Interstitial cystitis symptoms and conditions

I've been on Aviane for a month and just got my period.
So far here are the good things: I haven't gained weight. My boobs haven't swollen up like crazy (they usually do right before my period), and my period isnt killing me! Yay! I used to have HORRIBLE week long periods. It was so bad I would throw up and stay in bed squirming in pain for hours and miss work and class because of it on my second day of my period. But after this first month of being on Aviane my period will be max five days long which makes me really happy and I'm only sleepy but there ARE NO CRAMPS. Also I'm always lubricated during sex and it doesn't hurt anymore. It used to.
It also helped my bladder. I have interstitial cystitis and now my bladder isn't as sensitive anymore.

Negatives: I AM VERY MOODY. I cried a lot this month and was really paranoid and jealous about whatever my boyfriend was doing. I am never like this.
I have a lack of appetite. I have lost weight (not that I'm complaining).
I'm always tired.
My clitoris isn't as sensitive and I have a hard time orgasming. Before I used to have multiple orgasms but want less sex. Now I am always aroused but can't orgasm! It's weird.

But it has been the best birth control I've been on. And I've tried EVERYTHING. So we'll see...

Hi, I had Mirena put in 4 years ago and just had it removed a month ago. The insertion was painful for abut a minute and after that all seemed fine. I did not have a period for 4 years. However after the first year I started having to urinate frequently....sometimes up to 20 times a day. This would happen weeks at a time and then go away. I went to all my doctors and was finally diagnosed with interstitial cystitis by a urologist. This is a chronic condition that affects the inner wall of the bladder. Even though most doctors do not agree with me, I think that my IUD led to this disease. Has anyone else had this experience??

I conducted a search for "long term effects of Topamax" and discovered this site, and am so glad to have done so. I have been on Topamax for around 2 years now, at the 200mg level, for chronic, sustained migraines. I have figured out, through tracking, that I will get a migraine lasting 3-4 days during ovulation and again on my period. The Topamax has helped considerably with the headaches, although I do still get at least one per month. It is generally not of the same duration, though, and is fairly easily controlled with pain meds.

I've been a bit worried, though, about continuing the drug for life, as it seems I need to do to control these headaches--thus the search. I, too, have experienced the "mental fog," and general decreased cognitive abilities. I am an extremely intelligent person, a writer, a former English teacher. Why am I unable to pluck words from my brain when I need them?

I've also experienced the tingling and numbness in various extremities, sensitivity to cold, blurred vision, fatigue, and loss of taste sensation. I've also become a royal bitch to my husband and children--although I had no idea that this could be related to this medication. I feel relieved to know this now...to know that I can change and be the person I once was. I don't like myself very much right now, but it's like trying to stop a runaway train. I can no sooner prevent or alter my knee-jerk reaction to things than I can stop that train.

I've been off of the Topamax for approximately two weeks now, and have already gained 5 pounds, although I work out 2-3 hours daily and play competitive volleyball 2-3 times per week for several additional hours. I had initially lost around 18 pounds and kept it off, even when my appetite returned. I'm uncertain, though, why I'm gaining the weight back so rapidly. I'm eating fewer than 1500 calories/day and exercising like crazy. It doesn't make sense.

I don't care about the weight, though. My chief concern is the return of my cognitive function. Has anyone experienced a return to their prior cognitive state after getting off of this medication?

I had my Mirena inserted in 9/07. I was fine until 6/08. In 6/08, I started to experience strange urinary symptoms of urgency and frequency. I addition, I had pain on urination. No UTI present. I had a cysto to r/o interstitial cystitis. The physician said that it did not look like IC because I did not scream when fluid was infused into my bladder. For the last 5-6 months, I have been dealing with my strange symptoms. The GU speculated that my problems might be due to my dropped bladder, but he seemed very unsure.

A few week ago, everything changed. I started having the most severe urethal pain. I was in tears all day long with 3 kids to care for. I have wbc and rbc in my urine. ALL cultures were neg. The Dr. even cultured me for STDs. Last Thursday, I had my Mirena pulled out after reading this message board. I'm hopeful that it hasn't caused irreparable damage to my body. I still have the same symptoms 3 days post Mirena. Please let me know if anyone has had relief post Mirena.

Thank you!
K.

I'm 25 and diagnosed with IC when I was 23. I'm taking elmiron 100mg/3 times daily. I have to down ibuprofen quite often for side effects from IC. It doesn't seem to go away. I'm taking amitriptyline(using for muscle relaxer) 25mg/twice daily for spasms. That seems to help quite a bit but just for spasms. My doc told me I was having issues because the acid(from food or drinks) in the bladder was bringing the IC back. So, I started taking Prelief which is suppose to remove the acid from whatever eating or drinking. But, unfortunately it seems to work with everyone else but me. So, I'm completely lost and my doctors don't seem to think I have enough issues to worry about. I've tried going to other doctors and they either don't deal w/ IC at all or they still aren't accepting new patients. Or my doctor wants me to keep coming in twice a month to give more money when absolutely nothing has changed. What to do?

I had the Mirena put in May'08. I've noticed increased acne, cramping in my legs, and spotting. I am also dealing with symptoms of bladder infections, however, there is no infection. My OBGYN says there is no correlation between the Mirena and my bladder problems, however, the urologist said that the Mirena could cause problems to other organs around the uterus (including the bladder). He stated it could be traumatic to our bodies, causing muscles in our pelvic area to tighten, nerve damage, etc. My OB diagnosed me with Interstitial Cystitis, a disease of the bladder lining that is without a cure, but my urologist didn't buy off on this and so now I'm having other tests done to make sure it's not bladder cancer, etc. Again, my urologist believes it's related to the Mirena. All I know is that I didn't have bladder problems until I had the Mirena inserted, which was the most painful experience aside from giving birth to my children! After reading the postings on this website, I'm definitely removing this device from my body ASAP! Good luck to all of you women who have had similar experiences. I pray that our bodies will return to some sense of normalcy.

EVERYONE PLEASE READ!!!! GARDASIL HAS DESTROYED MY LIFE! I am 24 years old and a year and a half ago I was graduating college and planning to be a professional dancer and go to law school...I was perfectly healthy and energetic! In February of 2007 I received my first Gardasil shot. After a few days I started to feel as though I had a Urinary Tract Infection and was also feeling more tired than usual. The doctor gave me an antibiotic and sent me on my way.

In May of 2007 I received my second Gardasil shot and yet again, a few days later I started to feel like I was getting another Urinary Tract Infection. I went to the doctor numerous times between the second and third shot...all for bladder and urinary tract pain. For months I was on different antibiotics and they were not making the pain go away. After visiting a number of urologists, I found out that the urine cultures had all been coming back negative - showing no sign of an infection, so the antibiotics were pointless. All tests that I had run, both blood and urine came back normal. It is not standard procedure for a doctor to call you if your test results come back normal, but there was clearly something wrong, so I searched for a urologist who would believe me that I wasn't making up the pain I was in.

In August 2007, I had a cystoscopy done (they took a scope and went into the bladder to look in the bladder wall) and they concluded that I have an incurable bladder disease called Interstitial Cystitis. This is a condition where there becomes a defect in the bladder wall causing it not to have the protective mucus layer inside of it. The pictures of inside my bladder show red, raw skin, obviously showing the severity of my case of it.

There is no evidence as to what causes Interstitial Cystitis, and there is no proven successful way of treating it. The initial signs are exactly the same as a Urinary Tract Infection (painful bladder spasms, painful urination, body aches and back pain). The main difference is the fact that it is not an infection. There are thousands of people with Interstitial Cystitis who are misdiagnosed as having chronic Urinary Tract Infections.

I received my third Gardasil shot in October of 2007 and that is when EVERYTHING fell apart. The bladder pain became constant and there has not been one minute in a day since that shot I have not been in unbearable pain. This is when everything else in my body began to crash down as well. The other health problems and side effects from the Gardasil that I am having are constant sore throat, vicious migraines, vision changes, back pain, body aches, joint pain, sinus problems, vomiting, constipation, dizziness...I could keep going on forever!

I have tried all of the conventional treatment for Interstitial Cystitis and have gotten NO relief from the pain and other side effects. The doctors didn't know what to do, so they put me on OxyContin and a diet consisting of no acidic foods. That has now posed its own set of problems seeing as now my body is addicted to the narcotic, and I have gone from 5'6'' 125lbs to 100lbs over the course of a year due to the diet. I am extremely malnourished and have to take B12 vitamin shots once a week due to the severe anemia. I am 24 years old, and feel like I am 100. I can not live a normal life, I am going to lose my job from numerous absences, I lost my fiancé and am not able to have an intimate relationship anymore, I am extremely depressed, I have to have my family clean my apartment because I am too sick to do it, I can not do social activities because I am too tired and in pain. This vaccine has DESTROYED my life! I am desperately seeking out someone else who is having bladder problems due to the Gardasil so that I can contact an attorney. This needs to be OFF the market a soon as possible so that it does not run any other lives! Gardasil has caused some deaths, but in my mind, I'd rather die than live with the pain I am having. I did notice there are some posts regarding girls getting urinary tract infections... PLEASE PLEASE PLEASE have your urine cultured because there is a good chance it may be Interstitial Cystitis!

I am desperately looking for someone who is having some of these symptoms so that I can go to a lawyer and get something going before things like this happen: Numerous states are pushing to make it mandatory that girls receive the vaccine before they enter the 6th grade. We can not let this happen! We all need to stick together and somehow fight this and get out lives back!

Let me know if you are IN - and also what you thought about my post!

You can email me at ******

Bless All of You!

*~Amber~*

I suffered with pre-menopausal symptoms for 2 years before having the Mirena inserted in May 2007. My symptoms included bad menstrual cramping, heaving bleeding, hot flashes, night sweats, moodiness and lack of libido. But since having the Mirena all those symptoms have gone away. My OBGYN is using it for Hormone Replacement because I am too young (34 yrs old) to have menopause. I felt a lot better after about 3 months, I still have some side effects like hand numbness (mostly when I wake up in the morning or at night). Every couple of months I have some mild break through bleeding and I have PMS symptoms before it happens. I would have gone crazy without Mirena. I do have 1 symptom that I haven't heard anyone mention. Increased bladder infections, I don't know if this is caused by the Mirena or maybe its something else. If anyone has had this symptom can you post it?

I had my Mirena inserted about 4 months ago and I have felt like I'm falling apart ever since. I have experienced the following symptoms: numbness/tingling in arms and legs, EXTREME fatigue, depression, anxiety, acne on back, my hair is thinner, bloating, sore stomach, lower back pain, etc. Most recently, I have had a lot of heartburn and my voice is kind of hoarse. Also, when I went to the doctor, they did a urine test and found that I have a trace of blood in my urine. Along with this I feel like I need to pee all the time, but I seem to have no bladder infection. I am fed up with this device and feeling like total crap all of the time. I have no energy and can't seem to get enough sleep. The only thing good about this thing is that I don't have a period. Of course, my doctor swears all of these symptoms can't possibly be due to the Mirena, but I don't see how it could all be coincidental. Please let me know if anyone else is experiencing these weird symptoms like the bladder issue or the heartburn/hoarseness.

This is very near and dear to me-- my cousin's husband just died and they believe it was from contaminated heparin and on top of that, I am also a secretary at a medical malpractice firm and I have been talking to clients who have gotten very sick after using heparin. Sounds like all of you have experienced some side effects, but its hard to tell whether or not they were related to the other drugs or procedures that were going on. My first suggestion is to DOCUMENT EVERYTHING. This stuff is bad news. I'm not a lawyer, but I work for lawyers that do this and I am in contact daily with the doctors and nurses that work for the firm. I would be more than happy to help if you have any legal questions. Just email me and I will do what I can.

Does anyone suffer from interstitial cystitis? I've been on Loestrin 24Fe for exactly 12 days and have felt perpetual PMS symptoms, horrible mood swings, cramps, depression and bloating/weight gain. I swear my IC has flared up, but my doctor swears none of the symptoms I have could be a cause of it.

I used NuvaRing in March of 2004 for 2.3 days and I've been paying for it ever since. My doctor's say it's just a coincidence, but I believe it was all triggered by the NuvaRing.

By the second day I had it in, I had the symptoms of a UTI and it was hurting to even walk. I pulled it out, called my OBGYN, and told them I had a UTI. They put me on the patch instead and prescribed me some antibiotics for my UTI.

After finishing the prescription, my UTI symptoms had not decreased, so I went in and gave a urine sample. They put me on a different antibiotic and after finishing that, my UTI symptoms still had not decreased.

They referred me to go see a Urologist at this point. I went in and they said my urine was fine, however I still did not feel ANY improvement. A week or so later I went back to the Urologist, and then a UTI did show up, so they treated me. Once again, I did not feel any improvement, but I went back and my urine test came out negative.

I had a done to look for possible Interstitial Cystitis, but the results were normal. Basically the Dr. told me I am fine and gave me Pyridium to use as needed to numb the bladder.

Ever since then, I've been to doctor after doctor, trying to find answers. Luckily the pain now is a lot less intense but still happens on average about 2-3 times a week, randomly.

None of the doctor's I've seen know what I have. The last dr. I saw said it's probably Chronic Urethral Pain Syndrome, but he is not sure. He'd want to do several tests, which don't sound fun. I've done so many already and to this day now I've had 3 cystoscopys, DSMO treatments that didn't help, PST tests, and so on.

My suggestion: DON"T EVER EVEN TRY THE NUVARING! Also, I was on the pill (many different brands over ten years), and don't recommend that. After getting off birth control, it took just about 3 years to get my cycles back to normal. The change in hormones also made me break out like a teenager, and I'm 34. Talk about no fun.

Hi!
I have ulcerative Colitis. I had a bad flare up since Thanksgiving 07.I have been on Prednisone since the beginning of Dec.07. The first 3 days it was giving to me by IV every 6 hrs.I was hospitalized due to tremendous blood lost. After this my doctor put me on 60 MG a day. 6 pills of Asacol and I also was on ennama with Cortisone which totally almost killed me. The side effects were sooooooooooooo bad,let say I had them all.Right now I'm dealing with the side effects of the evil Pill " Prednisone" Moon face and this awful bloating in my upper abdomen, tiredness, no energies, heavy legs. It makes it really hard for me to get out & around.I hope my doctor will get me off this Prednisone. Not only messes it up your normal living no it also makes you look like a ugly bulldog! I hate it!

I'm a 54 year old female. I was given Doxycycline to help treat what may be Interstitial Cystitis - bladder inflamation of unknown origin. Within 20 minutes of taking, I felt like it crossed the blood-brain barrier. I would get a weird dizzy/nausea sensation. I only took it for 10 days and I was so glad to be done as I hated how I felt while on it. What I'm worried about now and this is why I wound up on this site, is that it feels like it is still in my system a week after finishing it. After every meal, my stomach hurts. I've been having headaches --which I don't typically have. I'm having trouble concentrating and focusing on work that I have to do and feeling suddenly sleepy for no good reason. I struggled for years with depression, but have felt relatively good for the last 10 years--I never took any depression meds. Since taking this drug, I have sensations of sadness and hopelessness like I haven't felt in years. I'm worried about the time it's taking for this drug to leave my system and whether it's done some kind of permanent damage.

I started taking Levaquin for UTI on June 25th. I've had recurring UTIs since 1998 and since then have been on macrobid, bactrim, and cipro. I still had some macrobid and bactrim left, so I took a dose before I went to the ER on June 25th. I waited four hours before they saw me, and when I told the doctor about the antibiotics I've been on, he concluded that they probably weren't working for me anymore. So he prescribed a 7-day round of Levaquin, once a day. It's now the 29th, and just yesterday I woke up with my feet aching and today I woke up with aching hands. I've also experienced the frequent urination, but assumed it was due to the UTI until I saw this site. I have three more pills left, and am having a hard time deciding whether I should finish them or not. I'm frustrated and desperate to end my recurring UTIs, as I've had issues with them for MANY years, but at the same time, I don't want to have more health problems added by taking Levaquin. It's like being a cancer patient, suffering the consequences of chemo/radiation. Sure, it'll kill some cancer cells, but it'll also damage your other organs. I lost my father that way. I don't want to go through the same thing with this UTI issue and the antibiotics I've been taking for years. Sometimes I just want to stop them altogether, and look for natural cures instead. I feel like it's done a lot of damage to me already. And every doctor I see (and I've seen about 12 by now) tells me the same thing, and just gives me a bottle of pills to "shut me up." I wish they would actually do tests that look internally (ultrasounds, cystoscopy) to determine what the actual problem is instead of stuffing me full of antibiotics. No one should be getting recurring UTIs this often.

I take many medications for different ailments. I started to have severe edema of feet, ankles, legs, thighs, and also face. I was precribed, depakote, lipitor, i cannot remember the name of the next one, but it was in addition to pepcid, and then methadone, all within 3 months of each other. The vicodin was discontinued at the same time the methadone was prescribed for chronic pain. In addition to this massive water retention, I also am having a difficult time voiding. I have Interstitial Cystitis and need to void every 10 minutes, so it is imperative that I can void easily. So two possible side affects, generalized edema and difficulty voiding. I take the methadone for severe chronic pain. And it or something elso has become a pain.

I had been taking Neurontin for a little while. A Dr. gave it to me for a headache after being on it for about a week and half...when I started feeling some burning in the bladder area....which turned into what seemed like a bad urinary tract infection...but no bacteria showed up...What all this ended up being....I contracted Interstitial Cystitis....and have had to go through awful agony and most depressing periods...because there is no cure for IC. It's an awful disease of the lining of the bladder...I am very angry over all this...

I have taken Levaquin for bladder infections 6 times. I have Interstitial Cystitis and sadly one of the side effects is frequent UTI's. I have tolerated this drug better than any other antibiotic I have ever taken, and I have taken many.

Walgreens lists the vast majority of "possible" side effects and the Ortho-McNeil web site (the company who manufactures the drug) has a very detailed PDF file which lists all of the side effects complaints I have seen here and more. Some of the other side effects include suicidal thoughts and death!

ANY drug can cause side effects that may be severly adverse. It is impossible to know who will have such a reaction. In order to avoid all posssible reactions to drugs the healthcare industry would have to stop using medications of any kind.

I had a bizarre reaction to oxybutynin (which generally causes no side effects) that went far beyond drowsiness, it more resembled Narcolepsy. I could not safely care for my child or drive my car. I still took the pills for 2 months hoping the side effects would go away, which they didn't. I know that my reaction wasn't the "norm, and would not tell someone not to take it simply because it didn't work for me.

Please if you have been prescribed Levaquin, take it. As with any drug, over the counter or prescribed call your doctor immediately if you have any reaction that is uncommon or you feel requires medical attention. All medications can have risks, just use your head :)