PDA

View Full Version : Newly diagnosed


designermillion
09-14-2007, 07:58 AM
Hi everyone,

I was diagnosed with IC on Wednesday, after dealing with issues on and off for the last 10 years (I'm 35). I have been to numerous physicians thinking I had a UTI. Sometimes I did and sometimes I didn't. The cultures would come back no growth and some grew bacteria. No one ever mentioned IC, and just prescribed me antibiotics. I even saw a Urologist and other than talking to me and doing a Renal Ultrasound, he basically treated me like it was all in my head. I don't think he even saw female patients regularly, because he seemed uncomfortable, so I just went back to my Primary Care Physician (PCP) for treatment when I thought I had a UTI. I did have some success taking 100 mg of Macrobid after intercourse (thinking that a UTI was my problem), and reduced the number of them down to 1 or 2 a year. However, in July I started developing what I can only describe as being bladder pressure. I felt like I had to urinate even after I'd just gone. I complained to my OBGYN at an appointment the same month, and told her about my UTI troubles. She just told me to take some Pyridium and see if that helped. She didn't even attempt to take urine or anything else. Another few weeks went by and it finally got so bad I went to my PCP and she did a culture which came back positive for bacteria. I was prescribed Cipro. After 2 weeks of taking that, I was still feeling urgency so I went back and she did another culture. This one came back negative, so she didn't do anything further for me. Two more weeks went by and the urgency not only got worse, but also started developing bladder burning, so I went back to see her again. She did another culture and switched me to a new antibiotic. She also gave me Urispas for the pain. She called a 2 days later and told me the culture was negative. I told her the Urispas was not working for the pain, and she said I'd need to see a Urologist, because the culture showed I had nothing wrong. I suffered through several more days of pain until I could get an appt with a Urologist this past Wed. I was pleasantly surprised when i arrived to see all women in the waiting room. When I was taken back to see the doctor, I was told he was not only a Uro but also a GYN. I was a bit shocked though, when I was told to get undressed for an "exam". After some poking a prodding and the doctor asking me where the pain was triggered, he told the nurse to prepare me for an instillation. I had no idea what that was, but soon found out. It was pretty painful for me, since I have never had a catheter. I found a little bit of relief when it was over, but it didn't last long. I was right back in pain yesterday morning and had to come home from work and stay in bed all day. The doctor prescribed me an antihistamine to start taking twice a day. My first dose was Wed night. I see that is a common treatment here. He also prescribed me 100 mg of Macrodantin to take before bed each night for 30 days, and also prescribed Vesicare. He told me to take the Vesicare only if I had not felt an improvement in 2 weeks. So right now I'm just taking the Hydroxyzine + Macrodantin. Today is Friday and I am feeling better (I think). I had a tad big of urgency, and almost no pain. Should everything be working this quickly (I'm not complaining!)? I guess I am just being cautious, because I have been in pain for so many months, I am just waiting for it to come back any second. I did alot of reading yesterday, and saw that they think there is a correlation between women who have IC and severe allergies and/or irritable bowel. I happen to have both! I did notice that I can also breath better today. It's funny how you start re-thinking everything you've been through, and all of a sudden it all makes sense. I adopted a new cat around the time all this started happening and my allergies went WILD. I am wondering if this has anything to do with it? I have also suffered for years with days when my urine felt hot or I just didn't feel right, so i would pop an antibiotic and pray I wasn't getting a UTI. I guess this was it all along. Oh a couple more questions...what is everyone being prescribed for pain killers? I don't know what to ask for? Vicoden? Also, what is this Elmiron all about and I am wondering why my doc didn't offer me any? Many many thanks in advance!

Cheryl
Jacksonville, Florida

dancemomof2
09-14-2007, 08:03 AM
:welcome: to the ICN. You will find a wealth of info here. Like so many of us your story is so familiar.

designermillion
09-14-2007, 10:40 AM
The pain started coming back around 3:00 pm. I've been trying to get in touch with my Uro since 1:30 pm yesterday to see if he'd call in a script for a pain killer. No reply. Just found out the nurse called my house this afternoon and not my work! She didn't even bother to say anything about what I'd asked for, she just said let me know if I can help you. I called back again and got voicemail. It's now 4:40 and what do you wanna bet everyone is already gone for the weekend? This just really sucks!!!!!!!! I can look forward to a painful weekend. Why don't doctors offices call you back??????

sickofmybladder
09-14-2007, 10:50 AM
So sorry your in pain - I am newly diagnosed and was only able this week to get anything for pain (as needed) 5 weeks after diagnosis - I learned alot of tips from this board to get through - and still use these before using any pain meds - (it won't be perfect but hopefully will help a little):
heating pad - really helps me alot
lay down with a pillow under your knees
try taking some tums (other people suggest baking soda - but I have high bp so I don't do that)
HOT shower (or bath if you can handle - but don't bathe in it just soak)
LOTS of water

I hope your feeling better soon -

(FYI - my instillations so far - I've had 3 - don't last longer than 1 day either - but my doc says hopefully as I've had more they will last longer - also if your schedule allows they can do the rescue instillations up to 3x per week - unfortunately I have to work full time so I can only get out of the office for 1x per week).

Bessie
09-14-2007, 10:58 AM
:welcome:
We are all here for you :)

designermillion
09-14-2007, 01:42 PM
Thanks everyone. I'm not sure I want to go the route of frequent instillations. They're painful and they didn't offer enough relief for me to keep doing them. I just don't understand all of this and why the pain comes and goes. I also can't believe my doctor didn't offer me anything else for pain while I was there. He just said come back and see me in 4 weeks. Then when I call his office all I ever get is voicemail. The strange thing is, I am almost pain free in the mornings, but as the day wears on, the pain starts increasing. Is this because I'm relaxed when I sleep? That seems to be all I've been doing lately. I can barely even function at work. All I can think about is the pain. I wish there was just a pill for relief so we could get on with our lives.

Agape
09-14-2007, 02:14 PM
I know what you mean about the instillations. I don't like catheters either and they don't last long enough to go through all that pain etc. At least not for me. Fortunately my uro gave me a prescription for pain meds even before I was officially dx with IC. Maybe it was because I was in tears in the office. I take 50mg of ultram when I have to work. I try to do without them on the weekend and save them for when I really need them, because I know just like you said, for some reason drs just don't want to give out pain meds. I guess they think we will all become "junkies" or too dependent on them. However, if this is the only way I can function, then please give me pain meds!!! I too wake up feeling okay, but if I don't take the pain meds, then by afternoon I am in misery. I hate the way we are treated sometimes by drs offices. We are the ones paying and keeping them in business, but they treat us awful by not returning calls etc. I do have a wonderful uro/gyn who will prescribe pretty much anything I need.

GinaGV
09-14-2007, 02:59 PM
I just wanted to welcome you here too!

Im newish to these boards also and I must say I have learned more about this terrible condition in the month or so I have been here than I have from my urologist in the few years I have been going to see her. Everyone here is so nice and helpful, and they will go out of their way to make sure you are doing ok. Its like we are one huge family here watching out for each other, and its actually kinda nice to be able to come here and if you've had a really bad IC day to be able to complain and have lots of understanding.

Gina

Berkshire Road
09-14-2007, 04:51 PM
:welcome:

Sometimes it takes time to find the right doctor to work with you. I emphasize the word "with." If you and your doctor are not communicating well, it's not a good sign. Maybe things will work out with this doctor, but maybe you want to ask around on the regional forums, and see if anyone knows someone better with IC in your area.

As far as Elmiron, if you scroll down the page you'll find an entire forum devoted to it.

I'm wondering why your instills are so painful. Are you getting DMSO or a rescue cocktail (usually something like heparin, lidocaine, sodium bicard). If it's the second, then the instillation should not be so painful. It helps a lot if you can relax. Try to breathe out when they are inserting the cath. Also, ask about the size catheter they're using. A pediatric catheter should be big enough for the treatment, so if they're using something different, ask them why, and if they can change it.

Pain control. Well, that's a hard topic. A lot of us have had trouble getting adequate pain relief. I was in that situation for nine years! Well, the level of pain with IC varies greatly from one patient to the next. So the appropriate pain meds vary as well. A piece of advice: If your uro will not order pain meds for you, consider asking the uro or the PCP to refer you to a pain management clinic. Sometimes uros are hesitant to prescribe narcotic because it's not their area of expertise. Sometimes, they really do think we are or will become junkies. With pain control, I think a lot of us who have gone that route have been successful.

Well, keep reading the forums, the Patient Handbook (link is on the top of the page), and if you have questions, keep posting them.

We certainly do understand what you're going through, and I'm sure most of us want to help as much as we can. Good luck to you.

dreamy
09-14-2007, 06:44 PM
Well at least he did something to try to help you. No doctor has done anything of value yet for me. I am getting seriously mad over it. I think I should try atarax but I am finding it hard to get from the doctor? I think thats rediculous! Its not even a controlled substance.

Agape
09-15-2007, 04:00 AM
I go to the best known specialist in this area for IC, but he sure isn't easy to talk to about anything and has a very business like attitude with very little compassion. If I ask him a question and he has covered it before, he seems to get annoyed with me. I guess I should be taking a tape recorder or another person with me, so I won't forget what he has told me. I sometimes wonder, if people like me weren't going to him, wouldn't he be out of work?? I hate it when doctors act superior when most of them have never been through what we are going through. It isn't the same studying it in a text book.

designermillion
09-15-2007, 06:37 AM
Since I didn't get a reply from anyone over the phone yesterday, I noticed that my doc's email address was on the business card he gave me. I took the chance and email him last night when I was having alot of pain and REALLY annoyed, and to my surprise, he replied. His response is below. Has anyone been prescrived Neurontin before? I guess emailing was a good idea. Maybe he will take the initiative to get his office staff on the right track about returning calls. In my experience, the office staff and/or nurses are a big stumbling block sometimes. They hold the key to the doctors. If they won't let you past them, then the doc will never hear you.

His email:
I am very sorry to hear that you did not receive a timley response- I dont
know why! I will look into this communication issue. What number did you
call when leaving a message??

Elmiron is a medicine for IC however in my experience it is not very
effective and takes 3 to 6 months to work. The bladder instillations tend
to be the best instant treatment for bladder pain. Dont know why you had
such a short response. Please review the list of related foods that trigger
IC type symptoms and see if some of these foods may be associated with your
pain. Stay with the medications I perscribed for you- hopefully they will
work soon. The pain medicine that might work best for you at this time can
not be called in over the phone- I can leave a RX at the office downtown
Monday if you still need it. I can start you on NEURONTIN over the weekend-
I will try to get in touch with you tomorrow- or please e-mail me your
pharmacy phone number.

Bessie
09-15-2007, 06:56 AM
Sounds like someone is going to get into trouble come Monday morning. He sounds very upset with his staff as he should be.

I have taken the Neurontin before but I had to get off of it because it was causing me chest pains. It is a very good medication though for nerve pain. I wish that I could have taken it.

The prescription that he is leaving for you sounds like a pain medication that can't be called in but has to be picked up.

It seems like he is really on the ball and is trying everything he can do to help you out. I would stick with him for a while to see how things go and if you don't get the help you need or don't feel comfortable then you can always look for another doctor.

I love the fact that you emailed him :smile tee That is wonderful!!!! They need to know what is going on in their office.

Take care :hi:

coleman999
09-15-2007, 11:49 AM
I am new as well as of friday. I am very scared and really do not understand the condition at all. I am depressed and my husband do not know why. I have a 6 year old son as well. I am so tried most of the day. It took me 3 years to find out what was wrong with me. I went to doctor after doctor until I went to the Urlogist. I am glad to know now but I know this is going to be a long road. I have pain in my side all the time. I am hypogycemic and anemic too. The things I need for my anemic is vit C is causing problems on my bladder and the things I need for my low blood sugar is causing bladder problems. I need so advise and help

designermillion
09-16-2007, 05:31 AM
I just wanted to say thank you for all the messages of encouragement. It really is comforting to know I'm not the only woman out there going through this. It is also a relief to know there is a name for this after suffering for so many years. I just wish there was a magic pill to cure it.

I had an OK day yesterday. I did have the urgency which never seems to go away, but it didn't seem quite as bad. I also wasn't having the pain. Maybe a TAD bit last night but it was tolerable. I was even able to go get my hair done and sit in a chair for 2 hours! The antihistime is making me so sleepy, that I took two naps yesterday. One before getting my hair done and one after. I think sleeping is actually a good thing. My mom (who is a RN), seems to think my bladder relaxes when I sleep, therefore for a few hours after I wake up I do pretty well. I'm OK again this morning. I am having a little big of urgency but it is tolerable right now. I even did some light housework.

The doctor emailed me back this morning (from his home email address!!!) and said he called in my prescription from Neurontin. He said it will take a few days for me to notice an improvement from that. I hope and pray all this works. I want to get back to my life.

sasi
09-18-2007, 06:52 PM
Until you get some answers go on the diet. Eat potatoes, carrots, oil and pears only for 10 days. Drink tons of water. Keep yourself warm and try the supplements people use here. Start exercising. And try to be positive about it. All help a little to most people. If you have IC, one of these may help you at least a little.