http://www.ic-network.com/forum/ Meet other patients in the largest interstitial cystitis social networking site on the web with a support forum, message boards and live support chats - Interstitial Cystitis Network en Wed, 22 May 2013 06:32:17 GMT vBulletin 60 http://www.ic-network.com/forum/images/misc/rss.png http://www.ic-network.com/forum/ http://www.ic-network.com/forum/showthread.php?79146-Constant-Pelvic-Aching&goto=newpost Wed, 22 May 2013 04:51:29 GMT I've been "flaring" for 5 months now. I gradually feel like I'm getting better, but I either will have urethral burning/stinging or constant pelvic aching/lower back pain. The last 3-4 days has really just been pelvic aching. Are these what you would call bladder spasms? I'm basically following the IC diet but I don't know if that is really any help. I started acupuncture, pelvic floor physical therapy and I am taking cystoprotek/valium suppositories/marshmallow root tea etc. It just doesn't seem normal to have a flare for this long. I will happily eat lettuce for the rest of my life if it meant that I would feel normal. However, I feel the burning is a stress flare while I can't really explain the pelvic cramps. Can anyone give me their opinion? I think this flare was a result of a UTI from a hot tub but my urine was never checked for bacteria from the get go so I don't know for sure. Could have just been a coincidence, I go back to the doctor Friday and I'm hoping to get something for the spasms along with something to help with my anxiety because I know that plays a part in my IC. Please help. :confused: ]]> Symptoms of IC abri91 http://www.ic-network.com/forum/showthread.php?79146-Constant-Pelvic-Aching http://www.ic-network.com/forum/showthread.php?79145-MultiRight-Vitamins&goto=newpost Wed, 22 May 2013 03:19:53 GMT I started taking the new MultiRight MultiVitamins four days ago. Happily, they have not caused any bladder discomfort at all. The only _possible_ complaint I have about them is that the pills are large, but I find if I place them lengthwise on my tongue and drink several ounces of water, they... I started taking the new MultiRight MultiVitamins four days ago. Happily, they have not caused any bladder discomfort at all. The only possible complaint I have about them is that the pills are large, but I find if I place them lengthwise on my tongue and drink several ounces of water, they slide right down. I thought about breaking them in half, but I'm able to take them whole with no real problem.

:) :)

Donna ]]> ICNDonna http://www.ic-network.com/forum/showthread.php?79145-MultiRight-Vitamins http://www.ic-network.com/forum/showthread.php?79144-To-IC-or-Not-to-IC&goto=newpost Wed, 22 May 2013 00:16:10 GMT Hi guys! I have posted before and briefly shared my diagnosis, but I want to tell the whole story. Let me start by saying that you are the bravest and kindest people ever! What most of you have lived through is just beyond my imagination. Now, I join you in the journey.

Born with a "bladder opening" that was too small, but medical science in the 1950's isn't what it is today. My only memories of earliest childhood other than a tornado taking the roof off of our house is being dilated. At age 3, the surgery was performed. I was totally normal until I married. Lots of UTI's and lots of meds, but there was always an infection when my urine was tested. IVP showed nothing amiss.

Fast forward to my second marriage four years ago to the love of my life. UTI's I thought, but nothing bacterial in the urine. The dr tried Nystatin and Diflucan in case it was fungal. I had a complete hysterectomy at 32, which was, in retrospect, probably more of a bladder issue causing the feeling that my uterus was falling out!

Within months of our marriage, had my gall bladder removed. The next year took me to my gyn with pressure and back discomfort. She referred me to her husband, a urologist, who is the epitome of quack! He did awful tests in his office which I would never had allowed without any type of anesthesia/sedation. The tests were inconclusive so we did the cystoscope under a general (go figure). Still inconclusive but I was in horrible pain after the procedure. He wouldn't return any calls until my son who is an atty called his office. They just called in pain meds and NEVER told me what was wrong!

I fired him and saw another uro who did a scope in his office and still said he didn't see IC. He did a bladder suspension in 2010 to help with the "falling out of my body" feelings that were worse. I needed to pee a lot and sometimes barely made it to the restroom. That totally stopped when he did the suspension. One year later, I came down with a horrible UTI (self dignosis due to having had so many in the past) and my GP called in an antibiotic. The frequency and urge cy didn't leave, so he said I had overactive bladder.

I have taken every OAB drug known to man, but side effects would cause me to stop and just take Pyridium. I did do aloe, but not the DH kind. I stopped everything in two months and was fine. Another year later, this past January, I had a raging UTI but it didn't culture anything definitive. More OAB drugs. They worked but I couldn't move my bowels or swallow from the dry mouth. I went to my GP and he referred me to yet another uro who told me I had IC and booked a scope plus interstim! I freaked out!

I finally got into a new uro with a great reputation. He did a pelvic (which no other doc had done) and touched my bladder. I scooted off the table. He started bladder instillations using aloe gel, lidocaine, and sodium bicarbonate. I stopped taking my OAB meds. I have been doing the IC diet and have spent 100's of dollars on supplements. I never had pain or burning before and now I do, so back on OAB meds and lots of supplements. I am 3 weeks into treatment.

I was at my goal weight and have gained it back around my middle, even though I try to be active, but that is a hard task when I feel like I am goi g to pee myself all the time. I don't have to get up in the night at all. The Atarax helps with sleep. Today the nurse who did my instill said IC was not diagnosed on my chart even though I thought he to,d me I have it.

I have t had coffee, tea, or my beloved chocolate, tomatoes.....barely anything to eat or drink. I think I may have to give up swimming. Still nobody knows what is wrong with me. There are days when I just want to have them remove my bladder, even though it is t painful. I just feel bloated all the time and like my bladder is falling out. Sometimes I put my hand down there and push up.

This is my story. I will update. My utter respect goes to all of you! God bless you! ]]> Dating with IC Downtowntiger http://www.ic-network.com/forum/showthread.php?79144-To-IC-or-Not-to-IC http://www.ic-network.com/forum/showthread.php?79143-IC-VV-IBS-and-Yeast&goto=newpost Tue, 21 May 2013 21:24:11 GMT Hi all,
Mytita's 18 yr old daughter here posting my story. Hoping someone has ideas or can see a pattern. Questions at the end.

I've had irritable bowel symptoms (stress-triggered diarrhea and/or constipation) since childhood.
Was put on the pill around age 14 for severe cramps.. quit it around age 16 because cramps improved with consistent exercise. Also note: have always had intermittent vaginal pain the first day or so of each period. Didn't realize it wasn't normal. Strangely, dramamine reduces this pain & pain of cramps for me.
About age 15 noticed urinary frequency after highly acidic foods (think: lemonade, soda, coffee), as well as with antibiotics. (Same year my mom's IC started).
A year ago (age 18) left a yeast infection untreated for a couple weeks while away from home. When I got home I treated it with monistat, and I also began a round of doxycycline for acne. This produced IC frequency and VV pain. After ten miserable days, I quit the antibiotic, but my symptoms didn't go away completely.
For 6 months I continued to have mild to moderate frequency, VV pain, and caught every cold and virus- which was bad since all cold medicines made my IC/VV symptoms worse (mucinex was AWFUL!). I hadn't gone to a doc, and didn't change my diet very much. Symptoms always worse on PMS and period. Also, I had to quit running.
January this year symptoms became moderate to severe, and the new symptom of itching began. Frequency up to every ten minutes. Couldn't get much sleep. Bad pain. Went onto strict low acid and also low oxalate diet. Doc put me on Elavil, yaz, and Levset. Levset didn't help. I think the yaz made me worse so I quit it. Switched Levset for Ditropan XL and that helped eventually. Rinsing with water after peeing and applying Slippery Stuff helped a lot with the VV. Haven't caught a single cold since getting on IC/VV diet and meds -- which makes me wonder about autoimmunity and all...
A couple months later went to a gynecologist because monistat burns, and whenever I eat something sweet I'll be itchy like a yeast infection the next day. She put me on diflucan once a week for the yeast infections, upped my elavil, and put me on gabapentin, as well as topical lidocaine.

I'm doing a lot better, but still can't tolerate sugar, and using lidocaine to cope with itchiness. Haven't had actual bladder pain in months, rarely wake up in the night now, and frequency is close to normal. Also, can run short distances now. Still have VV occasionally, and still need lidocaine to cope with itchiness. Other supplements (no clue which ones actually help): fish oil, garlic, calcium, magnesium, prelief, tagamet, L-arginine, Quercetin, virgin coconut oil, probiotics, AZO Yeast 3x day... I think that's all! :)

Does anyone else have recurrent yeast issues? What diet and/or meds are you on?
Has anyone tried a candida diet?
Has anyone tried the GAPS diet?
Any other ICers have family members with IC-onset within a few years of each other (I was 3 years after my mom)?
Did anyone else have IC or VV onset right after doxycycline or and untreated yeast infection?
Any one else notice IC symptom patterns with their menstrual cycle and/or the pill?
Anyone have a strange immune system? ]]> Mytita http://www.ic-network.com/forum/showthread.php?79143-IC-VV-IBS-and-Yeast http://www.ic-network.com/forum/showthread.php?79141-Hydrodistention&goto=newpost Tue, 21 May 2013 15:04:43 GMT I recently had a cystoscopy with hydrodistention. My urologist said that my bladder looks fine but I probably still have IC. Anyone else experience this. I can't help but feel like I'm crazy! ]]> Diagnosing IC/PBS - KCL Test or Hydrodistention? tiffferoni http://www.ic-network.com/forum/showthread.php?79141-Hydrodistention http://www.ic-network.com/forum/showthread.php?79140-Someone-please-give-me-some-moral-support-I-m-desperate!&goto=newpost Tue, 21 May 2013 11:09:41 GMT Hi, I'm new and so glad to find this site. I'm 50 and very youthful, had shock diagnosis endometrial cancer in Nov 2012. Had radical hysterectomy and brachytherapy, plus further surgery for complications, am now supposedly cured with luck. Left me with urine retention after catheterisation so need self catheter. Now can wee but incontinent due to weak pelvic floor. Only use self catheter twice a day as have now taught myself to go to the loo, although it is a slow trickle. My problem savage urinary infections treated by doctor with antibiotics but don't want to keep going this route. Have tried herbs as I was very into herbalism but the diuretic effect makes urine drip all the time so am hesitant, have tried so many times. I was making great progress with pelvic machine and bladder control techniques until last week when I self stopped my maintenance one nightly penicillin and cut back on one catheter. I have had a horrible flare. My doctors are useless. Went back on huge penicillin dose last Friday 3 tabs, instead of the one maintenance, was better over weekend now I have what I think is IC flare back. Can't wee very well, niggling toothachy pain in bladder which makes me want to scream. Rang doc. this morning who said persevere until Friday when antibiotic course is up and take 400 mg of ibubrofen. Easy to say when I am in this discomfort. He was not my usual doctor. Why has this flared like this? I am so much worse than before. Doctor was unhelpful and I cried after. I am trying to get my bladder back to normal without surgery, I have had enough and been told I must be patient. But these flareups are terrible. I think the catheter scratches when I use it. How long will this awful urge feeling and nerve pain go on. I have by the way recently lost my fiance who gave up on my condition and left me without a word, so things have been doubly tough. Any coping strategies please. Some contact would be so appreciated. ]]> Pain Management For Interstitial Cystitis 19Nicki62 http://www.ic-network.com/forum/showthread.php?79140-Someone-please-give-me-some-moral-support-I-m-desperate! http://www.ic-network.com/forum/showthread.php?79139-Need-some-advice-on-travling!!&goto=newpost Tue, 21 May 2013 07:58:41 GMT Not sure if this is the right area to post but I do need advice. I am going on vacation for the first time since I have been diagnosed. Thankfully we will be driving and my body is accustom to the vibration of the car we will be traveling in (even though vibration bother my bladder a great... Not sure if this is the right area to post but I do need advice.

I am going on vacation for the first time since I have been diagnosed.

Thankfully we will be driving and my body is accustom to the vibration of the car we will be traveling in (even though vibration bother my bladder a great deal being in a car with familiar vibration they seem not to bother me as much.) Even though we will be in a familiar car I am still worried about the long drive. We will be driving more than 12 hours in one day. I planning on taking my cushion to sit on, my heating bag that i can heat up in a microwave, as well all my meds sadly I am suppose to help in the driving so I might not be able to take to strong in the car. I am hoping to have my new charger cord for my tens unit so I can use that when not driving. Also planning on going the day before we leave to receive blocks and a cocktail.

Well anyone have other advice that might be helpful on the journey please let me know!!! ]]> General Diagnostic Questions Kathleen_213 http://www.ic-network.com/forum/showthread.php?79139-Need-some-advice-on-travling!! http://www.ic-network.com/forum/showthread.php?79138-pain-shooting-down-left-side&goto=newpost Tue, 21 May 2013 06:19:05 GMT I have been having recurring pain that shoots down my left side. The pain gets severe sometimes... I have had nights where I literally am not able to sleep at all because it is so terrible. I have endo and IC and I can't figure out which it might correlate more with. I have brought it up to all of my doctors at some point and none of them seem worried but it is always this same pain in the left side and its driving me completely insane! Can anyone else relate? What could be causing this? Is it IC related? ]]> Newly Diagnosed With Interstitial Cystitis ipaint http://www.ic-network.com/forum/showthread.php?79138-pain-shooting-down-left-side http://www.ic-network.com/forum/showthread.php?79137-Teaching-itch-IC&goto=newpost Tue, 21 May 2013 04:55:20 GMT Hello to all of you. I am wondering if any of you are teachers. I am an elementary teacher and have struggled so much with being able to go when needed. I am not teaching this year, but I plan to return soon. Last year, I had a 504 plan, but it was still hard to find someone to cover my class. ... Hello to all of you. I am wondering if any of you are teachers. I am an elementary teacher and have struggled so much with being able to go when needed. I am not teaching this year, but I plan to return soon. Last year, I had a 504 plan, but it was still hard to find someone to cover my class. Sometimes there was no one available. I would find myself drinking less to avoid it. Then I would drink more in the evening causing night time voiding. Of course this affected my sleep. I also have PFD and this gets worse when I don't go. This year my IC has been so much worse! I am worried I may not be able to teach again. Even when you try to explain it, people just don't try to understand. I am hoping some of you may understand. ]]> Introduce yourself and share your story Rosener http://www.ic-network.com/forum/showthread.php?79137-Teaching-itch-IC http://www.ic-network.com/forum/showthread.php?79136-single-better&goto=newpost Tue, 21 May 2013 03:57:04 GMT Hi all, I am quite fed up. All my relationships become so sticky because of my IC. Sex is almost always painful or I am in a state of burning and the thought of sex is horrible. If I have sex without taking my nitrofluation (powerful antibiotic) I ALWAYS get a UTI and if I have sex often... Hi all,

I am quite fed up.

All my relationships become so sticky because of my IC.

Sex is almost always painful or I am in a state of burning and the thought of sex is horrible. If I have sex without taking my nitrofluation (powerful antibiotic) I ALWAYS get a UTI and if I have sex often and take ny antibiotic I end up with a yeast infection.

If I take my gaberpentin like I should I have no pain but I can not achieve orgasim.

Should I just give up. I feel like sex is such ahuge punishment . I really do not enjoy Iit but I do also believe I am never going to have a successful male / female relationship without it. To top it off if I had a long relationship where someone already loved me I am sure it would be different but being single and expecting someone to have an almost sexless relationship....I'm dreamin!!! :(

Wendy ]]> Dating with IC Lollies8530 http://www.ic-network.com/forum/showthread.php?79136-single-better http://www.ic-network.com/forum/showthread.php?79135-Can-IC-cause-abnormal-pap-smears&goto=newpost Tue, 21 May 2013 02:06:12 GMT So i'm sure this is the wrong place to put this, couldn't find the right place. About 2 years ago I went in for my yearly pap smear. My doctor told me that I had abnormal cells in my pap smear. He said it's not HPV or any of the other things they test for. I start my second year of cervical biopsies. They are painful and it really stresses me out when I go in, and my IC flares up. Has anyone else had this problem? My gyno knows that I have IC, his PA diagnosed me. I'm just worried that I'll keep having to do them for the rest of my life. ]]> What do you think causes Interstitial Cystitis? Boonky http://www.ic-network.com/forum/showthread.php?79135-Can-IC-cause-abnormal-pap-smears http://www.ic-network.com/forum/showthread.php?79134-Smoothies&goto=newpost Tue, 21 May 2013 02:03:17 GMT I just seen a ad that Mcdonalds is selling Blueberry, pomigranite smoothies, can we have Pomigranite? I just seen a ad that Mcdonalds is selling Blueberry, pomigranite smoothies, can we have Pomigranite? ]]> tjcoch http://www.ic-network.com/forum/showthread.php?79134-Smoothies http://www.ic-network.com/forum/showthread.php?79133-Possibly-Has-IC&goto=newpost Tue, 21 May 2013 01:11:07 GMT Hello all. I want to share my story and maybe get some feedback about what could be going on. Almost a year ago, I had my first UTI. Two months later, I had my second. They started getting worse and more frequently. I started having irritations every time I had my period. I ended up having to... Hello all. I want to share my story and maybe get some feedback about what could be going on.

Almost a year ago, I had my first UTI. Two months later, I had my second. They started getting worse and more frequently. I started having irritations every time I had my period. I ended up having to switch to organic cotton pads. I also started getting occurences of BV.

I visited a URO for the first time in February. He gave me Macrobin to take every time I had my period. He didn't seem to think anything serious was wrong with me.

Anytime that I gave a urine sample, the urine always came out clean.

Since March, I've been getting sick almost every other week. It's terrible. I had a week in March where I had no idea what was wrong. It kept going back and forth and then one day just disappeared.

Two weeks ago, I had a terrible week. I hit my limit because I was at work (middle school teacher) and was administering the state tests. I was only given one bathroom break during 3 hours of testing and felt like my bladder would have exploded. I ended up at my primary doctor and he ordered an ultrasound.

The ultrasound came back showing a thick bladder wall and inflammation. I have a follow up appointment with my Uro on Friday. I am not sure what to expect.

I have researched this and it sounds like IC could be what I suffer from.

If anyone has any thoughts, please let me know! ]]> Not Diagnosed Yet with Interstitial Cystitis? princessbunny http://www.ic-network.com/forum/showthread.php?79133-Possibly-Has-IC http://www.ic-network.com/forum/showthread.php?79132-Has-anyone-tried-D-Mannose&goto=newpost Mon, 20 May 2013 18:35:13 GMT Hello all,
I ran across this very interesting natural medicine called "the sweet cure." It is a type of sugar discovered to promote a healthy bladder. Their claim is by taking this everyday you will overtime repair the damage and have a healthly bladder. It also is said to stop reoccuring UTI's. Has anyone tried this? I am skeptical, but have considered giving this a try as a more natural approach.

Kaylyn ]]> Oral Medications Kaylyn http://www.ic-network.com/forum/showthread.php?79132-Has-anyone-tried-D-Mannose http://www.ic-network.com/forum/showthread.php?79131-severe-pain-from-interstim-revision&goto=newpost Mon, 20 May 2013 17:19:22 GMT Im having severe pain from my interstim revision on 5/15 and pain meds not relieving it. I dont remember this amount of pain from the last one. Im 5 days out how long before the incision pain goes away.already called the uro all they say is take the pain meds prescribed. Im having severe pain from my interstim revision on 5/15 and pain meds not relieving it. I dont remember this amount of pain from the last one. Im 5 days out how long before the incision pain goes away.already called the uro all they say is take the pain meds prescribed. ]]> Sacral Nerve Stimulation: Undergoing Trials or Surgery KSD9807 http://www.ic-network.com/forum/showthread.php?79131-severe-pain-from-interstim-revision