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  • bt612v
    replied
    JJbean, have you ever tried taking anything to help with yeast? My last really bad flare (and I mean BAD) I tried everything I could think of to help and I didn't get any improvement until a naturopath prescribed me a health supplement to help with an overgrowth of yeast (I don't remember exactly what it's called) as well as the anti-yeast medicine Diflucan (the prescription was for two weeks).

    The reason I suggest this is because she said that the overgrowth of yeast in my bladder was most likely due to having taken too many strong antibiotics (I'd had strep several times the past few years) which killed the good bacteria which allowed yeast to grow, and that it could be contributing to my bladder/urethra problems.

    I'm basically just paraphrasing here so I may be wrong on the logistics but I thought I'd throw this information out there if you wanted to talk to your doctor about it as it really helped me get out of my huge flair! Who knows, hopefully it could be helpful to you as well as it seems you've had a lot of antibiotics!

    *Also, I'm 22 and have the same burning after urination symptoms as the others on this page*

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  • JJbean
    replied
    Self Diagnosed IC Patient

    It seems like I have all of the same symptoms as everyone here besides the pain during sex. I typically have some strong bladder pain after sex and have to lie down for an hour afterwards but have found that a warm bath with epsom salts definitely helps!

    Also, I have tried every anti inflammatory and have found that only Aspirin works to get rid of my pain after peeing.

    Kate5All - mine sounds similar to yours, in that, when my bladder is full, I usually feel okay. But 10 minutes after emptying, I get some pretty strong pains in my bladder.

    What is so weird is that all of this started after I was put on Microgestin (cheaper Loestrin Fe) about a year ago. I got one UTI and from that point on, everything changed. I tried going off of the BC but only did that for about 3 months because of the large amounts of acne I got without it and SUPER strong periods. This never happened to me while I was on Yaz but am too scared to switch BC at this point. I might try going on one that's been around forever such as my sister's Ortho Tri Cyclen.

    I think this is also happening because my body got so used to the STRONG antibiotics for UTI's every month for a year before I got another culture and my Dr. realized I wasn't getting UTI's. They tested me for all STD's, did an ultrasound of my bladder, kidneys and cervix and everything was fine. This is when I diagnosed myself with IC.

    The medicine you're given for UTI's is the same medicine people are given if they contract Anthrax. In my humble opinion, this is DEFINITELY going to mess up your body. I started developing acid reflux (throws off the bacteria in your stomach as well) and realized I was done with my know-it-all Dr's and decided to stop with the antibiotics. The only thing I take now is Aspirin when the pain is awful and drink lots of water to fill up my bladder/help get rid of the pain.

    Not sure if any of this helps but I thought I'd add to the mix of people dealing with these problems. BTW - I'm 25!

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  • dmking1964
    replied
    Hello-what u have is pelvic floor pain, look up pelvic pain therapist, what she did for me is she touches the muscle, it will hurt but it starts to go away in about 2 min. my muscles were hard as a rock, they r supposed to be spongy think of it like this, when u pee your muscles relax- when done they dtart spasming back up because they r so used to being in pain, I have chronic fibromalgia and the muscles won;t stay right, but give it a do the stinging and burning is so horrible I know I've had mine for about 10 yrs, had all the procedures,meds, so if u want a straight answer advice I'd be glad to help anyone, there is an ic diet I've avoided it, but I started today they r my favorite foods to! Good Luck ps gyno and dr;s don't know everything I've actually helped a few!do research on it knowledge is power till later, sincerely, Michele dmking1964

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  • nekura
    replied
    My pain only happens after urinations (usually), but its spasms rather than burning. During the first outbreak of IC after an untreated UTI it burnt constantly and even moreso after urination. They're saying now that symptoms can be age related.. I'm young, so I take it you are too.

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  • kate5all
    replied
    Thought I'd check back in. It's been a while. I never did get the nerve blocks because I just didn't feel like I had enough information. And I'm very skeptical of treatments now, considering this problem all started once my doc treated me for a UTI. I just don't feel like I can trust medicine.

    At this point, I'm just ignoring the issue. I'm just too tired of dealing with unhelpful docs and conflicting medical advice. I really wish this was a more researched area of medicine.

    I'm both sad and (oddly) relieved to see that I'm not the only one on this site who can't have sex. Sounds very similar--no frequency, just burning after urination sometimes (which is completely manageable), and painful intercourse. Although, I have one bright and shining piece of news. I was able to have sex about a month ago! It was awesome! And it didn't quite feel the way it used to, way back when, but it didn't hurt hardly at all. We couldn't go long, because I was afraid of irritating myself too much, but it was SUCH A RELIEF to know it's possible. Of course, the next time we tried, the pain was back, and it has been since. I've been trying to figure out what was different about that day, but so far haven't found anything. Perhaps it had to do with where I was in my cycle (toward the end of it)?

    I've been thinking that it would be really interesting to put together a survey or something to see how much we all have in common, physically. I'm not even sure what questions to ask, but I just wonder if we all have some underlying issue or trait or behavior...

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  • CamilleD
    replied
    Ugh tired of getting no where

    I have been dealing with the problem of urethral pain and burning for 7 years. I can't even believe it's been that long and taken up so much of my life! Doctor after docter has been no help. I do not have frequency or urgency or any baldder pain luckily just urethra pain. Some days food or coffee will irritate it. Sex is a definite irritant and it's usually a low level burning but hurts more after I pee. Of course all tests for stds and other wise have always come back negative. Only strep b shows and sometimes a yeast infection. I have been to see a few different gynocologists and a urologist who have both done cystoscopies and found nothing to be wrong with my bladder. I lived with the burning for about 4 years before I went to a new gyno a few months ago whos name I actually got from icn and he decided that I had endometriosis and that I should have a laparoscopy and another cystoscopy. His findings were that I had ic because my bladder looked "pretty bad" and have endo. He also stated that the uro had found the same with regards to my bladder. My reaction was anger and confusion. I've always been told that there was nothing wrong with my bladder that's why I have never been given any meds that would help my bladder. He told me to come back in 2 weeks and we would go over my findings and what he can do to help. He also said that the pain is in my bladder which, it is not! Hello I'vd been dealing with this for 7 years I think I know where the pain is! Well at my follow up appointment I saw the nurse practitioner not the doctor and she just checked how I was healing. They set up another appointment to see the actual doctor for 4 weeks! I was so mad, I just feel like he doesn't care that I'm in pain and now more confused than I was before because I was under the impression nothing was wrong with my bladder. Well I'm going to see a uro-gyno on thursday for a second opinion and hoping he will be able to offer some kind of help. The only relief I have found is from hot baths and probiotics coupled with calcium citrate. I have found these remedies myself from reading like crazy online. The probiotics really help but seem less effective as time goes on for some reason. But because they help I'm thinking this has got to be some kind of infection (maybe in para urethral glands?) or low level yeast infection that's causing this.

    Whew, sorry that was so long but I really needed to get that out. Any help or advice would be greatly appreciated. It's good to know at least I'm not alone. I hope we can all find relief soon!

    Camille

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  • PFDorIC
    replied
    Yeah, me neither on the bladder pain, it's very minimal compared to my urethral burning--and no frequency or urgency ever in my life, which is why I question what the larger issue really is here. UGH!

    Leave a comment:


  • aquilinag
    replied
    I don't have bladder pain for the most part. And I'm not on birth control!

    Oh goodness, sometimes it just seems hopeless, doesn't it?!

    Leave a comment:


  • PFDorIC
    replied
    Oh man, sorry for your troubles! I hear you on the cleanse: I have been trying to do one myself, funnily enough, but it's hard.

    The only thing that has helped me a bit is Estrace. I am also on continuous birth control and Atarax. The Atarax helps with the bladder pain but not at all with the urethral. I, in fact, suspect my urethral pain has nothing to do with my bladder--if that's possible. When I am in a bladder flare (very rare), the urethral pain isn't worse--when I am doing well bladder-wise, urethra isn't better.

    I think my pain is either hormonally modulated (came on when I started low-estrogen birth control), due to tight muscles--working on that with PT and recently had botox, too soon to test if it worked at all--or due to up-regulation of my nerves just from everything else. Have yet to try any topical or oral nerve meds--that'll be a last resort, at least the oral ones.

    I don't know about you, but I am looking for a reason or at least a solution to this pain--and not short-term bandaids to the problem (like icing after sex; yeah, it helps a little, but it's not really a long-term solution). I feel like I'm getting somewhere with the botox and Estrace, but not 100%. Here's to pushing for answers.

    Sorry about your stinky uro and your pain.

    Leave a comment:


  • aquilinag
    replied
    I posted on this thread a few months ago...

    I've been DILIGENT in following the IC diet and my urethra pain is still there. It was better for a while - I was a normal girl for about a month - and now it's back. And worse. It burns every time I pee and sex is painful.

    I do the diet, marshmallow and quercitin.

    The pain isn't so bad, and I don't have frequency. But I can't have sex. And that's awful.

    Now, I'm so desperate that I'm doing a cleanse. The IC diet plus no gluten, diary or sugar. My naturopath hopes it'll bring my body back in to balance.

    I tried elmiron and it made me sick (GI issues). I want to try again.

    what other meds do some of you take?

    My uro is a wretched jerk. I'm seeing someone new next week. Hopeful.

    I see someone here does atarax.

    Leave a comment:


  • ChrissyW
    replied
    Yeah,right now the intercourse isn't possible! I was also just diagnosed with an Inguinal Hernia. I'm tryin to get ahold of my specialist to see if this is adding to my pain after urination. Also i'm getting vaginal burning now too! Not sure if the pain is the IC or a mix with the hernia?? Do u have pain after urinating also?

    Leave a comment:


  • Mothergoose
    replied
    I have had botox in my forehead many times and the minium it lasts is 3 mons.

    I was offered it for in my bladder but I was told it would make my retention worse for a least the first month if not till it completely wore off. I didn't try it but mostly because the uro offering it to me had never actaully tried it before, she had only read about it.

    I didn't want to be her guinie pig.

    MG

    Leave a comment:


  • dmking1964
    replied
    does your ins. take care of that? My dr said it would be about5-600.00it would last about 8-10wks maybe. I used to get 3 trigger point injections and my ins said it would be 350.00a shot, they would allow 3 a yr.by the way I'm allergic to the deadner.can you say ow?

    Leave a comment:


  • dmking1964
    replied
    oh yeah and insurance doesn't cover suppositories around 45.00but try them just to see

    Leave a comment:


  • dmking1964
    replied
    Originally posted by ChrissyW View Post
    Hi, i've had IC for 13 yrs. but in the last couple months it is really bad! After i pee it hurts for a long time. I've tried Azo over the counter, Pyridium & now just got prescribed Urelle.. i'm nervous about this one though because i don't want anything to make me feel worse. I want this to end so bad! Can't have intercourse with my husband at all. Any suggestions on what helps this pain? Also Dr. wants me to try Valium tablets inserted vaginally?
    I have tried vaginal valium they didn't work for me, maybe the first one, but if they do work for you, u can only get like 10.I take valium 5mg 1-2 times a day.It helped out for a couple of weeks but not now.I've tried all the narcotics there are and its gotten to the point where nothing works.I'm even trying supplements for the 'inflammation' I'm so sick of that word. I've had this for about 20yrs now myself.I've been divorced since 2003, so for sex I would suggest putting some music on that relaxes you taking a lavender bathe, shave your legs,and put some nice smelling chammomile/lavender lotion on then your fav. perfume,share some champayne with your husband,no i'm not a drinker, I just remember in my mid twenties,and get something called gastroglide, its a water based sollution, my pelvic pain specialist suggested something called 'slippery stuff' I found it at amazon .com squirt it up u and around you some chammr vagina area.and get on top.and pee as much out as u can before u do all of that.I don't understand why we are this way one day we will find out why. just give it to God,and I pray u have a loving husband, and you may want to put some on him. GOOD LUCK!! let me know if it helps,lol

    Leave a comment:

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