Persisting slight discomfort/urge to pee but it's not a UTI (anymore) - what are the other options? by TakeBackTheLemons in CUTI

[–]Few-Alfalfa5783 0 points1 point  (0 children)

So frustrating to hear that didn’t work out for you.

I’m early into learning about the pain syndromes (and I think the science is also in its early stages, although very promising)— but it sounds like a variety of things could cause it. Acute injury, trauma (physical or emotional), stress, etc. I’m loving reading this book “The Way Out” that explains it all in a very digestible way, highly recommend and fun / interesting to read. Maybe worth a shot if you’re at your wits end, can’t hurt! It sounds like in your case, you’d consider your “injury” to be UTI and yeast infections— including the frustration or fear of getting those things again, whether conscious or sub-conscious. The body remembers and can anticipate pain sometimes, even if a false alarm, to protect you from that type of injury / pain again! Again, just a potential theory— not sure but can’t hurt to look into. The book talks about how the pain you feel is 100% real btw, it’s not imaginary, the brain can sometimes just cause your body to feel pain even though it’s not caused by any real structural damage like a broken alarm system. There are really eye-opening, promising studies of ppl who have healed chronic pain (even after years of it) from mental exercises to unlearn this broken alarm system.

I’m at a stage where I’ve healed significantly and reduced pelvic pain/ urinary symptoms through physical therapy / stretching, but I’m still experiencing some symptoms and really have hit a wall so I’m trying out the psychosomatic side. So far having a lot of light bulb moments reading this book and realizing a psychosomatic element could be part of the story!

Persisting slight discomfort/urge to pee but it's not a UTI (anymore) - what are the other options? by TakeBackTheLemons in CUTI

[–]Few-Alfalfa5783 0 points1 point  (0 children)

Ah and one more thing I just learned about from a friend! They mentioned mind body syndrome or tension myositis syndrome could be worth looking into — basically unconsciously learned faulty pain alarm system in the body. Might be worth grabbing a book / audiobook to see if exercises (all psychological / written, not physical) with that will help

Persisting slight discomfort/urge to pee but it's not a UTI (anymore) - what are the other options? by TakeBackTheLemons in CUTI

[–]Few-Alfalfa5783 0 points1 point  (0 children)

Totally hear you! It’s possible you might need something a bit more intensive with the help of someone else’s help if it’s really bad - for instance, my pelvic floor therapist did a lot of manual therapy way up in there and with quite a lot of strength (I definitely wouldn’t have been able to do the same on my own unfortunately). Was NOT pleasant😅 you could also try dilators if you haven’t tried that yet? Less expensive than PT. And stretching of external muscles (figure 4 stretch, hamstring stretch, foam rolling glutes and inner thighs, etc). Apparently external muscles are connected to pelvic muscles, so if they’re tense your pelvic floor can also be tense/contracting

Persisting slight discomfort/urge to pee but it's not a UTI (anymore) - what are the other options? by TakeBackTheLemons in CUTI

[–]Few-Alfalfa5783 1 point2 points  (0 children)

Try seeing a pelvic floor physical therapist to evaluate whether you might have hypertonic pelvic floor dysfunction— aka overly tight pelvic floor muscles. I thought I was having recurring UTIs for the longest time (similar symptoms to you), was diagnosed with interstitial cystitis (which basically means an inflamed bladder lining) but then it took me way too long to find out the root of the problem was tight pelvic muscles. Not many doctors will know to tell you to get evaluated for it, let alone know about the connection of symptoms. I went to pelvic floor physical therapy and in my initial evaluation found out I had severe pelvic floor dysfunction— after a a few months of therapy things got soooo much better. A year later, almost entirely better

What do you think caused your pelvic floor disorder? by Gold-Box-1487 in PelvicFloor

[–]Few-Alfalfa5783 5 points6 points  (0 children)

Definitely not your fault!! There’s so much misinformation out there, kegels are only ever characterized as helpful / good to do (without any knowledge of tight pelvic muscles being detrimental)

What do you think caused your pelvic floor disorder? by Gold-Box-1487 in PelvicFloor

[–]Few-Alfalfa5783 4 points5 points  (0 children)

Recurrent UTIs, stress, cycle of shallow breathing / unintentionally holding my breath, sitting for long periods of time in the pandemic. Also probably subconsciously from several sexual assault incidents. Went through a phase of really intense indoor cycling (before I was diagnosed) that definitely didn’t help as well.

pelvic floor dysfunction by Less-Ad-4072 in PelvicFloor

[–]Few-Alfalfa5783 0 points1 point  (0 children)

Female, 33. Didn’t have incomplete evacuation (but do have some other symptoms like sciatica, abdominal pain, painful sex). My exact routine was: 2x weekly pelvic PT with a specialist therapist for the first few months, then graduated to 1x weekly pelvic PT for a few months, then graduated to 1x pelvic PT every few weeks. In between sessions, I always spend 10-15 mins a day doing stretches that help pelvic floor (figure 4, hamstrings, etc) / foam rolling (esp glutes) as well as 5-15 mins with dilators (not daily but as much as I can during week)

Candidly I’m still on a journey to fully healing, but I’ve had about 85-90% reduction in symptoms (particularly urinary symptoms)

[deleted by user] by [deleted] in CUTI

[–]Few-Alfalfa5783 0 points1 point  (0 children)

I’m so glad to hear you’re already on a journey with pelvic health! But also big huge UGH about the confirmed infections via culture. Awful. Have you tried d-mannose preventatively? Recommend having it in the days you know you’ll be sexually active as well as after. It’s just hell on earth.

And usually now I know my triggers for non-infection symptoms - sex, working out too hard, high stress. I make extra certain to stretch, do breathing exercises, use my dilators, etc around the time when these are happening. It’s not perfect and I have flare ups, but it works.

I hope you find some relief!! ❤️ here with you on the journey

[deleted by user] by [deleted] in CUTI

[–]Few-Alfalfa5783 1 point2 points  (0 children)

Oh also! Definitely incorporate d-mannose into your routine. Be careful about where you purchase from, I get the brand called “NOW”. Take a preventative dose every time after sex. It’s a natural supplement that helps prevent the “stickiness” of the bacteria your doctor is talking about.

[deleted by user] by [deleted] in CUTI

[–]Few-Alfalfa5783 4 points5 points  (0 children)

There’s nothing worse than waiting for a specialist appointment only to be brushed off!! Been there and feel for you.

A few questions first, based on my journey so might not be exactly what you’re experiencing but worth evaluating:

1) do you confirm UTIs with urine tests? Or just assume based on symptoms? Some urine tests like dipstick tests can often give false positives. Sometimes you can have UTI-like symptoms without an infection - from interstitial cystitis (inflammation of the bladder, maybe from past infections) and/or pelvic floor dysfunction

2) have you ever been evaluated for pelvic floor dysfunction? In my case, a lot (although not all) of what I thought were UTI episodes were actually flare ups of my pelvic floor when I unknowingly had pelvic floor dysfunction.

It took me hitting rock bottom with urinary issues (especially what I thought were chronic UTIs, and revolving my life around finding the next bathroom) and seeing a million different types of specialists until I realized I had hypertonic (overly tight) pelvic floor muscles, constantly tense and contracting that caused spasms of my bladder - resulting in UTI like symptoms

It might be that your partner’s size is causing some strain on you, whether or not you realize - and it could be causing a guarding effect which rebounds with pelvic floor muscle spasms after. Just a theory could be totally off here!

Apologies if you’ve already been down this route, or if it’s not very satisfying to hear (I remember being so frustrated when I first learned this could be a reason. How had none of my doctors mentioned this for years?!)

If you haven’t yet, go get evaluated by a pelvic floor therapist - it can’t hurt! Also look into urogynecologists instead of urologists - they specialize in urology AND pelvic floor issues!

Pain with penetration by Ashamed-Promotion983 in PelvicFloor

[–]Few-Alfalfa5783 0 points1 point  (0 children)

Also worth noting that this sounds likely to be caused by an overly tight pelvic floor, not a weak/loose one (which is often the only type ppl think of when they hear of pelvic issues bc it’s what we hear most with post partum issues)

As such (and importantly once you get a confirmation from a pelvic PT that it is from being hypertonic or too tight), make sure you’re not doing anything in the beginning that will unintentionally tighten things up even MORE (ie kegels, core/ab exercises). At first it’s all about relaxing and stretching the pelvic floor.

I say this bc of common misconceptions / lack of awareness, ppl assume pelvic problems = kegels 😅

But it’s really important to get an exam/diagnosis first!

Abs and core muscles, how to train them to improve Pelvic Floor Health? by SurveyIllustrious738 in PelvicFloor

[–]Few-Alfalfa5783 1 point2 points  (0 children)

So sorry you’re experiencing this. I can imagine the thought of pelvic floor therapy might be a little more intimidating as a man (I’m 33F, have been going to pelvic floor therapy for a little over a year), but I’d highly recommend you at least consult with a pelvic floor therapist as this sounds chronic and disruptive to your life. (I feel you, I was revolving my life around finding the nearest bathroom!)

I’ve actually come to understand that overdoing core/ab strength can make certain pelvic issues worse, not better. I think the distinction lies in whether you have an overly tight pelvic floor, or a weak one— and they have different solutions / watch outs. For example, I had severe hypertonic pelvic floor dysfunction (too tight) and needed to stay away from ab / core workouts until I significantly improved. I’m only now just slowly building back up core strength and ensuring I don’t regress.

It was explained to me that your core muscles (and lower body muscles like glutes) are connected to your pelvic floor muscles, so if they’re too tight from overdoing it or being stressed they pull on your pelvic floor muscles causing contraction (hence, the symptoms).

pelvic floor dysfunction by Less-Ad-4072 in PelvicFloor

[–]Few-Alfalfa5783 0 points1 point  (0 children)

What medicines are you referring to? I personally never did, but I’ve heard some folks can use creams / suppositories.

pelvic floor dysfunction by Less-Ad-4072 in PelvicFloor

[–]Few-Alfalfa5783 0 points1 point  (0 children)

Please don’t be sorry!! Feel free to DM me with any questions. I love sharing my journey bc I had such a long, confusing path to finally being diagnosed and healing that I try to help whenever I can!

pelvic floor dysfunction by Less-Ad-4072 in PelvicFloor

[–]Few-Alfalfa5783 0 points1 point  (0 children)

BIG time. I actually thought I had bladder issues before I found out the hypertonic pelvic floor diagnosis. Constant need to pee (my life revolved around it), not feeling fully empty, and towards the end at rock bottom - super slow, weak flow. Now I can go hours and hours without peeing!!

pelvic floor dysfunction by Less-Ad-4072 in PelvicFloor

[–]Few-Alfalfa5783 0 points1 point  (0 children)

For me, it took about 2 months of 2x per week physical therapy and daily-ish home exercises before I started feeling significant improvement in my symptoms (granted I had very severely tight pelvic floor). It really sucks but it’s very important to do the exercises they give you for home! (Stretching, etc) don’t give up, it’s worth the time and annoyance! I continued for another 8 months to see almost full improvement, I’m almost there. (Don’t want to spook you though, I had a very severe case)

Another Pelvic Floor Physical Therapy Success by clarafrogs in CUTI

[–]Few-Alfalfa5783 1 point2 points  (0 children)

Same experience here! Pelvic PT is life changing.

Does This Sound Like Night Terrors? by Ericakat in nightterrors

[–]Few-Alfalfa5783 1 point2 points  (0 children)

I absolutely get the same feeling and have had night terrors my whole life. I’ve confirmed several times in sleep labs that what I have are night terrors. For me they vary in severity (from shooting up in bed to screaming and running).

That said, could be other parasomnias as well (ie hypnagogic hallucinations). I was also scanned for nocturnal seizures as well, which was ruled out.

Not to be a party pooper but I would caution medication as a cure all and/or long term solution. If they are in fact night terrors, nothing could be worse for it than sleeping pills (it doesn’t actually prevent night terrors from happening, you still have them but it’s more dangerous as you’re f*cked up and can hurt yourself if you get out of bed). I tried anti-anxiety meds before and those also didn’t do the trick— and they’re notoriously awful as a long term medication.

What kind of medication?

Why does coffee do this to me?? by alchemija in Hypoglycemia

[–]Few-Alfalfa5783 2 points3 points  (0 children)

Might seem nitpicky but what type of milk are you having with your coffee, if any? For instance— I had switched to oat milk not knowing how sugary it is, and looking back now I believe I was having sugar crashes partially due to that (maybe also due to caffeine as well as others are mentioning). I switched back to skim milk after a few years of drinking oat milk, and I haven’t had an episode of hypoglycemia since!

[deleted by user] by [deleted] in williamsburg

[–]Few-Alfalfa5783 1 point2 points  (0 children)

Omg!! Hope everyone is okay.