UTIs: do yours "boil" or "simmer"?

[Barnclown]

Hello there: following on from the grrreat repsonses to my first ? on forum yesterday, i feel bold enough to post this ? now.

have just got over another UTI. my tendency to get these has increased since menopause a few years ago, although i'd had them as a younger woman, plus a tendency to frequent urination. whatever, my UTIs are always the same: they don't creep up on me gradually, they roar in and hit me like a train. i think of them as "boiling" UTIs. and when one hits i have to move FAST to get antibiotics which, along with the mefenamic acid 500mg i take for period pain, does cut symptoms from 10/10 to 7/10 within 48 hrs: my symptoms are so extreme that no way would i choose to simply tough them out, eg with over the counter meds and/or alternative remedies etc. e.g. i only get an hour or so from the first slight burning feeling to full-on blood/puss/tissue/white blood cells in urine, redness in urethra, burning pain and swelling in lower abdomen, vomiting, diarrhea, chills and temperature, constant agonising urge to pee, pee flow and force virtually nil, exhaustion but impossible to sleep or even rest etc. interestingly, a lot of this is very similar to the agonising condition i was in all my life with every period (although they were irregular, scantly, with only a little red but more ugly brown discharge)

so, what i'm wondering is: how many of us out there have these "boiling" sorts of UTIs? i ask cause i've only just learned that a lot of 'normal' women are 'normally’ managing low grade UTI more or less constantly, what i think of as "simmering" UTIs. and i'm wondering: are "boiling" UTIs the exception rather than the rule? i've toughed out a lot of chronic pain all my life all over my bod due primarily to undiagnosed systemic lupus, and i know i'm pretty tough. but i have to say, my UTIs in many ways are right up there with the most violent pain ordeals i've experienced.. so now i'm hoping some of you can help me get my UTI experience in perspective by telling me about your versions

first, some background: as a 20-something woman and got what i call my first "boiling" (or "raging" or "galloping") UTIs, i felt totally shocked by their violence but assumed i was "normal": mine was the version of UTIs "everyone gets"....so i just tried to be responsible and take ‘normal’ preventative action: researched how to lifestyle manage them (over the counter meds, cranberry & turmeric (curcumin) supplements, avoid sugar drink lots of water always, don't hold pee in, pee & wash before/after sex, pilates for pelvic floor exercises etc) and i've been doing all this all my life. maybe this has helped prevent even more UTIs...

anyway, at 58 'm still conscientiously doing all that lifestyle management, but again I’ve been getting UTIs more often - and yes, i know UTIs can be more common after menopause when our tissues weaken etc. anyway, several years ago, when i had a real rash of UTIs in a row, my good woman GP tested to see if bad bacteria was lingering in my urinary tract between infections. when these tests were negative, she sent me to a wonderful physio for more pelvic floor exercise training, which was great. meanwhile, my UTIs had become resistant to noroflaxin & trimethoprin. and i was put onto cefalexin 500 mg 4/day x28 which still works for me. then my Lichen Sclerosus was diagnosed, which meant adding more management to my nether region's routine (dermovate, replens, emulsiderm baths estradiol cream etc etc). then last year, my lupus diagnosis was rediscovered, and i went on plaquenil with reasonable success generally all over my body. at that point my gp started to give me a box of cefalexin to keep at home for UTI emergencies...and i bought a GP-quality urine testing kit from amazon.

well, this year i've had 2 of these boiling UTIs, whihc may not sound like much but they do wipe me out even at that rate, and i'm trying to understand a lupus/LS patient & DES daughter’s version of UTIs better, partly cause my lupus rediagnosis means i am taking the danger that urinary tract infection can run up into our kidneys more seriously. Possibly my UTI situation is complicated by the NHS colposcopy in april which I am only now recovering from (still am really sore deep in my vagina)….and my GP has arranged for me to see that physio again for vaginal dilator training etc, but, bearing in mind how effective my LS routine has been over the years as well as the full range of my abdominal & pelvic & lower back symptoms, i don't think that vaginal 'size/shrinkage' is all there is to this. whatever, I am facing up to the likelihood I may have to engage with my GP & GYN re the possibility of endometriosis

so, i'll be very grateful if some of you out there will tell me if your UTIs "boil" like mine and how you & your drs manage them...i feel awkward going on at such length about this, but boy does this all mean a lot to me: i literally only know one person who has had boiling UTIs like mine and she is my sister who only had this "boiling" version way back in her 20s before having her children...now she just gets the simmering version. i am infertile, probably mainly, the drs say, due to the DES my mother was on for 9 months bearing me in 1953, so having children can't be part of my UTI mix.

so, my second ? here is even longer than my first ? yesterday about diagnosis...again, thanks in advance to anyone who manages to read all this and give me a reply!

[brighteyesjas]

Hi there, so sorry to hear that you are going through this ordeal, with everything else that is going on.

I too suffer with what you describe as "boiling" uti's. I experienced these when I was 9 for about 2yrs and they reared their ugly head again 4 and a half years ago. To the point it was that bad and doctor mis diagnosed me with an infection in the cartilage below the rib cage that the infection went straight to my kidneys. I was so ill, I have been on so many antibiotics to the point I too became immune to them and suffered over 100 of these in the 4 and a half time span, tried profalactic antibiotics, an op to stretch my bladder and ureathra. None of which have been successful, after no end of tests with urology, I was referred to gynae after a suspected case of PID. But even after my initial consultation they were convinced I did not have endometriosis. I was scheduled for a lap and on the morning of it they tried to make me back out, I am so glad I didn't as I knew something was not right and much to the doctor's surprise when I came round from the op they said 'sorry to tell you this but we have discovered you have the condition endometriosis, in the pouch of douglas, right ovary, left tube and ovary is stuck to pelvic wall, left ultrosacral ligament, rectal tube stuck to back wall, affecting your bowels, and bladder too' They said they are pretty sure it's the cause of my on going agonising uti's. After prostap, zoladex, the pill nothing seems to work so am now due to have excision on some areas via lap in around two months time.

[Barnclown]

brighteyes, you're a star. many thanks for going into as much detail as you have. it can't be easy to think back on what you've been going through, and are still coping with and going through. i too am sorry: to think of you with all this on your plate. but, i get the feeling you're sorta my kind of woman: aiming to understand your examinations, diagnoses, treatments and prognosis as best you can cause doing so helps you cope best with this sort of strain and also helps you to engage with your doctors effectively....through to more accurate diagnosis.

well, oddly enough i was offered lap back when i was around 21 and the DES scandal hit international headlines, but i chickened out. who knows how things might have gone had that gyn urged me to go ahead. and, later, who knows what would've happened if my husband & i had gone into why i didn't manage to conceive. funny old life. as it is, i guess i have coped with most of my stuff reasonably well up until now when aging makes me feel less able to handle these UTIs. of course, i'm curious how old you are.

i am vvvv grateful to you for helping me get my head around this subject, and for sharing your experiences: this is helping me a lot

take care and good luck: am hoping to find out how the lap goes

[brighteyesjas in reply to Barnclown]

Hi there sorry for late reply have not had access to Internet.

I am 29 yrs old.

So you have not actually had a lap then for the condition? Can you not push for one now, to maybe help a little. Also for them to find if endo is the cause of your uti's.

I am sorry you were not able to conceive and that you find it difficult to cope. I have found that this site is useful. Hearing that you are not the only one going through it, makes it somehow a little easier to deal with.

[Barnclown in reply to brighteyesjas]

thanks again

yes, i will be engaging with my drs now about endometriosis. there are so many aspects of my pelvic health that fit with the condition. and the fact that over the years all attempts to diagnose these various symptoms have failed, does make looking at endometriosis seem sensible.

i really feel for you, partly cause i know about having lots of infections & being on lots of antibiotics. i have spent my whole life fighting infections - seeming to catch anything going, not just UTIs - and meanwhile doing all the 'right' lifestyle management stuff to avoid infections. last autumn/winter i had 6 months on high strength oral antibiotics for osteomyelitis. and i even managed to get a UTI too during that time.

who knows how my drs will react and what investigations they go for first. perhaps they will recommend ultrasound. then even MRI, before full-on lap. there is always the possibility they will first send me to an immunologist because of my lupus

whatever, at least you and others on the forum have helped me get my head around the pelvic aspect of my health mix. really, for decades, my drs and i have sort of managed to avoid tackling the cause of my pelvic health probs cause i have kinda "coped" with their superficial explanations, plus antibiotics & mefenamic acid etc. meanwhile i was concentrating on all sorts of complex health investigations of other parts of my bod i.e. my spine. so, my pelvic health kind of took a back seat, which has meant decades of lonely struggle to be brave and carry on, while wondering why such violent UTIs, periods etc were happening to me and why i never seemed to run into anyone who was going through stuff like mine. now, finally, maybe we'll find out. it could just be all down to systemic lupus and immunology, but i will try to find out if endometriosis is also in my mix

meanwhile, i hope your lap goes smoothly and really helps