can anyone help with the crap water infections

which i am never free from , month in and month out and was told today that i will have to take antibiotics for the rest of my life is i want to get rid-- how the heck can i do that, either put up with the full belly feeling, always feel as if i nee dto go when i dont, and low backache and discomfort when walking etc etc etc or take antibiotics to ruin the rest of my already naff body- i am stunned.

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92 Replies

  • Can offer you no help with recurrent infections,so sorry it's not nice huh? but the antibiotic treatment should be just a very low dose to keep the bacteria at bay and make things a bit easier and it's titrated so hopefully not fail.nuisance to take every night but you should feel so much better on it without repeated infection.

  • bluepettals2 do you think it's a Lyme symptom? I have bladder issues especially at night time and reckon it's due to Lyme, an ultrasound didn't show anything untoward. Was talking to a good friend who was a nurse for over 30 years and she was shocked that my urine output hadn't been measured.

    It's rubbish, you have my sympathy.


    THIS IS WAR! i forgoti had 'the blessed seed' black seed oil in my fridge, i openedth e bottle ages ago so i hope it is still has its potency

  • Have you seen an urologist and had scans to check for kidney stones and other problems ?

  • If you are old like me. Couldn't get rid of Water works problems cystitis. Doc gave me course of cefredine 10 days i think. And then a quarter tablet every night as maintenance, this was for a few months. plus a cream called Ovestin (estriol) to use twice a week. Worked a treat, no more meds for it and no problems. Good luck Val

  • P.s. Have you had a Urine test?

  • i have loads of urine tests and loads of antibiotcs month after month. i forgot to ask about hrt and theoutofhours doctor last month wrote it on the notes! do thegps ignore it or do they not bother to read it or just dont agree-- pissed off to say the least, yes it could be a lymeprob cinnamon girl and bantam yes had a scan, i was supposed to see a gynie as i have part prolapse and the ysaid water wasnt draining- thatis falen flat so i shall chase that up now-i am really really pissed off.

  • bluepettals2 how did they know water wasn't draining? Forgot to say that when I had an ultrasound, it was with a full bladder but then had to pee when a further ultrasound was done. Endo reckons it's an irritable bladder and tend to agree, have noticed that stress makes it worse.

    Bladder issues is a common symptom of Lyme and it would be interesting to hear how you get on with the black seed oil. Do keep us posted.

  • cinnamon girl i has ultrasound and they stretched urethra tube but it must have gone back because the problem remains- the consultant said becos of the partprolapse that it presses on

    bladder so it don tdrainproperly an di shouldve seen a gyno bynow but that has got lost, so i am goingto have to ring them up tomorrow- i amso pissed off with it all, and how can i have a gin or

    glass ofwine onperpetual antibi'snot that i drink really but sometimes i fancy a glass. i bouht the black seed oil for hair an dforgot i had opened it - like i forgetto take th ecupboard fullof pills each day...

  • I had repeated urinary tract infections (although urine tests came back negative) - prolapse sorted in March but didn't help my symptoms. Had a sample in which you would have thought was full of shredded toilet paper - GP said she hadn't seen this before. Then referred to urologist - have had scan which has shown nothing untoward - now have appointments to have bladder examined - said he would use local anaesthetic- I said my pain threshold isn't high and he said it was only slightly uncomfortable rather than painful and over in a few minutes - he did say he sees many post menopausal women and it is often irritable bladder syndrome. I'm not sure his definition of slightly uncomfortable and mine would be the same. Any advice welcomed x

  • something is amiss, i thought the prolaspe op would help

  • Hi Cassandra, I get shredded skin in my urine at times. I have interstitial cystitis. I have never had a cystoscopy without a general anaesthetic. If you have interstitial cystitis the bladder wall can crack and bleed and can be very uncomfortable for weeks after. My urologist who is internationally renowned in the IC world would never put a patient through that. It is so important to have a urologist with knowledge about IC, many don't. It took me 5 years to get diagnosed because of this. My eldest daughter has just gone through the same for 3 years with her urologist. In the end I went with her because he was obviously clueless about IC I had to tell him what to look for and the treatment. This unfortunately isn't unusual. I can give you the name of my urologist, he's at a hospital in Crewe, another good one I see is in Leicester. Although I was living in Birmingham at the time I insisted on seeing the urologist in Crewe, and with NHS patient choices you have a right to choose your consultant and hospital. Don't expect GP's to know anything either. Read my post to pettals, lots of useful information there.

  • Hi Helcaster thank you so much for your reply - I'm thinking it might well be internal cystitis I have but how would I know if he deals with this? I went to him because through our health insurance he was the only one available. He looked a bit confused when I mentioned my sample - when I got home alarm bells rang - why did he not know about this condition? Another doctor did my scan and said he didn't see anything sinister - he also advised having bladder examined - I cannot remember if he mentioned internal cystitis or not. My irritation is in the vaginal passage and I think uretha is irritated as well. I'm worried about jumping off the table when he inserts the tube. I'm from Northern Ireland but how did you find out your consultant dealt with IC - also what type of treatment? Did you try the D-mannose I see mentioned on here a lot? Many thanks for your very informative reply - it's good to know that some people out there know what I'm going through x

  • Hi Cassandra, it's a minefield trying to find an urologist who really does know about interstitial cystitis. I went to the urologist who is a consultant to the charity COB Foundation, although I think they have just changed their name, if you can get to England I can give you his name. If you Google your urologist you can often find a bio and what their interests are, but I'll warn you there are very few who truly understand this disease.

    I had problems with pain and skinning inside my vagina, and often the skin around my urethra turned white and fell off. The skin loss was quite large chunks. I went to a professor in Birmingham privately and he said he had never seen this and put me on steroids, I also got sent to a urogynacologist who did the cystoscopy said my bladder was very inflammed, my mast cells were sky high from the biopsies, then did nothing about my bladder and offered to shut my ovaries down with an injection into the stomach, to see if that helped my pain. I told him no way, then I went through another 5 years of a living hell. Then my GP told me about COB Foundation, so in the end I went to one of their advisory urologists, who was fantastic and so compassionate, he knew all about the disease because he was involved in research for it and attended international conferences. He put me on hydroxyzine, after 3 weeks of taking it I started to get some life back. I had been put on cimetidine by my GP so for 13 years I took both these drugs. A year ago I decided to drop cimetidine as it interferes with my thyroid drugs, and also stops you absorbing some nutrients from food as it gives you a very low stomach acid. I told my GP that I wanted to treble my dose of hydroxyzine to 3 X 25 mg nightly dose. It does make you very sedated so you take it in the evening. I have gabapentin for pain, oxycodone for really severe bladder pain. I'm very happy on 75 mg of hydroxyzine, it's a special antihistamine and this urologist found out it damps down all the activity of the mast cells which cause swelling and pain. My daughter takes the same drug and she is happy also. You also have to follow a strict interstitial cystitis diet, no acid, so no citrus fruits, berries, spicy foods, no vinegar, tomatoes, alcohol, tea and coffee. You just get used to eating bland food and concentrate on what you can eat. I can tolerate pears, bananas, mango and more lately sweet apples.

    I'll try and find what the charity is called now, it's for everything to do with bladder problems.

  • Thank you for all the advice. I took D-mannose for the first time on Saturday - 6 tablets in total (instructions said that up to 14 tablets can be taken daily). Then took 6 tablets on Sunday. Awful burning/scalding around vaginal area and bum and palpitations which didn't last long - I'm wondering if it could be caused by D-mannose? It's the only thing different that I have used. I'm postponing my appointment with the bladder consultant as I don't feel I can get procedures done at the moment (injured my back and having physio etc and cannot sit for any length of time and my travel time is 5 hours return trip). Meanwhile I am going to try and find out who in Northern Ireland deals with IC - if there's anyone on this forum who knows of a consultant I would appreciate a reply.

  • Hi Cassandra, I have never taken that supplement for IC, you've obviously had a bad reaction to it or can you trace your symptoms to something you have eaten or a drink? Did you have a look at bladder health UK I sent you a link for? I think you can contact them and ask if they know urologists in Ireland that may help? In the end I went to see the first urologist on their list of consultants, he happens to be Irish, he may know someone who could help? You could phone his secretary? I have found him very accessible in the past.

    Why don't you ask your GP to put you on hydroxyzine for a trial? You can start it at 25 mg taken at night, or increase it up to 75mg at night, It has helped me enormously, my daughter too.

  • Cassandra, here is the charity.

  • sharing this now, i forgot i had this so i have had two spoons now andi will leave a note so i dontforget it

  • A couple of years ago I was getting repeated UTI s like you.

    I started taking D Mannose powder which has helped me a lot and have reduced my infections to twice a year. Not nice but I can cope with that.

    You need a course of anti biotics to start and then try taking a maintenance dose.

    You will find D Mannose on e bay and amazon.

    Do you know the cause of the infections ... do you have a prolapsed bladder ?

    Is your bladder emptying properly? Your GP presumably has some idea of the cause or he would not be thinking of prescribing long term antibiotics.

    Also your GP can prescribe oestrogen cream to be used vaginally which some times helps by returning the vagina to its normal ph and restores good bacteria.

    Hope you get some answers and the help you need.

  • thanks for that it wa ssuggested hrt but gp refuse dbut i shall ask fo rth ecream

  • If you browse Communities and look/ post on the website called Pelvic Floor Pain Community you will find more about UTI s and D mannose than you find on here.

    D Mannose is something you can buy yourself quite cheaply and not available on prescription from your GP.

  • pugdogs is that site here?

  • Yes... click on Communities at the top of this page next to your user name, go down the list to Browse communities and they are in alphabetical order.

  • i have a part prolapse womb

  • I will bet its not true urine infection

    My grandaughter was plagued with the problem till she was adequately treated with NDT

  • I TAKE ndt really fed up maybe not a high enough dose then

  • Pets,

    I had repeated bladder infections, pelvic pain and peed blood on & off before starting Levo.

    Levo improved everything a little but bought a whole host of other problems.

    I became free of all symptoms after switching to T4 & T3, then a year later self medicating on NDT.

    I am sorry to hear you are suffering so badly ... :o( ... x

  • I used to get a lot of UTI's until I started D Mannose, now I take a spoon at the first sign and keep it up for a couple of days and it normally does a trick. There's lots of info about it on the internet and a lot of people find it gives them relief and helps prevent infections.

  • Even for lyme disease is course for 3-4 years mixed ones depends from case but for rest of your life??? I never heard anything like that before 😯😯😯🤤🤤🤤🤤🤤🤤

  • no nor me but thatis what he said to keep th ebloody thing away but i am goingto search for a cure!!!!

  • I agree with the suggestion to try D-Mannose, also Lamberts Cranberry Complex should help, it's a powder you mix with water, and takes effect very quickly. It stopped the near continuous infections that I used to get.

  • Unfortunately you can't take any cranberry product if you have interstitial cystitis, where anything acid should be avoided. I made this mistake in the early days before I was diagnosed with interstitial cystitis in 2003. I used to drink gallons of cranberry juice thinking it was the right thing, but it made matters worse and the wall of my bladder was very inflamed during my cystoscopy. Anything acidic in IC is like putting vinegar on a mouth ulcer and causes enormous pain.

  • Oh I didn't know that Helcaster, it's a shame because the cranberry powder works very well, very quickly, but obviously no good for you. I tried the cranberry drinks but they had too much sugar in to be as effective.

  • Yes Framboise it's a lot of sugar! My grown up daughter was drinking mostly fruit juice when she worked in Qatar, I do wonder if this and a lot of UTI's caused her interstitial cystitis, but there is a genetic link too. She also has developed hypothyroidism in her 30's just like me, so worrying.

    Glad you find the powder helpful. Did you see in one of my replies that since my daughter drank daily kefir, she hasn't had bacterial cystitis for 4 months?

  • Yes I noticed your comment about kefir Helcaster, it's very interesting, I have sachets of kefir to make up and take every morning at the moment. However I've just realised something else, I've altered my diet a lot and taken a lot of supplements over the last couple of years thanks to a brilliant nutritionist I go to, and thinking about it my last UTI was at least two years ago :)

  • It must be such a relief for you Framboise, looking at your diet can help to calm a sensitive bladder. It's great you are drinking Kefir, my daughter wouldn't be without it now. I did read an article about recurring uti's and increasing your good bacteria was mentioned, it made sense to me. It's certainly worked for my daughter.

    Unfortunately she doesn't have a shower but bleaches and rinses well her bath plughole. I remember seeing a programme where they swabbed the bath plugholes and they found bacteria found in poo, so obvious you don't want to be bathing in that! All her precautions seem to be working.

  • Oh my goodness, I hadn't thought of bath plugs harbouring nasties like that, but I do disinfect my kitchen tap because I read about the bugs which can grow around those :(

    Yes good bacteria in the gut, and getting rid of the bad ones, is crucial!

  • very hard to live in a sterile world

  • Excuse delay Framboise, yes you need to deal with all possibilities of having gut bacteria infecting your bladder. Baths can be a source, it's always best to shower if you have access to one. As I have interstitial cystitis I don't bathe since 2003 now, I don't go swimming which I used to love, and I don't swim in the sea. It's not much fun and there are times I would love a relaxing bath, but a bacterial infection on top of interstitial cystitis is pure hell. The last time I had one was after sex with a new partner ( sex is always a potential source of infection) I was bleeding so much from my bladder I had to call a doctor out, the pain was terrible. For 5 hours I was trying to get pain relief and nothing was working. As I was on my own then the doctor went and got the prescription filled for me and brought it back. He really was in a panic as I couldn't cope with the pain, my daughter was so worried she didn't want to go to school and leave me, but I made her go, it was a terrible time, I would never risk that again.

  • I have been like this now for a couple of years and about to have a renal scan and a date with a urologist and started a maintenance dose of antibiotics which I have to take for 3 months then change to another antibiotic for a further 3 months but the sad thing is that it clears and then can come back. I drink loads of water, am in constant discomfort but am determined to get it cleared up. When you visit the surgery you are now being given NICE guideline doses of antibiotics, like 4 days, which is definitely not enough and I shall continue plaguing the life out of them until this is properly and effectively dealt with!

  • opall i agree it is bollocks this 4 day lark-- an article in the express last year a girl had a year plus of infections eventually the gp sent her to a psychatrist who told her it was in her head an dshe wanted to be a baby again!--- she found a proffesor in london whitttington hospital and she is on antibiotics for life- he said bacteria has changed an dthe testa are too old now to grow the new bacteria

  • Hello

    I can recommend D- Mannose too. Try neat organic Cranberry juice which has no sugar in it. It's about £8 a bottle so not cheap and v sour but it's v good at unsticking the bacteria from the bladder wall. Also try and reduce or exclude as much as you can sugar from your diet, eat low carbs and drink tons of water. Antibiotics is the very last resort and lots of evidence to suggest that a depletion of good bacteria is a cause. You could try a very good probiotic to repopulate your bladder. Bio-Kult do one specifically for the bladder called Pro-Cyan. It has cranberry extract in it.

  • thanks for that x

  • My sympathy is with you i was plagued by utis a few years ago, i used to have the full shabang, burning, backache, high temp, always going to loo, my daughter who is just 12 is suffering now for last 2 years and has now just been referred to see specialist in october. She has just taken a 3 day course of nitrofurotoin but just rang docs for more. I drink cranberry juice 300ml daily as it produces a slime on the bladder so infections dont cling but if there is a problem it wont work. Also no leaning forward on the toilet, always sit back to empty bladder properly.oh they are so horrible.xx😠

  • yes i have to alter mypostiona lot andstill itdoesnt drain, i reckon i will have to have either a bladder oo or thi sproplapse done and thatis if they even consider it today with cutbacks.. and why are there so many water infections...

  • A lady at my work place is on a small amount of antibiotics a day because like you ut was ruining her life completley. They found she had what they called a boggy bladder which was causing the infections. She had various investigations but nothing then had a mri scan then found the concern. Nothing they can do just antibiotics- not great taking them but she has been like a new woman, she had to be on a full strength dose to clear the infection first then a halfer dose then a smaller one for life, if taking them for always is what it takes then it will stop you from being

  • I have interstitial cystitis, a nurse told me a good way to empty the bladder is to rock back and forth on the toilet, it's supposed to get any residual urine out of the bladder. I had just had a bladder stretch under general anaesthetic and had a mobile scan on my bladder to make sure I could empty it. I was threatened with another night in hospital if I didn't empty. So I did the rocking back and forth, had another mobile scan on my bladder and it was sufficiently empty to be discharged.

  • Yes good info there, i think when we are desperate we will try anything even if its standing on our heads. I feel sorry for bluepetals. My 12vyear old just takes it on the chin but she has no burning with hers, my sister had her bladder stretched abd is ok now.x

  • Happy to share my experience. I feel desperately sorry for your daughter, it's a lot to cope with.

    My bladder had become very thickened with scar tissue, I was almost at the point where oral meds were no longer helping. The pain I had was like labour pain off the scale plus peeing every 10 minutes day and night. I had my bladder stretched and I must say it worked wonders! So pleased for your sister.

    Hydroxyzine @ 3x 25 mg tabs at night helps me with interstitial cystitis. For bacterial cystitis I recommended my daughter drink kefir daily. She has been free of bacterial cystitis for 4 months now. Worth a try. X

  • I know this wasnt my post but thankyou for your info. I have actually never heard of kefir? I will research, whenevervi had a uti it did not always bacteria but still had to be treated with antibiotics as it was unbearable.glad you are much improved now,i know my sister was so relieved to have her bladder op.

  • Kefir is a fermented milk product, it tastes like a slightly fizzy plain yoghurt drink. It's full of good bacteria for your gut but also for vagina, and guessing urethra. I buy mine in Tesco in the Polish section.

    If you follow all my info on the Long post to petals it's good for Ic and bacterial cystitis. I have lots of experience with bladder problems and this is what has worked for me.

  • Right im going to get some kefir it may help my daughter.thankyou.

  • I really hope it does help her. Also change your diet to calm your bladders, I drink only Evian and Redbush tea, don't drink anything carbonated, much too acidic. Give up coffee and normal tea, Redbush tea has no acid or caffeine. Don't eat spicy, citrus, berries, also asparagus and occasionally spinach has given me bladder pain. You want to eat a very bland diet and see if it helps calm your bladders. Forgot, no alcohol too, do this for at least 3 months to see if it helps. It's helped me a lot, and just a way of life now. I would stop the cranberry juice. I used to drink it, worst thing I could have done, so acidic and made my Ic so much worse. I don't think there is thst much medical evidence that it helps bacterial cystitis. Better off with lots of Evian. It's made a huge difference to my daughter too. X

  • I havent had a uti in 2 years i think mine was hormone relate(, touch wood) but kizzie my daughter gets them every 2 to 3 months, i dont allow fizzy drinks or pure juices like orange etc has this does trigger a reaction in her. She has the odd spicy curry tika masala from the indian. Stopped her doing swimming with school as was told utis can thrive in swimming pools.

    She sees specialist soon and a ultrasound. I am always stuck at doc and hospitals what wirh me being hyper now.xx

  • rmichelle interesting what hormones? i wondered this too.sorry for daughter- its a bloody epidemic!

  • Hiya bluepetals i am 47 now but when i hit 42 i was plagued by the bloidy things and i was going through peri meno and i would have one nearly every month😠 after my period, my doctor put it down to changing hormone levels and she said that the walls of vagina become thinner as you hit your late thirties and forties and your more prone to infection. At the time she ordered a fsh test for hormone levels in the bloods, also at the time i was on the pill and didnt think it naybe that aswell but i think it wasc3vyears later i came of the pill and didnt suffer again. Think about your hormonevlevels it can playva big part aswell.

  • I would absolutely stop anything spicy. My IC was so bad one strawberry would leave me housebound and in terrible pain for 5 to 7 days. By being really careful what I can eat and drink my bladder is calmer and I can even eat a red apple now without pain. Look up the IC diet you'll find some useful tips, that helps bacterial cystitis too. Bladders have to heal after a UTI so you want to keep calming food and plenty of water. It sounds really boring I know but if it cuts down infection/ inflammation it's worth it. Your daughter's bladder is obviously very sensitive if she reacts to fruit juice. Can you ask for a cystoscopy? Really a knowledgeable urologist needs to look at her bladder wall. A scan will only pick up limited information. When I had a scan luckily done by a professor, he picked up that my bladder wall is abnormally thickened which it does in IC as it gets scarred with all the cracking. I suppose they'll look for any stones and other abnormalities, but really until she has a cystoscopy and biopsies it will only tell part of her story. Does your daughter shower? It's much safer than baths with bladder problems, esp infections. I

    I hope the kefir helps her. X

  • Yes thankyou i will cut out the spicy curry as it wont help. She does take showers and hasnt had a bath since having water infections. I dont think school helps as they dont always alliw lots ofvwater and dont always alliwcregular toilet breaks.

  • Have you written to school that she has a medical problem and needs more water? I know children that are allowed water on their desk/table, after their parents have done this.

  • teachers and their bloody RULES like little hitlers- its health for heavens sake i remeber being at school and teachers refused to let kids have a wee- its disgusting!

  • In primary i told them she would need to go to the toilet and be able to drink whichbwas accepted as i didvplay merry hell. You are right schools ate playing with their health, can you imagine in a workplace that happening being told you cant go for a wee, its against human rights.

  • No i havent but i will now to excuse her to go toilet and have water, you have been a wealth of knowledge considering this was not my post.😊

  • we a re here to help each other michelle, no matter who's post

  • So glad you've found this useful. Feel free to private message if you need to chat. Xx

  • well personally helcaster i myself would write on here on the main as all the info has been so helpful to everyone

  • Yes kids don't drink much in the day as they are afraid of going to he loo. It's embarrassing for some to put up their hands when everyone else is ok. My daughter always kept an eye out of kids who were going to the loo to check for diabetes.

    Think she asked parents to check and several kids did have diabetes whilst she was teaching.

  • Yes i agree or teachers dont let them go but yoyr daughter sounds very fair but my 12yrndaughter has never been tested for diabetes i think the hospital may do that when she goes to see specialist.x

  • I also can recommend D Mannose. It is brilliant stuff for uti's.

  • I have had this problem for over 20 years and constantly on low dose . antibiotics. Ruined my health in many ways. Until the ugly hypothyroid reared its head I thought it couldn't get much worse. However I haven't heard of the black seed oil. Is it good for uti?

  • i thinki left a linksomewhere for a read

  • link is above

  • Hi bluepetals2. I've been suffering too! I'm post-menopausal & Hypothyroidic so the combination of no oestrogen & no natural Thyroxine has knackered my immune system. Apparently oestrogen receptors control body temperature! Anyway, the first thing that I did was see a Gyne-urologist. He did a bladder scan both before I peed & then after I peed & identified insufficient bladder voiding/emptying but that was a one off & he suggested making sure I doublevoided, I.e initial pee then wait & push again to squeeze last few drops out. I also had a cystoscopy done just to rule out interstitial cystitis. That was clear ! The chap was lovely & checking on exactly which type of bug was present in the sample & which drug/antibiotic it would be sensitive to- in my case it was Co-Amoxiclav or Augmentin, I got his agreement to have a 2 week course of the highest possible dose 3x a day to clear the acute infection . It's vital you don't pump the wrong antibiotic into yourself. The Gyne-urologist was still concerned that I was symptomatic so I was sent off to an Endocrinologist (private) marvellous chap & also to a Gyne for a proper pelvic scan /ultrasound & CT scan to rule out any structural obstructions. Again all clear. It was the Endocrinologist who made the recommendation to take Viramin D & B12 supplements adjust levothyroxine appropriately & start on HRT which I had wanted to avoid as I wanted to go through the menopause naturally but as he pointed out I was menopausal already so went onto Evorel Conti patches 2x a week & also Vagifem vaginal pessaries. 2 x a week. Been on HRT for nearly 3 months now I've also tried an external vulval moisturiser called Hyalofemme ( there are others such as Vagisil or Replens) in the last week or so & my symptoms have improved greatly. I still get the odd twinge but I am putting that down to vaginal atrophy due to my age which was confirmed by the Gyne. I'm not waking up as often to go the loo st night & I can tolerate days out. The Endocrinologist is also a general medicine guy & he was really good . Spent 1 and a half hours with me. Apparently there is a condition called Genito-urinary syndrome of the Menopause or GUS. It's very common & most women of a certain age suffer in silence. GUS can hit younger women or perimenopausal women too. I am still on a low nightly dose of co-amoxiclav for a further month & am hoping that after that month I will be free of the antibiotic. I have also cut out all alcohol & reduced my caffeine intake. Not that I was much of a drinker of either in the first place. Good luck & try to get yourself thoroughly tested & checked out. It's truly a miserable condition to live with.

  • glad you saw a decent endo and switche dontoo i aske dfor hrt NO1 outofhours doctor said i should have it- she was a locum and good but no one wantsto give it, its ok to suffer tho--- i shall gee up my gyno appoinment

  • Hi Camomile- great information from lots of people on this site - before my prolapse op I was told I had vaginal atrophy and this was why I was having itching, burning etc - prescribed Vagifem which eased things a bit but came back once the Vagifem stopped - gynaecologist told me it only works for a while. I'm 67 years old and I feel doctors think this is just something we have to deal with and not a major problem. Anyone who has this attitude definitely hasn't suffered really bad infections which can debilitate your life so much.

  • Did you try D Mannose? At least it won't stop your gut bacteria from functioning like anti biotics do. Probiotic necessary with antibiotics. I'd try the antibiotics and see how you go.

  • Bluepettals2, has you urine been sent to the lab and a bacteria identified? This is very important to match the antibiotic to the bacteria. If no bacteria is showing in conventional lab tests then you may have interstitial cystitis (IC) this is an inflammatory disease of the bladder. I have this so know there are a lot of things you can do to help yourself. My daughter has just been diagnosed with IC, but she also gets bacterial cystitis for a long time now, which I think has triggered IC. She had a lot of damage to her bladder wall seen during a cystoscopy.

    If you have bacterial cystitis, start increasing the good bacteria in your body. My daughter now drinks Kefir daily, she buys it from the Polish section in Tesco. It is a fermented milk product, full of good bacteria. Since I recommended this to her she hasn't had another bacterial bladder infection.

    I'm sure you know all the stuff about wiping front to back when you've opened your bowels, wearing cotton knickers, only breathable clothes so the genital area keeps dry and cool. If you wear pyjamas, change to nighties, in the early evening put your nightie on so lots of air can get to this area. Avoid hot baths and don't linger too long in them, showers are better. Don't use any harsh soaps, or anything scented, I use E45 Wash, it's a godsend. Also if you do bathe, make sure you put bleach regularly in the plughole and rinse out well. Fecal matter can get in your plugholes, and then contaminate the bath water, if you have a shower only use this to wash. I haven't had a bath since 2003, the last time I used a bath was in a hotel and I had the worst bacterial infection ever, on top of IC it's unbearably painful. I would never take that risk again.

    If you eventually get a cystoscopy, and I would insist on this, it's putting a tiny camera by catheter to look at your bladder wall, any signs of pinpoint haemorrhages, inflammation, blisters should help clinch a diagnosis, biopsies can also be taken. Often when the bladder is stretched the lining cracks and bleeds in IC. The results of the biopsies can indicate an abnormal amount of mast cells, this again can indicate IC. I have had this procedure 3 times now, plus a bladder stretch and it's usually done under general anaesthetic.

    What you can do now is give up tea, coffee, and alcohol, and only drink plain water. 3 litres to keep yourself flushed out, avoid anything with vinegar, citrus, berries, spices all these things can irritate the bladder. So can cranberry juice, if you drink this with IC, apart from causing further pain it will increase the damage to your bladder wall as it's very acidic. I made this mistake.

    If you have sex, wash and pee first, including your partner, pee after and wash with cold water to take down any inflammation. Drink a pint of water to flush out any bacteria that may have entered your bladder.

    I hope all this helps, the IC diet can also help people with bacterial infections, the idea is to calm down your bladder. If it's very painful to pee, pee in warm water in the shower. I have 2 bidets in my house, I couldn't live without them!

  • hi yes i have kept that, yes the wipe back to front and the showers, i had a urethra stretch as that was small, pee been sent to lab comes back abnormal and sensitive to all the antibi's and that is that! big deal. i have been fobbed off i think.

  • Hi bluepettals, it's so difficult getting a good urologist. You can look up yours and see what his special interests or areas of expertise, and if you read prostate or other man problems, he/she probably isn't the urologist for you.

    My daughter had her urethra stretched I think because he didn't know what else to do. After nearly 3 years of my daughter being messed about I went with her and it was so obvious that this urologist knew nothing about painful bladder syndrome or her recurring bacterial infections. When I insisted she had a cystoscopy they found blisters on her bladder wall. Then I had to take in copied literature to tell him how to treat it, his face was a picture, he obviously had no idea! She's now on the same drug as me and doing much better.

    Have you had a cystoscopy to look at your bladder wall?

    Give drinking the kefir a go, my daughter has been clear of bacterial cystitis now for 4 months.

  • I don't think conventional Drs have much of an answer to very long term utis. Have read a book called the Calm Bladder by Tim Whittlestone based in Bristol. He seems to have some realistic suggestions and I would like to consult with him when I can afford it

  • Yes The Calm Bladder by Tim Whittlestone is a really good easy read. The suggestion of drinking diluted fresh lemon juice does seem to work when an acute episode comes on. It's available to order on Amazon. Cranberry has never worked with me but I also swear by Kefir. You can get it in bottles in the milk section in Sainsbury's too. It helps with my irritable bowel syndrome. Imipramine a low dose antidepressant also has worked for some people to calm an irritable Bladder. Any decent Gyne will see HRT as something worth trying for 6 months. I am trialling it & on about 2.5 months in it seems to be helping. Keep persisting. Which area do you live in if you pm me I can let you have the names of the Gyne-urologist & Gyne & Endocrinologist.

  • Hi blue petals - as you have a partial prolapse may be there is pressure around the urethra

    especially at certain times of the month. My daughter had a spate of infections -she is hypo

    but has cysts on the ovaries. They put it down to a kidney infection and she was given

    ciprofloxacillin, antibiotic a 5 day curse - it worked well. That was a year ago.

    She was told she might have interstitial cystitis. Another lady wrote in on this site to say that she only uses Evian water. She has had no problems since then with the cystitis.

    Avoiding yeast, and sugar, may cut down on infections. If you haven't had a diabetes test

    may be you should do. I always filter my tap water, as chlorine is an irritant. Sometimes it takes several filters for the taste to be perfect. Water distillers are recommended for toxins in water

    such as fluoride and chlorine. I tried masses of waters including those from Tescos and Asda

    but they are only tap water being recycled - there is no such thing as Chase sping water!

    I think Volvic is better than Evian - Evian makes my mouth dry. The best water is Ty Nant

    it is the best water I have tasted but you can only get in from Waitrose.

    They do free diabetes tests in some branches of LLoyds - if you don't want to go to the doctor.

    Are you re tested after a course of antibiotics?

  • i will get a diabete s test i have pcos as well and uretha small

  • Just as well - it's a pain having to cut out cakes biscuits and high fruit sugar

    drinks and soft drinks which say they have no added sugar, but the sweeteners used can transform to glucose in the liver. I have to watch intake of potatoes

    rice, pasta peas as high carb vegs can put my blood sugar up - I love

    roast parsnips - but they are high in sugar. Avocado is ok - and all the watery vegs like cabbage, runner beans, spinach and broccoli are fine.

    Apparently meat also converts to glucose in the liver especially the red meats

    stewing steak mince beef lamb - but they are high in b vitamins so I don't worry

    about that as we have meat once a week. Bacon is a red meat - so are

    pork sausages - but don't worry about these as you can vary your diet.

    Are you veggie? Take care.

  • why evian water- isnt any botttled water ok?

  • i want to keep this thread in my files how do i do it

  • My daughter recommended the books by Angela Kilmartin. This is from Amazon's Angela Kilmartin page.

    "Angela Kilmartin's life has been dedicated to research and writing on cystitis, candida and mercury poisoning. From seven years of terrible pain and despair at repeat cystitis every two weeks she got herself better from simple daily self help at no cost.Her opera career and sex life were lost to this repeat terror but in later years church ensemble and solo work eased the loss. She still sings and writes."

    It worked for us. Give it a try - you've nothing to lose. I bought my copy 2nd hand for next to nothing except postage, but Kindle editions might be useful too.

  • Goldenrod tea is a natural tea which helps keep bladder clean,you can. Get it from online or any good natural food shop.

  • wow thanks for that susiebow

  • Had long months of UTIs and antibiotics ...microbiologist suggested methenamine anti bacterial treatment...fewer side effects too...gradually it began to improve UTI and have now been able to stop them...still take cranberry extract and probiotics...sorry about note form...exhausted!....hope this helps.




    i will post this on anothe thread as it may help everyone

  • Might seem a bit too simple but have you tried drinking bi carbonate of soda? It neutralizes any acidity in the body especially the bladder. Iv found that the best cure for cystitis.

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