Hello everyone! I'm new to the sub, I've been looking at posts for a few months now but my girlfriend insisted I start posting and speak with others who have IC :)

So I went to the movie theater with my little sibling yesterday because they really wanted to watch Wicked ... the movie was 2h40m which meant getting up to pee a lot. Thankfully I've gotten used to holding it in and just suffering throughout the day. I've been avoiding my trigger foods like the PLAGUE lately so I figured I'd only have to go once or twice during the movie, thankfully.

Little did I know though...when picking my drink for the movies, I settled on an Icee thinking that it would be safe...I did not know they had carbonation. My bad. Anyway, carbonation is one of my BIGGEST triggers along with acidic coffees and tomatoes (which is so sad because tomatoes are one of my favorite foods).

Started to feel that classic IC pressure and not feeling like I could fully void and knew I was flaring up. I'm still suffering from this decision and the pain is really strong. I have a 6 page paper to get done today so I'm not looking forward to the pain during that. Will be drinking herbal tea and taking a nap after my paper is done.

Will be posting more here :)

This is an odd question. I've noticed a slight eye twitch that will not go away no matter what I do. Is there a connection? I've been fear-searching symptoms for Parkinson's and MS. I don't want to go further down the rabbit hole.

Is there a connection? Is this a thing to something more serious?

A few times now I've thought I had a uti but it passed within days, last month I stressed my wee looked a different colour so I went to urgent care and she said I had elevated white blood cells, and nothing else in my urine so it was likely the start of a uti and prescribed 3 days nitrofurantoin and to send off a urine sample for culture. I sent the sample before starting the antibiotics and annoyingly got the results after I finished them and it was negative for infection, but slightly elevated leukocytes. Nothing more was said.

Cut to this month I had a panic last night when I'd dehydrated myself into orangeish urine and it was a bit Twingey in my lower belly. Panicked I was dying (yay health anxiety) but then after drinking water it's returned to pale yellow all day again today but I need to go a lot same as last month, and small twingey pains down low. Exactly the same as last month so I checked my period app and both dates line up with my ovulation days. Could this be IC?

...who never let me use the bathroom during class and would shame me and say if I needed to go so much I must have medical problems but still wouldn't let me.

I'd just like to say a huge fuck you as I was diagnosed with IC through cystoscopy at 31 after having symptoms since I was 4 years old. I now have a severe case and my new urologist is having a time and half getting my 6 month long flare under control, which finally prompted a proper referral and diagnosis.

No doctor, teacher , parents, anyone ever took me seriously before this. I have been primarily diagnosed with "anxiety" and "being a woman" before this.

So fuck you Mrs. young I hope you have to pee every 15 minutes now in your old age

About 6 weeks ago after a a weekend away with my BF and a lot of intimacy I ended up with a raging bladder infection. Tested positive for Enterococcus over 100000. macrobid for 5 days and then cipro for 3 seemed to clear it up. Then this low level pelvic pain continued waxing and waning during the day and night. I’ve had a hysterectomy, 2 c sections, appendectomy and then a tummy tuck. The pain seemed stuck in my scars of all places. Couple weeks later pain started waking me up at night. Whole lower pelvis and an even a little radiating leg pain down the front. Hit the Urgent care, tested positive for leukocytes and nitrates but had also taken one AZO. Put me on augmentin for 5 days. Culture came back no growth?!?

Went to PC end of that week and got tested for STIs, kidney and liver function. She seemed to think I had a slight yeast infection and sent me off with Flagyl, a referral to urologist and pelvic CT.

Did reading. Added Prelief which seemed to help a bit. Also added a D mannose product but haven’t been consistent. 800 mg of Advil helps and I take a daily antihistamine and Prilosec after a battle with costochondritis last year and just constant pain around my ribs and even upper stomach. This has 95% resolved.

Had CT Friday and didn’t really have a ton of symptoms….results still not back. Nothing like a Friday test to get your brain worried all weekend. 😳

After a particularly difficult dance lesson working on hip rotation and pelvic frame my Symptoms are flaring up and had a miserable night of anxiety and pain. Urination does not hurt but it might relieve the pressure? Heating pad and aloprazmalol help me get some sleep.

Symptoms seem worse with sitting and sleeping (I side sleep with legs crunched up). I hardly notice them when standing or walking or even dancing (ballroom hobby).

Anyways I just needed to vent as this past six weeks has sucked.

Does this sound like IC to anyone? Any ladies with lots of scars in that area like me experience the triggering of scar pain? Also this ureaplasma I’ve seen mentioned is that a different test than a routine bladder culture? I feel like my bladder area is pissed off, antibiotics have helped despite negative cultures? So confusing.

Grateful for commentary.

Hi! I’m not diagnosed with IC just yet, I still need to do one more ultrasound to rule out something else, but I have started meds and the doctor is pretty sure it’s IC. My biggest problem is not pain, in fact I don’t really get any pain at all, it’s the constant and strong urge to urinate. It gets especially bad when sitting ”normally” (feet down and not on the chair) and for prolonged periods of time. Because of this I’ve had to drop quite a few courses, and my next school period starts tommorrow with courses. I really wanna go to school and graduate, but it feels unbearable to be forced to sit in class for 1,5 hours without getting up to pee, and I’m TERRIFIED I will pee myself. So I just adjust how I sit constantly, to the point it’s absolutely embarrassing. It must seem like I’m grinding myself on the chair at this point. Does anyone have any tips on how to help with the urge to pee? Any sitting positions? Currently I pee every chance I get, even though I know it’s bad to pee too often. At home I try to go 2h betweeen peeing (and more if possible), but at school there is no way I’m risking peeing myself in front of my classmates.

Currently the only thing I’ve found to help with the urge to pee is nicotine. But I don’t wanna get addicted to smoking or nicotine pouches just so I can live a semi normal life.

I’m relatively new here so bear with me the lengthy post - 32/F with fibromyalgia and IBS that was diagnosed a year ago and have been on Lyrica and Vivomixx probiotics.

I have been having UTI symptoms (frequent urination) almost every month since covid and it usually either goes away by itself or after a course of antibiotics. I noticed that this usually happens after intercourse, stress or eating chocolates at night. Most of the time though, my urinalysis comes back negative.

About 4 months ago after having the same symptoms for about a week, I started to have the most intense bladder and urethra pain. This time round, my urinalysis shows high wbc, ketones & leukocytes but not significant mixed bacterial growth. I took cipro but it didn’t go away. When my period came, the pain got so bad that I had to be hospitalised and was given amitriptyline and the strongest IV antibiotics but my blood test and ct scan didn’t show anything abnormal so I was sent home.

My symptoms started to gradually get better in the following weeks but it came back again - this time with low grade fever and chills. Again the urinalysis showed same results and culture showed no significant growth. They gave me cipro again but this time it gave me severe muscle weakness and difficulty breathing so I had to stop it. My urologist said it’s IC and it’s normal for woman to have it and that I should just learn to live with it.

Have tried to monitor my diet and even tried a low oxalate diet. I also started increasing my calcium and vitamin D intake naturally as my bladder is extremely sensitive to supplements including from Desert Harvest. But the pain and frequency could not go back down to what it was after I was hospitalised.

I have checked for pelvic floor dysfunction, yeast infection, endo and thankfully but frustratingly all tested negative. Even my rheumatologist told me that my fibromyalgia inflammation has gone down significantly since a year ago.

While my bladder pain has improved possibly from the diet, my urethra pain is unbearable. I cannot walk, sit or sleep in my usual sleeping position properly. & now I’m experiencing a new symptom which is labia swelling??

Am at wits end with what’s next. Right now I am only on amitriptyline which helps me sleep at night and the urgency and pain are usually manageable in the day but starts to build up from evening onwards.

Could this be an embedded uti or even a clitoris injury? But wouldn’t this have been picked up by my gynaecologist? Note - I have been using a vibrator for clitoris stimulation and my partner and I have only been with each other since we were 17. Also my IBS-D has been under control and improved greatly although the amitriptyline does cause a bit of constipation but nothing too major.

Just looking for some suggestions I can bring up at my next specialist appointment.

Has anyone had a good experience with drug store aloe Vera pills? I don’t want to buy desert harvest after someone said they got a bad batch and couldn’t return them.

I had some maple brown sugar oatmeal two days ago, peeing and urgency all that day and the next day…

Ingredients: oats, brown sugar, maple sugar, salt

I’ve eaten oats in other things with no issue

I’ve eaten brown sugar in other things with zero issue

I’ve eaten maple sugar in other things with zero issue

I’ve eaten salt in other things with zero issue

But I guess my body can’t do math, I guess 0+0+0+0=pain.

I love my body………

So to start with my big trigger flares are onion, bell pepper and coffee. I have others that I have/haven't figured out but they are minor compared to my big 3.

That said I have taught myself to be a at home chef so I can keep the foods that trigger out of my dite. Always scouting the interwebs for onion free recipes is a chore and have found out that Gemini will do it for me.

I kid you not it has changed my whole take on cooking and it is so easy now I feel like I was in the stoneage for all these years.

If you want to try it download google Gemini off play store/apple store and hit the live mode button. You can ask it for recipes for whatever your wanting. But the holy crap moment really came when I figured out you can just tell it what ingredients you have in the house and it will create a recipe for you. I just use live mode, tell it what I want or what I have in the house, we figure out something, hit the back button to see our chat log then copy paste the recipe it made to notes to print out. Can even tell it you have IC and will remember what you don't like to eat.

if sex and food/drink is is not my trigger… then what is?

i tried the IC diet and had no improvement so i sad f*** it and went back to enjoying food and coffee (still doing decaf just to be safe). nothing changed after i went back. i tried abstaining from sex for a few weeks, nothing happened. sex actually seems to make me feel better which i don’t hear a lot about.

i cannot pin point a single trigger. i did all these things while waiting to see a urologist because i knew they would say to try these things first and he basically said “great! keep doing what your doing!” even tho i had told them that it didn’t make any improvement. i also didn’t receive any diagnosis, so i decided to make an appt with a urogyn, but that not for a couple months away.

whatever i have is not horrendous, more of just a painful annoyance. but i would like this painful annoyance to go away.

my symptoms include urgency and an aching feeling. (tmi but feels like something is heavy behind my clitoris if that makes sense). i have no burning while urinating, i can hold my bladder for up to like 4 hours but it’s usually around 2 because that’s when i start to get that heavy feelings.

does anyone have similar symptoms that got some relief. it would be really appreciated!!

Hi everyone! So for the last 5-6 years, usually in the morning, whenever I pee afterwards I get this burning tingling sensation in my urethra, and it’s almost like I need to pee again despite emptying my bladder. I’ve also noticed the last 2 years I’ve had a few leaks and more urgency to go. Sometimes when I have a really full bladder I have lower abdominal pain. Going to see my doctor and he’s requested a urine sample, I’ve had UTI’s before but this doesn’t feel like a UTI. I’m really lost because I’m 26 and I just feel like my GP won’t do anything about this

I’ve been having so many problems since last year in September I had a uti and I got treated with antibiotics however 2 months later I had another uti.. I’ve lost count of how many times I had a uti this past year and was put on antibiotics. I tested positive for ureaplasma in June and I was glad because I knew something else had to be going on other than just a uti. I took the antibiotics and I tested myself a month later and it was negative however I still had lingering symptoms. I tested positive for a uti again in the end of august and was given ciprofloxacin for 2 weeks and I was on vacation and the whole time I was taking it I felt like my symptoms got worse! I couldn’t even enjoy my vacation I was in so much pain and I felt like I had to pee so many times it was terrible. It got to the point where I would have those symptoms again and they would go away for a couple days then come back but I was tired of being put on antibiotics because they never even work and it would just give me gastrointestinal issues eventually these symptoms would come and go they could last for a couple days or up to a week but they would always come back. I ended up going to another doctor and that’s when I got these results.. I have 5 bacterias in my urine but other doctors never told me anything!! I’m currently taking moxifloxacin once a day for 14 days and I literally only have 4 days left and I’m still having symptoms.. I feel terrible because I was really hoping this last antibiotic would work.. I’ve been misdiagnosed and now I feel like I either have an embedded uti or interstitial cystitis. I’m not feeling any better I actually feel worse taking the antibiotics. My new doctor tried to make me an appointment with a urologist and they literally declined the referral because they said I need to have 2 uti’s in a row I can’t remember exactly what else they said as to why they declined. I told my doctor I’ve had reccurent uti’s for so long.. I feel hopeless because I can’t even see a urologist my medication ain’t working and I don’t know what’s going on. I hate feeling this way because I avoid traveling or going out with friends because of this. I also forgot to mention that I had a bladder and kidney ultrasound and everything came back normal..

Hi guys! For everyone whose issues are pelvic floor related, once you fixed that issue could you go back to an almost regular life? Could you have sex freely? No pain? Could you drink whatever you liked without dreading your next pee? Could you sleep in the comfiest position without waking up in a flare because you messed with your pelvic floor?

I know it’s a journey but I really need some hope that there is a light at the end of the tunnel here. I’ll take any of the above, honestly I think I miss soda more than sex LMAO. Any response or advice is appreciated :)

It's impossible......

And the recipes you DO find always uses lemon🙁

EDIT: Thanks everyone!

Disclaimer: I do not have an infection.

Hi all, I’m on a void schedule to try and hold my urine a bit longer every week to help strengthen my bladder. I’m confused about something though. Doesn’t holding in urine when we need to go increase risk of getting something? Is there a “time limit” of how long one can hold in urine before acquiring something? It’s been difficult for me to google this or have received two opposing answers from my uro and OB/gyn.

My Urologist: “Hold it for as long as you can, every week a little more.”

My OB/gyn: “Do not hold it in at all, you’ll get a UTI.”

So confused what to do.

Post about how you've been feeling. Rants and nitpicking are welcome!

Tried any new food lately?

hi was just wondering what to expect on the first appt, been dealing with urethal burning and peeing like very hour for as long as I can remember finally decided maybe just see what they say. so what should I expect?

Hello. I (32F) have a surgically confirmed case of deeply infiltrating endometriosis (rectovaginal with an endometrial mass in a hard to operate area). I also have an overactive bladder which has gotten worse over the years. I’ve always attributed the pain to the endometriosis, but I’ve been suspecting that there may be bladder pain as well. I wasn’t sure if I had pelvic pain or bladder pain until this morning. I woke up and my bladder was full. I’m about to get up and go to the bathroom when I have pain so intense that I yelled out in pain a couple of times. I hurried to the bathroom and once my bladder was emptied, the pain greatly lessened. Now I’m wondering if my OAB is really IC.

Anyone taken an actual UTI test while on AZO? Does it interfere with the test? Thinking about going to the doctor for a test, but I’ve been taking I t

I had my first flare of this terrible what I call auto immune in Nov of 2021. I was in the ER 5 times in 1 month just for pain relief (got every test they could do and nothing was found.) I was sent home after being told that it was probably endometriosis. My husband was helpless as I was in bed for a month straight with 2 small kids that I couldn’t take care of. The pain was so bad I told him I didn’t want to live anymore and the hopelessness was too much to bare.

I scheduled an appt with my doc and decided to put myself on a 10 day plain diet of only salmon, rice and water. After TONS of research I decided to try a medicine called Effexor which Is an SSRI. This worked and stopped my flare until I got off of the medicine. So now I know there is a correlation between an SSRI and the bladder/ urethra pain. I didn’t like some of the side effects of the Effexor so I stopped and then got a bad flare again on Nov of 2024! Ran straight to the doc and got on lorazapram. I went home and took .5 mg of lorazapram (ativan) every 8 hours as prescribed and instantly the pain was gone. I am amazed. I just want others to know About it. This got me through the flare and then when I felt better I tapered off until it comes back again. So far been 2 weeks since the issue started and I’m off the Ativan. I truly believe the correlation between the central nervous system and the bladder/urethra. My pain could mostly be described as urethral pain (like the burning of a uti without a uti) but worse! I really hope this helps someone because I’ve been there and I have nothing but empathy for those of us dealing with this.

Stop reading about the crap that says there’s no cure…. All my research just made me more depressed. There is light at the end of the tunnel and you can treat this terrible disease!

The bladder is a self healing organ that can repair itself in 10 days. Lots of water, brown rice and salmon (or plain chicken) for 10 days , no exceptions. Start now for the pain to go away. Get yourself an appt with your doc asap and ask for Ativan for a month to see how it works for you.

I am a person who is constantly stressed out… I can get stressed for absolutely no reason at all and I think my body just started attacking itself eventually. That’s my theory to what IC is. An auto immune that attacks organs when stress is too much.

Hope this helps someone! 💕

Hell Good People,

I was diagnosed with IC in 2018. The doctor game me amithripthyline and a generic drug of Elmiron took it for 2 months.

During 2015-2018, when I had the bladder issues, I was under my mums insurance, and it did allow me to be covered until I was 25 years old.

Its been 5 years never seen a urologist, never used any drug except amithripthyline incase of a flare up.( I can go to local chemists and if you explain your situation they can give you a short course of amithripthyline without docs prescription)

However, in the past 3 months, I have had intense bladder pain(amithripthyline has not been helping)

This bladder pain is more predominant on the left side of my bladder, and it does also affect my left leg. IS THIS NORMAL?

My mental health is in the drain. I literally know nobody with IC who I can share my experience with except online.

I do not have insurance, I can't really afford doctor visits. In my country, we do have a drug " Cystopen," a generic to Elmiron. However, it's like 100 dollars for 30 capsules. I really can't afford this.

I tried marshmalow root tea powder, but it is not helping( it's not even slimmy). Question: What affordable options have worked for you that mimics Elmiron efforts?

Hi.

Seeking hope during a flare.

I would firstly ask to refrain from panic inducing "This happened to me and I have been in pain for 4 years" -responses, because I have gotten sick with a depression with this condition and catastrophizing makes it worse.

I have been in severe level 10 pain from Feb-Aug this year. Finally got my life back with physiotherapy and Amitriptyline 50mg. I have a "clean bladder".

I was so ready to approach the new year healthy, my bladder felt amazing. Got back to worklife. However, now flaring since 1 week ago. These same symptoms I've had before; urethral itching, urgency, burning.

• I got cold air the night before this started so I thought it's probably that.
• But I also just had resolved constipation from Omeprazol I use for acid reflux. Constipation never flares me, but resolving it does.
• However, coincidence or not, I did get my Pfizer booster 2 days before this started. Never had any issues with them and I take it due to asthma. However, this was my first after my bladder journey started. Took flu shot the same go. My period is also one week late (not preggo).
• I habe been stressing ever since these symptoms started so I know that contributes.

I know people have gotten flares after vaccines, I'm more interested to hearing how long they lasted?

hi there! i've suffered from bladder infections sporadically my whole life, but since becoming sexually active it's gotten worse. i had a uti that i don't think i let heal properly, and suffering with constant urge and frequent urination since.

I dropped off a sample at my GP, they've said they couldn't find any bacteria and so have sent it to the labs, but the GP said it's most likely interstitial cystitis. i'm kind of confused and upset, because i'm not feeling any pain, or burning, nothing like that. it's just a constant need to pee all the time in my lower stomach, not even like a pressure, just the feeling. when i do pee, it is a substantial amount because i’m drinking more to try and flush it out, but then after i leave the toilet, i feel like i still need to pee and feel weird and uncomfortable after wiping.

i don't know what to do as a result. last night it was me and my boyfriends anniversary and we didn't have penetrative sex (the first uti happened about a month ago when i forgot to pee after sex) and it made me feel so shit (he's been lovely abt it but i just felt too nervous). a lot of the advice on forums has been pain management and i rlly don't have any pain, not even this morning after he performed oral sex last night which i was fully expecting. also, maybe tmi, but this is my first proper relationship and i love having sex! i love sharing that intimate moment! it makes me feel so sad that i can’t do that

how do i stop this feeling of needing to urinate all the time? will it go away? is it a pelvic thing like i’ve read or not? will i ever be able to have sex again? i just really need some advice because im really anxious and upset about it. thank you

Does anyone deal with lower back pain during a flare up?

As a breast cancer patient, my first worry after my diagnosis last summer was what chemotherapy could do to my bladder. Chemocystitis is well known but there are some great tips and medications that can help prevent bladder irritation. So, for any IC patients out there facing cancer and/or chemotherapy in the coming months, this is good information to have.

Chemotherapy Can Trigger Bladder Irritation & Symptoms

Some chemotherapeutic medications can trigger bladder wall irritation and IC symptoms, particularly the oral medications cyclophosphamide, busulfan and ifosfamide. Some bladder therapies for bladder cancer can also trigger more intense bladder irritation, including mitomycin-C, thiotepa, doxorubicin and BCG. Chemo induced cystitis symptoms can occur during treatment, following treatment and, in some cases, months after therapy has stopped.

Thankfully, the medication Mesnex can help cyclophosphamide and ifosfamide-induced cystitis by binding to the metabolite acrolein in the bladder to form an inactive product that is then excreted. The antitumor activity of the chemotherapy drug remains effective while the bladder is protected. Patients may find that increasing water intake flushes the bladder with some clinicians using an IV saline solution and/or a diuretic medication to maintain urine output. Continuous bladder irrigation can help flush the irritants from the bladder before significant damage is done. For IC patients currently undergoing chemotherapy, medications and supplements that coat the bladder may provide some extra protection for the bladder wall.

Ref: Side effects of Cancer Treatment Urinary and Bladder Problems – National Cancer Institute. August 9, 2018. https://www.cancer.gov/about- cancer/treatment/side-effects/urination- changes

Helpful Links

• https://www.cancer.gov/about-cancer/treatment/side-effects/urination-changes
• Chemocare on Cystitis
• Hemorrhagic cystitis in cancer patients
• A YouTube Video from a patient with chemocystitis - https://www.youtube.com/watch?v=43fIFfyEI0k

For any fellow cancer survivors who want some extra support, I'd love to talk with you and would love to hear your stories and tips. My surgical recovery has been brutal to be honest and I'm just a shadow of myself at the moment... but my lymph nodes were clear. Double mastectomy was an easy choice but I was not prepared for the surgical recovery. Yikes

Jill Osborne - ICNetwork Founder

Hi there, I’ve been struggling with IC due to a gut condition for the past 4 years. I have some pelvic floor issues going on as well. Sex hasn’t been very comfortable for the past couple of years so I got some Foria CBD Sex oil and it’s been a game changer! I love it.I still have a small flare for about a day after intercourse but the oil has helped with pain during. I highly recommend it if you need some relief in that area :)

Next week I have a cystoscopy, I’m absolutely petrified! I really don’t want it done

I have suspected IC and non hemolyzed blood in urine so they want to do a cystoscopy

I’m nervous because I know the pains going to be terrible! I’ve had a colonoscopy and endoscopy before and this is the one I’m mister nervous about

The after procedure is paranoia is bad I really just dont want to get a uri after a need antibiotics

Really just want to cancel

Obviously I’m a man, and I personally think IC is a cluster of different conditions which all present similarly, however I’d be curious to know if any women have tried BPH meds or, especially, Cialis.

5mg of Cialis has definitely helped me with daily pain in conjunction with other meds. Flomax really helped with the urinary side of things but the side effects became tolerable after ~20 years of taking it.

I don’t know if this is helpful but I’m curious, and it’s not like any doctors know wtf to do about this curse.

Wish you all the best. This is misery, but the more we communicate the more attention we’ll get.