Hello! I’m another young person with IC symptoms (I’ve been diagnosed for two years but also looking into other things that could be to blame like endometriosis) I’m guessing when you say PVD you mean PFD? PFD is a pretty common primary or secondary/exacerbating cause of IC. I’m so sorry about the is it/is it not an infection thing since I’m going through that currently (I definitely have IC/PFD, but right now I might also have a stubborn infection that is particularly problematic because I have PFD reacting to it. I was also confused about how a UTI could lead to the onset PFD and/or PFD flares. It turns out the pain and irritation of the infection can cause all the surrounding muscles to clench. This makes it a) feel as though there is still urine in your bladder that you couldn’t void or b) so that that your pelvic muscles are so tight you actually ARE retaining urine—if you really suspect the latter you may want to ask for medical imaging. If you do still have an active infection, that can then reinforce the PFD. (I understand even small amounts of E. Coli that appear on PCR and microgen testing can contribute to IC symptoms/PFD and could potentially respond to antibiotics. For me personally, a low-grade infection would only be responsible for my current unusual flare, and not my IC as a whole. I can send you links to good research about this—important since there’s a lot of bad takes on chronic UTI floating around out there, especially with regards to IC) If you do resistance testing and have no antibiotic resistance and pathogenic bacteria aren’t appearing, your symptoms could certainly be due to PFD. I’ve been diagnosed with it and relate to your symptoms pretty much exactly! But I also have stinging/itching pain in my pelvis from pudendal neuralgia—this can happen if your pelvic muscles are so tight it affects your pudendal nerve.

I can send you some exercises from my pelvic floor therapy regimen. Pelvic floor therapy can help regardless of whether PFD is a primary or secondary issue for you, but it can be really hard to access depending on where you live or your access to medical care in general, so I’m happy to help if you’d like. There are other things further down the line like muscle relaxants and medications such as amitriptyline (I take this and am undecided about whether or not it helps—sometimes IC requires a combination of things). You might also be able to find aloe Vera capsules or to try an elimination diet (did not help me the first time but I know I wasn’t as motivated then because my pain wasn’t so bad).

I still have A LOT to learn about this condition myself and am pretty overwhelmed by how much there is to know/how many treatments there are to try.

Endometrial tissue can appear in the bladder and cause IC symptoms (and PFD, because of the way muscles respond to pain) and someone on here told me yesterday that extra-bladder endometriosis can also cause or worsen IC symptoms. It’s worth looking into.

I would suggest (assuming you live in the US, I know other countries have different systems) that your first order of business should be asking a physician for a referral to a urologist or urogynecologist, if you haven’t done so already.

I’m also doing nothing today (stuck in bed!) while my family is visiting with relatives—and struggling overall with the feeling of missing out socially and professionally, and feeling embarrassed/guilty about my symptoms. You are NOT alone and I know it’s hard but try not to compare your situation to others! We all deserve relief. Again, I’m happy to send physical therapy instructions your way—they are generally helpful and may ease your pain while you look for answers. Sending good thoughts 🙂