Elmiron/Rimso have failed and my doctor wants me to do a week of bladder rest and HEAVY antibiotics before next steps. I'm looking to see if anyone else has a combo of IC and Crohn's Disease? I also have Parkinson's, but I don't think this is affecting it. Any sharing of info...rmation would be GREAT! I'm only 32 and had accepted the pain that goes with Crohn's and the tremors of Parkinson's, but this third one is tough! Thank you!
Elizabeth
It takes time to notice the positive effects of RIMSO aka DMSO instills. For me it too about a year to 18 months of having them every 6 weeks.
November 17 at 10:31pm.
Lori
anyone has had success with the interstem? been through treatmeants for years had the cystoscopy/hydrodistension several times, the last one to me made things worst, now they are talking about the interstem, i have chronic pelvic pain and have the hunner ulcers, that god i have a understanding husband. all i know is i ...cant take the pain anymore and willing to trying anything, little afaid of an object placed inside of me... anyone has it and had success please let me know
Annon
Can someone please help me? I need advice on talking to my husband about all this. Our relationship is going down the tube... intercourse hurts... Although he went with me to my UR appt when I was diagnosed with IC... he still says I can't be hurting that bad. When I try to get him to read about IC... he just says h...e's read about it. We've been married for 23 years! IC has turned me into a different person, so depressed and I hate me
now. My dad wonders where I went. I wonder where I went. Any advice?
ADVICE.....
Tracy It sounds like you're having pain most of the time like a lot of us. If your uro just has you on Elmiron, you need to talk to him about giving you something else to help you function. The Elmiron is a gamble. Some people have amazing results and others (like me) have no results at all. My uro told me it could actually take more than a year to ... Read Moresee if it helps. As for your husband, he really needs to understand that he needs to be your partner in fighting this disease. You didn't ask for this and would certainly change things if you could. It's so important that he supports you and understands when you're in pain. Maybe you could try having your doc talk to him, or there are even books and sections of books about how tough it is being the spouse of someone with this chronic disease. It's tough on them because they have to watch you suffer knowing that they can't do anything but support you. My husband rubs my lower back when I'm having a really bad day. I... Read More'm lucky that sex doesn't hurt me (anymore than I hurt normally!) But, he's gotten so in tune with me, that he can tell by how I'm sitting, rocking, looks on my face, that he knows when I'm having a worse than normal day. I'd be lost without his amazing support. Let us know how it goes.
Venus
My husband didnt understand the magnitude of pain we go through. I downloaded some information that SPECIFIcALLY spoke to the kind of pain we go through and he started to understand. Understanding Chronic pains is the first step. I am sorry he dosent have your back at this time....but he will come around. XOOXOX
Jennifer
Having IC and going through the frustration and pain alone is enough to make you feel lost. Having to sustain a relationship on top of it all is even more difficult. I am lucky that my husband understands, but we have to communicate clearly. It does take a long time for Elmiron to have any effect. You may still have pain, but there are many ... Read Moredifferent treatment methods. It is important to explore the options, and if your doctor throws up his hands and tells you he/she can't do any more, then keep looking for a new doctor! That's what happened to me. I now drive an hour to see my doctor, but he has changed my life...for the better. I have finally found what works for me- a combo of medicines, physical therapy and daily stretching, etc. You need to track your treatments and diet carefully to find out what works for you. Don't give up! Consider finding someone to talk to, like a therapist. The emotional side of this issue can't be overlooked.
Amanda
Im gonna be very very staight up with u about this. First this disease isn't ur fault and u didnt do anything to cause this to happen!! Second this is something that doesn't have a cure and the amount of pain and pressure along with stress that we have to deal with is enough!! I need to tell u that u are going have to stand up very stong when it ... Read Morecomes to this problem u are having with ur husband! It sounds like u two have been together for a really long time and he should have a good understanding aobut how u normally would act when it comet to the sex part of ur relationship. Idk if u have this already but pelvic floor dysfunction can become something u will have to deal with also if you are not very very careful!!! Your muscles in your plelvic floor are what also control your bladder. If you allow yourself to be put in the situation where u feel like if you don't do something sexual that its going to cause some problems in your relationship he needs a serious attitude check!!!! If you allow this to happen it could end up being where Im at now. I haven't been able to have sex in over a year because I done that myself. I have to go to physical therapy once a week just for this and its not something a person really wants to do. Im lucky that I have someone I truly like and trust. But I also have to get what they call trigget point injections every other week put into my virgina. Its not pleasant and its not something that u want to go thru. So either he can except that your going to have times your not going to be able to do anything or he will never be able to do anything. Tell him what I have just told u! Ask him if he want to have to see u go thru all of this or if he can love and respect u enough to understand that when u say it hurts and u can't that u don't I guess I have a very strong opinion about this but it is very very serious! There isn't anything any worse than not being able to do anything! If u do allow this to happen u will regret it for the rest of ur life trust me. If he has any questions or would like to talk to me I would be willing to help u with this. I don't want to see anyone allow what I did to happen to them! Good luck and if u need some support or have any more questions feel free to email me or talk to me on here. Im more than willing to help!!!
Tara
Hi. I am new to this page....Has anyone had a cystoscopy/hydrodistension with biopsy and willing to tell me about it? If so, please message me. My first is coming up and I am scared to death.
ADVICE:
Faye
I did and it put me in remission for 3 years. However, I did not have the biopsy part. They put me under to do it since it is so painful.
ANONOMOUS...
I had the procedure under local anthesia on August 28th. Biopsy wasn't necessary. I felt pretty great for almost 2 months... now I am back to having all the flareups...DANG IT.
Tracy
I had this done many times and have since stopped because the procedure caused more pain than it helped. I had the biopsy and it will make you more sore than without it. Obviously, if you take tissue which is injured and stretch it to the point where it causes mild bleeding, there is going to be some residual pain and soreness. For some women, I... Read More know that the distention has been a godsend. It just never helped for me. Maybe because my main symptom is pain. My frequency is totally manageable, only about 12-14 times per day. Good luck to you. It will be over before you know it!
Noreen
Am new to this site but have been diagnosed for five years. It was a blessing just to have a name to put with the pain. My doctor has started Bladder Instillations which work very well. It's an Elmiron cocktail. I travel a great deal, to visit my grandchildern who live out of state. SInce I've be doing the instill...ations, the IC attack that came with traveling is gone. I don't know anyone else who has this disease and it will be nice to be able to talk and share with others.
Amanda
Im getting the interstem implanted Monday anyone have any advice for me and do's and don'ts I need all the advice I can get!!!
ADVICE...
Tracy
I'm not sure where the implant goes with an interstim, but I know when I got my pain pump implant, I was surprised how sore I was. Mainly because you have the incision in front where they put it in, then they tunnel the tubing from the front, around your side to your back. Then one more small incision by the spine, so no matter which way I turned... Read More, lots of soreness! If it's anything like that, be prepared to take it really easy for about a week or so. Best of luck to you and I hope it works well!
Jonelyne
I have had the interstim implant now for over 12 years. For me it was a miracle for the urgency and frequency. Are you having the trial test implant Monday or the permanent implant? I had two incisions for my interstim. I had one incision in the lower back/spin and I had a second incision in the right side of the but for the implant.
Lori
im getting the interstim wed. very scared, this is the first site that had something possitive to say, i am frustrated, tired, and seem to have no life with the pain and frequency. i have tried every avenue and this seems to be the last result. very scared, but hoping for some relief, I also have I.C. with hunner ulcers and its a major task just to make a short trip, much less a long one. any advise would be great. thanks
Jonelyne
If you have IC the interstim takes care of the urgency and frequency. For me it did not take care of the pain. Because I was not going as often because there was no urgency/ frequency - the pain did decrease naturally. But there are still some days where I experience pain. The interstim helped me about 75% which that alone was a miracle.
Amanda
I had the first trial done on last Monday! I was not put under in any type of way. I will not lie I did cry and it did hurt. But it only too about fifteen min. I was so impressed about how long it took. I live around an hour and a half away from my doctors. I was stupid and tryed to be strong and stop with getting the meds and stuff even though I ... Read Morenever got out of the car. When I got home three hours later I had to be packed into my house. I was in terrible pain!! I hadn't taken anything but tylenol. Which I was already prescribed percocet which I would have used some common since I would have taken that right when we left the docs. Don't lay on ur back I did that first and screamed at the top of my lungs. Lay on ur sides. Put a pillow inbetween ur legs with a ice pack on ur privates and spot of incision!!! With a heating pad on ur upper back!! That is what helped me the most. The first day was rough! Second I slept all day long. Third I was up and going but still sore and finding out what I could and couldn't do!! Taking a bath suck sitting on side of tub worked for me with help. But make sure u do not scoot when sitting or getting up. Dont allow anyone to hit ur back or u will hit them back! LOL!! My frequency has already stopped!!! My pain has dropped about 10 percent which is understandable when I just had surgery!! I get the full implant done on Thursday!! I don't mind giving u more details then!! I do recommend getting this done. For one it has helped an two there isn't anything else out there for us to try which is a crying shame. I really hope all goes well with u. If u have any more questions I really don't mind try to help!! Good LUCK!!!
Jonelyne
Hi Lori. Sorry I haven't replied sooner. I have been really busy working. The trial is definitely very important. The interstim does not work for everyone. The success rates are different for everyone. I know that I only get 75% relief. Someone close to me only gets 50% relief. The trial is important because it gives you a chance to decide ... Read Moreif this surger is really something you want to do. It gives you the chance to see if it works for you. Interstim was not created for IC. It helps with urgency and frequency but does really help with pain. it depends on what your particular IC problems are. Everyone is different so everyone reacts to interstim differently.
I do not want to scare you and do not want to tell you what to do. I just want to wish you well and share my opinion. hope i didn't scare you.
Lori
no you didnt scare me, a lot of my problems are frequency, i have a lot of flare ups and nothing seems to work, diet, treatments, and procedures to stretch the bladder, i have the hunner ulcers, suffer a lot of pelvic pain, i am at the point of any relief is better than none. dont sleep at night because of the constance getting up. i am tired and ... Read Moreat of my wits end. i have put in a call to my doc about the trial and we will be talking about it more the morning of it... she did give me the option, i guess i just wanted it over so chose to do the full implant, but since have been thinkg about the trial first. I been going through this since 1996, although i think it was longer, i remember in 1987 i started feeling a lot of pain and urinating blood, but had no infections... i think in 96 they just put a name to it... thanks for your response, really appreicate it.. will let everyone know after wed. what i decided to do and how it goes....
Tracy
I was diagnosed over 20 years ago. Went through years of bladder instillations of every kind, distensions, self-catheterization, etc. My pain was almost always tremendously worse after anything was put into my bladder. After my 2nd son was born, I commented to my urologist that when they gave me my epidural for my c...-section, it was the first time since being diagnosed that I didn't have an ounce of pain. (My symptoms are chronic, never-ending bladder and lower back pain, just varying degrees, and of course frequency, although I could live with that.) After that comment, since we had tried every other treatment available with no success, I was referred to a pain doctor. I eventually got approved for a pain pump and again, had some success with that over about a 4 year period, but the effectiveness eventually was reduced to the point where I had it removed. I have learned to survive on pain medication and avoiding acidic foods.
Tamara
Just found this site, I was diagnosed over 25yrs ago after multiple tests and was in a IC research study for a few years. Have tried so many things, but Hydrodistensions are the only thing that has helped. I also found a physical therapist who specializes in women's pelvic issues. She has been great. She has given ...me some exercises that help some. Some times I can go for 1 yr between hydrodistentions and one time I went 8 yrs between treatments. I can mentally handle the frequency, after yrs of feeling the need to go every 30 min. you just learn to live your life around it. But, when the flare-ups start with the pain, burning, and knife-like pains when you walk, you just want to sit still and never move again. Which of course is not possible, so I've just scheduled my hydrodistension for Nov. I can't wait! Tonight for some reason, it's much worse. I'm interested in going out and getting the Marshmellow Root Capsules, never heard of those. This seems to be a great site!
Kimberly
I was diagnosed over 10 years ago. The pain was unbearable. I tried bladder instillations, Elmiron and finally anti depressants. I was on Paxil for years and the pain was bearable, I still had flare ups etc but nothing as bad as it was. Now I have been off paxil for 2 months and the pain is getting progressively worse,... I am missing work etc. I am a newlywed and should be enjoying this time of my life but instead I am miserable, any suggestions would be much appreciated. I have tried sound therapy and next week will try reiki, has anyone ever tried it?
Melissa
Has anyone tried the Botox Block for pain? I have tried almost every medication and feel like I'm running out of options. If you have any suggestions please message me. I'm willing to try anything because I'm so young and don't wanna be in pain forever!
Tracy
Almost 18 years ago, after trying all of the bladder cocktails, distention, self-catheterization, etc., I was ready for removal, I was totally desperate. (Doctor's weren't quite as compassionate about helping to relieve the pain back then, and I have constant pain, just at varying degrees.) My doc told me, and several have since told me that they ... Read Morevery seldom do bladder removals anymore because amazingly, sometimes some of the symptoms still persist. Nerve pain, fibromyalgia, etc. My understanding is that now they only do removal when the bladder has shrunk to an extremely small size due to scarring. Hope this helps.
Jennifer
Hi, I'm new to this group. Had to do something, today was horrible! I hate the days that are like this
Jacklyn
I am in so much pain today too... it makes me cry to have found IC on FaceBook... I need support and seeing everyone here is great. But, it seems like everyone is still suffereing and nothing seems to be helping... am I right? I hope there is hope at the end of the tunnel.
Tracy
For me, the biggest part of getting on with my life was actually accepting that I had this disease, then deciding I was going to be vigilant in fighting the pain associated with it. It has been a fight, that's for sure! However, after 20 years, I still work a full-time job, and have a semi-normal life. I lay down more that most people and am ... Read Moretired a lot because of the pain drugs, but I have a wonderful partner in my husband and our relationship has just strengthened over the years of dealing with this. My way of fighting IC is that most folks who know me don't even know I have it. I refuse to mope, whine, or complain. Of course I have my days, then I lean on my husband. It's like a small victory for me that the rest of the world hasn't a clue!
Audrey
I was diagnosed with ic 13 years ago after having it 15 years.I had seen many doctors over the years.They all told me it was in my head.I knew my body and I was not giving up.I requested a speciallist.I got one and remain to this day with the same one.My ic was a severe case.I now have a implant in my hip called a neur...o stimulator.It works great.Stops the pain,slows down the urgency and slows down the leaking.I still get flare ups pretty much every month.They last usually 5 to 7days.
usually about one day a month I have to take a muscle relaxer and a pain killer.I know mostly what I can eat and can't and drinks as well.Mine is quite bad so I have to be extra careful.I travel alot and airport likes to swab my remote control and touch my body all over by hand .Thats the only thing about traveling.
I still try new foods and drinks and i'm still realizing I can't have them.25 years I have lived with this nightmare.
Lauren
I was recently diagnosed a month ago after a year worth of pains. I'm taking Elmiron, Atarax (an antihistamine) along with my mom's RELIV supplements. Seems to be my lifesaver right now. My doctor said it may be hard with my diet and at first I thought I was in the clear. Spoke to soon, I came home this weekend from sc...hool to a yummy stir fry dinner, my favorite, just to find out a few hours later...it's not my favorite anymore :( I didn't realize how hard this may end up being...but having people a click away knowing I’m not alone is NICE!
Cynthia i have ic.......try not to eat any vegatablesthat are acidic. no peppers broccoli. white rice is good. i know chinse food isnt well on my bladder. chat soon.
Patty
What? I thought broccoli was on the GOOD food list. I've been eating it... are there other bad veggies.... I feel like my life was taken away when I stopped eating fruit... I miss it so much... I don't like too many veggies... I am gaining tons of weight and I'm just not eating good any more... alot of breads, pastas, rices...(I didn't eat them before)... I can't seem to find anything to eat... I am depressed... will this ever stop?
Carol
Hi Tanya - The Marshmallow Root does help me with the frequent urination and honestly, it makes my bladder feel 100% normal about 95% of the time. I only have problems maybe once every 6-8 months or so now. When I do have issues, I take pain medication for about 3 days and then I am normal again. You should try it and see if it works for you, I'm not sure if it works for everyone, I am just really happy with the results. It's about $9 for 100 capsules so it's not a real big investment.
Carol
I had several visits to the urologist over a period of 7 months with constant bladder pain. The doctor diagnosed me with IC in January and basically gave me a list of foods that I cannot eat and sent me on my way. Frustrated, I ended up reading the book "on the healing path" and took only onc piece of advice from the a...uthor (Catherine Simone) and have not had any symptoms since. If you haven't tried the MARSHMALLOW ROOT CAPSULES, please try them, I finally feel normal again! Also, buy this book, the author is not a doctor, she is a recovering IC patient.
Robin
has anyone else tried pain diversion therapy?
it's pretty bonkers but i must say it's been working.
my IC acts up right after i urinate. i get a horrible burning sensation and this awful feeling of urgency right after i urinate and it can last for hours. i've been using the method of applying peppermint essential oil t...o my vulva after urination. it's painful, not going to lie about it, but the burning of the vulva diverts my mind from the 'burning' (which i am convinced is "ghost" burning) in my bladder. the burning subsides in about 15-20 minutes and my bladder will have "forgotten" to hurt. nyone tried this? another girl i know used tea tree oil for the same purpose but it made her dry? anyone else with any other crazy ideas?
Robin
i was diagnosed officially on june 11, 2009 with IC after having a cystoscopy which showed that i have the condition (though this much was assumed with my doctor for roughly 2 years previous) and am currently taking elmiron, atarax (an antihistamine) and narcotic pills with codeine in them for when the pain is unbearab...le. caffeine is my enemy and so far i've had immense difficulty coming to terms with this disease and taking pills. i hate taking pills more than anything else. sending healing vibes to all my fellow sufferers of this bastard disease.
Sam
I have been suffering with IC for over 10 years and the pain can be unbearable, I have had many treatments and it has gone into remission, but it comes back with no warning! I'm in terrible pain at the moment and live on pain killers, I'm just waiting to see the uroligist again, I'm not sure why but it makes me feel li...ke I'm doing something about it. The frequency and urgency rules my life, always having to plan loo stops where ever I go, I feel for you all and send you lots of healing and love.x
Melissa I have been an IC patient for four years and counting without much relief. Debra although your cystoscopy came back normal it doesnt mean to say that you don't have IC. It means that the nerves surrounding your bladder may be damaged and it didn't show up. I have started elavil and neurontin and it is the only medicati...ons that have helped me with my pain. However the frequency continues. I have tried different treatment options like TENS and DMSO which worked for a while and eased the flare-ups but as we both know IC just doesnt quit. I am wondering though if anyone has used PROBIOTICS to help their IC. If so what name and brand is best to use?
Amanda
I was diagnosed in 2005 and just recently had another cystoscopy to confirm the diagnosis again. Its great to see a group on here. It gets lonely trying to cope with it.
Gwena
I was diagnosed with this in 1991. At the time there were only 400 known cases in the US, and 90% of us were women. It affects my job performance abilities, but going through another exam would be excruciating. I would rather suffer with the pain, and manage it through drinking lots of water and watching the amount ...of acidic foods I consume. (Also once I tried to use my ICA card to allow us to use restrooms, but the McDonald's in the bad part of town in Chicago would not have anything to do with that card; it did me no good. They made me purchase something just to use the restroom!)Thank you and God bless you with your efforts!
hi there new to the group, was diagnosed 2yrs ago. on Elmiron and flomax. Have trouble empting my bladder, have not had a cystoscopy. Have a lot of trouble sleeping because of the discomfort.
Angela
Had my cystoscope and hydrodistension plus my dr biospoied 2 ares in my bladder. I do have IC and she put me on Elmiron. Man I hope this works.
Amanda
Having my interstem implanted on Thursday everyone wish me luck!!!
Elisha
Hello! New to group- 3 months into IC. Elmiron/Rimso have failed and my doctor wants me to do a week of bladder rest and HEAVY antibiotics before next steps. I'm looking to see if anyone else has a combo of IC and Crohn's Disease? I also have Parkinson's, but I don't think this is affecting it. Any sharing of info...rmation would be GREAT! I'm only 32 and had accepted the pain that goes with Crohn's and the tremors of Parkinson's, but this third one is tough! Thank you!
Elizabeth
It takes time to notice the positive effects of RIMSO aka DMSO instills. For me it too about a year to 18 months of having them every 6 weeks.
November 17 at 10:31pm.
Lori
anyone has had success with the interstem? been through treatmeants for years had the cystoscopy/hydrodistension several times, the last one to me made things worst, now they are talking about the interstem, i have chronic pelvic pain and have the hunner ulcers, that god i have a understanding husband. all i know is i ...cant take the pain anymore and willing to trying anything, little afaid of an object placed inside of me... anyone has it and had success please let me know
Annon
Can someone please help me? I need advice on talking to my husband about all this. Our relationship is going down the tube... intercourse hurts... Although he went with me to my UR appt when I was diagnosed with IC... he still says I can't be hurting that bad. When I try to get him to read about IC... he just says h...e's read about it. We've been married for 23 years! IC has turned me into a different person, so depressed and I hate me
now. My dad wonders where I went. I wonder where I went. Any advice?ADVICE.....
Tracy It sounds like you're having pain most of the time like a lot of us. If your uro just has you on Elmiron, you need to talk to him about giving you something else to help you function. The Elmiron is a gamble. Some people have amazing results and others (like me) have no results at all. My uro told me it could actually take more than a year to ... Read Moresee if it helps. As for your husband, he really needs to understand that he needs to be your partner in fighting this disease. You didn't ask for this and would certainly change things if you could. It's so important that he supports you and understands when you're in pain. Maybe you could try having your doc talk to him, or there are even books and sections of books about how tough it is being the spouse of someone with this chronic disease. It's tough on them because they have to watch you suffer knowing that they can't do anything but support you. My husband rubs my lower back when I'm having a really bad day. I... Read More'm lucky that sex doesn't hurt me (anymore than I hurt normally!) But, he's gotten so in tune with me, that he can tell by how I'm sitting, rocking, looks on my face, that he knows when I'm having a worse than normal day. I'd be lost without his amazing support. Let us know how it goes.
Venus
My husband didnt understand the magnitude of pain we go through. I downloaded some information that SPECIFIcALLY spoke to the kind of pain we go through and he started to understand. Understanding Chronic pains is the first step. I am sorry he dosent have your back at this time....but he will come around. XOOXOX
Jennifer
Having IC and going through the frustration and pain alone is enough to make you feel lost. Having to sustain a relationship on top of it all is even more difficult. I am lucky that my husband understands, but we have to communicate clearly. It does take a long time for Elmiron to have any effect. You may still have pain, but there are many ... Read Moredifferent treatment methods. It is important to explore the options, and if your doctor throws up his hands and tells you he/she can't do any more, then keep looking for a new doctor! That's what happened to me. I now drive an hour to see my doctor, but he has changed my life...for the better. I have finally found what works for me- a combo of medicines, physical therapy and daily stretching, etc. You need to track your treatments and diet carefully to find out what works for you. Don't give up! Consider finding someone to talk to, like a therapist. The emotional side of this issue can't be overlooked.
Amanda
Im gonna be very very staight up with u about this. First this disease isn't ur fault and u didnt do anything to cause this to happen!! Second this is something that doesn't have a cure and the amount of pain and pressure along with stress that we have to deal with is enough!! I need to tell u that u are going have to stand up very stong when it ... Read Morecomes to this problem u are having with ur husband! It sounds like u two have been together for a really long time and he should have a good understanding aobut how u normally would act when it comet to the sex part of ur relationship. Idk if u have this already but pelvic floor dysfunction can become something u will have to deal with also if you are not very very careful!!! Your muscles in your plelvic floor are what also control your bladder. If you allow yourself to be put in the situation where u feel like if you don't do something sexual that its going to cause some problems in your relationship he needs a serious attitude check!!!! If you allow this to happen it could end up being where Im at now. I haven't been able to have sex in over a year because I done that myself. I have to go to physical therapy once a week just for this and its not something a person really wants to do. Im lucky that I have someone I truly like and trust. But I also have to get what they call trigget point injections every other week put into my virgina. Its not pleasant and its not something that u want to go thru. So either he can except that your going to have times your not going to be able to do anything or he will never be able to do anything. Tell him what I have just told u! Ask him if he want to have to see u go thru all of this or if he can love and respect u enough to understand that when u say it hurts and u can't that u don't I guess I have a very strong opinion about this but it is very very serious! There isn't anything any worse than not being able to do anything! If u do allow this to happen u will regret it for the rest of ur life trust me. If he has any questions or would like to talk to me I would be willing to help u with this. I don't want to see anyone allow what I did to happen to them! Good luck and if u need some support or have any more questions feel free to email me or talk to me on here. Im more than willing to help!!!
Tara
Hi. I am new to this page....Has anyone had a cystoscopy/hydrodistension with biopsy and willing to tell me about it? If so, please message me. My first is coming up and I am scared to death.
ADVICE:
Faye
I did and it put me in remission for 3 years. However, I did not have the biopsy part. They put me under to do it since it is so painful.
ANONOMOUS...
I had the procedure under local anthesia on August 28th. Biopsy wasn't necessary. I felt pretty great for almost 2 months... now I am back to having all the flareups...DANG IT.
Tracy
I had this done many times and have since stopped because the procedure caused more pain than it helped. I had the biopsy and it will make you more sore than without it. Obviously, if you take tissue which is injured and stretch it to the point where it causes mild bleeding, there is going to be some residual pain and soreness. For some women, I... Read More know that the distention has been a godsend. It just never helped for me. Maybe because my main symptom is pain. My frequency is totally manageable, only about 12-14 times per day. Good luck to you. It will be over before you know it!
Noreen
Am new to this site but have been diagnosed for five years. It was a blessing just to have a name to put with the pain. My doctor has started Bladder Instillations which work very well. It's an Elmiron cocktail. I travel a great deal, to visit my grandchildern who live out of state. SInce I've be doing the instill...ations, the IC attack that came with traveling is gone. I don't know anyone else who has this disease and it will be nice to be able to talk and share with others.
Amanda
Im getting the interstem implanted Monday anyone have any advice for me and do's and don'ts I need all the advice I can get!!!
ADVICE...
Tracy
I'm not sure where the implant goes with an interstim, but I know when I got my pain pump implant, I was surprised how sore I was. Mainly because you have the incision in front where they put it in, then they tunnel the tubing from the front, around your side to your back. Then one more small incision by the spine, so no matter which way I turned... Read More, lots of soreness! If it's anything like that, be prepared to take it really easy for about a week or so. Best of luck to you and I hope it works well!
Jonelyne
I have had the interstim implant now for over 12 years. For me it was a miracle for the urgency and frequency. Are you having the trial test implant Monday or the permanent implant? I had two incisions for my interstim. I had one incision in the lower back/spin and I had a second incision in the right side of the but for the implant.
Lori
im getting the interstim wed. very scared, this is the first site that had something possitive to say, i am frustrated, tired, and seem to have no life with the pain and frequency. i have tried every avenue and this seems to be the last result. very scared, but hoping for some relief, I also have I.C. with hunner ulcers and its a major task just to make a short trip, much less a long one. any advise would be great. thanks
Jonelyne
If you have IC the interstim takes care of the urgency and frequency. For me it did not take care of the pain. Because I was not going as often because there was no urgency/ frequency - the pain did decrease naturally. But there are still some days where I experience pain. The interstim helped me about 75% which that alone was a miracle.
Amanda
I had the first trial done on last Monday! I was not put under in any type of way. I will not lie I did cry and it did hurt. But it only too about fifteen min. I was so impressed about how long it took. I live around an hour and a half away from my doctors. I was stupid and tryed to be strong and stop with getting the meds and stuff even though I ... Read Morenever got out of the car. When I got home three hours later I had to be packed into my house. I was in terrible pain!! I hadn't taken anything but tylenol. Which I was already prescribed percocet which I would have used some common since I would have taken that right when we left the docs. Don't lay on ur back I did that first and screamed at the top of my lungs. Lay on ur sides. Put a pillow inbetween ur legs with a ice pack on ur privates and spot of incision!!! With a heating pad on ur upper back!! That is what helped me the most. The first day was rough! Second I slept all day long. Third I was up and going but still sore and finding out what I could and couldn't do!! Taking a bath suck sitting on side of tub worked for me with help. But make sure u do not scoot when sitting or getting up. Dont allow anyone to hit ur back or u will hit them back! LOL!! My frequency has already stopped!!! My pain has dropped about 10 percent which is understandable when I just had surgery!! I get the full implant done on Thursday!! I don't mind giving u more details then!! I do recommend getting this done. For one it has helped an two there isn't anything else out there for us to try which is a crying shame. I really hope all goes well with u. If u have any more questions I really don't mind try to help!! Good LUCK!!!
Jonelyne
Hi Lori. Sorry I haven't replied sooner. I have been really busy working. The trial is definitely very important. The interstim does not work for everyone. The success rates are different for everyone. I know that I only get 75% relief. Someone close to me only gets 50% relief. The trial is important because it gives you a chance to decide ... Read Moreif this surger is really something you want to do. It gives you the chance to see if it works for you. Interstim was not created for IC. It helps with urgency and frequency but does really help with pain. it depends on what your particular IC problems are. Everyone is different so everyone reacts to interstim differently.
I do not want to scare you and do not want to tell you what to do. I just want to wish you well and share my opinion. hope i didn't scare you.
Lori
no you didnt scare me, a lot of my problems are frequency, i have a lot of flare ups and nothing seems to work, diet, treatments, and procedures to stretch the bladder, i have the hunner ulcers, suffer a lot of pelvic pain, i am at the point of any relief is better than none. dont sleep at night because of the constance getting up. i am tired and ... Read Moreat of my wits end. i have put in a call to my doc about the trial and we will be talking about it more the morning of it... she did give me the option, i guess i just wanted it over so chose to do the full implant, but since have been thinkg about the trial first. I been going through this since 1996, although i think it was longer, i remember in 1987 i started feeling a lot of pain and urinating blood, but had no infections... i think in 96 they just put a name to it... thanks for your response, really appreicate it.. will let everyone know after wed. what i decided to do and how it goes....
Tracy
I was diagnosed over 20 years ago. Went through years of bladder instillations of every kind, distensions, self-catheterization, etc. My pain was almost always tremendously worse after anything was put into my bladder. After my 2nd son was born, I commented to my urologist that when they gave me my epidural for my c...-section, it was the first time since being diagnosed that I didn't have an ounce of pain. (My symptoms are chronic, never-ending bladder and lower back pain, just varying degrees, and of course frequency, although I could live with that.) After that comment, since we had tried every other treatment available with no success, I was referred to a pain doctor. I eventually got approved for a pain pump and again, had some success with that over about a 4 year period, but the effectiveness eventually was reduced to the point where I had it removed. I have learned to survive on pain medication a
nd avoiding acidic foods.Tamara
Just found this site, I was diagnosed over 25yrs ago after multiple tests and was in a IC research study for a few years. Have tried so many things, but Hydrodistensions are the only thing that has helped. I also found a physical therapist who specializes in women's pelvic issues. She has been great. She has given ...me some exercises that help some. Some times I can go for 1 yr between hydrodistentions and one time I went 8 yrs between treatments. I can mentally handle the frequency, after yrs of feeling the need to go every 30 min. you just learn to live your life around it. But, when the flare-ups start with the pain, burning, and knife-like pains when you walk, you just want to sit still and never move again. Which of course is not possible, so I've just scheduled my hydrodistension for Nov. I can't wait! Tonight for some reason, it's much worse. I'm interested in going out and getting the Marshmellow Root Capsules, never heard of those. This seems to be a great site!
Kimberly
I was diagnosed over 10 years ago. The pain was unbearable. I tried bladder instillations, Elmiron and finally anti depressants. I was on Paxil for years and the pain was bearable, I still had flare ups etc but nothing as bad as it was. Now I have been off paxil for 2 months and the pain is getting progressively worse,... I am missing work etc. I am a newlywed and should be enjoying this time of my life but instead I am miserable, any suggestions would be much appreciated. I have tried sound therapy and next week will try reiki, has anyone ever tried it?
Melissa
Has anyone tried the Botox Block for pain? I have tried almost every medication and feel like I'm running out of options. If you have any suggestions please message me. I'm willing to try anything because I'm so young and don't wanna be in pain forever!
Tracy
Almost 18 years ago, after trying all of the bladder cocktails, distention, self-catheterization, etc., I was ready for removal, I was totally desperate. (Doctor's weren't quite as compassionate about helping to relieve the pain back then, and I have constant pain, just at varying degrees.) My doc told me, and several have since told me that they ... Read Morevery seldom do bladder removals anymore because amazingly, sometimes some of the symptoms still persist. Nerve pain, fibromyalgia, etc. My understanding is that now they only do removal when the bladder has shrunk to an extremely small size due to scarring. Hope this helps.
Jennifer
Hi, I'm new to this group. Had to do something, today was horrible! I hate the days that are like this
Jacklyn
I am in so much pain today too... it makes me cry to have found IC on FaceBook... I need support and seeing everyone here is great. But, it seems like everyone is still suffereing and nothing seems to be helping... am I right? I hope there is hope at the end of the tunnel.
Tracy
For me, the biggest part of getting on with my life was actually accepting that I had this disease, then deciding I was going to be vigilant in fighting the pain associated with it. It has been a fight, that's for sure! However, after 20 years, I still work a full-time job, and have a semi-normal life. I lay down more that most people and am ... Read Moretired a lot because of the pain drugs, but I have a wonderful partner in my husband and our relationship has just strengthened over the years of dealing with this. My way of fighting IC is that most folks who know me don't even know I have it. I refuse to mope, whine, or complain. Of course I have my days, then I lean on my husband. It's like a small victory for me that the rest of the world hasn't a clue!
Audrey
I was diagnosed with ic 13 years ago after having it 15 years.I had seen many doctors over the years.They all told me it was in my head.I knew my body and I was not giving up.I requested a speciallist.I got one and remain to this day with the same one.My ic was a severe case.I now have a implant in my hip called a neur...o stimulator.It works great.Stops the pain,slows down the urgency and slows down the leaking.I still get flare ups pretty much every month.They last usually 5 to 7days.
usually about one day a month I have to take a muscle relaxer and a pain killer.I know mostly what I can eat and can't and drinks as well.Mine is quite bad so I have to be extra careful.I travel alot and airport likes to swab my remote control and touch my body all over by hand .Thats the only thing about traveling.
I still try new foods and drinks and i'm still realizing I can't have them.25 years I have lived with this nightmare.
Lauren
I was recently diagnosed a month ago after a year worth of pains. I'm taking Elmiron, Atarax (an antihistamine) along with my mom's RELIV supplements. Seems to be my lifesaver right now. My doctor said it may be hard with my diet and at first I thought I was in the clear. Spoke to soon, I came home this weekend from sc...hool to a yummy stir fry dinner, my favorite, just to find out a few hours later...it's not my favorite anymore :( I didn't realize how hard this may end up being...but having people a click away knowing I’m not alone is NICE!
Cynthia i have ic.......try not to eat any vegatablesthat are acidic. no peppers broccoli. white rice is good. i know chinse food isnt well on my bladder. chat soon.
Patty
What? I thought broccoli was on the GOOD food list. I've been eating it... are there other bad veggies.... I feel like my life was taken away when I stopped eating fruit... I miss it so much... I don't like too many veggies... I am gaining tons of weight and I'm just not eating good any more... alot of breads, pastas, rices...(I didn't eat them before)... I can't seem to find anything to eat... I am depressed... will this ever stop?
Carol
Hi Tanya - The Marshmallow Root does help me with the frequent urination and honestly, it makes my bladder feel 100% normal about 95% of the time. I only have problems maybe once every 6-8 months or so now. When I do have issues, I take pain medication for about 3 days and then I am normal again. You should try it and see if it works for you, I'm not sure if it works for everyone, I am just really happy with the results. It's about $9 for 100 capsules so it's not a real big investment.
Carol
I had several visits to the urologist over a period of 7 months with constant bladder pain. The doctor diagnosed me with IC in January and basically gave me a list of foods that I cannot eat and sent me on my way. Frustrated, I ended up reading the book "on the healing path" and took only onc piece of advice from the a...uthor (Catherine Simone) and have not had any symptoms since. If you haven't tried the MARSHMALLOW ROOT CAPSULES, please try them, I finally feel normal again! Also, buy this book, the author is not a doctor, she is a recovering IC patient.
Robin
has anyone else tried pain diversion therapy?
it's pretty bonkers but i must say it's been working.
my IC acts up right after i urinate. i get a horrible burning sensation and this awful feeling of urgency right after i urinate and it can last for hours. i've been using the method of applying peppermint essential oil t...o my vulva after urination. it's painful, not going to lie about it, but the burning of the vulva diverts my mind from the 'burning' (which i am convinced is "ghost" burning) in my bladder. the burning subsides in about 15-20 minutes and my bladder will have "forgotten" to hurt. nyone tried this? another girl i know used tea tree oil for the same purpose but it made her dry? anyone else with any other crazy ideas?
Robin
i was diagnosed officially on june 11, 2009 with IC after having a cystoscopy which showed that i have the condition (though this much was assumed with my doctor for roughly 2 years previous) and am currently taking elmiron, atarax (an antihistamine) and narcotic pills with codeine in them for when the pain is unbearab...le. caffeine is my enemy and so far i've had immense difficulty coming to terms with this disease and taking pills. i hate taking pills more than anything else. sending healing vibes to all my fellow sufferers of this bastard disease.
Sam
I have been suffering with IC for over 10 years and the pain can be unbearable, I have had many treatments and it has gone into remission, but it comes back with no warning! I'm in terrible pain at the moment and live on pain killers, I'm just waiting to see the uroligist again, I'm not sure why but it makes me feel li...ke I'm doing something about it. The frequency and urgency rules my life, always having to plan loo stops wh
ere ever I go, I feel for you all and send you lots of healing and love.xMelissa I have been an IC patient for four years and counting without much relief. Debra although your cystoscopy came back normal it doesnt mean to say that you don't have IC. It means that the nerves surrounding your bladder may be damaged and it didn't show up. I have started elavil and neurontin and it is the only medicati...ons that have helped me with my pain. However the frequency continues. I have tried different treatment options like TENS and DMSO which worked for a while and eased the flare-ups but as we both know IC just doesnt quit. I am wondering though if anyone has used PROBIOTICS to help their IC. If so what name and brand is best to use?
Amanda
I was diagnosed in 2005 and just recently had another cystoscopy to confirm the diagnosis again. Its great to see a group on here. It gets lonely trying to cope with it.
Gwena
I was diagnosed with this in 1991. At the time there were only 400 known cases in the US, and 90% of us were women. It affects my job performance abilities, but going through another exam would be excruciating. I would rather suffer with the pain, and manage it through drinking lots of water and watching the amount ...of acidic foods I consume. (Also once I tried to use my ICA card to allow us to use restrooms, but the McDonald's in the bad part of town in Chicago would not have anything to do with that card; it did me no good. They made me purchase something just to use the restroom!)Thank you and God bless you with your efforts!
Thursday, November 19, 2009
Butt Carpol Tunnel
Maybe this is what I have?
I wish I could figure out the puzzle I am in... I hurt! Bad. Ok. I'm done! Sorry.
Tuesday, November 17, 2009
Email Friends and Family
HERE IS A COPY OF THE EMAIL I SENT TO MY FAMILY...
Hello Family,
I have been working on this email for a couple of days. I hope this communication helps everyone understand me better. I apologize for it being so long. I have read it over and over again, shortening it up where ever I can. LOL
First, I want to thank you all for your love. I feel your love everyday. I feel lucky to have the family I have. I can't even imagine what my life would be like if I had some of the problems other people face every day... I have the best! I am so grateful for you.
As you know I have not been feeling so good. I have not been myself, and I am trying to find some physical pain relief ....The facts are I have IC (Interstitial Cystitis) and PDF (Pelvic Floor Dysfunction). I probably have had these for several years, I've noticed small symptoms along the course of time, but over the past year and a half my pain has become more than I can handle on my own. It took almost a year and a half of tests, painful days and nights, feeling like I am going crazy, and many doctor's visits before I got my diagnosis. I have felt angels with me along the way.
I realize most people don't understand what I am dealing with, how they can support me. At first I was in denial, "I will be different that most people with IC & PDF." Hahah! I'm not different. I have an auto immune disease. I have to learn about it, ways to cope.
Here is a site that has several videos that might help you understand. Please, PLEASE take some time to watch them, I need family support through the days and months ahead. If you start with the Dr. visit one, it will tell you alot about my symptoms. I have most of the symptoms she is talking about... dang it! I just watched these video's a couple of days ago ... and I was in tears realizing my symptoms are real. I thought I was going CRAZY. I'm not crazy.... yeah... I'm not crazy. LOL
http://www.ic-network.com/videos/
You will need to scroll down to select and view the videos. This lady (my friend), Jill, is IC's support group leader. She is an angel in my life. I have been frequenting this online support group over the past couple of months. Jill has answered several of my questions personally via email, and has been there at those times I was on the edge of sanity. These videos have recently been uploaded this week to the support site. Yahoo!!! I feel so blessed. I am also in contact with several people via FaceBook who are good listeners and support. I am so very happy to have this kind of support, not only for myself but for those I love to help them understand. What a blessing technology is to us in so many good ways!
It is very hard to explain how I am feeling, especially because I look perfectly healthy on the outside. People think just because I look okay, I am okay. I'm not okay. When people ask how I am doing, I just say ok...or fine. I don't complain out loud how much pain I am in. There is pain almost all the time. And then there are the FLARE UPs... I just go hide under a blanket, or in the bathroom when those occur... I generally keep it to myself. It doesn't help to complain about it. All I know is that I hurt, I feel sick, and I just have to wait it out most of the time. I get so very excited when I have those few good moments --- that's when I do as much FUN stuff as I can, cause those "good" moments don't come that often and they don't seem to last that long. I just try to keep moving along through the day the best I can.
It is going to take some time for me to get feeling better ... it won't happen in a few weeks, but probably (hopefully) months from now, I will learn what I need to do to minimize the pain and flareups... they will never go away. There are a lot of changes in life I am having to make... I have to find these changes through trial and error, as challenges for people with IC & PDF are not all the same. The errors bring with it lots of PAIN that lasts for days for me. I have a lot of sleepless nights, and very long days. I try to be so quiet at night so others can get the sleep they need. I'm finding ways to get out of bed without making a sound!
I have my 6 weeks check up with my URO tomorrow. The Elmiron meds aren't working for me yet... research shows it could be 6-12 months.....we'll see what the doc says.
The best support I can get right now is everyone giving me time to sort this out, time to take care of me. The hardest thing I do is try to explain to people what is going on ... I can't sit and visit. Riding in a car is very PAINFUL. Sitting is painful. Walking and standing is painful. I am happy that our Chino Family moved closer to home, the plane rides were almost more than I could take. I was sitting by the exit door on the last flight and I had to keep telling myself opening the door would be more painful than holding myself together. I did a lot of image therapy, and when we landed I was the first person out of my seat! There are many things in life that are hard for me right now. I am sad to say, holding my little grandbabies for too long can get very painful (okay! That made me cry!.) I love, love LOVE holding my grandbabies. I love my family so much, and closeness is important to me, I just have to figure it all out so I can have that closeness.
Please know that I am working on things the best I can, I am optimistic I will begin to minimize these FLARE UPS over time. It's not easy, I am finding out ... and people with IC and PFD have to work on it every single minute of every day, for the rest of their life. Right now, for me it is like having a 2nd job with all the research, food and pain monitoring.... I should have been keeping a pain and food diary but I don't feel good enough to keep up on that...yuck! I will need to start this diary to get some answers. This is not something I wished for. I hate that I have pain pill bottles in the largest bottle available to mankind! I am on medicationssssssssss...and I hate that! I don't use the word hate often, so you know it is something very emotional for me. I take a half a pain pill when I can't stand the pain any longer. I will NOT get addicted to these drugs. I will find a way out of this. I will.
Thanks for your love and support. I know everyone is busy with life, the time you give in watching the videos is very important to me.
Thank you for taking time to read this email. Your love and support is appreciated more than you will ever know..
Much love,
Jackie
Sunday, November 15, 2009
What does an IC Bladder Look Like?
Googled.... this is what I got....
Have you ever wondered what IC looks like?
Here are three bladder photos provided by the University of Iowa. Anyone who says that IC isn't real.. should take a close look at the wounds (petechial hemorrhages, glomerulations, etc.) in these bladders.
Saturday, November 14, 2009
IC Preparing for Dr. Visits
I'm going for my 2 month visit to Dr. Stout. I DO NOT like going to doctors. I DO NOT like the fact that my gynocologist prescribed a HUGE bottle of Hydrocodine (120 tablets) when she found out I had IC. I was feeling so confused about discussing my IC treatment failures at my upcoming appt. Now, I feel so blessed to have run across this video. I have so many horrible symptoms, lots of depression... I've thought I was CRAZy.... This lady knows what I am going through. If you are a family member, thank you for viewing the video so you know why I am the way I am right now. Thanks for your support and loving patience. I'm still looking for Me, if you find Me, please bring her home.
Friday, November 13, 2009
Tell Your Story
This YouTube is Jill Osbornes Story. She is an amazing advocate for ICer's.
This is a place for you to share your story with other IC'ers. Click on the Post a Comment below and record your IC journey from the beginning to this date. I believe as we begin to make connections, we may find a cure. Or, we may be able to help other people who suffer. And, most of all, sharing with people who know how we feel makes us feel good. You can upload a photo of yourself, or a clipart that represents who you are. Thank you for sharing with us!
If you prefer, you can email me your story, and I will post it. Email me at jacklynprobert@yahoo.com
Thursday, November 12, 2009
Sunday, November 8, 2009
Jill Osbornes IC Support Network
http://www.ic-network.com/index.html
Thanks Jennie for linking me to this site... I am in need of support like this. Having another flare up today... AGAIN... blogging trying to do anything I can to keep my mind off the blurring pain... I feel like this little green monster is chewing on the nerves in my thighs, tummy, legs, feet....abdoman... groin.... ouch!
Maybe it was the Salmon??? Dang it tasted so good with the little bit of seasoning it had on it. Do you know how badly I wanted to eat that potato soup? OMGosh. LOL.
Saturday, November 7, 2009
Thursday, October 29, 2009
After the Treatment
Friday had another treatment. Annie went with me. She watched. Ewh! And, I braved it. Asked nurse to teach me how to catherize myself, how to mix the "meds" and how to put it in the cath and into my bladder.I never wanted to learn to do this. I only hoped it would all go away. Go Away Big Green (in this case Red) Monster!!!!
It hasn't.
So I learn.
Thanks Annie for being there with me in one of my many embarrassing moments. I am so going to hate giving myself these treatments. #1 I have short arms, and it's hard to reach "down there while lying down!" and #2 I feel like crap before and after these treatments happen for a while.
Okay, I am going to focus on my blessings that there is such a thing as "a little" relief in the form of a treatment.
I feel like I am going CRAZY.
CRAZY I say!
Worked teacher work day. Gloomy day!
Tuesday, October 27, 2009
Oh Crap!
It seems like these I C Flare-Ups have found me again. I was going along with mini flares thoughout the day... (not my favorite thing to do)... and then I had this BIG ONE take over my body. I am a blob!
Off to see the doc for an extra treatment tomorrow.... blah!!!!!!!!!!! Mr. Wizard take me away from here. I hate this! I am depressed!
I thought I was DONE with these treatments for a while... had 3 weeks off.
COSTS so much in time and $$$$$ for these treatments.
How can I reduce stress in my life so I can manage this???
Oh, but a blessing it is that I don't have something worse. I just need to be thankful I can get through this. I am thankful for my family support...
Off to see the doc for an extra treatment tomorrow.... blah!!!!!!!!!!! Mr. Wizard take me away from here. I hate this! I am depressed!
I thought I was DONE with these treatments for a while... had 3 weeks off.
COSTS so much in time and $$$$$ for these treatments.
How can I reduce stress in my life so I can manage this???
Oh, but a blessing it is that I don't have something worse. I just need to be thankful I can get through this. I am thankful for my family support...
I Killed the Fruit Basket
I have been so frustrated with not being able to eat fruit. I came home so exhausted from the school Halloween Party... I was annoyed with every little thing (am I depressed???)... I picked up a fork and stabbed the fruit in the basket on the island.
I can't eat it! Those banana's will never be the same. I use to eat 2-3 pieces of fruit a day.
Never ate pears or blueberries....NOT MY FAVORITE.... and those are the 2 fruits ICer's CAN eat!!!! Oh... wait... we can have watermelon too!!! But, oh... wait... watermelon won't fit in the fruit bowl...and it's winter!!!! Watermelon costs an arm and a leg right now!!!
Why is that fruit basket STILL here anyways?
ROUTINE....
Fruit likes our shopping cart? ummm Maybe!
Dave, the new shopper in our home, buys it out of routine... he rarely eats it. We throw most of it out now that I can't eat it. It looks so yummy!
Dang it! Dang it! Dang it!
*Sorry, this photo on this post is NOT the real crime scene. I couldn't bring myself to take a photo of what the fruit bowl looked like when I was finished stabbing those lucious pieces with a fork.
And... yes.... We Laughed.... after the fact. Then I cried!
I Can Do This
Today, no matter what the world throws your way take a moment to decide, 'How will I respond?'. Calm wisdom always trumps quick judgement! You can do this....you're meant to do this....you have everything you need, IN THIS MOMENT, to make any decision. Take a deep breath, settle your thoughts, detach from the outcome, and step into your authentic self!
Have you seen my "authentic self?"
Have you seen my "authentic self?"
Wednesday, October 7, 2009
IC Foods to AVOID
Trying to figure out what I can eat and what I can't eat... acidic foods send my IC Symptoms soaring. It is really difficult for me right now trying to stay healthy when so many healthy foods can't be eaten. All my life I have grabbed a piece of fruit or a veggie 2-3 times a day for 2 reasons: 1. I like fruit, and 2. I try to stay little (I'm not, but if I didn't try every day I would be gigantic!)... it seams the only things not on this list are breads, pastas and rice! Those are carbs that make me fat... I know this.... so, please help me figure out some meals without the following food items.
I am depressed and I can't seem to get past this!
Below is a representative list of acidic foods in alphabetical order.
100% Apple Juice
100% Cranberry – Blackberry Juice
100% Cranberry – Grape Juice
100% Cranberry Juice
100% Pear Juice
100% Grapefruit Juice (pink or white)
Apples
Applesauce
Apricots – Dried
Artichoke Hearts
Aspirin
Balsamic Vinaigrette
Bananas
BBQ Sauce
Beer
Beets
Bell Peppers
Blackberries
Bleu Cheese Dressing
Blueberries
Bread & Butter Slices
Buttermilk – cultured 2%
Cacciatore
Caesar Salad Dressing
Cantaloupe
Capers
Carbonated Beverages
Chardonnay
Cherries Chianti
Chili with Beans
Chocolate
Cocktail Sauce
Coffee
Concord Grape Preserves
Corn Relish
Cottage Cheese 2%
Cracker (hot & spicy)
Cranberries
Cream Cheese
Creamy French Salad Dressing
Cucumbers
Fruit Cocktail
Frying Pepper
Gelatin (orange flavor)
Grape Juice
Grapefruit Sections
Grapes
Honey
Honey Dijon Salad Dressing
Horseradish
Hot Cherry Peppers
Hot Sauce, Louisiana
Ibuprofen
Italian Salad Dressing
Jalepenos
Ketchup
Lemons
Lemon Juice
Lemonade
Lemony Dill Dressing
Light Beer
Lime Juice
Low Acid Apple Juice
Mango Chutney
Mashed Potatoes
Mint Jelly
Molasses
Mustard
Nacho Tortilla Chips (spicy)
Nectarines
Olives
Onions
Orange Juice
Oranges
Pears
Peeled Tomatoes
Pesto & Tomato Sauce
Picante
Pineapple
Pizza Sauce
Plums
Poppyseed Salad Dressing
Prunes
Raisins
Ranch Salad Dressing
Red Cabbage
Red Peppers
Red Wine
Roasted Peppers
Sauerkraut
Seltzer
Soy Sauce
Spaghetti Sauce
Sports Drinks
Steak Sauce
Stewed Tomatoes
Strawberries
Strawberry Preserves
Sweet & Sour Sauce
Sweet Relish
Tabasco Sauce
Tartar Sauce
Tea
Thousand Island Salad Dressing
Tomato Juice
Tomato Paste
Tomato Sauce
Tomato Soup
Tuna
Vinegar
Vodka
White Wine
Worcestershire Sauce
Yogurt
I am depressed and I can't seem to get past this!
Below is a representative list of acidic foods in alphabetical order.
100% Apple Juice
100% Cranberry – Blackberry Juice
100% Cranberry – Grape Juice
100% Cranberry Juice
100% Pear Juice
100% Grapefruit Juice (pink or white)
Apples
Applesauce
Apricots – Dried
Artichoke Hearts
Aspirin
Balsamic Vinaigrette
Bananas
BBQ Sauce
Beer
Beets
Bell Peppers
Blackberries
Bleu Cheese Dressing
Blueberries
Bread & Butter Slices
Buttermilk – cultured 2%
Cacciatore
Caesar Salad Dressing
Cantaloupe
Capers
Carbonated Beverages
Chardonnay
Cherries Chianti
Chili with Beans
Chocolate
Cocktail Sauce
Coffee
Concord Grape Preserves
Corn Relish
Cottage Cheese 2%
Cracker (hot & spicy)
Cranberries
Cream Cheese
Creamy French Salad Dressing
Cucumbers
Fruit Cocktail
Frying Pepper
Gelatin (orange flavor)
Grape Juice
Grapefruit Sections
Grapes
Honey
Honey Dijon Salad Dressing
Horseradish
Hot Cherry Peppers
Hot Sauce, Louisiana
Ibuprofen
Italian Salad Dressing
Jalepenos
Ketchup
Lemons
Lemon Juice
Lemonade
Lemony Dill Dressing
Light Beer
Lime Juice
Low Acid Apple Juice
Mango Chutney
Mashed Potatoes
Mint Jelly
Molasses
Mustard
Nacho Tortilla Chips (spicy)
Nectarines
Olives
Onions
Orange Juice
Oranges
Pears
Peeled Tomatoes
Pesto & Tomato Sauce
Picante
Pineapple
Pizza Sauce
Plums
Poppyseed Salad Dressing
Prunes
Raisins
Ranch Salad Dressing
Red Cabbage
Red Peppers
Red Wine
Roasted Peppers
Sauerkraut
Seltzer
Soy Sauce
Spaghetti Sauce
Sports Drinks
Steak Sauce
Stewed Tomatoes
Strawberries
Strawberry Preserves
Sweet & Sour Sauce
Sweet Relish
Tabasco Sauce
Tartar Sauce
Tea
Thousand Island Salad Dressing
Tomato Juice
Tomato Paste
Tomato Sauce
Tomato Soup
Tuna
Vinegar
Vodka
White Wine
Worcestershire Sauce
Yogurt
Monday, September 28, 2009
Wednesday, September 9, 2009
Tuesday, September 1, 2009
Loosening the Bowels
Rub in a circular pattern from under your right ribs towards your left gently down across 2" below your belly button back up and around
high fiber, raw nuts esp.,cashews and almonds
greens, no meat, chicken and fish, squash
ginger tea
movement essential, crunches, rolling, walking
tapping on tummy in soothing light strokes, esp. where it hurts, make it feel "warm and hummy"
exhale
then exhale twice and breathe in slowly
do as many consecutive exhales as is comfortable while pulling your stomach in on each exhale and relaxing it slowly out during your just as slow inhale from toes to hair
Sunday, August 30, 2009
After the Surgical Procedure
No... this is NOT me! I look better than this, well usually!!!I had the hydrodistention procedure done on Friday. Dr. Stout took pictures of the inner layer of my bladder, which confirmed the diagnosis of Interstitial Cystitis. Yes... it is a painful procedure... I was NOT awake, thank you very much Dr. Stout! The procedure was done at the South Towne Surgical Center in Murray.
Saturday I felt pretty good. Today I feel like a truck ran over me, turning me into road kill... where I was scooped up and scraped off into a hot & dirty black trash can.
Saturday I felt pretty good. Today I feel like a truck ran over me, turning me into road kill... where I was scooped up and scraped off into a hot & dirty black trash can.
On a good note... I have noticed the burning pain has IMPROVED in my leg and groin area. I am optomistic that in the days ahead I will be feeling much, much better. I am looking forward to seeing my kindergarten students alltogether tomorrow for the first real day of kindergarten. Andelyn is going to be there to help me, and that is a BIG relief.
I am aware this procedure will need to be done many times over my IC journey... but cannot be done to extreme as the bladder cannot tolerate it, and may become damaged beyond repair.
Thanks for letting me share.
Tuesday, August 25, 2009
Sorry
Hey! I don't know if anyone looks at my blog or not, but I haven't been feeling very well. I so wish I were feeling better. I have so many family memories I would like to blog for the future... I just need to get my body well. I wish I knew why I didn't feel so good. I hate feeling like this. I love you all so very much.... and I WILL BE BACK SOON. Hugs
Saturday, August 8, 2009
IC Information Page
IC Network Handbook
You can find LOTS of links and answers to questions on this link!
Thanks IC Friends!
Tuesday, July 28, 2009
IC Information-- I need someone who cares--I'm Scared!
To better understand interstitial cystitis (IC), it's helpful to have some knowledge of the urinary system and what might cause IC. Here's a short overview.
The Urinary System
The urinary system is composed of various organs, tubes, muscles and nerves that work together to create, store and carry urine.
The kidneys produce urine, a fluid containing irritating substances and natural waste products. From each kidney, the urine flows through a long thin tube called the ureter. From the ureters, the urine travels to the bladder.
The Bladder and Its Protective Layer
The bladder is an organ located in the pelvic area. It is a muscular sac responsible for storing and emptying urine. Since the bladder may store urine for several hours, it has a protective lining to shield its wall from the irritating waste products of the kidneys. This protective mucous lining is called the glycosaminoglycans (GAG) layer.
This layer is supposed to act as a barrier to keep the irritating substances of the urine away from the bladder wall and prevent them from leaking out of the bladder into the bloodstream.
Causes of IC
No one is 100% sure of what causes IC. But experts who study IC do have several theories to help explain why some people develop IC and others don't.
Some evidence points to irritating substances in the urine or damage to nerve cells along the bladder wall. Other evidence suggests that IC is caused by the body's own natural defense system turning on itself. Chronic pain in the bladder may also be aggravated by allergies. In some patients, symptoms may get worse when certain foods are eaten. Some experts also believe that the bladder's GAG layer has become thinned or is absent. A damaged GAG layer may allow irritating substances in the urine to aggravate the bladder wall and cause inflammation and pain.
Medical experts believe that many causes could actually be working together, resulting in the same set of painful symptoms common in IC. Fortunately, there's a growing awareness of IC.
If you do, in fact, have interstitial cystitis (IC) or think you might have IC, it's important to know that it's a treatable medical condition. And with your doctor's help, you can get your symptoms under control. Although there is no known cure for IC, there are treatment options that may bring relief—some more invasive than others. Talk to your doctor about the treatment option that's best for you.
Oral Therapy
Oral therapy is medication that you take by mouth. Typically, oral therapy is more convenient than intravesical therapy. ELMIRON® is the only oral medication that's FDA approved to treat the pain or discomfort of interstitial cystitis (IC). It's available by prescription only, and is a capsule you take 3 times a day (or as recommended by your doctor).
The longer you take ELMIRON®, the better it may work. So it's important to continue your treatment as directed by your doctor. And since symptom improvement is gradual, it's important to keep taking ELMIRON® as prescribed by your doctor. If you have not experienced symptom improvement by 6 months of therapy, you should talk to your doctor.
Learn more about using ELMIRON®.
The most common side effects were blood in stool, diarrhea, nausea, hair loss, headache, rash, upset stomach, abdominal pain, liver function abnormalities and dizziness. When side effects did occur, they were generally mild and usually did not interfere with continuing treatment.
Please read the ELMIRON® Important Safety Information.
Intravesical Therapy
A currently approved agent for intravesical therapy is DMSO. With intravesical therapy, medication is instilled directly into the bladder, so it's a bit more invasive than oral therapy.
In intravesical therapy for IC, the bladder is filled with a solution that is held for varying periods of time, ranging from 15 to 60 minutes, before it is emptied. This procedure is usually conducted in your doctor's office or a hospital setting, and usually with local anesthesia.
Temporary Relief
In addition to traditionally prescribed treatments for IC, some IC patients may find that they experience some degree of temporary symptom relief by making certain IC diet and lifestyle changes. Learn more about managing and living with IC.
What Not to Do
Because the symptoms of IC are like those of bladder infections, helpful friends may suggest the same treatments that they used for a bacterial urinary tract infection (UTI). Be careful — simple home remedies (such as cranberry juice or various herbs) used for UTIs may actually make your IC condition worse. Your best bet is to seek medical advice from your doctor.
The Urinary System
The urinary system is composed of various organs, tubes, muscles and nerves that work together to create, store and carry urine.
The kidneys produce urine, a fluid containing irritating substances and natural waste products. From each kidney, the urine flows through a long thin tube called the ureter. From the ureters, the urine travels to the bladder.
The Bladder and Its Protective Layer
The bladder is an organ located in the pelvic area. It is a muscular sac responsible for storing and emptying urine. Since the bladder may store urine for several hours, it has a protective lining to shield its wall from the irritating waste products of the kidneys. This protective mucous lining is called the glycosaminoglycans (GAG) layer.
This layer is supposed to act as a barrier to keep the irritating substances of the urine away from the bladder wall and prevent them from leaking out of the bladder into the bloodstream.
Causes of IC
No one is 100% sure of what causes IC. But experts who study IC do have several theories to help explain why some people develop IC and others don't.
Some evidence points to irritating substances in the urine or damage to nerve cells along the bladder wall. Other evidence suggests that IC is caused by the body's own natural defense system turning on itself. Chronic pain in the bladder may also be aggravated by allergies. In some patients, symptoms may get worse when certain foods are eaten. Some experts also believe that the bladder's GAG layer has become thinned or is absent. A damaged GAG layer may allow irritating substances in the urine to aggravate the bladder wall and cause inflammation and pain.
Medical experts believe that many causes could actually be working together, resulting in the same set of painful symptoms common in IC. Fortunately, there's a growing awareness of IC.
If you do, in fact, have interstitial cystitis (IC) or think you might have IC, it's important to know that it's a treatable medical condition. And with your doctor's help, you can get your symptoms under control. Although there is no known cure for IC, there are treatment options that may bring relief—some more invasive than others. Talk to your doctor about the treatment option that's best for you.
Oral Therapy
Oral therapy is medication that you take by mouth. Typically, oral therapy is more convenient than intravesical therapy. ELMIRON® is the only oral medication that's FDA approved to treat the pain or discomfort of interstitial cystitis (IC). It's available by prescription only, and is a capsule you take 3 times a day (or as recommended by your doctor).
The longer you take ELMIRON®, the better it may work. So it's important to continue your treatment as directed by your doctor. And since symptom improvement is gradual, it's important to keep taking ELMIRON® as prescribed by your doctor. If you have not experienced symptom improvement by 6 months of therapy, you should talk to your doctor.
Learn more about using ELMIRON®.
The most common side effects were blood in stool, diarrhea, nausea, hair loss, headache, rash, upset stomach, abdominal pain, liver function abnormalities and dizziness. When side effects did occur, they were generally mild and usually did not interfere with continuing treatment.
Please read the ELMIRON® Important Safety Information.
Intravesical Therapy
A currently approved agent for intravesical therapy is DMSO. With intravesical therapy, medication is instilled directly into the bladder, so it's a bit more invasive than oral therapy.
In intravesical therapy for IC, the bladder is filled with a solution that is held for varying periods of time, ranging from 15 to 60 minutes, before it is emptied. This procedure is usually conducted in your doctor's office or a hospital setting, and usually with local anesthesia.
Temporary Relief
In addition to traditionally prescribed treatments for IC, some IC patients may find that they experience some degree of temporary symptom relief by making certain IC diet and lifestyle changes. Learn more about managing and living with IC.
What Not to Do
Because the symptoms of IC are like those of bladder infections, helpful friends may suggest the same treatments that they used for a bacterial urinary tract infection (UTI). Be careful — simple home remedies (such as cranberry juice or various herbs) used for UTIs may actually make your IC condition worse. Your best bet is to seek medical advice from your doctor.
If you've already been diagnosed with interstitial cystitis (IC) or think you may have IC, it's easy to feel discouraged. But rest assured, IC is a treatable medical condition that can be improved over time.
In order to better manage your symptoms, there are 5 steps you can take towards improving your condition.
Understand your symptoms.
Having a clear understanding of your symptoms can lead to appropriate treatment.
Complete and print out the IC Self-Screener.
Answer a few questions about your symptoms to help you and your doctor come to a quicker diagnosis.
Schedule a specific doctor visit.
Since misdiagnosis of IC is common, the sooner you visit a doctor familiar with IC, the better. Urologists and obstetrician/gynecologists (OB/GYNs) tend to be most familiar with IC, due to their specialized clinical experience.
Prepare for your visit.
Make the most of your doctor visit and be prepared to ask some questions about your symptoms and interstitial cystitis treatment options.
Track your IC Symptoms.
Keep a record of the severity and frequency of your symptoms, and see if any patterns exist over time.
Helpful IC Dietary Guidelines.
Since certain foods and drinks can trigger flare-ups of your IC symptoms, it is important to pay attention to your diet. Following these dietary guidelines may help you reduce flare-ups.
In order to better manage your symptoms, there are 5 steps you can take towards improving your condition.
Understand your symptoms.
Having a clear understanding of your symptoms can lead to appropriate treatment.
Complete and print out the IC Self-Screener.
Answer a few questions about your symptoms to help you and your doctor come to a quicker diagnosis.
Schedule a specific doctor visit.
Since misdiagnosis of IC is common, the sooner you visit a doctor familiar with IC, the better. Urologists and obstetrician/gynecologists (OB/GYNs) tend to be most familiar with IC, due to their specialized clinical experience.
Prepare for your visit.
Make the most of your doctor visit and be prepared to ask some questions about your symptoms and interstitial cystitis treatment options.
Track your IC Symptoms.
Keep a record of the severity and frequency of your symptoms, and see if any patterns exist over time.
Helpful IC Dietary Guidelines.
Since certain foods and drinks can trigger flare-ups of your IC symptoms, it is important to pay attention to your diet. Following these dietary guidelines may help you reduce flare-ups.
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