Interstitial Cystitis

[patdance]

I'm new to this forum--no diagnosis yet but suspect IC after almost 2 months of frequency, urgency, leaking, and irritation which in last couple days has become burning. I'm hoping someone can suggest a topical remedy that will soothe the external burning and irritation. Has anyone tried aloe? How about Cystex? I read about Cystex on the product website but can't find any objective info and my doctor did not recommend it (but didn't say why). I tried Azo Standard but it didn't help much with the irritation or burning and seemed to make the frequency and urgency worse.

I'm also wondering if anyone has had a similar experience to me regarding onset and course of these symptoms. I don't have a history of UTI (except for 1 or 2 a few years ago), but I'm 57 and it's been 8 months since my last period, so this may be a factor. But the acute symptoms began after I tried oxybutynin (generic of Ditropan) for 1 week, suggested by gynecologist to decrease frequency of urination--since at least my 30s I have always needed to "go" a lot (every 2-3 hours) but before taking this med never had urgency or leaking. The med did not decrease frequency but did cause urinary retention (difficulty getting it all out), so doctor said to discontinue. UTI symptoms began 3 days after I discontinued--I don't think it's a coincidence. I've been treated w/ several antibiotics based on urinalyses showing leukocytes (indicating infection) and cultures showing high level of Strep group B, but symptoms have only improved for a few hours here and there. After last antibiotic (amoxacillin) I felt fine for a day or so and urinalysis showed no infection, so I risked having sex. I felt irritation after but assumed it was because of dryness and having abstained for a while, but the next morning the frequency and urgency were back, and by that night the irritation had turned into burning. Today the burning is really bad and it is now while urinating, not just external (throughout the last couple of months the irritation was mainly external and I rarely if ever had burning while urinating).

In the first few weeks of these symptoms there didn't seem to be a clear correlation with either sex or diet, but I did eliminate most foods and beverages that are considered problematic for IC (just in case). In the last few days I ate a few things that are on the problematic list, so now I don't know if this flare-up is due to sex, diet, or both. Again, I don't even know for sure that I have IC Has anyone experienced a similar history?

I'm feeling so depressed and fearful that I will never feel well or normal again, and that my husband and I will not be able to have a normal sex life. I have an appointment with a urologist next week but am not hopeful he will help because it is an HMO and they are reluctant to do tests or even spend time taking a history. (It took 2 months to get this initial appointment, and they already told me they will not do any tests at this appointment.) I apologize for the length of this post but am desperate for help and support.

[misschessplayer]

hi patdance....here are a few strategies i use regarding burning from IC, especially associated with sex:

+absolutely do not drink alcohol or caffeinated beverages, they truly will make your symptoms worse!
+after sex, take a prophylactic antibiotic and a pyridium and drink two big glasses of water
+an icepack and over-the-counter cortisone cream can also help with genital burning

misschessplayer

[AmyKat]

http://drlowellparsons.org/ Please read his website. He is the leading urologist in research and treatment of IC. His website has a questionnaire etc you can take to your doctor's appt.

I saw several urologist etc, even went to the Mayo Clinic and Dr. Parsons is the only doctor who was able to help me relieve my symptoms with oral medications and bladder installations.

I still cannot have intercourse with my husband without suffering, badly, from it. I understand your pain on so many levels. Luckily I have an understanding partner who has been to every doctor appt with me, which is important so they can completely understand what you are suffering from and going through.

They relate the pain of IC to complete renal failure or cancer pain. I cannot work, or do normal things do to this "disease". But I am able to manage things so I'm not totally miserable with the oral meds and bladder installations. I do have to take opiates for the pain, which require a pain management doctor. I've encountered a few urologists who do not believe in pain medications for IC, but they can all go to hell as far as I'm concerned because I've actually been able to function now that I am on pain management/Elmiron/bladder installations. Can't have sex without issues, but its just a matter of knowing you will suffer from it and if its worth it. My pain is so bad at this point and knowing intercourse will worsen it, well...it ain't worth the trouble. Of course I feel for my husband, but my own misery is too great to worry so much about his "misery"...

Good luck and if you need to talk I'm here! I've had this for several years now and have been through all sorts of hell with it.

[patdance]

Thanks for your suggestions and support, misschessplayer and AmyKat. I saw the urologist last week and to my surprise he took plenty of time (for an HMO doctor) and really seemed to care. He concluded that my lab reports were misinterpreted and that I never had an infection. He agreed with my theory that the initial symptoms were brought on by use of the oxybutynin, and he thinks they were aggravated by inappropriate treatment with antibiotics and bad advice (from the gynecologist and nurses) to drink as much water as possible. The urologist says drinking that much further irritated the bladder. All of this probably led to urethritis, maybe aggravated by atrophic vaginitis (related to menopause) and by sex while everything was inflamed. He did not find any physical problem that would account for the symptoms. So his advice was to drink only when thirsty, avoid diet triggers, do timed voiding (every 2 hours), don't take antibiotics, use OTC pain relievers if needed, and give my system a chance to "calm down." He thinks I have overactive bladder and will always have to deal with that, but the acute symptoms should get better.

The good news is I have seen steady improvement in the last few days. At first I couldn't wait 2 hours (or even an hour), but in the last couple of days I can sometimes wait up to 3 hours. The burning and irritation are mostly gone, especially since I started used aloe vera gel on the external area the last couple of days (not sure if this is coincidence--was starting to get better even before that). We were even able to have sex without a flare-up the next day! I still have some bladder pressure and abdominal discomfort at times, but the urgency and leaking are significantly decreased so I no longer feel like a prisoner at home.

At this point I don't know whether I have IC, but I'm just hoping that whatever it is will continue to improve or at least get no worse. Given that this whole episode was probably brought on by misdiagnosis and medications, I am now completely turned off to the idea of taking any more meds--there are just too many side effects. But I completely understand those who need to use opiates, etc. When my symptoms were at their worst last week, I was ready to beg for any kind of tranquilizer or opiate.

Just a final comment on two remedies that have been suggested for these symptoms (one here, one elsewhere): (1) Pyridium has the same active ingredient as Azo Standard. It may work for lots of people, but it did not work for me and seemed to make things worse. (2) D-mannose is a powder supplement that has been touted on another patient forum as a miracle worker. I took one dose (one teaspoon dissolved in water) and almost immediately got worse. Maybe coincidence, but I won't try it again.

[AmyKat]

I'm so happy to hear you are doing better and have found a doctor you like. Just be vigilant about it. Sometimes when you start to feel better you fall into old habits. I would definitely keep a journal on what makes your symptoms worse, and hold onto any info you have collected from various sources. I too have found that taking OTC Azo helps when things are really bad. Be careful with it though, it can wreak havic on your digestive track if you take it for long periods of time. It can also cause irritation of the external vaginal tissue. I also use Preparation H wipes, they are for hemmorroids or vaginal irritation and have witch hazel and aloe in them. They are very soothing and do not cause irritation. I cannot use regular baby wipes. And you can flush them! They are expensive, but CVS Pharmacy has a generic brand that's just as good.

Good luck! And again, I am so glad you are feeling better!