Overwhelmed and scared

[princesscm99]

Good morning everyone,

My backstory: I had several UTIs from age 18 on (I'm 26 now), with some progressing into bladder and kidney infections. The most recent of these was in February, and although the Cipro took away the burning with urination the intense bladder pain, frequency and urgency all remained. Since I have had these same symptoms before, only to be told it was probably small cysts and they would go away, I scheduled an appointment with my PCP thinking that it was ovarian cysts that had gotten big and needed to be removed.

The PCP did a pelvic ultrasound, urinalysis, and blood work, and all came back negative. She told me that it was hormonal and prescribed me a lower dose birth control. :mad:

Not accepting this answer, I scheduled an emergency appointment with my OBGYN. At this point I hadn't slept in several days for more than 30 minutes straight because of pain and urgency. My pain is on my right side and sends shoots of intense pain down my right leg. The day before the appt with the obgyn I was on deadline at work and had 3 cups of coffee and a gigantic sugar free Rockstar. By that evening I wanted to throw myself off a bridge.

I went to the OBGYN and she immediately said, "I think you have something called IC." The symptoms checklist fit me to a T. It is much worse during my period, intercourse is painful, and I seem extremely sensitive to caffeine and citric acid. She gave me a sheet about diet and said that she would do a potassium sensitivity test to be sure, and then she would like to start me on weekly treatments for 9 weeks, and on Elmiron.

Although the PST was scheduled for today, the office called to reschedule due to being out of a medicine they need.

I have so many questions, and while some of them have been answered by this forum, many others have been created.

I am now assuming she intends to start me on DMSO, which I already have a problem with. Although it seems to work for some, the chance of some serious side effects makes me question whether it should be the first thing I try. What treatments are best to try before the DMSO because they have less risk of side effect? Do I need to see a urologist (which means going back to the original PCP who said nothing was wrong, to get a referral) or can I get the same quality of care from an OBGYN? If she just intends to diagnose via the PST, do I insist on the cysto to rule other problems out? I am currently in remission from cervical cancer and although I know bladder cancer is very rare, you can understand me wanting to be sure I do not have it. What tests do they have to do to rule out bladder cancer, endo, tb, and kidney problems?

I'm sorry for so many questions, I'm just very scared of everything that is going on. My OBGYN talked like this can be cured in 10 weeks, and now I learn that there is no cure and it is something I may have to deal with forever.

Any help and advice is most sincerely appreciated!

Thanks, Christina

[ICNDonna]

I think it would be a good idea to telephone your OBGYN's office and ask what they use in instillations. That way you will at least have an answer to that question. Some GYNs are able and willing to treat IC so it's a decision you will need to make. If you decide to see a urologist, your GYN can sent diagnosis information to your primary care doc so the referral will be facilitated.

And by all means, let your doctor know that you are concerned about cancer so you can have some reassurance on that.

If you do have interstitial cystitis, there is no cure, but most people with IC find it to be manageable. I have had diagnosed IC for over 33 years now and I do very well the majority of the time.

Hang in there.

Sending welcoming hugs,
Donna

[SharonA]

:welcome: to the ICN...

Biopsies of the bladder can be taken during a Cystoscopy/Hydrodistention under anesthesia, a surgical procedure that, besides the PST, is also used to diagnose IC. That is how I was diagnosed by a Urologist.

I think it would be a good idea to talk with whichever doctor you feel is willing to help you and ask about the tests you listed. Have you searched on the internet about what tests are available? That might be a good place to start until you can get in to see a doctor. I always feel that the better informed I am about what is available, the better I understand what questions to ask a doctor.

It is very normal to feel scared and overwhelmed in the beginning. I certainly was. Shoot...I had never even heard of IC before the Uro suggested that it could be what was causing my symptoms.

I also want to say that I have been diagnosed since August 2001 and feel so much better now than I did then. It is possible that you will, also. (((Hugs)))

[omarito]

First i want u to take it easy, ic is not a dangerous diseaes, but sometimes it is hard to deal with, i am with sharon, taking a biopsy from the bladder is an easy procedure , u should talk to ur urologist about it, u could feel relieved to exclude bladder cancer, in the same time it can help to diagnose ic,

then if u have it u can talk to ur urologist about taking elmiron which is the most used oral drug to help with ic, i hope u reach a diagnosis soon, we r here for u anytime.

[hanabell0421]

Ok, am I missing something here. No one at my Dr. office ever told me that there could be serious side effects from the DMSO treatments.................NOW I AM GETTING VERY NERVOUS. WHAT ARE THEY??????

[leelee88]

:welcome:to the ICN.. Sharon gave you some great advice about the cysto/hydro and maybe having this for a Dx option. This would also clear up any possibilities of bladder cancer.

Also about the DMSO, whil some people have gotten some relief from this treatment I have also heard others say it has made them worse, SO please do your homework on this. And remember this is your body and you have the right to choose whatever treatment you feel comfortable with! Here is a good link that you might find interesting about DMSO

http://www.ic-network.com/forum/showthread.php?t=22386&highlight=DMSO

But, please try the diet or at least cut out all the bad things! Your bladder really needs a chance to seattle down. Stay positive things can get better with IC. And remember we are here if you need us!

[princesscm99]

Thanks everyone for your replies.

I have been following the diet and so far it has offered some relief, although my OB prescribed Cipro so she could be assured of sterile urine prior to the PST test, and I'm afraid that may not be helping with the pain. I have definitely been feeling better than I felt on my caffiene OD day, but the pain is still a 4-5 on the scale so I'm not comfortable.

I think I feel the most comfortable getting a cysto/hydro done with a biopsy to rule out cancer - although these tests dont sound very pleasant and I have had awful experiences with catheters previously. The peace of mind knowing what is wrong with me will help - assuming there is a definitive diagnosis.

Hanabell - In the research that I have done on this site and several others, many have said that the DMSO made their symptoms much worse. There are also studies that have shown that DMSO, when applied at 50% can cause irreversible bladder damage. However, it doesn't appear that a lot of doctors still instill DMSO at the full 50%, so I would ask your doctor what concentrations he/she has been giving you.

[ICNDonna]

DMSO needs to be diluted so the DMSO is 25% or less of the solution instilled. The trade name is Rimso50, which is 50% DMSO so it needs to be further diluted. When I had DMSO instillations, the Rimso50 was diluted by 50%, then further diluted by using lidocaine. I had DMSO treatments for several years before it stopped helping so we stopped using it.

Donna

[reesiegirl]

Hi to everyone! I am also just diagnosed with IC I have been fighting this every since I was about 16 but my severe pain and frequency of going all the time Ive been fighting for about the last 8 or more years.:help: Im still tring to cope with alot of my simptoms and not to mention what I can and can not eat. Im not much of a cook so this is very hard for me I really like eating a lot of vegetables so that isnt hard but I cant seem to find a very good salad dressing the one I tried was from cottage cheese and it isnt very good at all:ignore:Does any one have a different recipe for salad dressing. Ive also tried one with lemon juice but it caused me a major flareup! I was down for 7 days from this not sure if it was because it was from the store and not the health food store. :confused: I sure could use some help from alot of this stuff it really takes a toll on me Im trying to be a mom and wife and deal with this but seems so hard right now. I am very mad at God on how he could let me end up with somethig like this. My doctors for years just kept putting me on antibiotics and then finnaly my doc sends me to a urologist after I end up in the emergency room and they find nothing wrong with me. My gyno wouldnt listen to me so I finally switched docs. I now am on elmiron but dont really see a difference in any thing except my hair falling out:rant: When I do have my flairups I take vikaden for pain and suppositorys just so I dont get sick from pain meds I really would like some help here please!:bow:
THANKS
RENEE

[SharonA]

Renee...I have reposted this in it's own Thread so you will get more responses. You have done nothing wrong. I just want you to have your own Thread. :)

[KHITI]

I was completely terrified while going through my diagnosis. Going through all the different doctors and trying to find someone who could actually help me was so hard on me.

It was always so hard for me to figure out what to believe. Every time they were thinking we were close to a diagnosis I had to try my hardest not to get my hopes up.

I was very lucky to finally find a doctor who knows what seems everything there is to know about IC. He diagnosed me with a cysto with bladder distention. It's important that the docs over distend and then go back in and look after they let the water out used to distend if they see nothing initially. I had a cysto with bladder distention and wasn't diagnosed because the doc who did it didn't know how to do it properly. Yet some people show with just the initial distention.

I get the DMSO or Rimso treatment. It helps me for the most part. I still have pain but I can function and sleep much better than before. I became alarmed at first about what I read about the DMSO but after research it seems that you just have to make sure they do the right doses of the meds in the "cocktail".

I don't know what it's like in your area but I had a lot of problems finding a doctor who knew about and "believed in" IC. Trust your instincts about your doctors and find one you trust and that believes in you and genuinely wants to help with your medical problem.

Best of luck!

[reesiegirl]

Thanks so much for the responses so soon. I guess I need to explain a little more. I had the DMSO and the bladder distention in Oct of this year that is how I found out that I had IC. It did help with the pain but I still have alot of flareups here and there. All I can say is what a re leaf to find out that I wasn't crazy at all or that it was all in my head. My gyno just kept giving me alot of antibiotics (he actually prescribed me a years worth of them to keep on hand because I was having so many what he called bladder infections! But by the time I would get in to see him the flareup would be gone.) I have a uro now that is the one that diagnosed me thank goodness. I now have a new gyno but she doesn't even know about it she only has me and 2 other ladies who have this and she asked me if I could get her some info on it.(how scary is that) The docs that do know about this in my area are 0 right now but in my state 5 including my uro. I sure am glad that my uro nurse recommended this site to me. I will be reading and getting as much info as I can to help me out. Oh yeah I just learned that my dad and sister also has it. My sister's problem affects her bowels and my dad is his bladder. he just found out and he is diabetic as well as has nerupathy in his feet. I hope this isn't something in the family but I don't know what to think any more. Does any one have problems with heart burn as well? I do and when I get it if I don't catch it right away then I know my bladder is going to be in trouble. My dad and sister also have this problem. My uro says it does!

Thanks Again
Renee

[tjackson]

Christina,

When I was first diagnosed, I was terrified too. To learn that there is no cure and that you are going to have to alter your life a bit is a jolt for sure. I found this site quickly, and got tons of good advice. One of the best pieces of advice for DMSO treatments was to request a pediatric catheter for the bladder instillations. It is smaller and pinches less. Honestly, I barely felt it. It takes only a few seconds longer to instill the solution than it would take with the regular catheter. I have gotten relief from those treatments myself, especially with lidocaine in there. In the midst of a bad flare, they've saved me. The only side effect I had was smelling like a mix of burnt popcorn and garlic....but that usually only lasted a day.

It's your call, but so many of us here have had favorable results from the DMSO that I'd suggest you try it.

Your GYN knew enough to know that you likely have IC, which is a good sign. But I've always heard that the only way to be certain is with a cystoscopy. If you decide to go thru with that, you may want to go ahead with a laproscopy to look for endo, since you will already be under anesthesia. You may have both conditions, as I do. 60% of women with endo also have IC, and they have been called the "evil twins" because they occur so frequently together. No one knows why. Endo won't show up on an ultrasound, and the lap is the only way to achieve a conclusive diagnosis for it.

Whatever you decide, I hope that you continue to feel better.

Tish

[princesscm99]

Thanks everyone for all of your kind words and advice.
After intensive hassling of my PCP I wrangled a referral to a urologist that my local ic-network recommended. I went to him yesterday and he did the same rundown and had the same verdict. He scheduled a cysto w/ hydro under general anes. and said he would inject whatever open ulcers they find (there is blood in my urine so he thinks there will be) with steroids to heal them.
He also told me about many different options for treatment and said we would discuss them after he took at look at my bladder.
Strangely enough, my pain had been lessening over the past few days despite my returning in frustration to a life of diet dr. pepper and coffee. I had no reactions whatsoever to those, but last night after having two mixed drinks (after the doctor) I was up all night in agonizing pain. Whether alcohol is just my trigger, or whether him pressing on certain areas triggered the pain, I have no idea.
I'm really not looking forward to the procedure, but after hearing many horror stories about people who go years without finding what's wrong - I am happy to have a doctor that is interested in finding a cause for my pain.
I am still incredibly anxious and worried, but I'm starting to feel better about my chances at a 'normal' life.
I appreciate everyone's responses!!!!!

~Christina