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heathwhit

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Posts: 189
Reply with quote  #1 
God i feel bad today!!awful ache in my lady bits thro, to my anus.Difficulty passing water hurts so much trying to walk about just feel as though i havebeen kicked .I sometimes wonder how i hsve managed feeling like this since my cystoscopy, if i had a dog i would have the poor little soul put to sleep.
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H.M Whitworth
doloroso

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Reply with quote  #2 
Morning!

I sympathise with you! I had 2 cystoscopies a few years back. I was fine after both in about 24-48 hours.

How long is it since you had your cystoscopy? Are you taking any pain killers? Are you drinking enough water? That is so important. Try some camomile tea which is extremely soothing. Vanilla ice cream! Are you avoiding acidic foods? Alcohol. Caffeine and the like? Have you spoken to your Consultant?

Keep posting as you will receive lots of advice here.

Sending positive vibes.
x
heathwhit

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Reply with quote  #3 
Hello thanks for your reply, yes i had a cystoscopy 17 years ago snd i was fine but this time is a completetely different scenario for me after having e coli nearly two years ago it teally flared my ic and that is why they suggested another one.Because all my symptons were vuval no bladder pain at all i refused it twice, and then just because things were easing i decided to have it , how stupid is that.Anyway i have had nearly 3 months of hell and regret every minute of it.I now have bladder discomfort right up to my naval which is worse in bed, want to wee all the time with no relief plus really bad vuval pain which comes and goes, also keep losing motion in my back passage, all horrible symptons i have never had before I am having a complete breakdown eith all this snd cannot function to fo a thing, completely housebound, don"t even
want to talk to anyone.See the urologist on 12 October .I am certain i have an on going infection private sample say yes nhs say no i am confused upset and don't know if i can carry on much longer in this state.Regards Heather.


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H.M Whitworth
doloroso

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Reply with quote  #4 
Do you have a hard copy of the Private UTI results which show you have/had infection? If not do obtain one. When you have your next appt on 12 October with the Urologist take the copy of the Urine Test results with you.

I have NO medical background however, upon reading that you have problems "losing motion in my back passage", may I ask if this is each time you go for a pee? I ask, as our daughter in law recently visited her GP as she has this problem (no UTI though). She was diagnosed with something or other and is having to cut out various foods in her diet. Intolerant to something or other. Cannot remember which. Maybe, I say, MAYBE Heather, this back passage problem is not connected to your initial problem? Just a thought. Worth asking I'd say. You could be intolerant to some dairy products perhaps??

Do take care Heather. You will probably receive some responses from the Moderators who will no doubt advise you further. Their knowledge is vast on the subject.

Keep posting.
xxxx
sueworld2003

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Posts: 1,154
Reply with quote  #5 
Heather you say you've had a coil fitted. Has it been removed because they are a known irritant to many people suffering from IC.

Also have you tried researching a diet plan yet?
Moderatorsusan

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Reply with quote  #6 
Golly this is a pretty pickle that you are going round and round with isn't it. You need a plan not just posting up here and lots have given you good advice:

So to summarise

1. Whats happened has happened - you cannot keep going round in circles, that simply will not move you forward. You now need to front up to the medical profession and sort this out. Get family members to come with you and don't be fobbed off, stick to your guns. Tell them to listen to your symptoms not just what the bloody cystoscopy test results say - there is way too much reliance on invasive test results. One thing we don't have is guidelines for chronic infections and because of this too much emphasis is placed on outdated test results and invasive procedures.

2. As Doloroso has suggested, get a copy of your urine test result and take it with you to your appointment the week after next. I am not sure if the infection diagnosis was post op or pre op but the specialist needs to sort out some form of ongoing antibiotic treatment for you to get this cleared.

If he prevaricates and the infection was diagnosed pre-op then he should never have carried out a procedure whilst you had an infection until that had been treated appropriately and tell him that. As far as you are concerned he is now responsible for completely sorting out this infection whether pre or post infection until your symptoms resolve and you will expect managed treatment for however long it takes.

I'd also show him this and ask him to do some bedside reading.

http://www.chronicutiinfo.com/intro-key-info/a-picture-guide-to-the-evolution-of-a-chronic-uti/

They also need to manage the pain issues but without prescribing anything with codeine in it which will cause more constipation putting pressure on your already inflamed bowels. If needs be get referred to the pain management clinic whilst at your urologist appointment. Again this should be properly managed as you were given no support whatsoever after your procedure and your poor GP simply doesn't have a clue what to do.

3. The bowels are clearly really inflamed and unfortunately following the cystocopy the combo of your inflamed bladder and pelvic floor muscles already in spasm after years of pelvic pain has caused everything to lock up. Every time you poo essentially it will trigger off the nerves in the bladder and pelvic floor because of the straining. So next stop is the bowels. Time for some dietary changes to get things moving a bit more and stop you straining. Lots more fibre = less straining. So thats brown rice, oats, more leafy green veg, potatoes with skins on them, wholemeal bread etc. Not white bread, cakes, pastries, pies etc. Don't care what hubby wants, you need to sort your poor beleaguered bowels out and you may have to cook two separate meals to do this but this will help.

Try going diary and wheat free for a bit to see if that helps. The problem is if the gut is really inflamed it will react to everything so trying no diary or wheat for a bit may help and calm things down. If the gut is inflamed it can also affect other parts of the body such as the bladder due to leaking of the gut into the bloodstream which causes an inflammatory response.

One really simply way to change straining is to adopt the squatty potty position. This essentially means putting your feet up on a low stool so that your pelvis tilts downwards and you lean forward.. This is the natural way we should be passing stools rather than the way that everyone currently does. Puts far less strain on everything. Any pelvic physiotherapist will tell you this and it works. Sure you look daft but better that than more pressure on the pelvic floor. You do not have to buy a squatty potty, I just use my bin and it works.

http://www.squattypotty.co.uk

4. Vulval pain. As mentioned before you've had this ongoing for many years so your GP should be referring you to a vulval dermatologist to check the condition of skin, signs of vulval conditions etc. If it is something like vulvadynia, they should be able to help you manage this and also suggest simply lifestyle changes.

At the moment, a good barrier lotion such as Hydromol will place a barrier on the skin to stop urine aggravating the skin. It sounds like you react to anything with additives in it and sadly things like hormonal creams do have these (in the UK we don't have compounding pharmacies so its a one stop shop approach to treating rather than tailored medication to the individual that a compounding pharmacy can offer). A good barrier needs to be built up first to maintain the health of the skin and then possible hormonal treatments can be considered but not until the skin situation has improved.

Some of the nerve pain can be down to the infection as infected tissue in the bladder causes pain to radiate to the vagina, vulva as well as the stomach, lower back and thighs.

5. Finally ring the BHUK office and speak to someone for a chat, FInd out if there is a local support group in your area you can join and chat to people about this. Talk the nurse who is there on a Wednesday she is so so supportive and friendly. You are clearly struggling and need the support of people who understand around you but not just online - also face to face. BHUK can help with this and put you in touch with people in your area who are struggling too. Who knows you can start up your own support group. Above all tell your family, don't bottle it up and struggle on alone. They may be scared about whats happening but rather everyone fronts up than hides it causing more grief and makes a group plan to get you the help and support you need.


heathwhit

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Posts: 189
Reply with quote  #7 
Thanks for your replies it certainly is a pretty pickle as you say No sueworld i never had the coil fitted..What is so upsetting is even my own GP would not let me have abs even though i showed him the private test results because the nhs results were clear, even tried another GP same answer.They both said abs could make things worse, i am getting really frightened now , i have never felt like this before, i have always coped with the odd flare ups.I have not been one for suffering from uti,s not since i was quite young it was just unfortunate i picked up e coli tummy bug in Spain nearly two years ago that went into my bladder and never got through a full course a of abs i react badly to them.That of course flared my bladder and never been right since.i did private test then it came back that i still had e coli nhs said clear.I think they are worried that i react to absthen i got a kidney infection so there must have been some infection there msnaged a week on cipro but that didn't properly clear my bladder problem.Had two more private tests came back with two infections same carry on nhs clear.Even the urinary nurse at the hospital said she couldn't deal with private tests.Maybe one day this nightmare will be over for me and my poor husband who gets do upset too seeing me onthis state, thanks for all your help and support We used to have a group in York run by chris leach but i don't think there is one now.love to everybody who is suffering today.Heather.

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H.M Whitworth
doloroso

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Posts: 73
Reply with quote  #8 
Susan moderator,
That cronicutiinfo link has so enlightened me!!! Have learned so much more. My poor bladder was chronically inflamed due to ongoing UTIs and not being listened to by my Surgery GPs until I literally screamed down the phone to one of them and DEMANDED a long overdue referral!!
............
Heather. DO take the advice given by moderator Susan PLEASE!!!!
heathwhit

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Posts: 189
Reply with quote  #9 
Yes i certainljy will we have printed it off will take it with us; it's about time the urology proffesion started waking up .
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H.M Whitworth
Babot

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Posts: 5
Reply with quote  #10 
The link that ModeratorSusan provided on chronic infection was the best explanation I have read on chronic UTIs and the visuals made it very clear.  I received a diagnosis of Follicular Cystitis post a Cystoscopy and biopsy last July.  My understanding is that Follicular Cystitis is that as a result of so many infections, it has gone into the bladder wall.  I have been treated in a London hospital since then and have been self catheterising since then.  I had a tenacious infection post some Uro-dynamic testing that took a whole variety of anti-biotics to get rid of which allowed me to have the Cystoscopy.  Since then I have been on a preventative daily dose of anti-biotics plus Hiprex.  I have had to change antibiotics every now and then as I have developed infections and needed to change to a more targeted one.  I was back at the outpatients clinic in June.  I had decided that the PTNS treatment proposed in earlier appointment was not for me as not relevant to my symptoms.  I was simply advised to continue for another 6 months with antibiotics.  That will be close to 18 months in total by the time of my next appointment. 

If for any reason I forget to take my antibiotic, almost immediately, my urine starts to smell very strongly which for me has always been an infection indicator. 

I hate taking anti-biotics for such a lengthy period and still do not understand how the Follicular Cystitis condition gets treated/cured.  How will I know it is cured?  Another cystoscopy/biopsy?  What if it is left - where could it lead to? 

I have found little information on Follicular Cystitis and feel frustrated and disappointed by the treatment I get in out patients.  Each time I see a different Dr in the clinic who asks the same questions about my history - so many visits now surely it is all on file.  Afterwards they send a letter to my GP summarising again my history (each time they get one or two details wrong).  But I don't seem any closer.  It has been quite a challenge to adapt to catheterising 3 times a day (uro-dynamic tests showed I retained large amounts) but I am used to it now.  But after reading the link I am wondering is the retention causing the infections, or are the infections causing the retention.

I have received the information on bio-film infections.  Am contemplating trying to see the London prof privately as I seem to be getting nowhere with the Urology team I am with now.

Any comments/information gratefully received.




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Babot
heathwhit

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Posts: 189
Reply with quote  #11 
Hi , how would i know if i had folliculsr cystitis? How were you diagnosed with it? I have had a cystoscopy and biopsy done which has left me with worse symptons than before mainly burning after urinating and not getting relief.I had not had a n infection since my 40s now in my 70s unfortunately picked up an e coli tummy bug in spain two years ago which transfered to my bladder.I was diagnosed with ic a long time ago but just had the occasional flare.I still feel i have some sort of infection results always negative.I just cannot toletate abs if i had to take as many as you i am sure i would be dead.Just sent in a private test but ad myhusband says what is the point if i can t take the abs.Get really bad symptons in my lady bits especially after a bowel movement.See the urologist next week i amnot expecting to get any answers really because i don't want instills if i have an infection.I undetstood ic felt like an infection i have never been so confused with anything in my life the way i am with all this.



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H.M Whitworth
Babot

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Reply with quote  #12 
Heathwhit the follicular cystitis was diagnosed as a result of the biopsy.  When they did the cystoscopy they could see that the bladder wall was inflamed.  They had to confirm with the biopsy that this was not cancer.
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