Any thoughts? UTI Symptoms no UTI

UPDATE: I’ve been waiting to update for awhile to make sure I have some good feedback to give. Essentially I have found that my issues were all together caused by mental health/anxiety which builds up over time and I internalize this feeling which makes my muscles tighten up. Through this process I have found I have tight hips, tight glutes and abs. I have worked with a great PT who helped me learn techniques to work out these muscles over time and dry needling has been great too. But I also had to do a lot of work on my mental health. I noticed on days where I didn’t feel anxious I would have a great day and days where I did feel anxious I would have a bad day. It’s been a work in progress and I’m not 100% better but I would say I’m about 90% better and it is not all life consuming anymore. It’s important to understand your triggers, I think for me a bit of it is family and work. Or situations where I feel like I won’t have access to a bathroom and that gets in my head and gives me symptoms.

I ruled out IC as the pain for me is not in my bladder, it’s mainly my urethra area that gets irritated. I also get uncomfortable after sex and feel like my vagina has a burning sensation. So for me it is all muscle related. I can connect this because if my husband fingers me and massages that muscle area before sex, I feel much better. And, I could not make any connection to food sensitivity.

I am actually pregnant now so I’ve stopped drinking alcohol completely and I think that has helped, in the past year or so when I would have drinks I would get into a spiral of not liking myself or being sad which I think turned into more anxiety.

Now I focus on deep abdominal breathing, working out, yoga and being in a good place mentally. I often think about everything I am thankful for. I also focus on total body awareness, I noticed that when I am standing I unconsciously tighten my glutes. I also make sure my pelvis is tucked and I don’t have that big curve in my spine. I make sure to not clench my jaw. I sometimes unconsciously also hold my breath when I’m rushing or stressed. And lastly, I noticed in my everyday life even just being at home I’m rushing, rushing to finish my shower, rushing to cook dinner. I have no idea why and didn’t know I do it, but now I just slow down and know I don’t need to rush.

All of this to say, I believe my nervous system has been in a fight or flight mode for a long time. I could track this back to my childhood and being raised in a stressful environment. I’m working so hard to get out of that mode. And it sadly doesn’t happen overnight, but I’m getting there. I hate to say it takes months but it does. This all started in September of 2013 for me. I hope this helps someone!

Okay long post ahead. Sorry in advance. 29F, I started getting UTI’s when I started dating my husband and had a consistent partner, I figured out how to manage them with D Mannose and didn’t have one for probably 5 years. Them beginning of August this year I started to feel one (2 days after sex) starting taking more d mannose and it wasn’t helping. I did a video call with my insurance provider and they sent antibiotics to my local pharmacy. I took them and it went away. Although I did notice that my bladder almost felt swollen during that one? Which I don’t remember in the past but it had also been a long time. Fast forward to beginning of September and I started to feel it again (also 2 days after sex) and I couldn’t believe it. Also, we don’t use condoms and we have used the same lube for awhile. I went to an urgent care and they said my urine was negative for infection but sent me antibiotics while they sent it off to the lab. I took them and it wasn’t helping. Did another call with my primary care provider 5 days later and she sent me different antibiotics and had me go do another urine sample, which was also negative. Since then I have been to the urologist twice, they told me to not eat acidic food/drinks which I was already doing, and I had them test my urine for any bacteria including ereaplasma and mycroplasma, both negative. I also went to the gyno and had her test for any yeast/BV and that was negative. Lastly, I went to my primary care provider and did blood work and besides low calcium all is normal. This week I started going to pelvic floor PT through my own research and am hopeful. I will be doing an X-ray later this month too.

My symptoms are mostly burning and it feels to me like it’s in my urethra, and it’s usually constant not just when I pee, and some days I have more urgency than others. And some days I feel totally normal and I think it’s gone and then the next day or that night it’s back. My symptoms come and go, for example, yesterday I felt really good and then at about 6pm I started to feel the burning again, still didn’t feel good this morning and then maybe at about 4 I feel okay, not great but not constant burning and urgency. I have always been good about drinking water, close to a gallon a day and we get RO water and add our own minerals, which we have done for 7 years.

I have gone down rabbit holes here and have been taking d mannose, cranberry pills, aloe Vera, quercetin, garlic pills, apple cider vinegar pills, Uqora program (which I don’t notice any difference), I’ve also tried antihistamines, and cystomend. I really can’t tell if any of this is helping since it comes and goes so much.

Now before everyone says IC, my urologist said IC is a diagnosis given when they can’t find another reason. And to me, there HAS to be another reason, my body is having a reaction to something. It’s possible of course, but I still think there is a root cause.

Anybody else experiencing the hell that I am and have any kind of advice?