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Interstitial cystitis just diagnosed

Hello, I had a really bad uti back in November and it was after I had recently had sex with my partner and I didn't pee after. Right after a week I started to feel burning sensation, all the time down there and it felt very raw and it hurt a lot, I had discomfort most of the time. I've always had to pee, very often. Anyway, I went to the doctor four times and they either told me I had bacterial vaginosis, uti or yeast infection but no one really told me what it was, until I went to the urologist and she did some urine sample and used a machine almost like an ultra sound on my stomach. My concern is that, I am a very paranoid person, and at first I thought I had herpes because I was reading information online and I read how much herpes is confused with urinary infections. I have a small bump on the skin by my vagina close to my butt. It's always been there and I showed the doctor and she said it was a hair follicle, since it's right by the pubic area. Anyone else that has cystitis relate to the symptoms? I will get a cythoscopy fine in two weeks which will determine how bad the cystitis is. I'm just scared because I've never had any issues down there and I'm super paranoid of stds although i got tested a week after I had sex and it was negative. Also, doctors have done pelvic exams as well as visual since November and they assured me it wasn't std related. Anyone help, I need more info to comfort myself during this nightmare
7 Responses
649848 tn?1534633700
COMMUNITY LEADER
Your symptoms are classic for Interstitial Cystitis... IC is "not" an STD; it has nothing to do with an STD, though sex can cause a "flare" or make it more painful.  IC is an inflammation in the walls of the bladder; it's also called Painful Bladder Syndrome (PBS).  

I had recurring UTI's for many years, but some get it without even having a UTI.

Many people with IC have lesions inside their bladder called Hunner's lesions, which can be seen via the cystoscopy that you're having in a couple of weeks.  However, IC can be present without the lesions, as well.  

It affects all of us differently.  For some people, it's very painful all the time, for others it's not too bad.  

The treatment will depend on how the IC affects you.  Standard treatments are instillations in the bladder of medicated liquids, which you have to hold there for a certain amount of time so the medication can work.  Some women have so much pain that they have to be on medication.  

Many of us can control a lot of the symptoms with diet.  There are a lot of foods that seem to irritate the bladder and avoiding those seems to help many people.  Basically, the foods to avoid are those with a lot of acid, such as citrus and spicy foods, but we all have our own triggers.  For me, salt and sugar are the biggest triggers and a flare can last from a couple of days to a couple of weeks.

A "flare" feels just like a UTI, but there's no infection present.  

Some also find that vaginal dryness causes similar symptoms.  Vaginal estrogen can help with that, if you are post menopausal.  Some doctors recommend a 1% hydrocortisone cream for itching of the outer vaginal area.
Avatar universal
Hi, interesting g to read your' comments I am a male and have suffered from IC for around twenty four years, I've had all the tests and treatments going over the years, nothing really helped until I happened to be working for a doctor one day and the subject came JP, he asked whether I had tried Gabalentin,which is usually prescribed for epilepsy but also for nerve pain,I hadn't but asked my GP to prescribe it, it has helped me greatly and twelve years on I still take it daily,it doesn't cure IC but greatly relieves the pain, I also take Solpadkl (co-codamol )which also reduces pain and frequency, with these two I've only missed about three days work, due to IC in about nine years. If you would like a y further into I'dbe Vlad to help ask know what a hell of a problem KT is. John.
12099710 tn?1423423420
You may want to tap into the Interstitial Cystitis Association (ICA). Their website has lots of information and forms of support.

Additionally, Mayo Clinic has a guide to preparing for an IC appointment that could be helpful to check out before you next appointment. It has things like specific questions to the doctor, like:
    Will my symptoms eventually go away?
    What kind of tests might I need?
    Will changing my diet help with my symptoms?
    Could the medicines I take be aggravating my condition?
    Are there any medications that would help ease my symptoms?
    Will I need surgery?

Good luck to you!
649848 tn?1534633700
COMMUNITY LEADER
Yes, thank you, I'm aware that gabapentin helps many people with IC...I'm happy to know that you're one of them.

My own IC is currently controlled by diet.  As long as I avoid certain foods that trigger flares, I do relatively well.  

I did take gabapentin for quite some time for unrelated peripheral neuropathy and the biggest draw back for me was massive weight gain.  Since I have hypothyroidism, which also causes weight gain, I had to go off the gaba in order to be able to lose some of the weight it caused me to gain, since excess weight can also put pressure on the bladder.  Along with IC, I have a neurogenic bladder and mild pelvic organ prolapse.
649848 tn?1534633700
COMMUNITY LEADER
Thank you for the suggestion to tap into the ICA; I've already been there quite a bit and do go there quite often ... their site, however, is considered competing to MedHelp because they also have patient forums, etc, so while information from the site is allowed here, unfortunately, links to their site are not.

I found the IC diet on the ICA website and it's been a great help to me.

I'm relatively new to the diagnosis, though I've had the symptoms for years.
Avatar universal
Hi Jenny, i would like to know what is your status now?
ur sympotms almost same with mine. my urology doc suspected that i had IC. i had bladder pain/ pressure for 2 months now. went to see 3 gynea and they first tot is UTI and prescribed me antibiotics but does not work.Then they refer me to Urology. Currently i am prescribed Elmiron and ask to take for 2 weeks (just started the med for 2 days) and he told if my pain still not recover he have to perform scope on me.

i am worried to death now. Doc told me that if i really have IC, it is very troublesome. i am feeling super upset now as i am planning to conceive baby. With condition like this, i don't think i am able to have another baby. i am really upset.  
1 Comments
Hi water_bubblesH20, Jenny hasn't posted since March, so I don't know what her status is.  I'm very sorry to hear that you've been diagnosed with IC.  Perhaps you should try to find a uro/gyn to treat you... that way your treatment would cover, both, urology and gynocology/obstetrics.

Elmiron is one of the main treatments for IC, but it's usually prescribed for longer than 2 weeks.

A cystoscopy is not so bad.  I've had them before.  It will help your doctor decide on the best treatment for you.
Avatar universal
Hi Barb135, thanks for your reply.

Yes currently i am seeing urology. i just noticed that he prescribed me propiverine hydrochloride not Elmiron, is the same thing with different name?
i took it for 1 week 2 days now (2 weeks of med given), yesterday i felt better without any pain at all i tot is recover but this morning when i woke up i feel some pressure on the bladder.

sometimes i don't feel the pain unless i press on my bladder. if in this situation, do i still need to visit my urology to let him perform scope or i should leave it just like this since it do not bother me if i don't press on my bladder. i just follow IC diet? what do you think?
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