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MB1

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Posts: 16
Reply with quote  #1 
Hi everyone,

I have been suffering with IC symptoms for quite a while now, I was referred to a Urologist in 2016 and he said he thought it was interstitial cystitis - I didn't want to undergo a cystoscopy to confirm what GPs and the Urologist Specialist already thought it was, and I was very poorly last year with a separate health condition so couldn't face it, And I had read on this forum how sore and bad cystcoscopies can make people, so the Urologist agreed to give me Ialuril instills based on me having IC.

I started the Ialuril instills in October 2016 and had 10 instills in total before stopping them, the instills weren't life changing by any means but I did feel my symptoms getting slightly better but still had to be near toilets and avoid lots of foods. Unfortunately, the Nurse who had been doing my instills left and was replaced by a Nurse who really wasn't very good at what she was doing and I only had 2 instills with the new Nurse which both caused terrible urinary tract infections and pain and discomfort from her bad care, the previous ones didnt.

I asked if anyone else could do the procedure for me, which they couldn't, they didn't offer self help Ialuril instill for me to do at home - I feel the Nurse and the Urologist have been very poor in their care to me and haven't seemed to want to help and rather kept suggesting I do a cystoscopy or kept suggesting I be referred to a different hospital where they have more advances/alternative treatment, which just made me have no faith in them and i didn't feel supported at all.

After months of perseverance with this particular hospital, I have now stopped going to my current hospital for treatment and asked to be transferred to the other hospital which I hope will provide better care - Unfortunately this means starting the whole process over again [frown]

I am a lady in my early twenties and IC is effecting my life - I very often urinate and then urinate again And again, I can go out but need to know where the toilets are along the way and when I get there, I work and manage that as the toilet is nearby and I have had to dramatically alter what I eat so I don't have anything acidic, caffeine, tomatoes, chocolates, I don't have any condiments like ketchup or tartar sauce etc.

I have had a few urinary tract infections too that have mainly been caused by the Ialuril instill procedure or by bacteria accidentally entering the tract.

What I am after help with is what do you all suggest for me moving forward, as I am currently struggling on alone until I get my new referral through, and I am not sure even that will help?

My GP recommended Citaloprim SSRI tablets but I am concerned as I am very very sensitive to tablets and I rather get side effects or they irritate my bladder - has anyone used Citaloprim and what was the outcome? My GP doesn't seem to know IC and doesn't understand the impact it has and has no experience with it, so that's no help either.

Some people on this forum also recommended D Mannose tablets, but this concerns me also as it contains sugars which are found in berries etc, And I can't take berries normally as it effects my IC - anyone used these also?

I bought Desert Harvest Aloe Vera capsules but they seemed to make me worse.

Anything you can suggest or recommend would be very helpful, or any tips on what may help with my new urologist when I get to see them would be very very helpful.

Sorry for the rambling, Just wanted to give you some background info so you can maybe offer some help.

Thank you so much
MB1
elanaoali

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Posts: 25
Reply with quote  #2 
Hi First thing first I am sorry you had such a rough time but know this there is hope out there for IC suffers. 
http://www.ic-network.com/interstitial-cystitis-subtypes-phenotypes/ This is link to the IC Network and this is a new to IC the subtypes of IC. From this I hope this will help you work out what you are. Remember we are not DRS on this site but you sounded like NO 2 and therefore the bladder instillation haven't work. Nor will you have the huner's Ulcers like NO 2 so that won't find anything. 
I was offer a  cystoscopy well surprise that I hadn't had one. I have a new consultant and the my first consultant/register can't remember didn't feel it was necessary. However I have said if she wants then I am willing to do it. 
Education for all health care professionals is the key. Please be patient with your GPS they are only general practitioners and don't know all about everything. Perhaps if you get some literature from Bladder heatlh Uk then give it to your surgery being polite of course saying I thought you might found this interesting and helpful then I think you will cause no offence.
On the subject of bladder instillation then they don't work for all. They did for me but I think I am a different subtype than you. You can get bladder infections form them a risk of having it done. You found they helped a little?! I found they helped a lot. However I am on Elmiron (hospital prescription) from my consultant to see if this will work for me. I been on it 7 wks now and it takes 6-8 wks to become effective but possibly up to 6 months so I am being patient. Other medication to try are amtriplyine (this can prescribed by your GP) this helps me sleep at night. If I forget to take it then I don't. 

There is also a drug called cimterdine which your GP can prescribe so that something to try. 
As for diet see IC diet on IC forum website. It is important to go on the strict diet they suggest at the beginning to get rid of lots of things. However this may be daunting but this really can bring results. I started it and it has really helped. I look at this way it helps you to have a very healthy diet. Yes I missed chocolate but white chocolate is a good alternative, quorn sausages, coconut yogurt. I do sometimes throw the toys out of the pram as my mum would say on diet. Prorelief tablets from amazon are useful to take to reduce acidity in foods. I only take mine when and if I need it. Some people take it every day. Never tired aloe juice/pills. www.ic-diet.copdfm/pdf/The-IC-Diet. Link into diet. 
Try joining the IC forum for support. They are based in america so you have to wait for your reply to be read but they are brillant. 

As for me I had it for 3/4 years now and was really good on bladder instillation but am trialing Elmiron as I said. I take the pill to help my oestrogen levels. (49 years old) and ovestin cream not really suitable for you I think. I have had 18 months of bladder instillation called cystitat. I had good results from this but now I back to flaring. So that's why I trying Elmiron as a different treatment. 

I would go with the advice of the hospital and go to a more advance and knowledgeable one. I am very blessed as my local hospital is the south west center of excellence for urology and hence I found myself getting good treatment. 

Finally I would say don't give up there is a solution out there for you. You can be better and I hope and pray you will and get the help you need. [smile][smile]

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Jermiah 29:11
MB1

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Posts: 16
Reply with quote  #3 
Hi elanaoali,

Thank you very much for the info and kind words, it really is appreciated.

Thank you for the IC Network link, I didn't realise there was another IC Forum apart from the one I am currently on.

I agree with what you said about me and my symptoms sounding like No.2, it definitely does sound like what happens with me. My only doubts are that bladder instills did seem to be making a gradual improvement for me (I had 10) but then I had to stop due to the lack of care when administering it, but as the bladder instills did work somewhat, would I still be a No. 2?

When I read the text on the link you supplied, it said that an anaesthetic, aka lidocaine, instilled in to the bladder can be helpful - Do you know if anesthetic instills are available from NHS Urologists in the UK? It has never been mentioned to me at my current hospital, but like I said they have been very unsupportive and I have felt they haven't wanted to help - I hope and pray that the new hospital I am being referred to will be able to help me more, but it's going to take months before I am seen unfortunately.

I know what you mean about the GPs being General Practitioners not specialised in urinary conditions, if I need to see the GP I will take in some leaflets to give them some info on my condition.

I haven't been offered Elmiron yet but have heard about it - I really hope Elmiron works for you [smile]

Thanks for your suggestion of Amitriptyline, I am glad to hear they work for you on an evening, unfortunately I tried Amitryptyline and had to stop as it caused me chest pains and arm pains.

I tried Cimetidine too, but like Amitryptyline, I had to stop as it caused me side effects, but the side effects for Cimetidine were severe as it caused severe retention and pain and I couldn't empty my bladder.

I thought this what we are chatting on was the IC Forum? I am guessing the link you sent me is a different IC Forum based in America? (Sorry for any confusion, I am new to all this)

What prorelief Do you use if you don't mind me asking? As I have had a look on Amazon and could only find prorelief for men or prorelief that contains cranberry, which my last urinary nurse told me to avoid cranberry? I don't suppose you know if D Mannose is a prorelief?

Thanks, I am hoping the referral to a new hospital with a much bigger team will make all the difference to me (fingers crossed)

Thanks again for your help and support[smile]

MB1





elanaoali

Registered:
Posts: 25
Reply with quote  #4 
1. https://www.amazon.co.uk/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=prerelief&rh=i%3Aaps%2Ck%3Aprerelief Sorry got the name wrong 
2. Elmiron www.orthoelmiron.com is an American drug and is prescribed on a patient to patience. Expense for the NHS at 90 tablets working out about 1.6 per tablets. So I trailing them.
3. Cystiat was the instillation I was on and if I want to be on again a 2 month wait with 6 months of treatment and then the nurses can teach me to do it myself. Too much pressure on the to do it in clinic due Bladder cancer patience. I don't know what outs there for us. I would try and look up your local hospital area some hospitals have on the internet their protocols 
4. Marshmallow tea  n.co.uk/d/Beverages-Coffee-Tea/Celebration-Herbals-Herbal-Marshmallow-Leaf-Root-Caffeine/B000HB9TOU/ref=sr_1_1_a_it?ie=UTF8&qid=1495368800&sr=8-1&keywords=marshmallow+tea+bags tried it certainly acquired taste 
5. Bicarbonate of soda 1 tsp in water for flare ups Yuck but works
6. What to do in a flare up 
http://www.ichelp.org/about-ic/symptoms-of-ic/icflares/
7. Cimterdine didn't work for me gave me cramps but then went away 
8. There isn't a pathway so to speak for IC in Europe NOT IC but now Painful bladder syndrome a better word perhaps? 
9. Do you get pain as well as urgency if you do then I recommend Tens machine. I having a flare up at the moment. Tried it before as it worked for me in labor when I had my daughters. So I tried it and it worked. I going to get some more pads as I don't have any at the moment. 
Lastly don't give up your GPs. I was diagnosised by one of my doctors who the urology nurses said was amazing as most people don't get diasognosise for 7/8 years. 
Any more question please post here and I will amend to answer or point you in the right direction. Thank you for being a blessing to me. I don't like having PBS but I love being able to help others. You blessed me to day. 


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Jermiah 29:11
MB1

Registered:
Posts: 16
Reply with quote  #5 
Hi elanaoali,

Thank you so much for all your help and info, I am very grateful.

I have just ordered some prerelief tablets via the link you sent me, so I am hoping they work for me - I wouldn't have known to do this if it wasn't for your help[smile]

I really hope Elmiron helps you and helps to ease your flare ups.

Thanks for your advice regarding the instills, I will take a look at the details available online for the hospital I am being referred to - I think the hospital I am being referred to does Cystiat instills, where as the hospital I was at before did Ialuril instills.

I have tried the marshmallow root tea before but unfortunately I didn't like the taste either so didnt continue with it.

Thank you for telling me about bicarbonate of soda with water, I didn't know about this - I will take a look at the link you sent me too about what to do in a flare up.

Is there any particular flare up method that works best for you?

I understand that IC is now known more as painful syndrome, do you use this particular site we are on now for help and support? Or do you use this and the IC Forum link you sent me earlier?

I do get bladder pain sometimes but my main symtom is frequency - what upsets me the most is that I will go to the toilet and pass urine and then as I am walking back to the sofa I will need to go again and again - it makes going out difficult so I have to plan my journeys so I know there are plenty of toilet stops and plenty of toilets when I get to my destination, it's horrible at the moment.

If you don't mind me asking what are you main symptoms, Is it pain?

I am glad your GPs have been really helpful, I am trying to keep the faith that I will get the right help eventually but it will take months before I see my new hospital specialists which is making me feel down at the moment. How long did it take for you to be seen by your NHS urologist after your GP referred you please?


Thank you again for all your help and care

MB1


MB1

Registered:
Posts: 16
Reply with quote  #6 
Hi elanaoali,

Just one more query, have you heard about Biofilm infections? (I found out about them via this site) Now worrying in case I have a Biofilm infection and just wondered if your specialist talked about it at all?

Thank you
MB1
elanaoali

Registered:
Posts: 25
Reply with quote  #7 
Personally I have never heard of biofilm I infection. However my consultant did mention long term use of antibiotics as a treatment that she surprised that haven't been use forme so maybe that is it. I am not due to see her til mid July I will keep it in mind to a as know about biofilm infections.
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Jermiah 29:11
ModeratorKate

Moderator
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Posts: 1,677
Reply with quote  #8 
Hello Ladies
So lovely to see Members helping each other,with advice and sympathy .

Here is an interesting post that may help you both re Biofilms, if you look at Moderator Suasans answer, there is a full explanation.
http://cobf.websitetoolbox.com/post/just-started-treatment-with-dr-a-8374617?trail=15#11

Also if contact the BHUK office they will have so much more info to help you. 0121 702 0820

And a couple of further threads posted by our Members that may also help.

Chryssalis suggestions and help
http://cobf.websitetoolbox.com/post/things-are-getting-better-7939418?trail=15#1
............................................................
Maazys success story with Prof
http://cobf.websitetoolbox.com/post/antibiotics-8444934?trail=15#4





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MB1

Registered:
Posts: 16
Reply with quote  #9 
Hi ModeratorKate and elanaoali and everyone

I agree Kate, it's been lovely being able to talk on this forum and get help and advice I wouldn't have got elsewhere [smile]

I got an appointment through today for a couple of months time to see a urogynacologist so I am really hoping this may help, not sure what they do though?

I read the links you sent me Kate and found the tips such as actImel drinks and natural yogurt etc, certainly worth a try!

Bladder Health UK are posting me out some Biofilm info.

Does anyone know how to get a proper urine test done to check for bacteria other than dip and culture test?

Thank you

MB1
Moderatorsusan

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Posts: 954
Reply with quote  #10 
Unfortunately the only urine testing available in the UK is that which is currently offered by both NHS and private specialists. There is one private company that BHUK can give you details of that will offer a longer culture than the standard NHS and Private testing of 18 hours but and its a big but they will only do this if they find significant markers of infection in your urine after 18 hours of culture. So that will be either bacterial growth, white or red blood cells, nitrates or protein. You can request a longer culture but unfortunately there is no guarantee this Laboratory will do it unless these markers are found. If you are interested you can call the BHUK office and they can give you details. For culturing its always worth doing this when symptoms or bad or you are experiencing a flare and always, always do a culture at least 7 days away from antibiotics otherwise there is a strong risk of a false negative result.

Otherwise there is a laboratory in the United States which will offer something called a "Broth Culture" and again the BHUK can provide you with details should you wish to go along this route.

Next generation PCR or DNA testing is yet to come online here in the UK but it is hoped that in the next few years this may become available although it is very expensive and at the moment only used in research labs here in the UK looking at bacterial infections.
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