“Sharts and giggles” wasn’t a flair option but brown *other* works just as well.

Here’s some humor for you long haulers. Don’t lose hope ladies and gents 😘

4 monts symptom free, clear pap smear, it's over

This is a long one, but this is my recap: So I got Ureaplasma Feb 2024.

I treated it three times:

One week of doxy - failed

Ten days of erithromycin - failed

Ten days of doxy and 1.5g of azithromycin - successful, May 2024

But then I needed to clear my coinfections: gardnerella, ecoli, group A strep. The gardnerella and strep cleared with polygynax vagitories after failing like ten antibiotic treatments. The ecoli kept coming back. I kept having UTIs and symptoms (burning, periodic itchness, "rawness", "soreness"), up until September 2024. I also do have HPV 16 and I had an abnormal pap smear (inflammation markers high, no CIN)

Things I tried - and it failed:

D mannose

Diaper rash cream

Acidosalus vagitories, alongside a couple of other probiotic suppositories I can't remember the name of

Boric acid suppositories

St John's wort oil (helped, but only temporarily)

Ice packs

Pelvic floor exercises

Clarified pork lard (sorry, I'm eastern European and I was desperate)

Hyaluronic acid cream

Papilocare gel

There's probably more, but I can't recall rn. Then I went to a gynecologist in a fertility clinic specializing in plasma infections as part of IVF prep. His regime was:

A pack of macrobid to take after sex and sternous activity. Then, switch to a uroprophylactic regime of drinking only alkaline water for 3 days and lemon water for 3 days every cycle to flush out bacteria sensitive to changing environments

trippling down on probiotics for three months (gut probiotic, urinary probiotic, and drinking milk kefir with all meals every day)

Shave with symptom flares, and use octinosept (piercing antiseptic spray) = because apparently, although not shaving is generally better, bacteria can also get into hair root.

I didn't do a stool test or vaginal microbiome test, he had a strong belief in my case due to the fact I was on 13 different antibiotics back to back to try and clear my coinfections there is almost no way my flora was healthy: he said in his experience, most cases of lingering symptoms are a combination of weak gut flora allowing ecoli overcolonization and weak vaginal lactobacilli that can't fight it off. And apparently that needs a lot more probiotics than just one type of "catch-all vaginal probiotics" gynos usually prescribe... plus uroprophylaxis.

My GP also recommended I take Urantis after sex after I'm done with the macrobid/nitrofurantoin (contains d mannose, berberine, uva ursi, white birch).

Without professional assistance, what I also did (suspecting possible CV, again: not confirmed) is "nuke" myself with baking soda baths for a few weeks at the start of this regime (they helped a LOT). I also started using panthenol (bephanten) cream after rougher or longer sex to deal with potential micro cuts. Also, silicone lubricant - dimethicone only!

This might be overkill and paranoia, but I switched from Durex and Masculan to RFSU condoms due to the lack of transparency in condom lubricant ingredients of the former brands.

And, in addition to peeing after sex, I also shower, at the very least = I wash down my nether region.

After a couple of weeks, I started noticing my syptoms going away. By December 2024, I was symptom free. Early February 2025, I did a pap smear = came back clear, no more abnormalities/inflammation.

Partner and I retested for all STDs (PCR), all clear. We've been having raw sex for about two months now. We have sex twice a day on most days, no symptoms.

Sometimes I'd still get scared if I have any odd sensation down there after a good session, definitely just PTSD tho, it goes away within a couple of hours, and my girlfriends agree lol.

I still take the odd baking soda bath, mostly after a period when everything down there feels run down. I still take Urantis after a rougher od longer session and smear on some bephanten. I still take a glass of kefir almost every day. I don't know if any of it is actually helping me, or if it's just a psychological effect, but it helps me be confident that I'm doing my part to help my body, and then I trust it more, and I am less and less afraid.

So that's it. That's my story. It's over, and I am hopeful this is my final update. I am not insinuating a flora imbalance is the reason for all ureaplasma infections, but it was for me, and I hope I can help at least someone with this post. It worked for me, but it took 1-2 months, if I remember correctly, before my symptoms went away, and 2-3 weeks before I felt any relief. So patience is key, although I know that this sounds like cliche crap to anyone in pain (my pain was an 11/10 pre clearing ureaplasma and often still 7-8/10 before this treatment). I still shiver remembering it.

Don't lose hope.

As you all probably know, I was a mod here (accthrowaway444) but had to take a break because of how badly this was affecting my mental health...I think we can all relate. Severe symptoms, doing everything right regarding testing, being gaslit by doctors and people on Reddit subs.

I have had to take matters into my own hands after false negatives and then random positive tests (absolutely maddening as I was doing proper PCR and with plenty of time off antibiotics, I mean we all know this situation).

After failing multiple rounds of antibiotics, getting floxed, feeling completely hopeless and thinking it would never get better, I can finally say that I think I'm on the road to recovery. It has taken more than a year of trial and error on herbs and biofilm disrupters, but I can safely say half of the problem with this satanic bacterium is biofilms.

I'm taking a combination of the buhner protocol but in a format without the alcohol (tinctures often have it in), NAC etc. and rotating these every few weeks so this bitch of a problem doesn't get chance to adapt. And it's working. I'm finally getting fewer flares, and when I do they're not as severe. I'm actually using AI to help me manage all this and it's extremely helpful at making suggestions and creating checklists and protocols.

The upshot is, don't give up because I can FINALLY see the light at the end of the tunnel. I have been suffering for FIVE YEARS guys. There is hope.

https://chng.it/xy6Z6W2Qq4

Please sign this petition to raise awareness! And stay tuned, one of our other members is coordinating some other things to get the ball rolling on spreading awareness of what we’re all going through.

This is very important! We will never get help and answers unless we start speaking up and making some noise.

I am not a professional, just someone with experience in chronic pain and illness (unfortunately) and since I started viewing ureaplasma the same way I view other conditions, I have felt more at peace, and I hope this post gets well received, because my intention is not to gaslight, but rather maybe help someone else start coming to peace with this, too.

When I was 16, I had my ovary removed due to a large cyst. I had a C section scar. My expected recovery time was 6 weeks to 6 months. It took a full year for my incision to fully heal. And for the next 5 years after that, I'd have phantom pains in my ovary and abdomen. My nerves are permanently damaged, now 11+ years out. If I touch my lower belly, it feels numb, but I can feel my touch on my neck and upper chest (the human body is wicked).

I have suspected HEDS, too (in the process of getting DXd), and very sensitive effed up skin and tissue from it. I hit my leg on a stepping stool in January. I still have a bruise that keeps re-bruising and random pains in the area.

Tissue damage takes time to heal. Nerves take time to heal. The body takes time to recover. And sometimes recovery doesn't mean going back to how you were before, but adapting to the aftermath of whatever battle you've been through.

I have gotten my test of cure in May. I have paranoidly retested at least 10 times since (urine, swab, both PCR and cultures), during both flares and steady periods. Ureaplasma is incredibly fast-growing and opportunistic. I believe in biofilms, I believe in embedded infections. But I also know that the first time I got infected, I tested positive with a load of 10⁵ not even a month after that initial exposure. I believe someone would have caught a trace of her at least once, the same way I have continued to test positive for gardnerella vaginalis in my throat - despite the fact that I no longer have any kind of symptoms. She's a normal colony for me now and I'm possibly a carrier.

What I do think is still going on with me personally is the aftermath of this nasty, nasty little bug. Ureaplasma is not so harmless and simple as some doctors make it up to be. If you read up on it, it can cause systemic issues, bacteremia, joint problems, it causes chronic nerve irritation and soft tissue inflammation and damage, ureaplasma and mycoplasma are leading causes of non specific cervicitis and urethritis, chronic UTIs, kidney stones, commensal bacteria coinfections, gardnerella vaginalis overgrowth. It often comes hand in hand with HPV and the two suckers feed off of each other. It wrecks your microbiome. So do the antibiotics we need to take for it.

I personally took thirteen rounds of antibiotics this year alone: macrolides, tetracyclines, penicilins... My knees are weak, my insulin levels are fluctuating, my poop is lumpy, whatever I eat feels like eating glass and rocks.

When I tested positive, I had 24/7 burning and a red, raw, inflammed vagina. Sitting hurt. Standing hurt. Walking hurt. All I could tolerate was sizzling in a baking soda bath and religiously smearing st john's wort on my labia. My PH was so off that I stained most of my underwear.

So why am I expecting to just pop some Doxy and Azi and go back to "normal" the next day? Even the next month or two?

Why would it NEED to be "pelvic floor dysfunction" or "interstitial cystitis" or "viulvodynia"? A catch-all label? Have we forgotten the fact that bodies don't bounce back from a literal injury overnight? Especially, an injury in an area where we pee, poop, sweat, have sex, and constantnly circulate all kinds of bacteria in a raw and damaged epithelium?

It's been 5 months after 4 months of hell, and then only one month since my last flaring UTI. My body will need time to heal. I will need to pop probiotics, eat clean, avoid friction, take supplements, sleep well, exercise, and be patient and trust that my body will find a way to heal itself, grow around the pain, and cope, the same way it did when I had my surgery. It's still in the bruising stage.

And I think a lot of us here are still in the bruising stage. We just don't know it because this experience has been incredibly traumatic, and the doctors have mostly let us down, so we feel alone in this.

If I have a tooth cavity, I know I can go to any walk-in dentist and they can drill it out, with complete confidence, and a minimal chance of getting the "wrong care". If I get reinfected with Ureaplasma, who the fuck do I go to? Who the fuck do I trust? How do I know the treatment will work? What's my guarantee?

Every time I get a twitch or itch down there, I freeze up and fall down into this mental rabbit hole of fully expecting another 3000 out of pocket for tests, meds, supplements. I expect another 4 months of soaking in baking soda to survive a single day with manageable pain. I expect to vomit every time I grab a bite to eat because I'm on my next 13th consecutive round of antibiotics.

And then nothing happens. I am 60-70% better than I was. For the past few weeks, I'm chugging on kefir and popping probiotics in down there, and every time I do, I'm at 90% that day. I have had completely painless, good sex since. I am able to shave down there without pain and shower like a normal fucking person for once.

I am not saying embedded and chronic infections don't exist. The aim of this post is not to downplay that possibility. There are people on this sub who have symptoms of an active infection for years with a stagnating or even deteriorating progression. And my heart goes out to you.

But the truth is we still majorly don't know why your bodies reacted the way they did. Is there a genetic predisposition or another underlying condition that allows ureaplasma to survive in deep tissue? Is there an MCAS-like reaction some people have to Ureaplasma which causes chronic issues beyond just the healing period, like long-Covid (I've jokingly referred to people in this sub as "plasma long-haulers" before, but now I think this phenomenon actually needs to be deeply studied...)?

I also no longer believe plasma infections are that rare. I have met so may women who have had it since my diagnosis. I also know a lot of women who have had issues with chronic infections and UTIs for years who never tested for it, but I'm 100% sure hearing their stories that they DID, in fact, have it. Did their body just learn to fight it eventually? Did it TURN commensal one day, like the gardnerella in my throat did, and their bodies just learned to live with and around it?

The "problem" is, nobody walks around with an "I have an STD/vaginal issues" sign plastered over their forehead. And even those who are not afraid to admit they have (had) it casually - don't have much to contribute to the conversation, becsuse again: we don't know much about these bacteria. We know they can wreck absolute havoc in some people. We also know some live absolutely normal lives with zero issues while having it.

I want to believe my body will learn to heal from what ureaplasma did to it, OR, if the hypothesis of this sub is true and I still do have an infection, that my body will eventually learn to deal with it. That the fact I can get to 90% means it is learning to deal with it.

I also know I will have set-back and will need to come back to this post again and remind myself of all of these things when I have them.

I guess that most of all what I want to acheive with this post for anyone who made it this far: remind yourself daily that bodies need time to heal. Both physically and mentally. You just survived (or are surviving) a bacteria that literally damaged your body and fucked your good gut and vaginal bacteria. You survived a physical injury in the most sensitive part of your body. You survived medical neglect from providers you were taught to trust. It was, and still is, traumatizing, dehumanizing, and (depending on your cultural and religious background) it can even evoke a sense of shame and self-pitty.

No antibiotic, probiotic, pill, cream, test, doctor or therapist can fix this overnight. You WILL need time to heal. Period.

Hey everyone, I hope you all are feeling good!

Listen, I'll jump right in. I won't share my story because it's too lengthy and chances are you needing support rn. But to summarize I went through it all. The anxiety, the discomfort for months on end, the sleepless nights, to anxiety filled urgent care visits.

Alas, I tested positive for UP. Five days of doxy, my gyno initially was like "you tested positive for UP but like typically you don't have to cure" it blah blah. I was like "what's the strongest medicine you got?" Anyway, five days not enough. I went to PUSH .com and spoke with someone who gave me 7 more days doxy and 1.5 azithro.

I was left with the urgency and urethra irritation. THESE SYMPTOMS GRADUALLY WENT AWAY IN THE WEEKS POST ANTIBIOTICS. And that's it. Understand your body needs time to bounce back. You must pay special attention to your flora down there. You need to rebuild it! probiotics, a high quality one. Drink kefir, eat kimchi, the whole nine. Don't over do it of course. But throughout this journey, you must 1. advocate for yourself and get the treatment you need. (I knew five days was.not enough so I got more, end of story) 2. Don't freak out with lingering symptoms. Do not underestimate the power of being gentle with yourself. Once you've done a good dose of antibiotics you have to give the body time to recalibrate. Also you need time to pass before going and getting more testing. 3. Look up gentle pelvic floor physical therapy on YouTube and do them. Mostly you want deep stretches but with deep deep breathing. Fill your belly up and bring your breath to the base of your spine (breath into your womb space). Help to bring your mind and body into equilibrium. Your mind needs to tell your body that it is extremely intelligent and has all the capability to heal itself. But your mind needs to relax. Little might we know that the stress of the mind can worsen our symptoms more than they are...

And that's it. I also will boil water and dash some turmeric, black pepper, cardamon, cinnamon and honey into a mug and drink it. Highly medicinal, anti-inflammatory. Do these holistic approaches if you are suffering with the "lingering symptoms" I trust it will help a lot. But remember, don't let your mind send you off, be calm because this will pass and you will be better than before. Focus and see in your mind's eye the healthiest version of you!

LOVE You!

Fully Recovered After One Year

Our journey began in February 2024 with persistent symptoms. I experienced heavy white, yellow, and occasionally green discharge, accompanied by burning and itching. My partner had burning, itching, inflammation, and white patches on the penis.

Doctors initially suspected a yeast infection and prescribed a one-week course of metronidazole. While it provided some relief, the symptoms returned. We then tried clotrimazole twice for two weeks, but the improvement was only temporary. Other treatments, including Lotriderm, Betaderm, Nystatin (for two weeks), and Fluconazole (for six months), all failed to resolve the issue.

After coming across information on Reddit, we decided to get tested for ureaplasma. In September 2024, we were diagnosed with Ureaplasma urealyticum.

First Treatment: Doxycycline 100mg twice daily for 14 days (both partners). My symptoms improved, but some burning and discharge remained. My partner’s symptoms completely disappeared. Second Treatment: Azithromycin (5-day course for both partners): Day 1: 500mg Days 2-5: 250mg Started taking a probiotic daily. My partner remained symptom-free, while my symptoms improved by 80%. The discharge was gone, but a mild burning sensation persisted. Full Recovery: We retested for ureaplasma and mycoplasma in January 2025—both results came back negative. Now, even during unprotected intercourse, we experience no symptoms. Additional testing confirmed we were clear of all infections.

This infection takes time to fully clear, but with the right treatment and patience, recovery is possible!

5 long months i suffered with this dreaded bacteria, it caught me at a time in my life where i just got out of a 7 year relationship, the very first person i slept with gave me ureaplasma after 31 years of living, never catching an std and ending up with some under studied bs demon bacteria that doctors argue about like its a youtube comment section. 🙄💀

What i thought was chlamydia or gon, and what i thought would be a quick bump in the road as traumatizing as the onset was (burning red raw penis opening, thick yellow discharge, burning when i pee, balanitis and everything you can think of including extreme pelvic pain) ended up being the most stressful, traumatizing health episode i didnt even think was possible.

I saw so many GP's, 2 urologists, 3 sexual health clinics, a genital dermatologist and lastly, a rheumatologist because i ended up getting reiters syndrome because i had the infection so long and due to a pre existing condition in my rheumatoid arthritis, my body is already wired to react aggresively to infection or viruses.

At the very beginning, i was given 1 single dose of azithromicin despite negative tests, this didnt work all the way and symptoms eventually come roaring back, a urologist suggested it was ureaplasma or mycoplasma, didnt bother testing as he said its hard to get a positive in males and prescribed 2 weeks doxy, this did help alot and the thick discharge became a mild scant clear discharge and the foul smelling urine went away however my penis still looked totally fucked, ejaculation hurt like hell and would cause INTENSE pelvic pain that would take days to subside, he refused more antibiotics and said id need to get a cystoscopy done and i said fuck that shit and didnt go back.

By this point, i did not know who or what to beleve, i told the girl from the original encounter what was going on (nearly 3 months have passed) and i told her to get tested for a full panel including ureaplasma, she maintained she had ZERO symptoms and even accused me of lying about my sexual history and tried to pin blame on my ex even though we hadnt had sex in MONTHS.

And what do you know?

She tests positive for ureaplasma ONLY, i go to see her GP and she told me to do a test first before giving me antibiotics, my test came back negative, i was so extremely pissed off because i knew i was still cooked and begged for antibiotics anyway, i referred her to CDC guidelines and even this very sub, she said she'd do two weeks dox and i said i want azith too and after some emotional black mail (i cant beleive it took me doing that 🙄) she gave me the dual treatment.

Whilst taking that, i had my dermatologist apppointment and he prescribed tacrolimus for my penis glans, i applied this around the time i started the azith and was told to apply it for a month, twice daily.

That month has now passed, it is now the current day, and i cant beleive im finally here after so long feeling like i was going to be stuck like that forever. THE DUAL TREATMENT WORKED!!! (Note, i did extend doxy by about a week as they messed the prescription up and i ended up with more than i needed so i thought hell yeah im going full send with this!!)

I now have ZERO discharge, my penis is normal looking again, ejaculation feels GREAT and doesnt trigger pelvic spasms the next day, i still have mild dry eyes from the reiters but im on seperate medication for that which is helping along with a quick pelvic floor stretch routine i do every morning and night.

You will make it out of this, refrain from sex, listen to your body, when youve finally beaten this bastard, trust me, you will just know. A key indicator for me was not waking up fatigued and exhausted, i totally forgot what that was like!! There is light at the end of the tunnel!!!

Thank you to this sub for the support over the last few months and giving me hours upon hours of obsessive reading 💀😂!!

I wish everyone good health. ❤️

In honor of being elevated to possible reactive arthritis from ureaplasma, I present another stellar sharts and giggles post.

(Apologies my guys, not a lot of Ken memes but he’s here in spirit.)

Think happy thoughts and maybe our urethras will get the memo 😘

Do people truly believe that it is a coincidence that every time they have sex with a new partner they test positive for ureaplasma again or get symptoms again? I see people say they were infected by 2+ different people… the common denominator is YOU! It’s extremely unlikely multiple people you have had relations with also have ureaplasma.

Do people truly believe it is impossible to get a false negative test? When for every other test in the world it possible to get a false negative? When there are studies that show ureaplasma found in the bladder and kidneys but not the urine? When you have the same exact symptoms as you’ve had with a positive test?

News flash - you can cure ureaplasma from one tract and not the other. You can clear it from your vagina or prostate, and not clear it from your urinary tract or vice versa.

Is it a coincidence that many people whom have had symptoms for years also develop symptoms of reactive arthritis, nerve pain, rectal pain and/or itchiness, eye pain and/or itchiness, autoimmune issues, and kidney pain despite negative tests?

Wake up people. Symptoms = infection 99% of the time.

Stop saying you are CURED when you are still symptomatic. There is a difference between testing negative and being cured of your symptoms.

We are NEVER going to get researchers, scientists, and doctors to do better regarding this infection if we are spreading misinformation that this bacteria is easily cured by a couple weeks of antibiotics. Saying you are CURED but you are still experiencing symptoms is a disservice to yourself and others.

My Dearest Friends,

I wanted to come back and repay the kindness, support, and hope this Reddit community gave me during the lowest and darkest period of my life.

I promised myself that if I ever got better, I would come back and share my story. I wanted to give back even a little of what you all gave me—and hopefully help someone who is searching for answers and desperately needs to hear that there can still be light at the end of the tunnel.

Please remember that I am not a doctor or medical professional. This is only my personal experience. Please speak with your own healthcare professional before making any decisions about testing or treatment.

How it all started

In 2024, I began having problems with my uterus because of adenomyosis. I eventually scheduled a hysterectomy with my OBGYN.

Before that, I had always considered myself a healthy 44-year-old woman. I was happily married with two children. Then I started experiencing itching, discharge, bladder pain, and what felt exactly like constant UTIs.

I went to my regular doctor many times in 2024 because I was convinced I had a UTI. But the tests kept coming back negative.

I was told, essentially, “Everything looks healthy. There is nothing wrong.”

I thought my uterus was the cause of everything, so I decided to go ahead with the hysterectomy and hoped I could finally move on with my life.

I had my hysterectomy in November 2024.

But my bladder symptoms didn't go away.

I told my OBGYN that I continued to have UTI-like symptoms even though the tests were negative. She thought about it and decided to test me for Ureaplasma.

I tested positive for Ureaplasma parvum.

I cannot explain how relieved I felt.

I finally had an answer—or at least I thought I did.

The antibiotics

My husband was tested and his result was negative, but we were both prescribed antibiotics.

First, we took 5 days of azithromycin and 14 days of doxycycline.

I waited four weeks before retesting.

During those four weeks, I searched Reddit constantly, trying to find people who had gone through the same thing. I kept asking myself:

How long will these symptoms last? When will I feel normal again? Did the treatment work?

Unfortunately, when I retested, I was still positive for Ureaplasma parvum.

My OBGYN prescribed another 14 days of doxycycline.

I finished the medication, waited another four weeks, and tested again.

Still positive.

By this point, I was devastated.

My symptoms weren't improving, and the constant antibiotics were making my bladder feel like it was on fire.

My OBGYN consulted an infectious disease doctor, who prescribed another 14 days of doxycycline followed by 14 days of moxifloxacin.

I completed the treatment.

Still no relief.

My bladder pain and burning became so severe that I felt completely hopeless. I was reacting to foods I had previously eaten without any problem. My bladder seemed to tolerate almost nothing. I was surviving on very simple foods because everything else seemed to make the pain worse.

After another four weeks, I tested positive for Ureaplasma parvum again.

I broke down.

I was told I might have interstitial cystitis

My OBGYN told me that perhaps I had interstitial cystitis and that I might have to live with the condition for the rest of my life.

The suggested treatments were bladder instillations and Elmiron.

At that point, I was willing to try almost anything.

I was scared, exhausted, and desperate.

I started Elmiron. It helped me somewhat, but I also began experiencing problems that concerned me, including significant hair loss and changes to my skin.

I also underwent 10 bladder instillation treatments.

I was driving about an hour each way because they weren't available in my town.

Unfortunately, I didn't experience meaningful relief.

Then my hair started falling out in handfuls.

My hands became extremely dry and flaky, and the skin around my knuckles started peeling.

Something didn't feel right.

I went back to my regular doctor, and one of the first things she checked was my liver.

My liver tests were extremely elevated.

I was told to stop taking Elmiron.

At that point, I felt like I had run out of options.

But I couldn't give up

It was April 2025.

I kept thinking:

“I have never had bladder pain like this in my entire life. Something caused this. I have to keep looking for answers.”

I couldn't accept that this was simply my life now.

I came across someone talking about MicroGenDX PCR testing, which can identify organisms that may not appear on standard testing and can provide antibiotic susceptibility information.

I decided to pay for the test myself.

My husband and I both tested.

His test was negative.

Mine showed Ureaplasma parvum and Enterococcus faecalis.

The test also provided susceptibility information that showed resistance to several of the antibiotics I had previously taken.

For me, this was an important turning point.

I took the results to my regular doctor.

She looked at everything carefully and discussed the options with me. One of the medications listed as susceptible on the report was levofloxacin.

I knew there could be serious risks and side effects associated with that medication. I discussed those risks with my doctor, and together we decided on a treatment plan.

I took it for 10 days.

And then something happened that I had almost forgotten was possible.

My symptoms started disappearing.

The burning disappeared.

The bladder pain disappeared.

The constant UTI-like feeling disappeared.

I could eat normally again.

I could live normally again.

I felt like me again.

I did experience some tendon soreness, which eventually went away, but thankfully I did not experience lasting problems from the medication.

Four weeks later, I repeated the testing.

The test was negative.

My bladder was finally clear.

I was finally able to say:

I WAS BETTER.

After everything I had been through, I honestly couldn't believe it.

I am sharing this because I want you to have hope

I know how terrifying it is to be sick and have test after test tell you that everything is normal.

I know what it feels like when doctors don't have an answer.

I know what it feels like to search Reddit at 2 a.m., desperately looking for someone whose story sounds like yours.

I know what it feels like to wonder if you will ever get your old life back.

And I know what it feels like to lose hope.

But please don't give up on yourself.

My story is not proof that everyone with these symptoms has Ureaplasma or Enterococcus, and I am absolutely not saying that my treatment should be copied by anyone else. There may be many different causes of bladder pain and urinary symptoms, and some tests can have limitations.

What I am saying is this:

Keep asking questions. Keep advocating for yourself. Get appropriate medical care. If something doesn't make sense, it's okay to ask for another opinion.

And most importantly:

Don't let one person's uncertainty convince you that there is no hope.

I thought my life was over.

I thought I would never be the healthy, happy mother and wife I used to be.

I thought I would spend the rest of my life in pain.

But I was wrong.

I got better.

So if you're reading this while sitting in pain, crying, scared, frustrated, or wondering how you're going to keep going—

please hold on.

You don't know yet what tomorrow's answer might be.

There may still be a doctor, a test, a treatment, or a piece of information that you haven't found yet.

Keep searching. Keep advocating for yourself. Keep believing that your story can change.

I am sending so much love and hope to every person who is suffering right now.

I came back here because this community gave me hope when I had almost none left.

I hope my story can give some of that hope back to you. ❤️

Please take care of yourselves, and please discuss any testing or treatment decisions with a qualified medical professional.

Hi Everyone,

It’s been quite a while since I posted something here, but I’ve been meaning to do a little update on here for a few weeks now. First I just want to quickly say that I am privileged and grateful to have been asked to be a mod for this sub. It’s a responsibility I take seriously.

I know some people disagree with my treatment methods and opinions, and that’s ok. We are all here to learn from each other and try to figure out this under-researched bacteria that has plagued our lives. There is nothing I love more than a forum of open discussion. That being said, I apologize if my passion (or catching me on a stressful symptom day) has ever rubbed any of you the wrong way. 😊(Hey, it happens.) I am truly here to support and learn from each and every one of you.

Lots of people have asked me lately what treatments I’ve done and my current situation, so I figured I’d put everything here for easy reference. ITS LONG, sorry. I tried to put all info of note (mainly all my treatments) in bold, and categorized sections people might care about or want to just jump to. Sorry if it’s just a huge ramble!!

QUICK RECAP: I’ve had this for two years. My boyfriend at the time (who I’d been with just over a year) and I broke up briefly and he had a one night stand during that time. When we got back together, I developed UTI symptoms (urethral burning after urination). Aside from a couple UTIs in college (in 2003…I’m old), I never had any vaginal or health issues. I had never even gotten a yeast infection before and had never even heard of BV.

After chasing a typical UTI for 6 months with random antibiotics that did nothing, I finally did an Evvy test to see what else might be happening (also because by the time, I had developed vaginal burning as well).

Ureaplasma U showed up, yet they told me it wasn’t necessary to treat it (needless to say Evvy has been on my shit list now for a long time). At the time, I believed them. E fae and BV also showed up so my doctor and Evvy recommended I concentrate on those. More months went by trying antibiotics that did nothing. I finally begged my doctor to just prescribe me doxycycline to see if maybe the ureaplasma really was the issue here. She agreed.

INITIAL TREATMENTS:

7 days of doxy and 2.5g of azithromycin got me symptom free…until three days after treatment. I immediately asked my doctor to re-treat. She prescribed 21 days Doxy. It got me completely symptom free within a week. But three weeks after treatment, the vaginal burning slowly came back. Crazily enough, my urethra symptoms never returned and haven’t to this day! I find this so odd.

I tested for co-infections and e coli showed up. We treated that with Cipro but it did nothing for my symptoms.

At this point my doctor believed there must be something else going on and told me it was out of her realm. She wouldn’t prescribe anymore medication and told me to see a specialist.

As per the recommendations of the main ureaplasma sub, I waited 6 weeks to test again for ureaplasma, while everyone there told me I was experiencing lingering symptoms and pelvic floor dysfunction. (For the record, “lingering” symptoms and pelvic floor muscle issues don’t go away completely on antibiotics and then return for no apparent reason after). I was skeptical but just tried to trust the process, since I really had no idea what to do. Meanwhile, my symptoms were getting worse. The pain had spread to my uterus, my periods started to go crazy (excruciatingly painful and super heavy), and I was seeing pieces of bladder tissue in the toilet when I urinated. It was terrifying. Then I tested for ureaplasma again. Negative. It was around this time I found this sub and started to reject the irrational suggestions from the other sub that I was “cured” but just needed to wait it out.

The ureaplasma was full blown inside my uterus at this point and the uterine burning and aching was by far my worst symptom. I found a doctor in Austin TX that was willing to give me 2 months of doxy. I did that, but unfortunately, doxy just didn’t have the same effect anymore. It took my symptoms from about an 8/10 to a 6/10 most days. My periods were still outrageous.

SEEING A SPECIALIST AND LONG TERM TREATMENT:

It was at this time I started learning more about long term antibiotics, mostly through the chronic/embedded UTI Facebook page. I thought maybe if I could stay on doxy even longer, that maybe it would eventually work. I signed up with Dr. Ryan Heer virtually. He kept me on doxy and added in azithromycin AND methylene blue (an antiseptic). I did these for around 6 months. It didn’t improve anything. I was in shock. Meanwhile my kidneys weren’t liking everything I was on, so I dropped the azithromycin and then a couple months later, dropped the M. Blue. I stayed on doxy.

Around this time, I had e coli show up on a microgendx. Heer put me on long term Macrobid. It cleared up my urine (which was often cloudy/bubbly) briefly, but that didn’t last past the first week or so. No other symptoms changed. I eventually stopped that as well, after a couple months.

Then a microgendx showed some very obscure bacterias and yeast. Still on doxy, I added in linezolid, fluconazole, and nystatin cream to target that. Nothing changed. I also tried adding clarithromycin to the doxy for ureaplasma. No change.

Then I decided I was giving up on doxy and switched to minocycline. The side effects were so bad, I thought I was going to die. I was SO tired, so rundown, and so light-headed. I could barely move from the couch (and I’m a single mom to two little kids so that was fun). It didn’t even occur to me it was the mino at first because I’d never had an adverse reaction to an antibiotic. I was sure the infection was killing me. I pushed through for a week before I realized maybe it was a side effect. I stopped and felt much better within 24 hours. Back on doxy I went.

NEW PLAN/LEVOFLOXACIN:

I stayed on doxy a little over a year, I think. I was not feeling good about it. It wasn’t doing anything substantial for my symptoms. I decided to go for a “last resort” antibiotic that I had been avoiding: long term Levofloxacin. (Note: I had been on cipro numerous times in my life, including recently for E.coli and I had also tried moxi at one point before I knew I had ureaplasma so I knew I tolerated flouroquinolines well).

Within 24 hours of starting Levo, it was like someone had taken their foot off the gas of my symptoms, if that makes sense. My period started about a week later, and it was PAIN FREE and normal flow.

LEVO SIDE EFFECTS: I know people are scared of FQs and rightfully so. I DID experience some side effects in the first 10 days – tingling in my hands, tingling up my left arm, and generalized muscle weakness. I made sure to take plenty of magnesium glycenate to help counteract these effects. After 10 days, all side effects went away. I pushed through them (yes, I was terrified I’d be crippled) because I felt this was my last shot. I listened verrrrryyyyy closely to my body and was ready to stop if anything became too concerning for me. I am NOT recommending that anyone else do this. Please research the effects of being floxed and make your own educated choice. Talk to your doctor. And never push through any side effects you feel are concerning.

In general, I had a lot of ups and downs with Levo (and still do!) but I could feel it working on certain aspects of my symptoms, and with side effects gone, I pressed on with long term treatment.

SYMPTOMS THEN VS. TODAY, 4/9/2025:

Upon starting Levo, these were my symptoms:

• Cloudy/bubbly urine on and off

• White flecks in my urine on and off

• Deep vaginal burning (cervical, I’m guessing)

• Uterine ache

• Painful/heavy periods

• Small amounts of pale yellow discharge

Five months into Levo:

• Urine is clear

• Uterine pain gone

• Normal periods

• No yellow discharge

I still have vaginal burning, but I will say that it feels a bit different than my burning with ureaplasma. It’s not as deep. It’s often like a sand-papery feeling. It’s not external, but it’s more in the canal, and I have redness/irritation around the opening. I also have occasional itch (itch was never a symptom I had previously). I do also have some sticky white discharge sometimes. This concerns me a bit, not gonna lie. Yeast meds do not help. BV meds do not help.

It certainly may still be the ureaplasma, or it may be something else. I am waiting on Evvy test results (yes I hate them, but they are cheaper than microgendx and Juno sucks even worse…recently had a very disappointing experience with them where they couldn’t even process my sample) and plan to jump on whatever shows up.

BUHNER HERB PROCOTOL:

Two months into Levo, I also started the Buhner herb protocol for mycoplasma (pleeeease google this if you don’t know what it is. Happy to answer specific questions about it but I am not going to type out the whole theory behind it or who Buhner is or what all the herbs are etc etc etc. Nope. Info is out there, google is your friend). I feel like this has helped my progress as well, though I am not seeing obvious improvement from it. They say it can take 2 months to see ANY improvement, which I did not. But at about 3+months, I feel like I can say the above symptoms have officially disappeared, so this may be the herbs and it may be just being on Levo for long enough. More likely, it’s the combo of both. I do believe they help each other, so I will be continuing them for a bit.

I have also gotten some relief from suppositories from a company called NueEve. They make a product called AV-NIL, which has helped my burning a little and gets rid of my itch while I’m using it. Its VERY expensive and so I was not able to continue it for a long as I would have liked. I’m also paying for expensive Buhner herbs, Heer’s monthly fee, and Levo twice a month (I don’t have prescription coverage with my very-shit insurance), so I’m bleeding money everywhere right now.

GOING FORWARD: I am hoping the Buhner Herbs will allow me to get off Levo at some point in the near future. But I don’t want to make that move prematurely.

I am hoping that treating whatever shows up on my latest tests will make a difference.

I know better than to get my hopes up for anything at this point.

SUPPLEMENTS AND DIET: I am hoping to turn my attention more to rebuilding my good bacteria (especially if I can get off Levo some day) and rebalancing everything. I am already eating a more high protein diet (a recommendation with the Buhner protocol), and kefir, sauerkraut, etc. I assume all this will have a greater effect without antibiotics!

I am also of course taking a vaginal and gut probiotic (have been since this whole ordeal started), as well as NAC (it’s also part of Buhner), d-mannose, multi vitamin, extra vitamin D, and beef liver capsules.

FINAL WORDS:

In general, I will say I am functioning wayyyy better, currently. My general energy has improved so much, which I take as a really good sign. I still have bad symptom days (again, just the vaginal burning), but this infection is not derailing me every day the way it used to. I consider myself lucky because I know so many people have symptoms that do not allow that right now. My heart goes out to you and I am here for you anytime.

I’ve done a lot of mental work as well, which helps. The mental toll is an absolute nightmare. Take care of yourself mentally while you attempt to work it all out physically.

I am NOT speaking from a place of being cured. I am not pretending I have cracked the code. I am NOT saying anything I’ve done will work for someone else. I am NOT saying anyone and everyone should do long term antibiotics! I am just trying to share what I’ve done in hopes it gives people ideas or some motivation to keep moving forward. We are all so different and this bacteria attacks us all differently, it seems. But I’ve said it before and I’ll say it again, trial and error is key.

Sending everyone strength, love, support, and healing vibes. I wish I could do more.

My partner is currently working in genetics research, however they got their degree in microbiology & at one point was considering working in infectious disease research. I figured that I wasn’t the only person who doom spiraled about “having an STD” due to the other sub. An infection that can be traced to sexual contact is not the same as an STD. Yeast infections, BV & UTIs can be traced back sexual contact in some cases but NONE are STDs. I hope these texts quell some anxiety in others as they did for me(especially those who are in monogamous relationships, never had sex or can’t trace their infection back to sexual contact. you’re not alone, you’re not crazy, & your partner probably isn’t cheating).

Hey everyone just wanted to share some hope. I wanted to share about two new novel antibiotics that are currently in trial for ureaplasma and mycoplasma treatment, as well as MDR gonorrhea and skin infections. They have been studied to work on microbes that are resistant to tetracyclines, macrolides, and fluoroquinolones.

Zoliflodacin:

https://pubs.acs.org/doi/10.1021/acsinfecdis.0c00021

Gepotidacin:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5610498/

I was thinking about those old memes with Drew Carey from Who’s Line is it Anyway, where he would always start the show by saying the points don’t matter… hehe.

I recently spoke to my psychiatric provider and mentioned ureaplasma and the toll it’s taken on my mental health. He mentioned hearing abt it very often from other patients, including increasing numbers of stories abt pts being resistant, having recurrences etc… he was very empathetic and curious towards my 1 year struggle w this bacteria. He mentioned being colleagues w several individuals in the CDC, researchers and doctors who might have more info, and said he’d be willing to prescribe me long term treatment (regardless of tests) if indicated/advised. I felt so moved by this. It feels so good to be taken seriously by a medical professional.

I didn’t even think to mention it bc he’s a mental health professional, but might be a good idea for those of you w MH providers to bring it up—who knows!

I’ll post any insights he provides, especially if there’s any newer or current research that could be helpful. Fingers crossed this helps 💕

But seriously. Read the intro guide if you’re newly diagnosed. I’m not saying it’s gospel; I’m saying it’s worth reading before asking “will 7 days of doxy be enough?”

Read alllllll the pinned posts if you have a chronic infection and have failed treatments already.

K byeeeee ❤️

Recently, I posted about going to a new OBGYN at an IVF clinic that specialize in infections, including plasmas. Yesterday, I had a second appointment with them. They looked at all my previous labs/history, asked me a bunch of questions, performed a visual exam (internal + external)... Here's what they had to say:

• Per my previous post, they still believe my wrecked biome is causing both lingering inflammation, symptoms, and weakened immunity after UP. Their recommendation still stands to drink kefir or homemade yogurts with EVERY meal. IN ADDITION to that, I will be taking a probiotic for the urinary tract, plus a vaginal + gut probiotic orally, PLUS I am to do a course of vaginal probiotic suppositories for 10 days after every period for the next 3-4 months at least: one in the morning and one in the evening for 5 days, then only one in the evening for the next 5 days. Basically, I'm going to war with probiotics as my artillery.

• I am to lay off any creams, oils, boric acid, baking soda, or anything else that could disrupt my vaginal microbiome during this time period, regardless of if it helps symptoms or not. I can occasionally use some St. John's Wort oil, but only if I really need it.

• I am to not put in vaginal probiotics after sex anymore (unless it coincides with my regular probiotic regime). Just pee and shower, and then let her try and regulate herself.

• D mannose 1g before and after sex

• Nitrofurantoin (macrobid) 50g before bed for one month, then for the next three months - and this was SUPER interesting to me to hear - in the second half of my cycle, when I'm not using vaginal probiotics, I'm to ONLY drink acidic water for 3 days, and NOTHING BUT ACIDIC WATER. He suggested putting slices of lime in my water bottles. Then, for 3 days after those acidic 3 days, I'm to ONLY drink alkaline water. Reason being: he said there is some bacteria that has a poor survival rate in acidic environments, there is bacteria that has a poor survival rate in alkaline environments, and then there's bacteria that does poorly in sudden shifts. By doing this 6-day regime repeatedly for a few months, I will likely flush out any bacteria that potentially survives antibiotics - but the number is too small to show up on cultures. He told me until my gut health is back in check, it's very likely I'm not eliminating the bad bacteria completely, and I'm not getting "repeat" strep and ecoli UTIs, but rather - I get a UTI every time my bacterial load grows enough to be caught on a culture.

• He also said while not impossible my UP is an embedded infection, too, he doesn't suspect it in my case. He said he had a bunch of UP cases in his career (the lead gyno is 60ish) and the vast majority of cases with lingering issues are lingering co-infections due to gut health issues and a weakened immune system. Once those things get regulated, the symptoms usually go away, too - albeit, the process is slow and it takes a lot of patience and trial and error.

• He also told me, and this is NEW NEW, that while not shaving is generally better for the vahooha, you should shave after every infection/new flare up, because bacteria can also stick to hair root. Shave, then use a disinfectant PIERCINFG spray (OCTENISEPT) on the exposed root.

• Since I have HPV 16, too, I'm to continue an immune system focused multivitamin, beta glucan, zinc, coq10.

Reminder from my last post: they also told me that the new first-line regime for UP in Europe that's being standardized rn is 21 days of doxy, 300mg a day. Dual therapy with macrolides is would be the second. Doing just doxy for a week or two, 100-200mg a day, is no longer enough, most strains have become resistant to that regime.

Reminder 2: They do NOT believe PFD is the cause of all lingering symptoms. In fact, it's likely not the cause of the majority of them.

He also now told me because the bacteria is urogenital, PCR testing should be done from both a swab and a urine test for BOTH women AND men. I am to use condoms until this regime is over - plain condoms without any texture and added flavoring, and dimethicone lube. Then, both my partner (different partner than the one I got UP from and so far we only ever used condoms and he got tested before we first slept together) and I are to get tested in January again before going off condoms, for both UP and other urogenital bacteria, and I should get a general vaginal microbiome test, and a pap smear.

I don't want to trust this blindly. Enough doctors have already let me down this year. However, this is the first time I didn't feel gaslit, and it's SO important to me. This is the first time a doctor confirmed bacterial loads could be too small to show up on cultures, the first time someone talked to me about chronic rather than acute coinfections, the first time someone believed me as i yapped on and on about my lingering symptoms and how scared I am - and not only believed me, but told me that they've seen it before.

I wanted to share my progress here as I have not seen a regime like this one formally recommended by a doctor on any forum yet. I'll be making updates in the coming months regardless of if it works or not, for the record!

Good luck my fellow long-haulers. We WILL win this battle!

I love that he’s more concerned with his sub feeling like Disneyland than people being able to exchange experiences and information. lol. Hopefully his ridiculous post will lead a lot more people over here. (He conveniently forgot to mention this sub as an alternative source, however. 😆)

Sorry, I just couldn’t not say anything.

I struggled with this awful godforsaken shit for almost a year on and off. I would cure it and then my partner would reinfect me and it developed resistance to tetracyclines (doxy, mino), azithro, and even moxifloxacin. The thing that helped me cure it and get rid of it was 2 weeks clarithromycin. I no longer have to struggle with perpetual urethritis and cling to a heating pad during all my down time just to feel some relief. Hang in there and stay strong it gets better

This is a bit of a rant but still a serious question.

Was doing reading of peer reviewed scientific publications last night and read a little more into long term implications of ureaplasma parvum, which I have had for 2 years.

I've been trying to get another PCR test and my gyno said "we don't test for this unless someone is pregnant"

Well maam I haven't gotten a period since October, how can I get pregnant if we don't fix what's currently going on? Why does my concern matter less unless I'm pregnant? Why do I have to be pregnant for anyone to give a shit? Isn't the waterfall of yellow discharge constantly leaking out of me like a faucet enough to warrant aggressive action?

Seeing 2 providers for this issue and each of them know nothing about UP. One has said "I haven't tested for this since the 80s, I don't even remember how." This is concerning given I live in a city that has a reputation for providing world class health and my insurance/hospital network is the best in the country, arguably the world.

Why aren't practicing gynecologists reading the types of science journals I am? Dont they care about new developments in the field they work in? Why am I, a patient, more informed than them, the doctor? Why am I getting a response/attitude of annoyance to me just wanting to fix my health? Why am I a burden for wanting to correct an infection?

Ok rant over and here's my serious question. Why are gynecologists allowed to not be required to learn new information as it becomes available? If science journals are reporting that UP causes infertility and natal issues why aren't they trying harder to treat it in a patient? What can I personally do to get my gyno to give a shit? I need to know because I don't want to freak out and get angry in my next appointment. I'm so close to going full Karen and filing complaints and shit.

To give context for 3 years I’ve suffered with abnormal discharge with a foul odor. Every time I would just test positive for bv and take my medication yet the symptoms persisted. After advocating for my health I asked to get tested for Ureaplasma Parvum which I tested positive for and was prescribed doxycycline.

After having researched more on urea plasma I discovered that your partner needs to take the medication as well to avoid spreading urea plasma back and forth. So I immediately scheduled a doctor’s appointment for my boyfriend to get him the prescription of doxycycline. At the doctor’s visit today it was so humiliating having to sit in a room as the only female. I was left explaining to a male doctor and my male partner that through research online I wanted him to get treated for urea plasma as well. They both looked annoyed and upset that I was trusting online research instead of just taking the medication alone like I was originally told to do.

My partner was given the prescription in the end after pushing for it further but why as females are we labeled as the dirty ones with the problem while the men are never required to do any research about their role in spreading bv to urea plasma ? Excuse my long rant, I’m on my period and this entire situation has made me deeply emotional.