UTI nightmare…need success stories

[Rochyella84]

I have had a chronic UTI for 2 months now. Short courses of Macrobid have helped but it comes back within 2 days each time. Trimethoprim didn’t help at all. I suspect a chronic/embedded infection and am waiting for an appointment with a specialist.

I am currently on a 2 week course of Macrobid and I have also started Hiprex and still symptomatic. My only symptom is urethral burning after weeing which can last several hours. I take d mannose regularly too.

On the chronic UTI Facebook group I’m on there are so many disheartening stories of people on long term antibiotics for years and still suffering. I keep thinking surely there must be people who need more than a weeks course but manage to shift this thing with something a little stronger and longer.

Im just feeling hopeless and need to hear something positive.

Have you tried Ozo bladder pain relief tablets? They won't stop the infection but may relieve the pain, just be aware they dye your urine bright orange. How much D-mannose are you taking? I take 1500mg per day normally but increase this to 6000mg per day if I feel a uti brewing.

A similar experience. Four short courses of antibiotics didn't shift the UTI. I kept saying I needed a longer course but to no avail. Referred to urologist and got 3 months which did the trick.
Still slightly prone but since being on topical oestrogen (also somewhat of a battle as GP in infinite wisdom thought systemic oestrogen would be better but I have finally got what I first asked for!) have not had any issues 🤞

When it was at its worst I found Potassium Citrate was the best symptom reliever.

Yes been on it for years, it helps but it isn’t ridding me of this current infection sadly

Ah sorry to hear that. It's so miserable to be in a seemingly-endless cycle of UTIs. I hope you get prescribed something that helps soon! My regimen in bad times was to take D-mannose, uva ursi and something alkaline like bicarb before bed with not much fluid so that they could do their work in a more concentrated environment, then down water in huge quantities all day to flush. You do have to be careful not to overdo uva ursi, but I took a lot of D-mannose. To get rid of them finally I was taking the D-mannose and obsessively hydrating long after the symptoms of a particular bout had passed, as well as being very cautious about coffee/alcohol. I know this sounds basic but I think it makes a real difference if you can get lots of rest as well - catch up with daytime naps/meditates if it keeps you up at night so that your body can fight the infection itself. Mine were at their absolute worst when I had a long commute and never got enough sleep.

Request 14 days cefalexin or ciprofloxacin

Insist that all samples are sent away for lab growth testing (not just dipstick)

Take probiotics

Drop all acidic and sugary foods for at least three months after the antibiotics to give your bladder time to heal

If it recurs again after this ask for a referral to urology.

Lots of experienced help on this thread but remember there is hope

I had an IC diagnosis at one point but am now basically ok. It was just scarring from repeat and poorly treated infection. But I still can't drink OJ and have to be v careful around sex

I also had the cystoscope and urethral stretch. It was definitely a turning point. I was in my 20s so not peri related. I'm dreading menopause but will reach for the hrt early

I had that too @YukoandHiro, in my 20s. Didn’t stop the UTIs and my kidneys were scarred from the infections that had progressed which is why I took antibiotics for years.

I’m mid 50s now, still have periods, no HRT and no issues.

@YukoandHiro @StormObelisk thank you both. There seems to be a lot coming out at the moment that IC is actually just chronic untreated UTI and lots of women given that diagnosis have been treated with longer courses or antibiotics.

My samples were all sent for culture and nothing grew but apparently these tests aren’t sensitive enough to pick up a lot of infections. My urology appointment is in a few weeks so fingers crossed.

Fingers crossed OP. If you're unhappy with your urologist ask for a referral to the Whittington hospital. They have a dedicated clinic for recurrent uti which is at the forefront of research. They treat it v differently to other clinics with v long term courses of ABs where necessary.
I've not been there myself as things improved for me, but it was next on my list to try if I hadn't taken a turn for the better

Great to hear how women on this thread are getting to grips with recurrent UTIs. I had this for over three years. In the end, I contracted a kidney infection and my anxiety went nuclear.

To give an alternative perspective to stories here I'll give you my story to health. I was extremely reluctant to go on ABs forever, so much so I began looking in other directions. So I tried acupuncture...I followed the TCM diet she suggested which was effectively low sugar and dairy, no alcohol, no coffee, lots of fresh herbs. I drank a herbal tea called bladder tea (from the local herbal tea shop). D-mannose and probiotics daily. Freshly made barley water when symptomatic. I believe this cleared my system, re-established a health microbial biome after so many courses of ABs, and crucially made me feel like I was back in control doing something to help myself. Now clear for over a year.

@BlooDeBloop thank you for your post. So many people have pointed out the diet connection, especially sugar and it does make sense. I’ve cut it out already. I’m feeling more positive after reading all these stories and hopeful I can overcome this.

I agree totally with the correlation between gut health and UTIs. I'm also on naturopathy supplements and probiotics, which have helped a lot in the brief time that I've been taking them.

I was just coming on to ask about a similar thing OP, and am reading the replies with interest.

I've had issues over Christmas but I'm 90% sure it's not bacterial. I have had issues with irritable bladder in the past when stressed (before my wedding it was hideous) or run down. I also have an autoimmune condition and mast cell activation, and I don't think it's a coincidence that I had a big old migraine right in the middle of it.

I don't have burning, just pain a bit like period pain and having to go frequently. I also have health anxiety so a bit petrified to test my own wee.

I drank some very pungent chai over Xmas and it absolutely broke me. My bladder felt on fire for 24 hours afterwards. Now it's just irritable. For me it's about calming my damn bladder down! I've just downed two Azo and an antihistamine.

If you are taking antibiotics, remember and take probiotics for at least a couple of months afterwards, otherwise your gut health will decline and cause you more chronic systems, not necessarily just in the gut.

Lactobacillus is especially good to take if you have UTIs as these good bacteria can kill the bad bacteria in the urinary tract.

I don't have burning, just pain a bit like period pain and having to go frequently. I also have health anxiety so a bit petrified to test my own wee.

I didn't have burning either, and your symptoms sound exactly like mine and I had multiple infections - but also inflammation on top of that.

@jamoncrumpets Ive got Azo but not taken it yet. Saving it incase burning gets really bad.

@PineapplePear yep am on probiotics, currently taking 2-3 a day.

Interestingly I am doing better yesterday today than I was when I posted but it’s very hard to know which of the following it is:
1 - antibiotics kicking in properly after 4-5 days
2 - the fluconazole tablet I took incase the burning is thrush related
3 - ditching sugar, caffeine and alcohol.

could be all three I suppose.

I dunno it just doesn't feel like when I have an infection. I have strips also but I'm too scared to pee on them. I know, I'm frustrating.

I am being seen by the cuti specialist in harley street. After 6 month of antibiotics and hiprex my counts were zero. I am trialng coming off the antibiotics I and so far so good.if things remain good they will trial me ming of hiprex in March. Remember alot of people on the support groups have suffered for years. I got seen quickly which I think has helped.

I had continual UTI’s when I was 17, it is such a horrible thing to have. I actually seen a herbalist in the end and he made me up some terrible tasting natural antibiotics which I took for about a month. Amazingly it worked and I’ve only had two in the last 20 odd years. Antibiotics from the GP just didn’t work.

Drinking cranberry juice and plenty water can help to stop you getting them.

@jamoncrumpets I don’t like using the strips either but it helps me monitor. I’m still positive for leukocytes at the moment.

@Crackedmosaic so happy for you and 6 months is comparably short compared to some. How long had you had it before you got seen? I will have had mine for about 9 weeks by the time I have my appointment at the end of Jan which I think seems relatively quick compared to women who have it for years before ending up at an embedded infection specialist.
Would you not stay on hiprex long term? It’s supposedly safe?

I know I should check but I expect the worst every time.

Well I tried using the strip and the Azo had dyed my wee so much I couldn't read it.