View Full Version : new to the boards
03-18-2004, 01:18 PM
I have been reading for weeks and am so thankful to finally find someone.....anyone who really understands what IC is all about.
I was diagnosed 31/2 years ago but have suffered many,many years without knowing. I had a hysterectomy 2 years ago, but now think I was just having an IC flare up. When I went to a new gyno, he did a pelvic and I just about came off the table. He said noone should be in that amount of pain and scheduled surgery. But said he was hoping that would take care of my pain. And it did for awhile, I think because I didn't have to go through the 'monthly' stuff. But now I am have MAJOR low pelvic pain again. It hurts exactly like the cramping I had back then. Does anyone else have this kind of low pelvic pain as their main sympton? This flare came on unexpected. I had started walking and started getting the pelvic pain after about 20 minutes. Then it got so bad I had to call ur even though I was in remission just in August when I went in for check up.
I hate this disease (or whatever you classify it) it is so unpredictable. 3 weeks ago I started the "cocktail" instillations. The catherizing pain was awful, even with using small cath and asking for lanocaine. I have been going 3 times a week. I had a treatment on Tues but had to call today ur today to go back in my pelvic pain was unbearable. But after reading the boards I tried taking the pain pill before going in and that helped alot. But can not drive with taking meds so I won't always be able to do that. Don't see the doc until April 8th, I am just not sure this is working.
This is really getting me down, cause I can't sleep without ambian. And I have all the other fun things that come along with IC.............fibromyalgia, sinus problems, acid reflux, irratable bowel, mouth sores, dry eyes.............you name it and I got it. I have taken wellbutrin for years due to really bad pms symptons and mood swings but this time I am really getting depressed about all the pain and you can't do anything, or eat anything. My friends are supportive but I am sure they are tired of me complaining so THANKS for letting me join the IC family to vent.
03-18-2004, 01:48 PM
Welcome denise:hi: ,
I am sorry your in so much pain . I hope you can get some relief soon ! I am new to IC and new here ! Everyone is wonderful and very supportive !:) I will keep you in my prayers :grouphug:
03-18-2004, 03:14 PM
Hugs, Denise!! :grouphug:
I am so sorry to hear you are in so much pain! You have come to the right place for support though. Everyone here is GREAT! :)
I can definitely understand your pain with being catheterized... I have it too. It always KILLS me when the cath passes my bladder neck, no matter what they do (lidocaine, etc doesn't work for that part). I am hoping the DMSO instills I'm doing end up being worth it in the end.
I hope you are able to get some relief soon!
Hugs and love
03-18-2004, 06:06 PM
I am glad you found us! This board is fully of amazing and supportive people. Hang in there!
I wanted to add my welcome.:)
03-19-2004, 02:33 AM
Welcome to the boards, you will love it here!
03-19-2004, 03:09 AM
Yes that kind of pain was my worse symptom at one point. I know what you mean about having the whole package...grrrrr.
Glad you found us.....this is a really great place!
03-19-2004, 03:23 AM
I've had IC for years but was not diagnosed until April of last year. I had been to several doctors complaining of the lower pelvic pain. I also had a hysterectomy in 1986. In 1990 the pain came back worse then it was before and no one could tell me what it was. When I'm having the low pelvic pain, I use one of the stick on heating pads, take Lortab and sometimes flexril. That helps! I've also been told that I have fibromyalgia, acid reflux, IBS, sinus problems. My mouth does get sore a lot but I did not know what was causing it. I didn't even think about the IC but I guess that could be. Right now, I'm taking antibotics for sinus infection and bladder infection and trying to work every day. Makes it rough. I hope you feel better soon.
03-19-2004, 06:28 AM
Vent away...We all need to do it and this is the place we can do it, safely.
03-19-2004, 11:19 AM
Thanks for welcoming me to the IC club!!
:hi: I know you ALL will be my angels :angel:
I had a much better day. NO pelvic pain today. Treatments will usually last at least one day.
But how many treatments do you have to have before you can say this IS or IS NOT working. I know everyone is different. God bless all who replied.
03-19-2004, 02:15 PM
I also wanted to add my welcome to you sending you healing prayers and hugs your way.
03-19-2004, 05:07 PM
I'd like to add another welcome message. I'm very glad you found the IC Network.
I do suggest you read the information in the Patient Handbook at http://www.ic-network.com./handbook/ You'll find a wealth of helpful information to help you to deal with IC.
I was diagnosed 29 years ago and would just like to say that there is life with IC. It may take some time to find exactly which treatment options work best and which foods and drinks are a problem, but most of us do.
Sending warm healing thoughts,
03-20-2004, 04:08 AM
Welcome! Sorry you have IC, but glad you found this board. The people here are very supportive and helpful. Many have been through similiar experiences and can relate personally. Hope you start feeling better soon.
I went years with pain, thru five doctors and had a complete hystorectomy before being diagnosed with IC in November 2003. :rolleyes: I had never heard of IC much less pronouce it. I was so happy to find this board. I'm not alone here. Tilly :)
03-20-2004, 08:30 AM
Welcome I'm new here too,but not to the pain none of us are.There are some really sweet women here.You told part of my story and I'm sure many others.Donna's right each one of us has to try what works for us and there is life with i.c.,I just added prelief to my other meds and food changes,I kept thinking people didn't know what they were talking about,How could something so simple help?Guess what after several months of not being at work and sometimes bed ridden,I've been out shopping and being able to parent.Is the i.c. symptoms gone,No but I'm living again and so grateful!You're in my parayers and so are all of these other kind women.Hugs to u.Coleen Sunshine:hi:
03-22-2004, 09:42 AM
I am seeking help from anyone & found your site...IC has some of my symptoms but maybe not all. I have suffered from recurring bladder/uti's over the past years, but they have been increasing in frequently for the past 1 1/2 years. These are true infections, as the urine cultures eventually do come back as positive....when cultured by anyone but my Urologist, oddly enough.
I have had one a month for the past six months. In the past, went to a Urology Group (10 docs) where you drop off a sample and they call you back. Their office would tell me there was no infection...I would call back and beg them, "are you posiive?? I KNOW my body and something is wrong!" This happened 3 times.
Then, in frustration, because I knew in my heart I did have an infection, I would go to my GYN and they would do a culture, give me Cipro or another antibiotic and the symptoms are gone...POOF! Like that! At least they are gone for a month...then they come back about 2-3 weeks later. It is like the germ/whatever fights back over the antiobitics.
Now...nothing is working. Yes, I know all the proper hygiene things (I am 56 years old and have suffered from bladder problems since I was 3 years old).
I think that maybe this also causes abdominal pain, something like gas/bloating? Is that what you all are referring to?
In addition, I have been struggling with a mysterious rash on my ankle and lower leg, similar to poison ivy. It stays the same..itches like mad but doesn't get much worse or much better.
At one point the rash spread all over my body, arms, head, chest, abdomen. Following the last dose of antibiotics in late February, the body rash went away everywhere but that section of my lower leg. And there it just sits...not growing but not healing.
Can anyone tell me if these things are related?
I am desperate to find some help. Have made another appt. with the same Urology office although (can you blame me?) I have absolutely no faith in them whatsoever. Thank you.
03-22-2004, 10:13 AM
Sorry to hear u r suffering.You have come to the right place these women are great here!You can not tell by a urine sample if u have Ic you need to ask an urologist to do a test for ic on u.Also sounds like your rash could have been reaction to antibiotics that they gave u,that has happened to me before.Bottom line is u need to call your doctor to give u the correct information u r looking for.Good Luck,stay in touch with these women.Hugs to u,Coleen Sunshine
Hi and sorry to read you are going through so much right now. I also had a rash appear on my arms, and mine was to due to an antibiotic I was put on, before I was even diagnosed with IC. I hope that you can get some relief from your symptoms and your rash, I know it can be so frustrating. Please keep us posted as to how you are doing, and if you find a doc who can help you out. I know it all takes a while, it did me, but now I am very happy with my urologist and my Nurse Practitioner who take very good care of me and my IC. Hang in there, we are always here for you, hugs Iris.:hi: :grouphug:
03-22-2004, 10:24 AM
I know your frustration. I have spent the past 3 years with UTI "symptoms" - sometimes with infection showing and other times not. Whenever I was put on Cipro I would be "cured" until the next time. My most ongoing bout was from last July until I was diagnosed with IC in late January. I had several rounds of Cipro and would feel better each time but the symptoms would come back - mostly urgency and burning all the time (had relief when I went to the bathroom). I went through a cystoscopy (not under anaesthetic) and urodynamics, all of which didn't definitively show IC; however, my uro felt that based on my symptoms and the duration of them, I have a "mild" case of IC. I have been on Elmiron for 2 months and must say that I finally feel normal. In addition I go for pelvic floor therapy which I also think has helped tremendously. I plan to stay on the Elmiron for 6 months and then revisit my uro. My hope is that I will be able to try going off the drug, watch my diet and still feel good. I must also add that I think a lot of my problem is driven by hormones - I have always been more symptomatic around my periods and since they seem to be getting closer together my feeling good days started becoming less (I'm 45 this year).
I wish you luck and keep reading through the boards, you're likely to find someone who has had a similar experience to you.
03-22-2004, 01:54 PM
Thank you, October, Iris and ColleenSunshine for your kindness and words of encouragement. It is very frustrating to try to find out what is wrong.
I don't KNOW if this is IC but your Board and IC Foundation Handbook listed a number of symptoms I have so, we will have to see. I appreciate your help. Perhaps my never-ending round of antibiotics HAS contributed to the rash.
Many of your IC postings talk about debilitating daily pain, which (thank goodness), I am not suffering. The aggravation and real discomfort of a UTI and the fear of it going into a full-blown kidney infection....yes. Also, buring and pain during intercourse and persistent rash and itching. But I cannot claim to suffer in the way many of these people are. Which makes me feel perhaps my problem is not truly IC (?) I am going to look at Sam's and Costco for that Bladder Q which is mentioned in these posting though...it can't hurt! And going to my old, unreliable Urologist tomorrow.
I will check in here and touch base as I journey along looking for help! Thank you!
03-23-2004, 04:08 AM
Carolyn...Welcome to ICN.
I, also do not have the 24/7 pain that some of the people here have. None the less, I was dxd with IC in August 2001 by a Cysto/Hydro. IC is such an individualistic disease. We are all different and display many different symptoms.
From what I understand, one of the reasons for my recurrent UTIs is that my bladder does not always empty completely when voiding. Using Ultra Sound, the uro I went to in the beginning discovered that I was retaining a small amount of urine even right after I thought I was empty. That held over urine caused irritation of my bladder wall and UTIs.
There are days that I have what is called urgency/frequency and I realize that I am not completely emptying my bladder. When I experience these symptoms, I drink more water than usual to wash out and dilute the held over urine, therefore hopefully heading off the burning pain of my flares. This usually works for me. :)
03-23-2004, 04:58 AM
Thanks, Sharon. I am leaving for old Urologist office in a few minutes, and will tell them of my past experiences at their office (where they would say no infection when I did, etc.) and hope they have become more educated on other diseases in the past couple of years instead of mass-diagnosing.
I am praying for help and grateful for the advice found on this Board even in one day!
03-23-2004, 05:36 AM
I just can't say enough about switching doctors if you feel they're not doing a good job. It's difficult and kind of a pain to switch, but switch switch switch until you find someone good. It pays off.
I think they should definitly check to see if your bladder is fully emptying. Also, a cystoscopy is probably a good idea to--that way you can check and see if it might be I.C. But, if you're uncomfortable with that ask them to do it under sedation. Much easier--you won't feel or remember a thing.
But, if you truly feel they are recurrent UTI's there are so many options. You can go the medical route and take a low dose of an antibiotic such as Macrodantin 50mg/day each day and that will prevent infections well with minimal if any side effects.
Otherwise you can go the natural route: There are so many options for you. Cranberry pills, Uva Ursi leaves, over the counter things like AZO, Vitamin A & E really help with bladder irriation--the list goes on and on. You can look up natural remedies for bladder infections on google and I'm sure you'll find a ton of stuff.
Another thing people don't know is that Alkaseltzer used to be used as an antibiotic for UTI's--and it still works, it just isn't marketted as such. You should really give this a try--it's amazing.
Also, I've heard of this place online that can provide herbal supplements specific to your needs addressing your ailments. The website is apothecure.com
P.S. When my symptoms first started popping up I didn't have continuous pain for nearly 2 years. It was off and on and I definitly thought they were UTI's--the general doctor would say they were "positive" when in fact they weren't. I may have had blood cells in my urine that on first glance looked like an infection, but when I obtained my medical records and had them re-read there was no real infection.
03-23-2004, 12:24 PM
Thanks to everyone! YOU WILL ALL RELATE TO THIS STORY!
Went to old Urology practice today, gave urine sample and waited for Nurse Practioner to come in. She reviewed my chart and I told her why I had stopped coming to them 2 years ago after they kept telling me I didn't have UTI's when I did. I told her of my experience of leaving their office and going straight to my Gyn where they would test me and give me an Antibiotic and BINGO, all symptoms gone within 24-48 hrs.
She seemed defensive and wanted me to provide her with all culture results from other doctor that refuted her results. I said I would be happy to ask for them (I could tell she believed me to be making the whole thing up, or exaggerating it). I asked what my sample showed and she said it was "clear, not infection."
I was upset as I KNOW I have a bladder infection...the stench of my urine, the burning, frequency...all of it! She said, "You probably just have a Yeast Infection from all these months of taking antibiotics for UTI's...that's what's making you think you have a UTI."
I said, "I know what a yeast infection is and I DON"T have a yeast infection. I have a bladder infection and this visit is just like all the others I had with your office. I have wasted my time and yours."
She reluctantly said she'd do a pelvic "just to take a look" and asked me if I minded being catherized. I said I would welcome ANYTHING that would lead to help.
They catherized me and she and the nurse nearly fell over....they emptied almost 2 cups of urine (180 cc's I think they said???) from my bladder after I had just emptied my bladder for the urine sample. Their faces told the story as the smell of infection filled the room (sorry to be so graphic but someone else may benefit from this story). I saw the nurse turn away and I knew she felt sick. I asked her to empty it but the Nurse Practictioner said they couldn't. They were obviously shocked at the amount. She said, "You were right..the odor IS foul." They both practically ran from the room and didn't come back for 15 minutes.
When she returned, I asked her if she had ever heard of IC's and that I had been reading about them. She said rather grimly, "Yes, I have....well, that is what I think we may end up diagnosing you with...I want the doctor to take a look at all this"
This from a woman who had insisted I had a simple vaginal infection, and had I not been to this website and found strength to stand up for myself...would have sent me away again!!!
She said, "Our tests still show your urine is clear and no infection...but obviously there is infection there. That was a large amount of urine in your bladder and from the odor, it must be infection present. I DO BELIEVE YOU. PLEASE DON'T LEAVE OUR PRACTICE THIS TIME....WE WANT TO HELP YOU."
AT LAST..Thank Goodness! But it took so long to get there. Why?? Why don't they try harder? All the signs were there over and over. Their entire attitude toward me changed when they saw I had not made this story up...you could see they were either ashamed or sorry for the delay (2-3 years) in treatment. but what I cannot fathom is this: I live in a major city and this is the largest & most respected Urology Practice in our area. Wouldn't you THINK they would pursue something like IC's for people with repeated UTI's with negative urine tests? I don't get it.
They are going to do some type of surgery in a week or so to put dye in bladder and kidneys (I was in a blur of happiness to finally have SOMEONE believe my story at last, that I didn't take in all that just yet).
03-23-2004, 12:38 PM
Hello and Welcome Denise and Carolyn,
I also do not know what I have.My primary care dr.and Uro thought that I had I.C. with all my symptoms and blood in my urine.I had the Cysto then Hydro done.Uro said that I do not have I.C.but had alot of blood in urine,peeing constantly ,urgency and frequency and accidents.He said that I had a bladder infection ,took antibiotics for 20 days.He gave me detrol La and said,This should clear it up.I felt he had no bedside manner and was brushing me off.
I recently found a new Uro and he is so nice and spent alot of time w/me,asked alot of questions...He looked at my bladder (after just peeing) and said that my bladder is still holding 4 oz of urine.Im doing a vvoiding diary right now for 2 wks and having a cysto done over ...he says i might have a bladder fistula??Or whatever I have,he says "somethings def.not right' esp.where i am retaining 4 oz of urine.
So it pays to find a
03-23-2004, 12:42 PM
Wow just read your 2nd post now ,2 cups of urine!!!! wow thats alot!!Good 4 U ,im glad they finally believed you
03-23-2004, 01:34 PM
well, they said 180 cc's but I don't know what that is...they took away 2 cups that were full, so I called it 2 cups..what does a cc equal (back to science class for me!)
03-23-2004, 01:43 PM
Lordy, lordy...I really mispoke..my husband has informed that 180 cc's is NOT 2 cups...the cups they carried away must have been little cups for urine samples. I saw them from my prone position!
I do apologize for exaggeration beyond belief...that was worthy of the term "pee like a race horse"!!
03-23-2004, 03:23 PM
Carolyn - good for you! - let's hope you're on the road to getting to the bottom of things. Keep us posted.
03-24-2004, 12:43 AM
Good for you for standing up!!! I think 180cc is about 6 oz of urine. I can't remember exactly right now--when I had to keep my voiding diary I knew--but not anymore.
Anyways, just want to say that you are an example to us all. I think it's wonderful how you stood up for yourself. Keep doing it! The road to diagnosis can be very long and bumpy to say the least.
03-24-2004, 10:34 AM
someone on the board here recently said that there is 30 cc's in 1 oz
03-24-2004, 11:55 AM
Yes, thank you! I had written back last night about my gross exaggeration (see previous posts)...didn't mean to mislead. But am glad to know what cc's equal. Thank you!
I just found this site today and read your post. Sounds as though you have full plate. Just wanted you to know my prayers and best wishes go out to you.
TX1 from Canada
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