Beating a chronic UTI - success stories

[Spudulike3]

Hi all

I've had various UTIs over the years that were cleared up with the usual courses of antibiotics. However, due to a mix of circumstances I've now got one that won't shift and I've had it for about 2.5 months now. I believe the problem was caused by a mix of the Mirena coil, having to come off vaginal estrogen for medical reasons and having a catheter after surgery. The infection was found to be enterococcus faecalis originally and is still bloody there! I'm on the right antibiotics for it (culture test has been done) and am also back on the vaginal estrogen. However, recovery is really slow and I'm still symptomatic. I'm seeing the Malone Lee clinic people about it and also a urologist.

However, I'm really struggling to stay positive after a flare up during the last few days.

Does anyone have any success stories of beating a chronic / long running UTI?

I'd be particularly interested to hear from other Malone Lee patients who have had success.

All feedback appreciated!

XXX

Hi again. So let me describe the DIY test for aerobic vaginitis. It involves the standard UTI test strips that detect the presence of white blood cells. The aim is to find out whether the leucocytes (white blood cells, a marker of infection) are coming from your bladder or from your vagina. This is necessary because when you do a wee sample it picks up some of the vaginal fluid on the way past and therefore you can't tell whether bugs or leucocytes are coming from the bladder or the vagina. I hope that makes sense.

You will need some standard UTI test strips I use these ones www.amazon.co.uk/Multistix-US007-Test-Strip-Pack/dp/B018NXI88Q?pd_rd_w=IN5h2&content-id=amzn1.sym.d1be8665-d9a3-405e-a975-345d8cdd09c6&pf_rd_p=d1be8665-d9a3-405e-a975-345d8cdd09c6&pf_rd_r=REW04HBCQC7383HWNSJY&pd_rd_wg=jhGr0&pd_rd_r=5035009b-8cbe-42cf-b977-c7e9f186ed2d&pd_rd_i=B018NXI88Q&psc=1&ref_=pd_bap_d_grid_rp_0_1_i

You will also need some kind of tube like the one they give you at the doctors to put a urine sample in (clean obviously). Fill it with 10 ml of cold tap water. Then take a cotton bud and use it to swab the inside of your vagina. Do this for a 5 seconds say. Then place the cotton but in the tube of water and shake with the lid on such that what is on the cotton bud goes into the water. Then remove the cotton bud. After you have done this, use the urine test strips in the same way as you would for a urine sample, following the manufacturer's instructions. For example for the one I use you need to dip briefly and then remove and wait for 2 mins to read the leucocyte result.

If you get a signal for leucocytes you may well have aerobic vaginitis as high white blood cells is a marker for this. It could also indicate thrush or BV but in general high white blood cells are far more associated with aerobic vaginitis.

As an extension to the above, you could also take a urine sample and test this with the dipsticks as well. However, you have to take care not to get this mixed with the vaginal fluid as I say above. What you can do (and it may not be perfect) is to wash the whole area and then block off the entrance to the vagina with a tissue or tampon or similar and then take your urine sample. Try to get the mid stream sample i.e. wee for a bit and then catch the sample after that.
If your urine sample doesn't show leucocytes and your vaginal sample does, chances are you probably do have a vaginal infection and it probably is aerobic vaginitis. If this is the case I would strongly recommend doing the digital microbiology test to confirm.

It's all a bit complicated I know but I hope this helps. It's a shitty state of affairs that I've had to essentially make up this test myself as the medical establishment are way behind the times!

If anyone with what feels like a chronic UTI does try this test I'd be really interested to hear the results.

A note about treating aerobic vaginitis with fluomizin followed by vaginal probiotics.

There are some vaginal probiotics you can get i.e. you put pessaries in your vagina that contain actual lactobacillus bacteria. Some of these are available in the UK and other brands you can get on import.

What I found when I used these was that they actually gave me symptoms of a bad UTI for a short period. My theory is that the bugs go from the vagina to the bladder and cause you issues for a short while in an already irritated bladder. I just pushed through the symptoms and it worked out OK and I started to feel better compared to what I was previously. I'm glad I did it as I was truly desperate but I wouldn't recommend it. You may be better off taking oral probiotics for Women's health e.g. these from Optibac https://www.optibacprobiotics.com/uk/product/for-women-90-capsules?&utm_source=google&utm_medium=cpc&utm_campaign=brand&gclsrc=aw.ds&gad_source=1&gad_campaignid=10199642570&gbraid=0AAAAAD0H4LxgbvrM55prdjcjVRq83LhKw&gclid=Cj0KCQjwotDBBhCQARIsAG5pinNCCVUm__w3bcak0oWYP7Ajjv-FrA68kK_fbEY1osvlNmuzuMrWSygaAhz7EALw_wcB

I was very hesitant to post what I did as I am not a medical professional and I don't want anyone to get into more difficulties but at the same time this is my story. I would have so much preferred to be under the care of a medic but they all failed me so I was forced to follow my own path.

This story is so similar to mine. I had a uti but after antibiotics got alot of vulvodynia pain and unusual discharge.

I found out about aerobic vaginitis from My own research but when seeing both private and NHS gynecologists they knew nothing about this condition. I had to get my own private vaginal swabs done first by Juno as this was before digital microbiology existed but later follow up swabs I got done my digital microbiology. These swabs confirmed I had aerobic vaginitis still I couldn't get a doctor to treat me.

From futher research I also ordered fluomizin and then used vaginal probitics with oestrogen. This cured my aerobic vaginitis. Because it took so long for me to get treatment I still have some lingering vulvodynia. But I have gone from bed ridden to able to live my life with some discomfort.

I was in a dark place and it felt like there was very little help out there. The My Vagina website and Facebook support group was an invaluable resource and place of support. I spent £1,000's on getting treatment.

Thank you for taking the time and describing your methods and situation. So happy to hear you got to the bottom of it and feeling better. I will take a look into what you suggested. I also have bladder leukoplakia which is essentially an area of inflammation which I think is causing the bacteria to hide and go deeper and I’m planning to get that burned down to close the source.

@Rugbornepippin - goodness that is so similar! Even your choice of language - I too had some very dark days.

Did you also initially think that you had a long running UTI?

I'm glad you are improved. It's a shame you are not completely better but I understand functioning is so much better than it could be. It's a scandal this is not recognised and appropriately treated.

XXX

Yes I think I did actually have a chronic uti as well. I think the treatment of numerous antibiotics (specifically a course of pivmecillinam) for the uti probably killed of all the healthy vaginal bacteria allowing the pathological bacteria to flourish.

Thank you for sharing this info. I’m wondering if I have this. I’ve had feelings of UTI discomfort for 9 months now. The results currently show no infection (which just seems unfathomable to me). There were test results showing Strep B in my vagina and bladder but the GP keeps telling me they only treat pregnant women. I’ve had the most excessive discharge for months now - it ranges in colour from yellow to green and is heavy to the point I have to wear pads. I have sores and blisters. I’ve been referred to a GUM clinic who have given me an antimicrobial wash. I also have estriol cream which has made no difference after 4 months. I’ve got a steroid cream for the associated skin condition. It’s really getting me down. I don’t know what to do now.

Thanks for sharing this. I have suffered my entire life from recurrent UTIs. I am currently in a "flare" whi h started about a month ago and I had a bit of an epiphany: I realised that actually my symptoms are mostly now in my vagina/vulva and not really classic uti symptoms- so no urgency or frequency, not even pain whilst urinating - but my vagina feels swollen inside and infected and stings.

I've always focused on urine samples but for the first time ever I sent off a vaginal swab to Focus. It says that I have "heavy" growth of enterococcus and strep b. It does say that these are often not associated with any symptoms but may cause symptoms in some people. The only antibiotics that both are susceptible to are Amoxicillin and one other.

I have just got some estriol cream; I've had hormonal breast cancer and drs are reluctant to prescribe this so I've had to go privately to get it but I haven't had chance to use it yet. I just have to accept there is a small risk with it as I cannot live like this and my symptoms are generally worse since menopause.

I now think that I need to start looking at treating my vagina. Do you think the other testing company are better than Focus? Focus did say that they couldn't detect any Lactobacillis in my sample but that this is very difficult to detect in their test.

The other thing that's interesting is that taking a big dose of d- mannose seemed to make me flare up. And in the past when I've taken expensive probiotics, these have also exacerbated symptoms.

I just seem like an anomaly.

Anyway, thanks for all the info you have provided. This whole thing is like a giant complicated jigsaw that I wish we could solve.

It really is a scandal. It's utterly disgusting that we have to do our own research and resort to lying to online pharmacists to try to get the help we need. This is why women's forums like this are so important.

I have just ordered the vaginal swab and urine test from Digital Microbiology. I am lucky that I can afford to do that without causing too much hardship. God help the poor women who are not as privileged. It's scandalous.

@Momofthree072316 - good luck with everything - I hope you get to the bottom of if. Xxxx

@Mamamia35 - regarding strep B - this can absolutely cause problems. If you look at the scientific journal I gave a link to it specifically says group B strep. Your GP is right that it can be part of normal flora and generally only pregnant women are treated because of danger to baby. However it's all about the balance and if the strep B takes over that's a problem. I'd recommend doing the test with the cotton buds as if you see a positive result for white blood cells in your vagina you know something not right is going on. From what you've described sounds exactly like aerobic vaginitis to me

In terms of getting treatment you could show your GP or a GUM clinic the scientific paper and ask to get treated as it recommends. Failing that I guess it would be using an online pharmacy and telling them you've got bacterial vaginosis. Note that Metronidazole won't work for aerobic vaginitis though so you'd need clindamycin or fluomizin.

I'd be interested to hear how you get on. Good luck xxx

Hi @TheGrimSmile - I'm so sorry you're struggling. For Digital Microbiology versus Focus - they both have some pros and cons but in general it's good they exist at all otherwise we'd be reliant on crap NHS tests. The thing with Digital Microbiology is that you get a full picture of all the bugs that are there in including the lactobacillus. If the 'bad' bugs like strep B and enterococcus are at similar levels you may have a problem. If they are at much lower levels to lactobacillus this could be normal. It's all a matter of balance. I would recommend doing the DIY test with the test strip and cotton buds as well because if you've got high levels of white blood cells in your vagina you know something is going on. It's also useful to do that test later on after treatment to see if it worked.

Just a note on antibiotics - I found that oral ones didn't work and you may be better off with a topical treatment.

Also just from my experience, the vaginal estrogen can irritate a bit so you may want to go steady with this until things have calmed down a bit otherwise you may make things worse.

I agree it is like a nightmare jigsaw and a total scandal that there is no medical help! On that note all my advice is well meaning but I'm not a doctor so do please take it with a big pinch of salt!!!

Xxxxx

I really appreciate this detailed and very useful thread. Thank you very much for taking the time to start it, @Spudulike3 . You are probably helping more women than you know.

Thank you so much @spudulike3.I agree about the estrogen cream - stings a bit - so I will wait until things have calmed down. I'm going to get the full swab/ urine tests done and then order the cream antibiotic from an online pharmacy. I will keep you posted. 🙏

Thank you @Spudulike3 if it hadn’t been for your update about aerobic vaginitis I would be clueless. I went back to GUM clinic to be told that my test results (urine and vaginal) were clear 🤯. I talked about aerobic vaginitis and showed photos of the discharge from the last month. The consultant did further tests and lo and behold there were signs of infection. I am now being treated for desquamative vaginitis (extreme form of AV) with clinicydin and hydrocortisone. I have everything crossed that this will work. A combination of your post and my photos of sanitary pads… I’ve got the probiotics lined up for after the infection goes.

This has been going on for months, I’ve had 10 appointments about this and I don’t understand why the NHS aren’t testing for it. If this works I would like to join your mission of promotion. I think it’s more widespread. There’s another thread on here : meno symptoms that took you by surprise, lots of posts from women with “leaky vag”.

@Mamamia35 - that's wonderful news and I'm so glad they took you seriously at long last! I hope the treatment makes you feel better. Just to say you may need to be patient as it does take a little while for the inflammation to reduce. It also might be worth your while starting oral lactobacillus probiotics now so they're in your system.

Its terrible that you're suffered so much unnecessarily but hopefully things are looking up.

Xxxx

I have been plagued with ITU's this last year and after the last round of Antibiotics. Decided enough was enough and started drinking Cranberry juice every day . I also drink a lot of water and have stopped eating/drinking high sugary foods /drinks, carbonated drinks and caffeine. No Alcohol either .
I don't know if it's a coincidence but l haven't had another one for 2 months . Fingers crossed for you 🤞
Good luck OP .

This is a great thread. My DM is constantly plagued with uti and it’s preventing her from having a much needed op. Someone at hospital mentioned a portable bidet … looks like a squirty bottle. Anyone had any success with this ?Dm is 85 and a bit wobbly… I’m hoping someone can recommend something simple and effective

@wizzler - I'm sorry to hear your mum is suffering. It's such an awful problem. Xxx

I've been having issues for a long time, reccurent utis, bv and thrush issues and now, thick yellowish discharge that irritates my vulva and urethra yet nhs swabs keep coming back clear..
I've done a screen me and awaiting the results.
@Spudulike3 regarding the fluomizin how long of a course did you do?

I'm really uncomfortable and feel kind of swollen down there.

Hi @Candlelightswim - I'm sorry to hear you've got troubles. The fluomizin was the standard course for BV and I think it was 6 days. Xxxx

@Candlelightswim - I've not heard of Screen Me before and just had a look at their website. I'd be interested to hear what results you get as I've become a bit of a microbiology geek about UTIs and vaginal conditions! Anyhow hope you get some answers and that treatment works for you.

Yes, @Candlelightswimplease come back and tell us what your results say.

I too have what feels like a very sore and swollen vagina. I don't seem to have discharge though, which seems odd. I have got my Fluomizin but things have calmed down so I might wait to see how things go before I take it.

Has anyone tried P.Happi cream? I've just ordered some. I think it's more of a preventative though. Might be good for your mother @wizzler?