Another one!


#1

Hi

 

Has anyone had any experience of interstitial cystitis which I seem to have, another chronic disease that has an unknown origin and can't be cured? The pain is quite intense and I keep getting up in the night to urinate.The foods you can't eat are quite depressing,  Sorry to go on but I feel the quality of my life slipping away bit by bit at 53!  

 

Not diagnosed yet, a cystoscopy coming up soon.  Could this have anything to do with Parkinson's, the immune system and nerves to the bladder?  Feel a bit desperate but do tend to worry a lot anyway.

 

Thanks

 

soulmate


#2

Hi, Soulmate,

I am sorry you have Interstitial Cystitis. Is that on top of Parkinson's?

I don't think the two things are connected, at least I hope not, as one of my daughters, aged 36, has had Interstitial Cystitis for 3 years now and I would not want her to develop Parkinson's as well. Also, I have not heard of any cases of Parkinson's patients with Interstitial Cystitis.

My daughter was offered a cystoscopy, but she refused when she heard that they would dilate her bladder and thought that would damage her bladder further. She controls her symptoms simply with a very strict diet. There is a diet sheet you can download from the Interstitial Cystitis Association, which is American.

In this country there is C.O.B., which is also for sufferers of bladder problems, including Interstitial Cystitis.

I do hope you find some respite from that very painful condition.  All the very best


#3

Hi Soulmate

I suffered from this in my late 40s and tried all sorts if treatments. I don't have Parkinsons and don't think it is connected.

Eventually I was referred to a menopause clinic where I was told this is very common in ladies of a certain age due to thinning of the tissues in the vaginal and urinary areas.

I was prescribed oestrogen cream to insert and was symptom free in about a month.

I still use it as a maintenance treatment a couple of days a month.

My GP was fascinated and said she would recall patients with similar problems and offer them a prescription.

Worth asking your GP about trying it?

I do hope you find some relief as I know how painful and disruptive it can be.

Love

GG


#4

It is amazing what one can find out from this site!!!!

Goldengirl, I found your post extremely interesting and I'll suggest the oestrogen cream to my daughter. Thank you for this valuable piece of information.

Soulmate, I hope that Goldengirl' s suggestion helps you too. Let us know whether it does or not.

Meanwhile, try  a TENS machine for period pains to relieve the discomfort when it occurs, as that helps my daughter. She also finds that she has to reduce her salt intake to a minimum, as that seems to aggravate the condition. Of course acidic foods are a no-no.

Regards



#5

Management of urinary problems

Local oestrogen
The role of local oestrogen in the management of urinary problems is complex. Oestrogen replacement therapy has been shown to alleviate urgency, urge incontinence, frequency, nocturia and dysuria (difficulty passing urine).6
 
If you type " oestrogen and urinary problems" into a Google box there is lots of info.
This is on a Women's Health site.
Hope you have some success in finding a cure!
love
GG