Newly diagnosed at 27 - sudden onset, trying to conceive, scared and overwhelmed. Any advice?
Hi everyone. I was diagnosed with IC just 5 days ago and I'm still processing everything. I'm 27 and this came completely out of nowhere - my symptoms started 2 days after my husband and I began trying to conceive, which has made this even more emotionally overwhelming.
My symptoms:
• Constant urgency and pressure to pee
• Burning/irritation when urinating usually only in the morning but after just turns to urgency. Feels like I’ve been holding it in for hours when it’s really only been 2 (hard to tell which)
• My vulva and clitoral area constantly feel hot, throbbing, and almost like they're being pulled
• it’s coming and going but still always there if you know what I mean. I feel like afternoon around 3/4pm are the worst
A few things my doctor has already weighed in on:
My doctor declined to test for Ureaplasma. Her reasoning (her husband is an infectious disease doctor) is that it's normally present in the body, antibiotics will help temporarily due to their anti-inflammatory effect, but symptoms will return — so it's not worth pursuing. She agreed to test me once and then treat me once but that’s it. I seem to trust her on that one but she’s doing the test anyway for me (some piece of mind). I’m a chronic overthinker.
She also said my pelvic floor seems strong, so that's apparently not the issue?
I've ordered some supplements I've seen recommended here: lactobacillus probiotic, aloe vera, turmeric, and marshmallow root. Planning to introduce them one at a time.
I haven't made major diet changes yet but I know that's probably my next step. I haven’t noticed a difference when drinking soda though and I’ve been a big soda drinker my entire life.
My questions for you all:
- Did anyone else have a sudden onset like this? What triggered yours?
- For those who are TTC or have been — how did you navigate IC alongside that?
- Is there anything you wish you'd known in the first few weeks?
- Any experience with pelvic floor PT even when your floor was described as "strong"? I've read that hypertonicity is different from weakness.
I'm trying to stay hopeful but I won't pretend I'm not scared. Any advice, shared experiences, or even just reassurance is welcome. Thank you. 🤍