Registered: 1095684907 Posts: 3
Reply with quote #76
Hello everyone, my name is Sarah (known as fraggle). I am 37, married with a 13y boy and a 3y girl. I started very suddenly and very quickly with pelvic pain and as the months went on, couldn't go for a wee without feeling as though I was being turned inside out. I spent 18 months like this, being told I had an infection and then the possibility of bladder cancer, even ended up being tested for s.t.d's!! Eventually though, I was diagnosed with ic back in June. I was immeadiately taken off the tablets I was on and started on much better ones that worked to a certain extent, but I was still having problems at night and with frequency and pain levels. My urologist came up with trying DMSO and I agreed (although it sounded flippin horrible). The first treatment hurt a bit but soon kicked in and the other three I had each fortnight after worked wonders. Only lasted for six weeks after the last one though! I am about to start another course, hopefully lasting a bit longer this time! The pain of ic sometimes has me sitting on the loo for ages, crying my eyes out, just trying to keep my bladder completely empty, but I try to be optimistic and am so glad I found you lot! BYE FOR NOW
Registered: 1097247133 Posts: 1
Reply with quote #77
What a RELIEF this is, being able to chat to people experiencing the same problems that i have! guess ill start with a intro im called jo im 18 and really enjoyin studing art at the mo. Havent as yet been diagonised with IC by the doctors but have been suffering with the simptoms for about 4 years now, just as we speak on about my 50th bout of antibiotics.
Looking forward to the chats!
Registered: 1097855737 Posts: 1
Reply with quote #78
I'VE NEVER BEEN A PART OF A ONLINE PROGRAM BEFORE, SO BEAR WITH ME IF I SEEM TO RAMBLE, I'M 60 YEARS OLD I'VE HAD FYBROMYLAGIA SINCE I WAS 32, I'VE PASSED OVER 30 KIDNEY STONES, I HAVE A LARE HIATAL HERNIA,ASTHMA WITH ALLERGIES AND THOUGH I'VE NEVER WENT THROUGH ALL OF THE TESTS FOR IC I DID HAVE MANY OF THE SYMPTOMS 2 YEARS AGO, SMELLY URINE, PAIN ON STARTING TO URINATE AND EVEN WORSE PAIN STOPPING, PRESSURE AND THE FEELING I HAD TO GO ALL THE TIME. I THOUGHT IT WAS ANOTHER STONE, HOWEVER MY TESTS ALL CAME OUT O.K. I HAD THE KUB EXRAYS NO STONE.. I WAS MISERABLE I
WENT ON THE INTERNET AND FOUND SOME INFORMATION ABOUT IC IT WAS VERY HELPFUL BATTLED THIS PROBLEM WITH PYRIDUIM AND
TYLENOL AND WENT OFF COFFEE & TEA I ALSO ADDED 1 ASPIRIN AND FINALLY IT JUST GOT BETTER. HOWEVER ABOUT 2 MONTHS AGO
IT CAME BACK I'VE TAKEN SEVERAL ROUNDS OF PYRIDIUM, BUT IT'S NOT GOING AWAY. I FEEL LIKE A REAL WHINER AFTER LISTENING TO SOME OF YOUR STORIES, I HAVE A LOT OF HEALTH
PROBLEMS, BUT THANK GOD I'VE ALWAYS MANAGED TO FIND A WAY TO LIVE AND WORK IN SPITE OF THEM. I ALSO AM ALWAYS TIRED
AND DON'T SLEEP WELL. I TAKE A SMALL AMOUNT OF XANAX NIGHTLY IT SEEMS TO HELP TO PAINFUL THROBBING IN MY BLADDER
AT NIGHT. I STARTED TAKING AN OVER THE COUNTER PILL CALLED
PROZAC(?SPELLIG)IT BLOCKS SOME OF THE ACID I PRODUCE. I BELIEVE IT IS HELPING, I'M CONVINCED WITH AN INFLAMED BLADDER ACIDIC URINE WOULD MAKE IT WORSE. I'VE GOTTEN SOME IDEAS FROM THIS SERVICE LIKE THE BAKING SODA I STARTED THAT
YESTERDAY, I HOPE IT HELPS WITH THE BURNING I FEEL MOST THE
BYE TO ALL & GOD BLESS YOU
Registered: 1098730827 Posts: 15
Reply with quote #79
Hello Annabel, I have been newly diagnosed with IC. I mainly have pain when my bladder is full - my doctor has also put me on cranberru tablets, cant believe it!! I wondered if you can tell me where to get cystistat from? Is it by prescription? Any advice appreciated
Originally Posted by
annabel Hello, My name's Annabel, I'm 25 and I live with friends in London. I was diagnosed with IC about 3 years ago after a few months of symptoms (thanks to the internet! My GP kept telling me to drink cranberry!!). My case is fairly mild but the symptoms of pain/discomfort and frequency are constant. It hasn't impacted too much on my life thanks to my lovely boyfriend but it has made me scale down some of my career ambitions. I currently work as performing arts administrator but I'd rather be an illustrator/best selling novellist! In terms of treatment, I haven't really found much that makes a difference but I've only tried cystistat and atarax. I can manage it (just about) without medication for the moment so I'm putting off the hard-core pills until I really have to. I'm planning to try acupuncture and/or reflexology soon but have had minimal success with herbalism and a terrible experience with a nutritionist (told me to drink fruit juice because it turned alkaline in the body... ouch ouch!). I'm being checked out later this month for signs of suspected endometriosis which might shed more light on my IC... This site has been a great help and I hope you find it useful too. x Annabel
Registered: 1099075911 Posts: 667
Reply with quote #80
Thought I should let you know I'm actually a fraud and NOT a new member at all. I have just changed my username.. Love Emma x AKA EmmaJ
Registered: 1099434471 Posts: 7
Reply with quote #81
Hi - I hope this is going on the meet and greet bit - not used this before so a bit clunky! I am 30 - live in London and have been married for one year. Have been having bladder problems for 12 years since i was 18 and have taken too many bouts of antibiotics to count. Was told like many others to drink cranberry etc but finally my GP referred me to a Uro i had a cystoscopy in August and just got the results last week which was chronic inflammation and scarring etc ... conclusion : IC. I have started RIMSO instillations and am waiting to see the effects. Meanwhile researching all other alternative remedies. Was hoping to try for a baby now and have been told to wait. But for how long???! Great to hear others stories.
Registered: 1099650085 Posts: 105
Reply with quote #82
Hello my name is Andrea, I am 35 years old and I live in Swindon, Wilts.
I had to have a cystoscopy, biopsies, urethra dilation and bladder distension last September. As the Specialists are still in the grey area of diagnosing has to whether I have got Interstitial Cystitis or Irritable Bladder Syndrome. It all started off with feeling sore down below and started weeing frequently therefore being treated for a water infection. I was put on several antibiotics but it never cleared up. Eventually I had the operation as mentioned above and was told my bladder was inflammed on the follow up consultation and was give more antibiotics-dont really know why-as they dont work. After seeing the Specialist again he said he does'nt know what's wrong with me and refered me to the top man. I've seen him and he says its either Interstitial Cystitis or Irritable bladder Syndrome. Anyway he said firstly about calming my bladder down first -but this year nothing I have been prescribed with has worked. In June I was given a medication to take and my bladder stopped working, I was unable to pass water for a weekend. My G.P. says I had to get straight down the surgery and get me into Hospital -but I did'nt go as my G.P. says it was the medication that was too powerful for me-he was not happy and said he was writing to my Specialist. I saw the Specialist yesterday waited 59 mins and was in there literally 10 mins. He said he was going to prescribe me Tagnamet to stop my bladder from getting irritable, my other half said to him she's already had that and it did'nt work. So he prescribed me with Elmiron, I started it today, so fingers crossed . But I also have Obsessive Compulsive Disorder (very severe) and am on medication for that. Anyway I am always available to talk to anyone whenever they want. love Andrea __________________ Andrea
Registered: 1098730827 Posts: 15
Reply with quote #83
I am a new member from Australia, but lived in Ireland for 10 months and am now in London (since April) My very first suspected IC began in 2002 - I have several bladder infections and was prescribed antibiotics as usual. I also had a cystoscopy and they told me I had Trigonitis. The problem went away temporarily for a few months. Then when I moved to Ireland I really suffered. I had very bad infections where I was in tears and had to be rushed to hospital about 4 times. They found bacteria present 2 out of the 4 times and I was prescribed Vesolof for 14 days, then after this I had another infection and I was prescribed another dose of Vesolof for another 14 days, I couldnt believe my doctor gave me the same antibiotic twice - I am sure this lead to my condition now and damaged my bladder. I was on another course of antibiotics after this so had 3 courses in about 3 months. In Ireland (February) I had another cystoscopy as I was really in pain again (mainly on a full bladder). The urologist seemed very unfriendly and said to my "No you dont have IC you are just stressed. He also said he dilated the bladder and tested the capacity which was quite high. He said there was no IC present and that I should just ignore the pain!!" Then I turned to herbal remedies Quercetin Complex (with Bromelain), Gotu Kola, Urva Ursi and Golden Seal/Echinacea. I was also taking herbal teas horestail and yarrow. I know it sounds like a lot but after taking all this for a month I was in total remission!! After this I moved to London for work as I had another job. Now 5 months later I have had symptoms again and had my 3rd cystoscopy (14th October). My new urologist did a biopsy and discovered mast cells indicating IC but said it is at the very early stages of IC (not conclusive) so has put me on Urotrol 2mg tablets for 6 weeks (same as detrusitol apparently) and put me on a strict diet, no caffein and no chocolate or red foods and 2.5 litres of water a day. These tablets havent really worked (has been 2weeks, as I am always in pain with a full bladder again. Another doctor prescribed me Amitriptyline 20mg at night and anti inflammatories. These provide mild relief, and also I am on sleeping tablets due to my depression. I have decided to take Quercetin complex again and hope I can cure myself again, I am seeing another urologist tonight for a second opinion. I will let you know how I go. I am so tired of this pain, it is really affecting my realtionship (due to no sex) and I am really depressed about it. Any advice appreciated and thanks for reading my story.xxx
Registered: 1101598309 Posts: 1
Reply with quote #84
I am a 40 Year old mother who has been suffering with IC and other Imune disorders for several years. After a very frustrating time I was finally blessed enough to find a good Dr. who didn't think I was "Crazy" Although by that time I was on the edge. After he found the problem he put me on what I thought was my life saver. Elmiron. This was like precious gold to me and I could live with the flare ups that came along every so often. Recently I have been having some other problems and after many blood test it was determined that I have liver problems. They think it was brought on by the elmiron. That was last week, I was taken off elmiron and giving a treatment directly into my bladder. This burned very badly and over the last 4 days the pain has just grown steadly worse. I have been in deep depression every since the original onset of IC and have been under the care of a Phyciatric team. Just the last couple of days of pain has sent me into a very bad state. I am too the point where I can face death from the liver complications better than I can this constant pain. I am either going to tell my Dr. that I want the elimiron back or that I want him to remove my bladder. I was raised as a Christian and have always been taught that suicide was wrong, but each day of living like this makes death look so wonderful to me. Please tell me if any of you feel this way. I hate to think that I'm the only one.
LeLee __________________ Leigh Reid
Registered: 1102098170 Posts: 11
Reply with quote #85
..I am 44 and I have had I.C. since 1966..that's 38 years if anyone is keeping track.The Navy dr's my parents took me to told them my bladder was " Small" and I would " Grow out of this"...well, I didn't. My dad was career navy and we moved allot. Dad wouldn't stop the car every 30 minutes so I could pee so mom brought a Folgers Coffee can for me to pee in. How humiliating. Right there in the back seat next to my brother and sister. I felt like a freak. When I turned 16 in 1976 my mom took me to the Naval Hospital in Tacoma to see a "specialist in urology" . He took x-rays, injected dye into my arm to watch it travel through my system, then they filled my bladder with water and told me to "Pee".This is while I was laying on the table under the x-ray machine..I couldn't do it, and I finally couldn't stand the pain anymore and got up and went into the bathroom. This dr told me I had "I.C' and he was going to give me a D.M.S.O. treatment, but he didn't get it into my bladder. When I got up off the table it ran down my legs and soaked my socks and I reeked all the way home.That was my first D.M.S.O. treatment.The years past and I just lived with it, what else could I do? I heard comments all the time like " How can you possibly have to pee again? You just went" ! I made up excuses to go to the bathroom so people wouldn't think I was crazy.I had to pass on so many things,,job offers, trips hiking or boating. My bladder ran my life.
When I was in my mid 30's I tried another urologist. He too started me on D.M.S.O.treatments..also known in my house as " Mom is getting the stink treatment again..RUN!"..after several stink treatments with little results I quit going..Why bother? It didn't help. Life went on and so did my average 40 minutes during the day and 5 - 8 times a night bathroom trips.This was my life..I knew nothing different. I often thought that I had been in the bathroom more times than all my family members combined..sad huh? My husband never complained. He would gladly stop whenever I needed to go.
This past July I thought about seeing the dr again. I wasn't sure why, after all he hadn't been able to help me in the past, but something told me to go. I had to find a new dr since my old one retired( Probably on all that money he made giving me stink treatments..hahha). The new dr seemed surprised when I told him I had I.C...he said " Oh, what makes you think you have that?".I read him my life's list. He agreed that yes, I surely did have it and he also told me that he knows of no other patient that has lived with I.C. so long. I hold the "Office I.C. Record" hahahha. I am still waiting on my gold medal.hahhaa
My new dr told me I was going to be very happy..I said " Oh yeah"? And why is that"? He told me about Elmiron. I was excited. We started in bladder treatments that day. I came for them 3 times a week for 5 weeks, and I also take 4 - 100mg Elmirons a day. That first night I slept 5 hours straight!! I have NEVER done that before!! I was so happy. At last I almost feel , and that is the greatest thing that has ever happened to me! It is truly a miracle...no side effects at all.....painful sex is all I have ever known my entire life. It's alot better now, but still I get pressure during and afterwards, but no real pain to speak of. As far as the I..C. diet, I never heard of it before I found this website 4 months ago..the only thing that seems to bother me is red wine and coffee..,,but life is too short and I love them both so I chose to drink them anyways....as far as any bad effects from them, I am so used to them I don't really notice anymore...when people realize I have lived with I.C. for 38 years they ask me how I could stand it..It's all I have ever known..I was not "Normal" first and then got it later in life, I have normal always had it...I tell people to imagine having a bad headache 24/7 for 38 years..sure it's annoying and painful but you would still find a way to live your life.
When I told my dad how great I was doing with the bladder treatments and medicine, he told me " That's good honey" "You just need to get out of that bad habit of going to the bathroom so much."
I.C victim since the age of 6, 1966. Diagnosed at 16 in 1976. 38 years living with untreated I.C. until Elmiron July 2004. __________________ Living with I.C. since 1966...
Registered: 1102290246 Posts: 99
Reply with quote #86
Hi Im sandy, Im 23 and live nr Bath. I havn't yet been diagnosed however have been suffering for pain when I pee and almost contant pain in my urethra for about 10 years and although I have had urine tests and an ultra sound these have come up negative for any infection. I have never even been tested for IC even though I seem to suffer with most of the symptoms. Im am going for some test results soon and I hope to be refered back to the ero soon and if im not tested this time I will suggest he visits this site!
Registered: 1103799361 Posts: 218
Reply with quote #87
Hi my name is Tracy, I am 36 yrs old and live in Buckinghamshire. I began to have bladder problems 3 yrs ago. I was officially diagnosed with IC nearly 4 weeks ago. I had a cystocopy, bladder distention and a biopsy done. I really do not notice any difference. I still have frequency, urgency, pain and also been suffering from many UTI's. I have to see my Uro again on Thursday so going to discuss the situation with him.
Registered: 1098279721 Posts: 914
Reply with quote #88
Hope everythig goes well with your Uro, make sure s/he looks after you.
Love Kerry __________________ Survivor of IC since November 2002, finally diagnosed in Summer 2004. Had 4 cystoscopy's, 4 hydro-distentions, 3 urethral stretchers, 1 laparoscopy, 4 urodynamics, numerous ultra-scans, Cystistat and DMSO instils of which I have lost count, perform ISC, suffer with retention, pain, bleeding, frequency and urgency and now have a urethral stricture. Had botox injections in Nov 2014. I'm on ibuprofen and tramadol daily along with my other six daily tablets.
Registered: 1105112948 Posts: 1
Reply with quote #89
Hi my name is Michelle. I am 32 years old and live in Slidell, Louisiana. I am married with 2 childern and 2 step childern which makes for a very large family. I have been suffering with symptoms of IC for about a year and a half. I have had what i thought were bladder infections (uti"s) for years. In August it got really bad and I was sick of hearing Uti when I knew it had to be more. I went to a uro. and he did several tests including cystoscope in October 04. I learned he thought IC in dec. when I was very frustrated and in pain the nurse told me. My doc. thought it best to keep me with hope and keep tryling the antibiotics. they did work and on the 13th of January 05 I am scheduled for the cysto./hydro. under anastisia(spell!!!!) . Thanks to web sites like this I am sucking up all the info I can to help my med. condition myself as much as possible.
Registered: 1105124847 Posts: 3
Reply with quote #90
HI I'm 48 and recently diagnosed with IC after years of bladder frequency/discomfort etc, followed by a recent 6 agonising weeks in hospital. I'm struggling to come to terms with living with chronic pain as my life has changed beyond all recognition.
I'd love to chat on-line with any IC sufferers as i need to get it all in perspective, to get more positive about it. But I can't work out how to chat on-line any more! (Used to chat on MSN but it won't accept my password now ARGH!) You all sound a lively lot with plenty of help ideas and humour - I hope at least i can make contact with you through this message board, if not finally work out the intricacies of chatting on-line! I'm a writer who loves fishing, reading and pub quizzes. Greg and I have 6 kids. Anyone out there? XXX __________________ recently diganosed with IC after 6 shocking weeks in hospital am still trying to come to terms with living with chronic pain would appreciate any encouragement I can get!