Questions to ask urogyno.. Please help

**KristaM** · 09-30-2004, 10:06 AM

hi again,
I had my hydro/cysto and the doctor came out to tell my mom that I did infact have IC and that he would see me in about a month. ( I was still asleep) anyways, I'm seeing him on Nov 2. Right now, I am on no medications except Adesol 30's if I'm really feeling terrible. ( they do nothing) and I'm following the IC diet. I have really bad burning I would say 80% of the time and I void 12-20 times a day. ( but not in the night thank goodness) My only main symptom is burning and pressure to pee a lot. I can handle the running to the bathroom but the burning pain really kills me. So, my questions is: do most uros start you off with a particular medication or should I be telling him what I think I should be trying by the info here? Please Help! I don't know where to start. I don't know how bad my Ic is because my mom did not ask so I guess he will tell me Nov 2. I feel like I need to be prepared but dont' know how to be.

Krista

**ICLori** · 09-30-2004, 10:33 AM

Hi, Krista, welcome to the boards! I'm sorry you have IC, but please stay strong and be hopeful because most IC'ers find a med or combo of meds that leave them feeling fine most of the time! It's just a matter of being strong and patient enough to survive until you get to that point! Sometimes it takes awhile - you try one thing then another - and sometimes a person gets lucky and finds the right meds right away - you just never know.

The one thing that is funny about IC is, how severe your IC is isn't necessarily related to what your bladder looks like. A person can have a bladder that doesn't look so bad but is going to the bathroom 60 times a day/night. Or have a bladder that looks awful but isn't bothered really too much by symptoms. The most important thing to go by really is your symptoms.

I've noticed that many uros and urogyns like to start their patients off with a trio of drugs that have had some success with IC: Elmiron, Atarax, and Elavil. Elmiron is a medicine that helps to slowly coat the inside of your bladder so that your bladder feels normal again and the pain goes away. If it works for you, the bladder will even look much better on the inside when they look at it. Atarax is an antihistamine. Many IC'ers have mast cells in their bladder (like allergy cells, LOL) that calm down once this antihistamine is taken, and the patients then feel better. Elavil is a tricyclic antidepressant. It's an old medicine, and they found that a beneficial side-effect of it is reduction in pain. It's really a terrific pain-reliever! And it's given at very low doses, much lower than the doses that are used for relief of depression. So in truth, even though the drug is classified as an antidepressant, you can think of it more like an aspirin or some other pain reliever because that's really what it's doing for you at a low dose.

It's hard to predict what a uro or urogyn will suggest, to be honest. Many of them have their own preferences - they believe one therapy or another works best, based on their experiences. My first uro was a big believer in Ditropan (stops bladder spasms and is a good medicine to help incontinence) and DMSO instillations. Neither one helped me - I don't have incontinence or bladder spasms, so the ditropan was useless for me, and the DMSO made me worse instead of better. However, these medicines have helped many IC'ers so please do not be prejudiced against them just because they didn't work for me. In truth, nothing so far has worked for me but I'm an extreme case - probably less than one percent of IC'ers are like me, non-responders.

Basically the most important thing is not so much which medicine you start with, but that your doctor allows you to try every single remedy on the planet until you do find what helps you to be comfortable and back to normal. What you don't want is a doctor who says, for instance, "well, yeah, some docs use Elmiron but I don't 'believe' in it." Because what if Elmiron is the one drug that will make your bladder normal again?

It seems like there's hardly any right or wrong when it comes to which order of medicines to try. Like I said, the most common ones seem to be the Elavil, Elmiron and Atarax, but I've heard of lots others too, that doctors like to start with.

I hope you will feel like your old self again very soon!

Blessings, Lori

**ICLori** · 09-30-2004, 10:36 AM

P.S. I forgot to say, kudos to you for following the IC diet! The patient handbook has so many wonderful self-help methods for pain relief, and a wonderful moderator on these boards has been kind enough to collect all the self-help tips of all IC'ers into a very useful file, which I know she will share with you when she sees this post.

With self-help methods, you can actually be comfortable much of the time, believe it or not!

**XoChelsey03Xo** · 09-30-2004, 12:58 PM

Hey I just went to the uro yesterday since my surgery. They are putting me on Elmiron and bladder instlations. I'm also having to go to physical therapy for my pelvic floor muscle. I'm also taking urimax right now. That seems to be helping with my burning. Good luck at your appt. on Nov. 2nd. Chelsey

**Melanie** · 09-30-2004, 03:24 PM

{{{Krista******

Explore the ICN handbook and this website. Write down your questions and make sure the Dr takes time to discuss them with you!

My advice is to explore the IC Diet. I get alot of burning and I find the MOST impt factor is what I drink. I drink Evian and it helps alot. I just need to drink alot of it to keep my urine diluted (light yellow).

**kelly McC** · 09-30-2004, 03:28 PM

I would write all your questions down. Tell your doctor what you told us and ask him what you can do for it ? Printing out some things from here might be helpful .. Write your symptoms down, voids, pain level ,burning ect.... it may help your doctor understand what you are going through. If your appointment is not until Nov. and your uncomfortable one suggestion might be call the office and let them now whats going on. huggs,
Kelly

**KristaM** · 10-01-2004, 06:32 AM

Thanks so much for your replies.. I have always gotten some great advice here. You have become my family..
Krista

**jjmowen** · 10-05-2004, 09:57 AM

Everyone gave you great advice, I just wanted to add something. Please call your doctor. If you are constantly buring, they may call in some medications now to help you make it till your appointment next month.

My doctor gave me pyridium before I was ever diagnosed to help with the burning and pain.

Don't be afraid to call. I'm sure they will be understanding.

Jenel

**theclownster** · 10-05-2004, 05:39 PM

Hi there! I'm sorry to hear you have such intense burning pain. There is a risk for infection after the hydro/cysto so I would definitely make sure you call the doctor asap for some pain relief and to also rule out a possible infection. If you just had your hydro/cysto, intense burning may be normal for a couple days. Your doctor can prescribe something like Pyridium Plus to help with that. It changes you urine to a funny color - but it works wonders. I prefer the pyridium plus over just plain pyridium.

Additionally, I would let them know exactly how much pain you are in and tell them you can't wait to November to get some relief - in my opinion that's completely unacceptable health care and you have a right to get help sooner. (I work in the health care industry) I feel for you and know how frustrating this whole process can be. I'm on my second uro and it took a while to finally get referred to a urologist because my family doc could never find anything wrong with me and I started to think that maybe my symptoms were in my head. Since I've found a new uro - things are great and my doctor really responds when I'm in pain and discomfort.

I hope you feel better soon!
Hugs~
Jennifer