Can't find any help from anyone on base...

[VickiB]

@VickiB - Does buying a water filter help? Right now we have city water in Alaska, and I'm not sure about the water content but I will look into it if you think it makes a difference.

We're all somewhat different in this but I know chlorine in drinking water bothers the heck out of my bladder. I have spring water at home and buy bottled spring water when I'm away from home. On the most part my symptoms stay pretty quiet day after day. At work they have chlorinated city water and occasionally I'll have to choose between drinking that or nothing. Going without causes me irritation too, so it's a no-win situation! I'll go ahead and drink it, but I can feel the irritation begin within an hour of that first drink and my frequency really, really increases. UGH!

I have read that some here have had good results using a water filter so that could be worth a try. If you try a search you'll probably find some threads discussing which brands people use or have tried.

Vicki

[burlydurda]

hang in there

I am so sorry you are having to go through this. Trying to get others to understand how real, and how painful IC really is, takes so much effort. Becuase your doctors are not helpful, try asking them to put you on medications that are none addictive, but are known to help. There are 2 things that I have found help, gabapentin, known for helping with overactive nerves, and an antihistamine. Any antihistamine is supposed to work in 2 ways, one decreases mast cells, and increases the effectivness of pain medication. I have had success with these, I only hope you do to. Good luck, and don't give up. Next time you see a doctor, come prepared, print out documents from every website you can find. You aren't alone...

burlydurda

[l0ne1ygirl]

Everyone thank you so much for the support and advice. It's really comforting to see that other people have gone through the same struggles--particularly with military doctors too (Zygala87). Part of the problem was trying to get my father on board that this pain is real and not in my head, so I think I'm going to sit down with him and show him this website and have him come with me to my appointment. The doctors never take me seriously until he is there with me and I guess I'm thankful at least he has some sway.

Right now I take hydroxizine and celebrex every day with quercetin to try and help. Sometimes it does sometimes it doesn't, but I haven't tried changing my diet which I suppose I'm going to have to because everyone has suggesed it.

@VickiB - Does buying a water filter help? Right now we have city water in Alaska, and I'm not sure about the water content but I will look into it if you think it makes a difference.

@Jinny Jean this is exactly what I'm talking about!!! It's always worse during my flareups definitely and sometimes cloudy, but it always tests negative for everything and the doctors told me maybe that's just the way my body is always going to be...what screwed up? I refuse to believe that there isn't some hormone or something messing my pH up that is causing this as I never had this problem before these symptoms...

Thank you all again for the words of support and encouragement, it really means a lot to me having been dealing with this alone and being treated like a hypochondriac for going on one year next month. I'm really happy to find this place, so thank you all. <3

[KarenAnne]

I am so sorry you have been through so much. The sexual assault must be a nightmare in itself. Please read as much as you can in the section for patients on this website. Download the info & ask your parents to please sit down with you & read it. There are many treatments you can try that may help: tricyclic antidepressants (in lower doses), antihistamines like hydroxyzine, meds that numb the bladder like pyridium(take for a short time), bladder instillations, Elmiron, the IC diet as described on this website, physical therapy for the pelvic floor. It is all on this site.

But to get one of these treatments, your military dr. needs to be willing to work with you. So first you need to get your parents onboard, & then have one of them go with you to the dr. & be your advocate. Everyone gave you great advice. Start the diet, read up on IC, get your parents to look at this website, drink lots of water, make another appointment with the military dr. (or go offbase), & take a parent & IC info with you. Try to stay calm & assertive at your appt. Good luck & keep us posted!

[Zygala87]

I guess i'm infamous about Military Doctors. I have posted before how I feel about most of them. Before anyone disagrees with me please remember you have not had the experiences with them that I had for 22 years. There are some GREAT ones but hard to find. Sadly we have no chose who we see. I would recommend seeing a civilian Doctor ASAP. I know it will cost you but in my opinion you need help right away and can still get your medication through the Military once you have a diagnoses.. Keep us posted. Hoping with all my heart you get relief soon. Hugs, Ziggy

[VickiB]

I'm so sorry you're going through this! I don't know it has much to do with male or female, I just think there are still plenty of doctors out there without knowledge of IC. Very unfortunate! I went for a long time in pain, bouncing from one doctor to the next before I finally found a doctor who knew of IC and treated me. I know this happened to many others as well so all I can say is that you have to keep pushing forward until someone takes you seriously. -It has to especially hurt when your own father doesn't take it seriously either! I imagine this intensifies that feeling of being alone!

I too have to hype the IC diet. Please follow the link in ICDonna's post above and have a look at it! That one change made such a dramatic difference in the amount of pain I was in and continues to be my main line of defense for keeping my symptoms muted.

You'd mentioned the darker color of your urine. Are you sure you're drinking enough? I know whenever I'm not drinking enough pure, untreated water my urine gets concentrated, darkens, and the pain ramps up. It's so easy to not get enough water!

I hope you find help soon!
Vicki

[ICNDonna]

I'm so sorry you're having such a difficult time. Are you following an IC diet? If not, I suggest you begin today. You'll find the link to the latest food list in my signature below. Some people with IC find the diet helps more than any other single thing.

Sending warm healing thoughts,
Donna

[Jinny Jean]

OH my goodness! Im so sorry you are having such a difficult time receiving care! Many many people with this condition go through the same thing unfortunatley Almost all of us have had to go from Dr. to Dr. to FINALLY be reffered to someone who can help, as many GP's have NO clue what is going on. I also had this in my case too (although not in the military) I went to at least 15 dr.s who told me to take naproxen and get on with life, or that I had a weak bladder. yeah right. My heart goes out to you! I hope you find some answers here, these people are incredible when you need them, as I have found out I can relateto one of your symptoms though the DISCHARGE. I constantly have this as well it never goes anywhere, its always thius white paste ick. Sometimes after I pee I look down in the toilet bowl and there are cloudy drops coming from my vagina (sorry graphic I know)...lol it drives me mental. It seems to get worse when I am flaring also, or if I eat something that might cause a flare. Sometimes i douche with vinegar and water and it helps. Mine doe not burn at all or cause me any problems (other than getting everywhere during sex).... its not a yeast infection or std or anything just what my body does I suppose. It also smells like potatoes, starchy like... which leads me to believe it has alot to do with yeast.

Have you tried the IC diet? There is a link to the ICN webpage or you can go to google and look up IC diet. Most of us have to follow this diet and lots of us find reliefe with it! I personally am on the anti candida diet because I believe YEAST is alot of my problem as I have been on more antbibiotics than nessecary.... (this all started to happen to me after a TON of antibiotics) which deplete the good bacteria in your body and allow yeast to grow. Yeast also seems to be a common factor in playing a role in IC for some. (and can even cause bladder problems with people who DONT have IC). Its kind of a nasty bugger. I hope you find some GOOD CARE soon! Hope I have helped some!

Jenn

[nottoc4]

1One1ygirl
Unfortunately I had the same experience with a Military Urologist.I am quite a bit older than you(69) but the man knew nothing about women's issues and I
finally had to go out in town to see a Gyn and he ran a few tests and diagnosed me with IC. He treats me for it and I am pretty symptom free for the past 2 years. I suggest you go back to Women's Health and take some information about IC with you. There is lot's of info on this site you can print off. There are treatments out there that can help and the sooner you get on a treatment plan the better.Be sure to print off the IC diet and follow it for at least 6 weeks. It should definitely help you.Good luck,Jo

[greeneyes]

I'm so sorry you're in such pain, I would arm my self with all the information I can before my next visit, write down how much you urinate daily, plus all your other symtoms and the guidelines for IC. Start the IC diet and see if it helps. I use over the counter tiger balm pain patches that help alot.

[l0ne1ygirl]

Background: I had one UTI at age 8 or 9. When I became sexually active at 17 I had them very frequently even when I urinated after intercourse and they became excruciatingly painful and bloody.

Fast forward to last June when I was sexually assaulted by a minor. I started feeling like I had a UTI so I went to the ER and told them I thought I had a UTI and about the experience. They gave me every kind of anti-STI medication they could give me there, as well as antibiotics to take home. I had also just finished a large round of antibiotics for a number of cuts.

I took the antibiotics and it didn't help. I always felt like I had to pee and when I peed there was harldy anything. After I pee it felt worse than when my bladder was full...a burning sensation after I pee. I couldn't tell you if it's my bladder or urethra because the burning sensation is too general in the area.

I kept going back to the doctor and telling them, and they kept making me get cultures, wet mounts, pap smears, and STD tests. I did not have any STDs, I did not have any yeast infections, and I did not have any abnormal cell activities nor UTIs.

Finally my doctor referred me to a urologist. Unfortunately I have military healthcare (the worst) and had no choice but to see this guy. I started crying after one appointment when he basically said he had no idea what was wrong with me and wasn't going to give me anything for the pain--and that I'd have to wait a month for my next appointment with him to get a cystoscopy. He just stood there and basically said "too bad" while I sobbed. The doctors also suggested that my pain was psychosomatic--yet I was over the assault almost as soon as it happened because I was seeing a therapist.

The cystoscopy revealed that my bladder wall anatomically is okay, but I was having muscle spasms in my bladder. I read that people with IC may have worse spasms as a result of cystoscopy which I believe is definitely true. They gave me lidocaine and it was so painful I cried during the procedure.

I feel like my bladder started hurting even more after the cystoscopy. The urologist "thinks" I might have overactive bladder syndrome so he gave me ditropan. It literally did not help in ANY way. I had the same amount of bladder spasms. The only thing it did was practically annihilate me with its side effects and drowsiness. My mouth was drier than cotton mouth and my eyes burned like they'd never been drier in their life.

It is now approaching the one year mark, and I saw the urologist again. He once again said he can only guess what's wrong with me but he doesn't think I have IC. He also doesn't seem to even KNOW what IC is and that symptoms vary from person to person.

I saw women's health finally in March and that provider is the one who suggested I look into IC as a possible diagnosis, because I also have some other vaginal symptoms. I feel very dry often and during the times of the month when I have flare ups I get a white vaginal discharge that does NOT contain any yeast or bacteria. It is itchy on rare occassions but usually burns. That doctor thinks it is related to a hormonal imbalance, and possibly IC related. I only feel relief during my period and sometimes the week after. During the 2 weeks before my period it gets insanely bad. My urine also separates during the flare-ups in that when it's in the toilet, a dark sediment precipitates out and settles to the bottom right when I pee. It does not have an evenly distributed yellow color around the toilet--instead it is dark yellow in the bottom of the toilet where the bend starts, and clear in the basin.

The women's health provider suggested I take birth control and it only aggrevated my symptoms even at the lowest dose. My PCP and urologist are both males and don't seem to care at all or take me seriously how much pain I'm in.

So far the only thing that has helped completely mask my problems is percocet. When I'm on it I can't feel my bladder pain or spasms and I can function pretty normally. Muscle relaxers and antispasmodics do not help.

I'm at a loss. My two male providers refuse to even consider that I may have IC even though all my tests have proven everything else is negative. Because I live in Alaska I cannot see any providers except the ones in the base hospital. Emotionally and mentally this problem is severely impacting my life and the lack of healthCARE (keyword care) is increasingly driving me further into depression, especially because I am in physical pain all the time and no one believes me or listens to me.

Does this sound at all like your symptoms? I can't do this alone. My own father doesn't believe me either. I just want to know what's wrong with me because as of yet the diagnosis is "I don't know."