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mizzbijou

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Posts: 59
Reply with quote  #61 
Hi, my name is Karen and I'm 31. I started having cystitis attacks when I found the one true love of my life (wouldn't it figure). I have had about 10 or twelve in the last year. Antibiotics always clear up the symptoms by the end of the first day, so it would appear it's not IC (even tho sometimes my urine shows bacteria - often staph - and sometimes not). My boyfriend is, well, large. Sorry if that's a bit much info, but I was hoping to find out if anyone else found this to be a factor. Sex and alcohol may be factors (even tho I wash/pee before and after sex, and I drink lots of water with Vit C and cranberry, and don't dehydrate myself), but it's all so inconsistent that I can't pin anything down as a definitive culprit. Anyway, I've been referred to a uro-gynecologist - I hope I may get some clarity there. My mother had a kinked urethra - which was straightened out with a catheter never to trouble her again - I wonder if I do too.
I also have the constant down-there-awareness, if I feel anything at all I get all panicky and think "Oh please god no, No, NOT AGAIN!" I feel helpless and depressed and angry when  I'm having an attack - I don't want to think I have a lifetime of this to look forward to. (I am on ab's for an attack as I type this)
I do not have health insurance at the moment, but I have found a wonderful women's clinic to help me deal with this - bless them, they are fabulous women.And I thank the powers that be for sending me my beau - he is sweet, supportive, understanding, and comforting.
And I'm so happy to have found this place - I never knew there were so many dealing with this! I hope we can rally for a cure, or at least more research.
Thanks for listening, and best of luck to you all!

DawnCOB

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Posts: 4,496
Reply with quote  #62 

Unread post Today at 01:22 PM  Reply


 

Hello there,

 

I'm Susan, age 59. I've been prone to occasional BC ever since I started to be sexually active. In the past the majority of infections were dealt with very effectively by Septrin (co-trimoxazole), but the NHS then switched to trimethoprim as a first line treatment, which I find vastly inferior.

 

My attacks of BC have increased significantly over the last few years and I'm sure this is mostly to do with my age and hormonal status. I can no longer have sex without contracting an infection, usually between 12 - 36 hours after intercourse. I do my utmost to treat these with non-prescription measures but I frequently have to resort to antibiotics. Trimethoprim doesn't seem to help much. If I'm lucky it will reduce the infection to a point where I can treat it by other means, but not always. Cephalexin seems to work well, but as soon as we have sex I become infected again. My husband is very understanding, but I'm extremely depressed by the fact that we can no longer be intimate without weeks of pain afterwards. We're always very attentive to hygiene and even use condoms, but it doesn't seem to help.

 

I've been prescribed estriol pessaries for vaginal (and probably urethral) atrophy, but I'm unable to use them as I have side efects of extreme muscle pain. I've also tried a herbal alternative, Phyto-Soya Gel, but any form of estrogen seems to produce aching muscles.

 

I find D-Mannose to be the most helpful of all the alternative treatments, but I need such high doses that it's not financially viable as a long term solution.

 

I'm aware my problems are minor compared to many women in this group - I sympathise with you all. I hope that in years to come these dreadful conditions and infections of the bladder will be better understood and more treatable.

 

Susan

 

Sonia

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Posts: 275
Reply with quote  #63 
Hello Susan

I see you have received replies about preventative ABs to your other post. As I don't have BC and so can't comment on that bit of your post, I just thought I would comment on the following:

Quote:
I've been prescribed estriol pessaries for vaginal (and probably urethral) atrophy, but I'm unable to use them as I have side efects of extreme muscle pain. I've also tried a herbal alternative, Phyto-Soya Gel, but any form of estrogen seems to produce aching muscles.
I got absolutely nowhere with the oestrogen pessaries - they did absolutely zilch. I seem to be sensitive to hormones in food: dairy produce and meat (before I avoided them) made my breasts so lumpy that I had to wear two bras 24/7, off limits to any handling and certainly no running for the bus! So I wasn't about to try HRT by mouth. Have you tried Replens (from Boots) - I have been using it for about a year now.  Astroglide was going to be my second choice but I didn't need it as Replens seems to work ok. Astroglide was highly recommended on a vulvodynia / vestibulitis forum.


Quote:

I find D-Mannose to be the most helpful of all the alternative treatments, but I need such high doses that it's not financially viable as a long term solution.

Tried this expensive stuff for 3 days and got kidney pain and it did nothing for the bladder ache, frequency, urgency, soreness of what turned out to be IC - and I had bought 2 packets!

Hope you solve your problems

Sonia

 


FranticFranny

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Posts: 3
Reply with quote  #64 

Thanks for your reply, Sonia.

 

My GP gave me Replens on prescription to try but I didn't find it very effective, unfortunately. However, I bought a preparation called Bio Fem Active Gel a few days ago and, so far, it seems brilliant. I'm keeping my fingers crossed.

 

It seems that D-Mannose works for some but not for others, and I actually find that it differs by source. But, in any case, I can't afford to keep up with the expense of buying it in the UK.

 

Best of luck,

 

Susan

kristy

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Posts: 3
Reply with quote  #65 
hey
My name is kristy and i am 19 years old, a nursing student in Invercargill, New Zealand. Anyway my mother (now) tells me that I have been suffering from BC since i was eight, but not so frequent(probably only a yearly or bi yearly basis), When I was 16 i had a bad case of pyelonephritis (when the inflammation spreads up the tubes and into the kidneys) which was extremely painful!! i was hospitalised for that, and with strong antibiotics it cleared up. However three months later it occured again but this time it was cystitis, trimithroprim cleared it up and i continued drinking water and cranberry juice daily, five months later it happened again, and so forth (the evil cycle reducing in frequency) now i am 19 the infections are occuring about every four weeks. I am extremely mindful of hygiene (being a nursing student) i use a special vaginal soap, carry special vaginal wipes for after i use the toilet and for before and after i have sex (just a note my problems starteed before i had sex). I have a horrible infection at the moment arrrg, spent yesterday arvo in the ED as i couldn't even urinate and when i walked it felt as if i had a rock in my urethra! they pumped me with genthromyecin and gave me a new prescription for nitrofucerin(i know i am a nursing student but am still strugglinh with spelling of meds) am so sick of this reaccurance that i am going to my GP next week and demanding that i get reffered to someone at the hospital, i want to find out why someone so hygienic and mindful (drinking cranberry juice daily, water daily, vitamins daily) keeps on getting this horrible infections which must i add stings like heck!!!!
anyway this group is awesome am so glad to find  people that know what pain i am going through.
Love Kris
Nichola

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Posts: 1
Reply with quote  #66 

Hi Everybody,

I cant believe after a lifetime of suffering i have found this forum!  I was having a soak in the bath tonight with a copy of woman magazine and there was an article about cystitis.  So here i am!

My name is Nichola i am 30 yrs old.  I am 10 weeks pregnant with my 3rd child and have beautiful identical twin girls who are 4.   I have suffered with cystitis all my life.  My mother can remember sitting me in the bath as a toddler because i would be screaming and wouldnt wee due to the pain.  I would say i get at least half a dozen bouts of it every year and that has been the way it is all my life.  I am constantly given courses of antibiotics from my GP, infact i dont have to see the doctor anymore, he prescribes over the phone and i bob in a wee sample to the surgery!! Im sure you are all familiar with the routine!  I always get bouts of thrush due to being on antibiotics and to be honest, always getting cysititis can really get me down. 

Last year my GP sent me to the urologist to try to get it sorted out once and for all.  This was following a particularly bad episode complete with peeing blood!  I had a cystoscopy and a urethral stretch.  OMG how that hurt afterwards!  But what a difference it has made to my life.  Something so simple can you believe!  when i went for my follow up appointment i could have kissed my consultant!  I do still suffer from recurrent cystitis but i have to say it hasnt been anywhere near as severe as any of the bouts i had in the past.  I can deal with it myself using the sachets you get over the counter, where previously they wouldnt work for me. 

Im just so excited that i have found people who i can talk to about this and will understand what its like.  I dont know about you but ive found that people who dont suffer with this just dont understand how debilitating it can sometimes be.

Bye for now
love and best wishes
Nic xx
wrknprgrss

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Posts: 3
Reply with quote  #67 
Hello, My name is Katie. I have had cronic bacterial cystitis since as long as I can remember. For a few years I was getting them every month . I had a cystoscopy a few years ago and they found a really bad infection that required extended use of antibiotics to clear it up.

Now I am faced with the drugs not working anymore. The last bladder infection I had took three courses of antibiotics to clear it up. This is getting expensive!!!

I was desperate for an alternative so I was looking on the internet and a few people said to eat lemon slices so I have been doing that for a few weeks and I have been right as rain so far but we will see.
Malone

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Posts: 1
Reply with quote  #68 
Hi,

My name is Serena and i am 30, i have suffered from BC for the last 8 years. I am so glad i have found this site as i have now realised that there are other people in the same position as me. I am suffering from a bout of BC at the moment, I thought that i had been cured (obviously not! ha ha) as i had not had an attack for the last ten months.  At one stage a couple of years ago i was getting it at least once a month. I seem to get it when i am at my most stressed out, my immune system gets low and i turn to sugary foods which encourages an attack. This most recent attack seems to be due to sex, but i have to admit that i get BC whether i am having sex or not. 

As i said i am soo glad i have found this site.

Bye for now
Serena x

calm

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Posts: 113
Reply with quote  #69 
I am 40 years old and one month ago diagnosed with painful bladder syndrome. I have had constant bladder pain for five months. I live in sheffield and to help me come to terms with this condition  I would like to make contact with anyone around my age in the Sheffield area.  Is there anyone out there?

Best wishes

S

__________________
Susan
DawnCOB

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Posts: 4,496
Reply with quote  #70 

Quote:
Originally Posted by calm
I am 40 years old and one month ago diagnosed with painful bladder syndrome. I have had constant bladder pain for five months. I live in sheffield and to help me come to terms with this condition  I would like to make contact with anyone around my age in the Sheffield area.  Is there anyone out there?

Best wishes

S


Hi

Welcome to the board .

I am sorry you have been in pain for 5 mths, hopefully we can help.


You may find it helpful to post on the Interstitial Cystitis Forum which is another name for Bladder Pain Syndrome http://www.websitetoolbox.com/tool/mb/cobf?forum=4039

COB has members all over the UK, if you would like to be put in touch with other members in your area please contact the office for further details
Tel 01908 569 169 info@cobfoundation.org

best wishes

Dawn

Claire2001

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Posts: 8
Reply with quote  #71 
Hi I'm Claire

I am 33 years old and up until 4 years ago I had only had one bout of cystitis in my life when I was in my early 20's.

I get it when I have sex, so I am prescribed Trimethoprim to take afterwards to ward it off.

I have had a Cystoscopy about 10 months ago and I was given a dilation which I think has now worn off as I have to push really hard to pee again.

I did go for 9 months symptom free last year and which was bliss and I live in hope of it happening again!

I do relish day's when I am symptom free but it rarely happens.

Myself and my boyfriend are currently trying to have a baby, which is really hard when you are scared to have sex.

Anyway, enough about me, I am really please to have found this board where I know people understand.

Claire
jomurray81

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Posts: 2
Reply with quote  #72 
Hi,

My name is Jo and I live and work in London.

I've suffered with bouts of cystitis ever since about the age of 19 when I met my (then) boyfriend - my first serious relationship (so pretty clear what my cystitis is linked to!). I probably have a serious attack about once every two or three months and get day-long, less horrible symptoms every now and then in between. Having read some of the other posts, it seems like I'm getting off quite lightly - although of course it doesn't feel like it when I'm in the middle of a nasty attack!

I have just come through a particularly nasty bout of cystitis. I had it for about four days and it was terrible - constant stinging pain (not just when I went to the loo), difficulty passing urine, feeling like my bladder wasn't emptying properly, my bladder felt swollen (I was also constipated - which didn't help. Not sure if that was linked? Anyone any ideas?). This didn't get any better over the course of the week so I went to my GP who (to my relief) prescribed me antibiotics immediately. I had had a bad experience in the past of a GP who refused to prescribe me anything until he (of course it was a man!) had sent off a urine test. This would've meant waiting days for the results and I was in agony. His response was "well, you've had it for a week so another week isn't much worse." My new doctor is much more understanding. I'm now under strict orders to come and see him immediately next time!

I've decided that I should now really get onto this condition and try to beat it. I'm sick of it coming back again and again. It makes everything such a trial - whenever I have an attack all I feel like doing is curling up in bed. Walking anywhere or doing anything is a painful and miserable experience. I'm going on holiday for a week at the end of July. I haven't been away properly for a couple of years and if it flares up, it'll be a total disaster.

I'm so glad I've found this site. Not only because I can see what other people have tried to prevent/ ease cystitis, but because it's somewhere I can talk freely about an often embarrassing condition. While my boyfriend is supportive, I feel he may soon get sick of me going on about my diseased lady-bits! I also don't feel I can talk to my mum - something which makes me very sad - my parents are very religious (i.e. believe in no sex before marriage) and, as for me this is a sexually-related condition, I don't feel I can talk to them.

Anyway, wow, I really have gone on more than I meant to! "Let it all out" and all that! I hope to chat to some of you soon.

For now, all the best, Jo xxx
urs101

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Posts: 58
Reply with quote  #73 
Hi everyone

I've been posting on the boards and been a member of COB for a couple of months now but have only cottoned onto the meet and greet thing today! (Doh!) So I figure better late than never.

My name is Urszula, I'm 24 and I live in Bristol. I have had bladder problems(nasty bacterial infections) since starting my current relationship- so it's definitely sex related. I have had a couple of bladder infections before (but only twice for about 7 years of having sex.) My current partner was tested positive for NSU and we were both treated for it but the infections continue. At my worst I have had a continuous infection for around 4 weeks and without antibiotics I have an infection every two weeks. In the beginning the antibiotics took away all pain/discomfort etc but I think now my bladder is just so battered from the infections I have constant pain (possibly post-infection inflammation or IC?!?!?)- a sore bladder and back, burny urethra, frequency, painful peeing, very painful sex (whenever we actually muster up the courage to do it knowing what will follow) and just feeling awfully tired and run down. I am currently on antibiotics but bladder symptoms persist (although thank god not as bad as during an infection) I am also on amitryptaline to help my general tiredness. I have found these boards so helpful when I've been despairing and have found lots of great hints and advice. Thanks everyone! May we all be better one day...
Dolly

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Posts: 4
Reply with quote  #74 
Hi my name's Jo or nickname is Dolly as my mates call me. I'm 28 yrs old.  In short I have been suffering with repeated cystitis attacks for 11 years.  

The first time I got cystitis I was 14, I didn't know what it was and it scared the life out of me, I thought I had some sort of disease and didn't tell anyone until it got completely unbearable and eventually told my mum who took me to the doctors and got me anti-biotics.

I then didn't get it again until I was 17, when I first started having sex.  I got it time and time again, anti-biotic after anti-biotic. My doctor was useless and horrible, he used to tell me I can't surely have it AGAIN and made me upset everytime I saw him and made me feel like a hypocondriact.

It wasn't until I was 20 and my doctor was off and I saw different one who couldn't believe how long I'd been suffereing with it, and suggested that this was not normal and I shouldn't have to live with it.  Then I went travelling for a year and a half and I found out more information by reading books from the libruary and whilst travelling I was in and out of hospitals with tests and in Australia in particular, they were fantasic and did ultra sounds, kidney blue dye tests, all sorts. But found nothing and they decided it was best for me to take an anti-biotic a day to prevent cystitis until I got home to england and could have further tests.

So before coming home I had become immune to 3 types of antibiotics and was in a right state.  I had more tests in england and finally the camera up the uthera to the bladder. But nothing abnormal was reported.  So the urologist told me I just had to live with it, I was just one of those unfortunate women!  Oh how I would like to see them try live with it!

I was then about 22yrs old. So no one was helpful and i was getting cystitis every 2 months at least.  Then I saw a homeopath, which at first didn't seem to be working and I was in so much pain but one day it finally kicked in, and it was great!  I think I took them for about a year?  Then I didn't get an attack for about 2 years, it was great. I thought I'd got rid of it completely.

But it came back  and although homeopath remedies have been very helpful and get rid of it quicker than anti-biotics (and are a much healthier option)  I still can't seem to stop it coming back at the moment.  If I take remedies all the time I think that it would prevent it but I am looking for a cure. Because I think it may be like antibiotics, maybe the body gets immune to the remedies.

I usually get it about 2 days after sex now. Throughout the years I have been on yeast free diets, sachets, uva ursi, and all sorts. I am now going to look into hynotherapy and maybe even acupunture and chinese medicines in the new year?  I am starting to take more supplements like garlic, vit c, chromium, echinaechea - all to try rebuild my immune system which is extremely low at the moment.

Any progress I will report back with in the site.

I think this site is great, wish i'd found it years ago, cos no one really understands what you're going through unless they've had it. 

Good luck to everyone battling with this evil infection! xxx

jewelsmistry

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Posts: 3
Reply with quote  #75 

Hi everyone,

My names Jewels...all i can say is thank god i have found you atlast...

I have had urinary tract infections for years since i was a little girl and as i am getting older they are getting worse and more frequent....

I am not sure exactly how to cope anymore...

When i was younger i used to have problems, then when i was in my teens it wasn't so bad...20's came and that was it i just got it constantly....but ever since being pregnant and having my son who is now nearly 4 i have them atleast 1 or 2 times in a month if not more.

I have been on all kinds of antibactrial perscriptions, and antibiotics, even ended up in a&e and hospital for 5 days with kidney infection, this is how bad its getting....Iv had scans and all kinds of tests done n they said nothing there, just could be to do with my monthly cycle and possibly sex....

I am now to the point where i can't stand it any longer this month i have had it 3 times had antibitotics but it just keeps coming back....

Hopefully you guys can help...or just chat when i am feeling low because of it....


Forgot to mention the fact that i don't drink any alchocol, no tea coffee, just basically water or cordial....i don't smoke, don't do any kinds of drugs, hardly ever have sex, but this could be the culprit maybe....i don't have baths only showers, and iv had enough...given up alot to try and sort it out, doctor even stated to drink 4 litres of water a day i try my best to drink atleast 3...but u just gotta go all day when u do.....oh n i dont use soap of any kind in that region, only aqaueous cream when washing....

Jewels xxxxxx

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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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