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Blueangel

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Posts: 148
Reply with quote  #1 
I saw my urologist recently and was offered instillations which I accepted.
Had the 1st one and sadly got an infection. I wasn't allowed to have anymore
and I don't see urologist again until the end of November. I am having no treatment
and am in constant pain in my lower stomach, also my urine is scalding me.

I have asked my GP if my urology appointment can be brought forward but she says not .
My urologist doesn't know what to do with me. Where do I go from here ?
I'm getting no treatment with nothing in the future going to be offered me.

Thanks.
Moderatorsusan

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Posts: 954
Reply with quote  #2 
I’m so sorry to read you are struggling - some pointers to help:

Try to relax
Take lots of deep breaths to avoid stress
Drink lots of water and soothing herbal teas such as camomile
A teaspoon of baking soda, bicarbonate of soda or potassium citrate in a glass of water 2-3 times a day can relieve pain by reducing the acidity of urine (please check with a GP if on a low sodium diet).
Azo Urinary Pain Relief can help (this can be purchased online if not in the USA where it is available over the counter)
An ice pack will numb and distract the nerves causing pain and provide relief. A hot water bottle can be placed on the abdomen or lower back
Over the counter pain relief will help with pain and fever
An antihistamine to calm the histamine release which will agitate the bladder nerve endings
If at all possible please rest
Plain plain diet

I would contact your GP tomorrow and see if he can prescribe something like amitryptaline to calm the nerve endings in your bladder. I’m not sure if you already take it but if so, try upping the dose under your GPS guidance.

I’d also contact the BHUK office and get details of other urologists either where you live or in a nearby city and get a second opinion. You are entitled to this and it sounds like your current specialist clearly doesn’t know what to do next. If you do get another opinion take all results and letters with you so you don’t need to have any further invasive tests. Once is more than enough. Additionally if you have been left with an infection after your instill and that hasn’t been properly treated then your specialist needs to sort that with a treatment plan. If needs be pay for a private urine test if NHS is coming back negative and take this to your Urology appointment to show him the results. The test will show antibiotic options and you should be put on one of these to clear things.

If the urine is scalding the vulval tissue purchase a barrier cream such as Hydromol and apply this to the vulva. It will prevent burning and slowly heal the tissues. I assume you have tried HRT to stop vaginal and urethral atrophy. If not seek a referral from your Gp to a urogynaecologist for help. Again BHUK should be able to recommend some near to where you live and the website Menopause Matters has a listing.

Don’t struggle alone - make a plan and seek some answers
Blueangel

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Posts: 148
Reply with quote  #3 
Hi Susan
Thanks for your advice. I do drink almost 2 ltrs water daily plus 2/3 cups of camomile tea.
I always use potassium citrate in water frequently plus have an ice pack on the go a lot
of the time.

I have to take Oramorph because the pain is so bad and constant, not good for my bowels though ! I do try to help myself a lot but have been badly let down by the medical profession not working with me.

I have tried Atarax and HRT but sadly couldn't cope with the side effects of them.
My diet has been very plain and bland for years , I have lost weight due to not being able to eat much. I will see my GP about the infection as it was never treated.
I will contact BHUK for advice on seeking a second opinion and get some Hydromol.

Many thanks.
chrismm

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Posts: 35
Reply with quote  #4 
Hi Blue Angel

So sorry that you are not good and are at a standstill regarding any treatment.

Regarding the instils.  I cannot understand that you have been refused any further instils after just one.  There are many posts on here by people who have instils and unfortunately also get infection after them - it seems to be one of the drawbacks with instils but it surely should not mean that you will get infection every time.  In fact if they are done correctly and you take care with hygiene afterwards then they should not happen at all.  Once the infection has cleared there may be no reason why you should not continue (except if there was some other reason that they should be discontinued).

An alternative to instils is to take Pentosan Polysulphate Sodium (Elmiron).  It is a medication which does the same thing as instils i.e. it helps to protect the GAG layer of the bladder and so takes away the pain and frequency which the damaged GAG layer causes.  You could be told that Elmiron is too expensive as it is a NamedPatient Drug - not licenced in this country and has to be obtained from overseas.  However it can be obtained under many other names as long as it is Pentosan Polysulphate Sodium.  I have it prescribed under the NHS and the hospital pharmacy sources the cheapest option which at the moment for me is Fibrase (sourced from Italy).  I do not pay for it.

I have been taking Fibrase now for 5 years and was taking Elmiron for 15 years before that and have no symptoms of IC whatsoever.  My symptoms  before I was diagnosed were frequency, burning and vulval soreness and like you my life was practically unbearable. 

If you would like to continue with instils perhaps you could get the advice of another consultant (especially as the one you have seen says that he does not know what to do with you.) Try to find a urologist who is used to treating IC.

There are so many possible treatments to relieve the symptoms of IC.  I think it is a matter of pushing the medical profession until you finally find a treatment which helps you.

Try not to feel you are at a standstill.  Doing nothing will not make you better.  It would really be a good idea to contact the BHUK office as they are so knowledgeable and helpful.

Take care and stay positive.
All good wishes














__________________
Chris
Blueangel

Registered:
Posts: 148
Reply with quote  #5 
Hi Chris
I was shocked when told I couldn't have any more instills as I was prepared to
carry on with them. ( I would only have been allowed 3 more anyway )
The nurse that did it was running late and I was rushed through, she was a bit rough so it's
not surprising I was in pain almost straight away.

I have tried Elmiron but had terrible side effects. It's so stressful when you have to find your own
urologist and then it's so hard to get referred where I live . My GP 's are useless at referrals.

I won't give up trying to get treatment as I'm in too much pain.

Thanks for your help.


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