Thread: My saga...
07-24-2006, 04:49 PM #1
- Join Date
- Jul 2006
begins at age 15 with the first of many of what were treated as bladder infections with antiobitics, although my urine came back clean. I had symptoms on and off from then into my twenties, sometimes, I just had to urinate alot, sometimes, I had pain, spasms, etc. In 1998 I became pregnant and experienced an increase in my symptoms, but I figured that was normal. A few times during my pregancy I went in to my Ob, certain that I had an infection, but never did. I had my daughter in June 1999. [Note that I had an emergency cesarean and during the surgery they nicked my bladder and had to repair it - who knows if this made my symptoms worse???** Shortly thereafter I went to see a urologist because I was feeling like I had to go constantly and I wanted to see if anything could be done. The doc said everything looked ok, he could dialate my urethra, but it sounded horrible, and he didn't seem to think it was necessary, so I skipped it. I continued to have symptoms on and off, sometimes urinating at least every hour, even during the night, sometimes on what I would consider a "normal" schedule. Then about 3 years ago at my anual exam with my ob, I expressed some concerns over my urgency and frequency and some chronic pelvic pain that I was having, in addition to unbearable menstrual cramps and spotting throughout the month. I had a full exam at that time, including a std screen, all of which was negative, nothing to worry about. When questioned about the irregular bleeding and abdominal pain, my doc put me on a different birth control pill and said I should see some improvement. Less than 2 weeks later I was in the office again with what I thought was a uti - but wasn't and I was sent home with no antibiotics, but no plan to do anything further. That evening, or actually the next morning at 4:00, I was sitting on the toilet, unable to urinate, with spasms and immense pain, so I called the on call doc who said I must have a pelvic infection. I explained to her that I was just in 2 weeks prior and everything was fine. So she had me come in the next day and I saw my normal doc who said it must be a uti and I had just urinated so much I flushed out the bacteria, so he gave me an antiobiotic. Not a month later I was back in for the same thing, and at that time my doc decided with the bladder symptoms and the bleeding, I must have endometriosis of the bladder - which led to my second trip to the urologist, who determined I did not have endometriosis of the bladder which is very rare, I guess, and he also did a cystoscopy, while I was awake, right in his office - YIKES!!! - and told me I DID NOT have IC. He then referred me back to a gynecologist. So I go a new doc and he did a bunch of tests on the gynecological side of things, conveniently ignoring my bladder complaints. In October of 2005 I had a hysteroscopy in which some polyps were removed and a D&C. No improvement on anything. I went back in to plead with him to do SOMETHING, ANYTHING, at which time he remarked that he noticed I also mentioned my bladder! UREKA! He said I might have IC and gave me some info and a prescription for Elmiron. But I felt the need to get a second opinion because I was a little leery of his diagnosis since the urologist had ruled out IC. So I started going to the U of I which is a large teaching hospital with a great reputation. I was first seem in Gynecology where they ruled out cancer, etc. and then gave me a shot of Depro Lupron which stopped my cycle for 3 months. They did this to see if I still continued to have pain, and if I did it was likely coming from my bladder. I was then seen in urology and a urodynamics was performed. FINALLY last Thursday I had a cystoscopy with hydrodistention. The docs said I should feel better right away from the hydrodistention. But I don't. if fact, I feel just as bad as ever, or worse! My doctor saw me after surgery and said that although my bladder capacity was very low while awake, it was relatively normal when sedated, and the lining of my bladder looked normal, but because of my syptoms he thinks I have a mild case a IC. He started me on Elavil, Elmiron and Hydroxyzine (sp?). Sorry to ramble - but I just need the perspective of another IC sufferer. I feel so discouraged becuase I have been suffering for years on and off, have been pretty much debilitated for months, missed tons of work, have no social life, feel like I am a let down to my wonderful energetic daughter, the list goes on and on. I felt like once I had this done I would be on my way to a better life, but I feel like the doc minimized my illness. There is nothing mild about the pain that I feel! On a bad day, I have to take pain killers and sleep/go to the bathroom. And even on my best day, I have urgency and frequency. It's been hard to get my family and friends to understand what I go through, and now that the doctor has given me the "mild case" label, I feel like they think I'm a phoney - but I am so miserable! I guess I just wonder how you all keep going on when you feel so hopeless!?!
07-24-2006, 04:58 PM #2
Hi Elizabeth A.
i just found out that I have I C it has been very very painful. i have been suffering with this for many years. On this friday i go for a bladder biopsy.
07-25-2006, 03:13 AM #3
First of all, I'd like to you to the IC Network. You'll find a lot of helpful information here.
I suggest you read the information in the Patient Handbook at http://www.ic-network.com/handbook
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
07-25-2006, 04:03 AM #4
Donna gave you a great link -- I was going to give it to you but she beat me to it! The Handbook is full of all kinds of information, including current treatment options and self-help strategies like the IC Diet. Many find that eliminating certain foods, like cranberry juice, sodas, coffee, etc from their diet improves their symptoms remarkably.
I hate the label "mild" IC as well -- while I was never labeled that, it frustrates me that others have been labeled this. I know that even IC that looks "mild" on cysto/hydro results can be a big pain in the you-know-what, and that it can be very, very painful. The word "mild" causes others, including doctors and family members, to assume that you shouldn't be feeling as bad as you do, and in the worst cases it can lead to inadequate treatment and resentment from family. NOT GOOD. I think when you have IC, YOU HAVE IC, no matter what the bladder looked like.
It sounds like your symptoms are not controlled well right now -- I see you are on Elmiron, Elavil, and hydroxyzine, which is a very standard IC "cocktail." Have you spoken to your doctor about changing dosages here or trying other treatments? There are many available - just check the handbook!
And, if your pain is poorly controlled and continues to rule your life, you may want to ask for a referral to a pain specialist, who can help you manage that aspect of IC.
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
07-25-2006, 05:17 AM #5
Hello and let me add my welcome as well!! So, you were just put on the Elmiron, Elavil and hydroxyzine I gather rather recently?? Just to let you know, the Elmiron can take up to 3 months to see some improvement and 6-12 months to fee the full benefits of the med. It's not a quick fix, but it can be very worth the wait. It really really helped me. I used to take that, Ditropan and hydroxyzine - now I just take hydroxyzine. (I am also taking the natural supplement Cystoprotek, just to keep things quiet, lol).
And as the others said, the diet can be a HUGE tool in helping to control your symptoms. It helped me out immensely while waiting for my meds to kick in. It didn't take things away 100% for me on diet alone, but sure made life more manageable!! And it's always the hardest at diagnosis. I never ever thought I would feel good again, ever. But I had just started on my meds, and as time went by things gradually improved. I can now eat whatever I like, but I do watch quantities - no sense in tempting fate!!
And this is a great place for support, information and understanding. It's hard for friends and family to understand what you are dealing with. I used to explain it to my girlfriend's who'd had UTI's at some point in their lives that that is how I feel ALL the time - that would get their attention! And you will get some who think you should just suck it up and deal with it - those are the ones that can be tough to deal with. But they have no idea what you are dealing with, so ignore them if you can, lol.
Once again welcome to the gang!!!
How do you eat an elephant? One bite at a time...
Harry arrived 2/23/09!
*IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
IC Diet Cheat Sheet:
IC dx'd Nov 2004
Lymphocytic Colitis dx'd July 2005
Current IC Meds
Vistaril 25mg in the evening
Previous IC Meds taken:
Cystoprotek - 2 caps 2x's a day
Elmiron, 100mg 3x's a day
Ditropan, 5 mg 3x's a day
Wellbutrin 150mg 2x's a day for Anxiety/IBS
Pepcid 40mg a day for GERD
Zytrec for Nasal Allergies
Align Probiotic daily for IBS
07-29-2006, 10:27 AM #6
Thanks A lotOriginally Posted by 1blessed
I have bad news. On yesterday I was suppose to go to get my biopsy done of my bladder. This was my 3rd time going to get it done. I was so upset when I got there the nurse told me that my urine was not clean. I have been on antibiotics since my surgery in April. I told the doctor that I just can't do this anymore I just don't know what to do. I have done all that I know to do. Please anyone. I am trying to stay postive but it is so hard with this pain daily. that things will get better. The good news is that I am off the antibiotics for the moment. By the way Elizabeth A I know what you mean I have had it all done. I am still recovering from my April surgery. The Urologist was shocked at the way my bladder looked really bad blisters and spots all over. The Elavil and other meds for that spasms are not working I was in so much pain last week they called me in another med called PROCED/DS. I think I will look into going to a pain specialist. My OB/GYN mentioned it once. Thank You Guys For Welcoming Me To the Gang
08-03-2006, 05:45 PM #7
- Join Date
- Jul 2006
for the warm welcome! I have been out of town at my dad's cabin in Minnesota and I don't know if it was the heat or the car rides or what but I am feeling ROTTEN! But I have only been on my meds since the 20th, so I am trying to stay optimistic.
I appreciate the kind words from all of you. I almost felt like I wish my bladder would have looked worse so that my pain and suffering would be validated to my friends an family. But I know that's terrible of me, and I should be thankful that my case is "mild". Hopefully that means I have alot of room for improvement. Those of you who have a severe case - but heart goes out to you! I have been off work for a whole month because I was just too tired/miserable/depressed to function. Luckily I have a very understanding boss! I go back to work on Monday, so wish me luck!
Thanks again for everything, all of you! I am so happy to have found people who truly understand what I go through on a daily basis.
08-04-2006, 09:31 AM #8
I cant remember if I answered your post or not. Anyway a cabin in Minnesota would be nice now; it is sweltering where I am in DC. I completely understand what you are going through. My story is on this site Under Patient Stories - Never Give Up TEresa. I was bedridden for years and have been in remission for 6 so dont give up. Sometimes it just takes finding the right meds. e mail me back. Teresa in DC
08-04-2006, 09:35 AM #9
Hi Elizabeth & !!
First I wanted to comment that your description of the events leading to your Dx seem to be a very accurate and all too common scenario for so many of us here. I am sorry you have been through so much to get to this point.
It has been so long now for me since dx and I am doing really well, so as hard is it may be to understand right now, I don't quite remember the details of the beginning as I once thought I could NEVER forget. So, I won't be the best one to advise you about procedures etc.
BUT, one thing that stood out in your story...you mentioned having a normal capacity during the h/c with aneasthesia. Also, the mention of it being MILD, despite the way you feel. OH boy, that part I can remember for sure. I too had a normal capacity, a Dx of mild IC and no nocturia (thank goodness). BUT!!! I felt far from mild. In fact for 18 months (my onset was quite sudden), I felt as if I would die at any moment, I felt as if there couldn't be a person in more pain and despair than myself. That was in 2002.
I was immediately put on Elmiron. Eventually it did have to be increased, but I am happy to say I am basically in full remission. I have cut my elmiron down to 1/3 of the dosage and I no longer need pain meds. I do get a twinge when my period occurs, but nothing like the agony I used to endure.
So, I tell you this in hope that those of us that feel like crud, but get a *mild* dx, actually respond rather well. I never had to add any other meds, although I do take Lexapro at a low dose, but it isn't really for IC, it is mostly for migraines as well as a number of GI issues. Maybe it helps, not sure.
You will be pleasantly surprised at the support and understanding you will recieve here. It is true that the medical community continues to disappoint us, and while it would be easy to attack them, I tend to think there is very little being taught and for those already practicing, very few deal with IC. I hope as awareness increases, so will the knowledge of the Drs and staff out there. I think the majority want to help their patients, no matter the issue...but it is my personal opinion that in the case of IC there is much for us/them all to learn.
So, stick around and no doubt many here will help you navigate all the choices and remedies. I am grateful for the support here, and for the luck I have had in my success with Elmiron. I wish everyone could say that. I hope it is a good choice for you as well, but do know I gave it a solid year. it was so worth it.
Best wishes and lots of understanding!!!~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~"No one can make you feel inferior without your consent."
Eleanor Roosevelt, This Is My Story, 1937
08-04-2006, 12:15 PM #10
- Join Date
- Jun 2005
- Montreal, Canada
Hi and welcome.
I have had symptoms of ic all of my life and I was first diagnosed with mild ic 33 years later with an in office cystoscopy. Later on, during my third cystoscopy with hydro-distention under general anesthesia I was diagnosed with moderate ic. I agree that the severity of symptoms and pain is not always apparent or visible, or explained by the appearance of the bladder. I remember during my third cystoscopy , my uro told me that my bladder didn't look bad at all from an inside view, but when I had a laporoscopy a few weeks later, my bladder was red and inflammed in one area from an outside view. My gyno went inside my abdomen and looked at my bladder from outside. Sometimes, with only an inside view of the bladder you don't get to see the full picture. I had the worst flare of my life and my uro could not believe why I was in such distress in debilitating and agonizing pain, and severe burning and pressure. I felt like my bladder was going to rupture. To be told that after thirty five years of ic that my case was mild was the furthest thing from reality. I have severe symptoms when I flare and have had severe to moderate pain in the last two years. I have had pain throughout my life and I suffer a lot in constant pain. I agree with the others that ic shoud be judged according to symptoms and not the appearance of the bladder. There are ic patients who have very reduced bladders full of glomerulations and scar tissue and have very little pain, with a small capacity and frequent urination. I, on the other hand, have a good capacity under anesthesia, and void almost normally when I,m not flaring, but have lot's of pain. I also don't have frequent flares but when I do they are severe and life threatening. There are others on this board who have been diagnosed with mild ic and display severe symptoms. IC is a complicated condition to comprehend and unravel so don't be mislead by your diagnosis. I don't think anybody can have this condition for as long as I do and have a mild case. I wish I did, but I don't. IC can be very painful for those whose worst symptom is pain, and I would recommend you get a referral to a pain clinic right away because there are long waiting lists. Pain meds do help but they don,t relieve all the pain. When I had severe pain the pain meds only gave me minimal relief. Ic is definitely a difficult disease to manage, and I agree that very little is taught about ic and doctors stilll have a long way to go in understanding this condition and treating it. Not enough research is being done in finding better treatments or a cure. We are told that researchers are working hard to unravel ic, but I don't see any new treatments out there or any progress being made. Take it one day at a time, and try to get through each day as painful and difficult as it is. That's what most of us do to survive. We truly understand and empathize with your pain and frustration and are here to offer you support and share our experiences with you and help anyway we can.
Last edited by marsi4; 08-04-2006 at 12:29 PM.
08-06-2006, 01:06 PM #11
- Join Date
- Jul 2006
Hi Theresa! I read your story and I am so sorry that you had to go through all you did, but thrilled that you are so much better today! I also have had a very frustrating time due to lack of support from friends, family, and doctors. I too work in a law office and have been off work now for 2 months. I actually am going back to work tomorrow because I am feeling somewhat better since I started my meds, but I think it is more of a coincidence than anything; not so much the meds are working yet but that I am not having a flare up at the moment. The main reason I am going to attempt to go back to work is that I am so depressed and and tired of being home. I have been a paralegal for 6 years and I enjoy my job and want to get back in the swing of things. Luckily I have a very understanding boss, but even he has been impatient with me. Not to mention the financial ramifications of being off work...anyway, I am trying to stay optomistic and I can't tell you how helpful it is to have this website and be able to hear stories exactly like my own. I felt like nobody believed me and it is so nice to have people to relate to. Hopefully the heat will let up soon - it is hot here in Iowa, too!
08-09-2006, 01:16 PM #12
- Join Date
- Aug 2006
i was having such a down day regarding all my bladder problems, i felt like no one understood (especially my family and bf) and just to know im not alone feels nice....
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