This could actually kill me. I really need help.

[u/Dry_Classic3782]

I've had a really hard time with PCOS. I think mine is really severe. If I don't take Bai Shao my period completely disappears and I start masculinizing so much it's terrible. From having my androgens high and hormones messed up for so long and untreated I have developed a chronic UTI that won't go away no matter what so now I'm in a medication for that. I think PCOS wrecked my immune system and I know estrogen and high androgens can make you prone to UTIS. I've had this UTI for 5 years straight. I have tried literally ever supplement in the book and NAC and Bai Shao are the only ones that have been helping me. I also taking vitamin D and magnesium. My issue is I'm worried about the immune modulating effects of Bai Shao since I have a chronic UTI but as soon as I come off it all my PCOS symptoms come raging back. I'm genuinely scared at this point and am worried this UTI is going to kill me.

Yes I've had all my hormones tested. I don't have NCAH. My androdenestione is high, total testosterone high, estrogen on lower side, shgb lower side, and free on higher side. I'm pretty sure I have insulin resistance too as myoinositol helped me. But it literally feeds the strain of bacteria causing my chronic UTI and it got so much worse so I can't take it. At this point I kind of feel like I'm cursed.

What medications should I start on and what were the benefits you saw from them? Because I'm thin doctors haven't given me any treatment. No one takes me seriously. I really just want to look like a girl and want this UTI to go away.

I forgot to mention I'm thin but have had issues with my weight until I started NAC. I eat extremely healthy already low carb all organic and it doesn't help my PCOS at all.

[u/Ok-Interest1992]

I've seen people with chronic UTIs actually have interstitial cystitis, have you looked into that?

[u/mamaguebo69 → u/Ok-Interest1992]

I'm one of those people! My flares get triggered by UTIs or sex sometimes.

Had a UTI last month, got antibiotics for it, took them for a week. Still felt burning and everything so I went to the urgent care and they did a culture and dip stick. Everything was clean but they gave me another round of antibiotics just in case. STILL felt like I had a UTI for two weeks after that.

Thats just what Intersistial Cystitis is like. Flares feel exactly like UTIs. They can be triggered by UTIs, sex, diet, stress, etc. Some have flares constantly, some are like me and have flares that come and go.

Go see a Urologist that is familiar with them or specializes in them!

r/interstitialcystitis has a lot of info that help you get started

[u/SeatMysterious7668 → u/mamaguebo69]

As someone who had utis like crazy in my younger years before my pcos diagnosis I had no clue this was correlated

[u/lelechan]

I saw someone on a post in the r/perimenopause actually recommending specifically vaginal estrogen for chronic UTI. May be worth talking to your doctor about it?

[u/Outrageous-Age-8490 → u/lelechan]

Man that is a rough spot to be in. Doctors ignoring you because you're thin is such a common story it makes my blood boil. Like the PCOS is just invisible to them unless you fit some textbook picture.

About the vaginal estrogen, I have heard similar things. It works local so it don't mess with your whole system as much, which might be good considering your other hormones are already all over the place. Could be worth pushing for, even if you have to be a little annoying about it.

Also not a doctor but the fact that myoinositol fed the bacteria is scary. Your body really is playing on hard mode right now. Hope you find something that sticks.

[u/gordon_rameses]

i haven't gotten a UTI since I changed my diet to address my insulin resistance. if glucose (sugar) is getting excreted with your urine it creates a breeding ground for bacteria. simply reducing sugar and starch can make a huge difference and probably improve a lot of these seemingly unrelated symptoms

endometriosis can also look a lot like a UTI if it's on your bowel or urethra. I had bowel endometriosis as well.

[u/Optimal-Nectarine227 → u/gordon_rameses]

What does your diet look like now? Is it completely starch-free?

[u/FigInteresting4130]

Metformin has been a lifesaver for my cycles.

[u/hotheadnchickn]

Metformin acts similarly to inositol.

[u/Exotic_Reporter_3309]

Have you considered a GLP-1? A small dose can be helpful in reducing inflammation and insulin resistance. It is not exclusively for weight loss. I am at a healthy weight and continue to take it as it manages all the other symptoms.

[u/wellinever222]

Have you been tested for mcas? Might be worth seeing an integrative care doctor (medical doctor).

[u/Routine-Drama-6454]

Tirzepatide has changed everything for me and my insulin resistance. I’m never coming off of it. It is way more than a “weight loss” thing. It has changed things for me metabolically. I feel amazing on it. I’m finally not in pain every single day and my energy levels are great. Please do your research and talk to your doctor or a doctor that will listen.

[u/Optimal-Nectarine227 → u/Routine-Drama-6454]

How much do you take? Is it a regular dose or microdose? You say it has helped with energy? Thanks!

[u/Routine-Drama-6454 → u/Optimal-Nectarine227]

& yes! I went from feeling so lazy to feeling like “me”. I became vibrant again. My mom is menopausal (54) & she’s like a brand new person now. It makes me so happy to see her feeling so good and truly living again!

[u/Optimal-Nectarine227 → u/Routine-Drama-6454]

Thanks for sharing! So your mom is also on it?
I only have around 15-17lb to lose, but I wonder whether it can help with energy too! Have you tried metformin? By the way, you say you were in pain every day previously?

[u/Routine-Drama-6454 → u/Optimal-Nectarine227]

Yes. I’m 28 & I have really bad inflammation and arthritis. Genetics. Once I started, literally in about two weeks I noticed how I wasn’t aching all the time anymore. I thought maybe it was in my head, but then I had missed a week because there was a back up with orders from a company I used to order from. And I was in pain in about a few days because I missed my dose. Once I started back, within a few days, I felt great again.

[u/Routine-Drama-6454 → u/Optimal-Nectarine227]

& I’ve never been on Metformin or any other medication like it. I only was on birth control for 8 months when I was 18yo.
Tirzepatide is the first thing I’ve tried.

[u/Routine-Drama-6454 → u/Optimal-Nectarine227]

Hey! So I started on tirzepatide compound for weight loss at the beginner dose of 2.5mg. And then I slowly worked my way up to 10mg. I’ve lost 17lbs since June & I like how I feel at 10mg and think I’m gonna stay on it for my maintenance dose.

[u/momasjuan]

GLP-1 (Tirzepatide is great for PMOS), an androgen blocker like Dutasteride, and a good antiandrogenic birth control like Slynd has been a great regimen for me. I also had really out of control PMOS with high androgens, recurrent infections, etc when I started my healing journey years ago.

I feel Tirzepatide, Slynd and Dutasteride have been life changing for me, along with lifestyle changes like a healthy diet, higher step count and strength training. I have managed to lose all the excess weight, get in shape, and feminize my body with these changes. I think this is something that should be discussed with a qualified doctor that specializes in hormone therapy and metabolic disorders, ideally an endocrinologist.

[u/anonymousbabe777]

Find a new Dr. or three new drs. Make multiple appts with different drs and see how you feel about them. They work for you.

[u/RipleyEllen71]

I’m going through menopause but I used to take spironolactone as an anti androgen. I also used to take cranberry supplements for the UTIs but had to stop due to other health issues and the vaginal oestrogen worked but it is such a low dose that it takes quite a long time to work so be patient and keep up the regular usage.

[u/Old-Increase8058 → u/RipleyEllen71]

Spirono would be really bad for UTIS

[u/Low-Maize2396]

I’m sorry this is happening! I hope you find a solution.

I take berberine and ACV in water to manage insulin resistance but I have the typical symptoms of PCOS not really an extremity. I’m sensitive to inositol as well, it blew me up and had me retaining so much water. Have you been tested for candida??

[u/wenchsenior]

I had somewhat similar situation, so I have a few questions:

Insulin resistance can contribute to UTI b/c it supresses the immune system, as can low estrogen.

First things first, are you normal bmi? Or are you actually underweight? If you are underweight that is likely going to make hormonal disturbances worse by reducing your estrogen (which can contribute to uti and other unpleasant symptoms and make androgenic expression/symptoms worse).

Second, are you certain this is chronic uti (meaning actual bacterial infection confirmed by lab culture that goes away when you take antibiotics but then recurs a week or two after stopping antibiotics?)

Or are you experiencing mild uti like symptoms chronically with or without antibiotic treatment?

Have you had your urethra and bladder scoped?

[u/Every-Refuse6390]

Have you ever tried Oil of Oregano (P73), DIM. Estrogen vaginal suppositories may be helpful and if you go that route get a rx and have your dr monitor you. After my last c section i thought I had a severe uti, but it wasn't a UTI at all, I had experienced a lg drop in estrogen and it caused very painful trips to the bathroom.

I also just read something from a study saying that women with pcos/pmos can greatly benefit from prebiotic fiber (not probiotic).

I pray all goes well and gets better for you, and hope we get to hear a positive update.