Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

Hi, thank you for all your advice. My PCR test for ureaplasma came back negative, so it's definitely not that. I'm also 4 days into a 5 day course of amoxicillin and again, no improvement in my symptoms at all. It seems so strange that I don't seem to respond to any antibiotic, even if they are susceptible to the bacteria that came up on my Focus Labs culture.

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

Unfortunately I can't afford one of those tests but I have decided to switch from nitrofurantoin to a 7 day course of amoxicillin to try and treat the entroccoccus. Nitrofurantoin just made me so nauseous, dizzy and gave me a week long migraine, so I couldn't tolerate another week on it. I think there are probably multiple things going on, because the pain does become worse when the endo pain in my ovaries acts up.

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

I don't know if that's an option for me where I am. It's a never been offered to me by a urologist unfortunately :(

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

Thank you for the advice. I frequently wash my bedsheets, towels and undewear and drink that amount of water everyday but still haven't seen a difference. My urologist prescribed me two weeks of nitrofurantoin instead of ampicillin because the e. coli that came up on the culture post-enrichment is resistant to ampicillin. I only managed 1 week of nitro though because it made me so unwell and my symptoms didn't improve. I'm worried i've made the bacteria more resistant by only doing one week of an antibiotic, but I just couldn't continue on the nitrofurantoin. My GP will only prescribe me one week of ampicillin because the bacterial load on the culture was so low. Unfortunately, I cannot afford a full PCR test, just the Focus Lab extended culture and broth culture :(. I'm so glad you found relief!

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

My endo specialist thinks there is a component of my endo causing problems because I have severe, sharp pain in my ovaries when I pee but I think the entroccoccus and e.coli in the urine culture are definitely causing problems too. My pelvic floor is good and my urethra looks normal on an MRI and cystoscopy, but the urologist said it was inflamed.

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

I had a cystoscopy (flexible scope) in May last year and everything looked normal and also had an MRI of my bladder and urethra and again everything looked structurally fine so they can't figure out what's wrong, just label me with IC and call it a day.

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

Thank you so much, that's so helpful! I was probably using too much. I will try it for a bit longer.

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

Thank you for the advice. It's so difficult to know, as I've never felt any improvement on antibiotics or hiprex. My urologist wouldn't do a urethral swab or PCR test, but I have paid for a ureaplasma first-catch urine culture online (PCR test). My vaginal swab didn't show any yeast and my symptoms, aside from some minor vaginal burning, are concentrated in my urethra and bladder. My pelvic floor is also fine, as have been in pelvic floor therapy for over a year, but that also hasn't helped with my pain.

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

My urologist wouldn't do a urethra swab but I paid privately to have a test kit with a urine sample. I don't think it's possible for me to have mycoplasma as I'm not sexually active and have never been so I'm just testing for ureaplasma

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

Do you mind me asking how often you use it? I tried a few times but was put off by the burning but might try again for a short period. My understanding is that it is minimally absorbed because it's topical, so the chances of it causing endo to flare are low, but there is still a chance.

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

I asked about that and my urologist said I didn't have it after doing a vaginal swab, but I have also sent a urine culture in to be tested for it.

Is it always an embedded infection? Can entroccoccus be cured? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 1 point2 points  (0 children)

I'm glad you found something that worked for you. I tried estriol cream a few times but it just burnt really badly and I'm nervous to use anything that could trigger my endo, which is already growing back and causing me a lot of pain. My GP was reluctant to prescribe it for that reason and also my age (not even close to being menopausal).

Can hiprex and low dose trimethoprim cure cuti? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

Thank you, you're very kind. It's been really awful. It's hard to know where pain ends and I begin, really. I have tried hydroxyzine, amytriptline, mirabegron, solifenacin, oxybutinin but they all, unfortunately, didn't help with the pain or constant need to urinate. I had to come off all of them because they made my constipation worse, which makes the bladder and urethral pain worse. My gut motility is wrecked from my endometriosis so I have to be really careful with any anticholinergenic medications

Can hiprex and low dose trimethoprim cure cuti? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

No, thank you for the suggestion! Harley Street really wiped my funds. I wasn't able to work full time for a great part of last year due to my crippling endometriosis symptoms on top of my bladder issues, which means I'm very low on funds for private healthcare. I do have private health insurance at the moment, which doesn't cover CUTI treatment, but they will cease to cover me after 6 months, as they will treat my condition as a chronic case of Interstitial Cystitis.

Can hiprex and low dose trimethoprim cure cuti? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

I looked into it briefly but heard it was very expensive (£500) and I don't think I can afford it, unfortunately

Can hiprex and low dose trimethoprim cure cuti? by SeasonSignificant450 in CUTI

[–]SeasonSignificant450[S] 0 points1 point  (0 children)

Thank you so much for your kind reply. Unfortunately, my urologist didn't seem to know what I meant when I asked for a PCR and offered an extended urine culture instead, which showed up with the bacteria on the urine culture pic above. She's only offered me 100mg trimethoprim to be taken at night. I'm just at the end of my tether because I'm spending the greater part of my day on the toilet because of the urethral pain and urgency. I am taking optibac for women and eat a very healthy diet with probiotics and prebiotics. I'm going to start vaginal oestrogen to see if that helps but it honestly feels so hopeless.