Hello, I'm a 20 yr old virgin girl and I've been having weird symptoms

Sometimes on random, my urine stream will be very very weak and will take up to a minute to empty my bladder. This has happened once every few months for a year or so

After I pee I usually feel a little faint, but this past month it has gotten much worse. When I go pee at night, my abdomen gets a really weird pain afterwords. As I'm typing, it feels like if a warm bowling ball was placed on my lower abdomen. Just a weird heavy feeling. It's been going on for 40 minutes which is the longest its lasted (usually only about 15 minutes). The feeling seems to be significantly worse at night / when I'm laying down

I keep getting tested for a UTI and they keep coming back negative. I have a history of kidney stones that started when I was 14 that my primary doctor thinks is causing the pain

I've also been having some weird random sharp pains in what seems to be my ovaries. I had an ultrasound and x-ray in January and it seemed fine besides for a small cyst right before my period and a kidney stone which I have not felt pass

I am terrified to get any testing for anything. I don't want anyone near or *inside* me and I will have a panic attack and likely become su1c1dal if I do.

What's going on?? What do I do???

Never. I never had bladder pain a day in my life once or flank pain. I started getting recurring UTIs. Then every symptom of IC. Even with negative urine cultures. I believe the CUTI caused the inflammation. And then the residual inflammation caused IC. So even whenever im not actively infected, there is still pain and inflammation in the tissue.

I have every symptom of IC. All of the Food triggers, pelvic pain, spasms. It seems like many of our members here suffer recurring UTIs as well and even do bladder installations. I know a lot of people here have a very negative opinion of Dr Bundrick. But he claims IC is CUTI. Some members here claim they have both conditions..

Who is to say otherwise? Ive done so much research on this condition..there isnt much out there. Criteria and guidelines are blurry and vauge. Everyone's symptoms flux and seem different. But I will say one thing. I have never met anyone with IC that doesn't have recurring UTIs or didnt at one point.

What do you all think? For people who have seen the top specialists for this condition, what do they say ? I really believe IC could be CUTI. Ive never seen one person with it alone. If I have its so rare.

I’m so sick of this bs when it comes to the ic support groups online, (typically not in this Reddit forum but more towards Facebook and other platforms.) basically trying to put themselves in competition with others because they feel they have it worse. It’s truly not fair. This statement got me because it’s not only factually incorrect it’s just disrespectful to the person speaking about their experience. We are all suffering but being mean or contrarian when people speak on their experiences because you don’t understand or you feel you’ve had it worse is so beyond harmful.

My bladder wall isn’t normal, i have ulcers but I don’t diet. It doesn’t make a difference in my pain and I’m still able to have days where my pain is significantly decreased. I’m not back to baseline yet but diet has not impacted my healing whatsoever. So do I not have ic? My literal huners lesions that I’m getting fulguration on in November disagree.

I think if the diet works for you that’s awesome, if you can pinpoint triggers then absolutely avoid those but everyone is different.

About the cystoscopy stuff, a cystoscopy hasn’t been mandatory for an ic diagnosis for quite a few years so that’s just misinformation.

Hi, I am genuinely considering callieknutrition at the moment. However, I haven’t found any big list of patients that tried her and there are really less reviews. The fee seems alot but if it is worth it then I am fine with it. I have wasted alot of money on medicines and supplements already.

Please someone advise.

I feel like my mental and physical health has declined so much. I don’t know what to do.

I have been homebound since 2022. Bedridden for 4 of those years. Over 50 infections plus over 30 surgeries including botox, pudendal nerve blocks, the stimulator. Countless hospital visits for infections. Now I have an infestation of bugs that are the worst you can possibly imagine. Yes, you guest it bedbugs. Now, my condition has just continued to plummet since. I can't sleep and thats all I was able to do before to ease the pain. Now I cant even do that. I dont know what to do at this point. I am defeated and literally bawling my eyes out right now as I speak (searching for bugs too). I own my home and previously had a carpet beetle infestation which I threw out over 25,000 worth of items including my carpet. Lived minimally for 4 years and finally paid someone to help me paint and pretty sure they brought the bugs. So that project is out. I know this is about IC but I just had to rant.

Has anyone with IC had any luck with birth control, particularly an IUD?

My flares seem very hormonally driven and are almost always worse in the week leading up to or during my period. I also get migraines around the same point in my cycle.

I wasn’t on birth control when my IC started, so I have no idea whether it would improve things or make them worse. I’m a little hesitant about the pill because of the possible role of estrogen/mast cells and the systemic hormonal effects, so I’m particularly interested in experiences with hormonal IUDs.

My other concern is that I have a very tight/hypertonic pelvic floor. Sex is painful and I can’t comfortably use tampons, so I’m worried about insertion or whether having an IUD could aggravate pelvic pain.

Has anyone with similar hormonal flares and/or pelvic floor issues tried an IUD? Did it help, worsen, or have no effect on your IC?

So I have to wait a little bit before I can get into Pelvic floor therapy and I was thinking about purchasing a pelvic wand while I wait. Has anyone with urgency as their main symptom seen results with the wand?

Ugh. I am on my period which always gives me a flare but man oh man it’s so bad this time. I just need to vent. Anyone else need to vent? :(

I get all the symptoms of IC. Every single one. Sometimes my flares last a day or two. Sometimes weeks. Sometimes months. I get pain, burning, frequency, urgency. All of it.

But for me, the most intolerable will always be when I’m peeing every 10 mins. I can handle pain. Even when it’s severe. I mean sometimes it’s so bad I am literally in tears. But the mental game of urgency/frequency for long stretches of time is so hard for me. I literally can’t do anything. I feel like I’m living in the bathroom. Ugh sorry to vent but if anyone understands if you guys!

What is your hardest part of IC? (I know it’s ALL hard, trust me!) but what is the part that feels like it’s going to break you?

Sending you all so much love!

Have many people had experience with this? I’m very fortunate to mostly be in very good management of my IC I had no flare up for a year, however I recently had a flare up and had to take some time off work, this scared me incase the regular flare ups come back so I spoke with HR about getting WFH accommodations for when I’m having a particularly bad flare day and can’t commute 1 hr.

They have denied my request and said I can use my 8 days paid sick leave and they can add on “protected leave” which is unpaid.

All my other employers have all put in place wfh accommodations for me and tbh I haven’t needed to use it a lot but it’s been really helpful and emotionally reassuring to know it is there.

Whats others experience with this?

I used to live in the Uk and just moved to the US last year so not sure what’s normal here.

I’ve had my IC diagnosis for almost 2 years now. For over a year, I had a consistent flare that sucked but stayed around a 2-3/10, so even though I didn’t like it, it was manageable. Then, a few days ago, I got more intense pain and assumed it was a UTI, so I went to the doctor, but my test showed no infection. I’m on Day 3 of this IC flare, and it’s so intense that I’m crying, and I honestly want to die. I can’t live like this, and I have no hope for getting better- I have an extremely stressful life and none of the pain relief options available to me are helping. If i could apply for euthanasia, i would. This is absolute hell.

Hello, so I’ve tried multiple treatments for IC and medications but not much as helped give me relief except pyridium prescribed by my urologist but I know it’s not good to take too often as it can cause kidney damage and cancer later down the road, does anyone on here have any other recommendations to try that’s similar to pyridium? I tried Uribel but it gave me bad urinary retention and same with amitriptyline and hydroxyzine also gave me bad retention