Thank you, people of ICS

[Lady CIO]

Hi everyone,

First of all: thank you. Thank you for being here and sharing experiences. I've been searching the internet for a safe group to gain practical knowledge for quite a while. I've given up a few times because of what I stumbled upon during this search (mostly AB/DL sites...) but the last few weeks I've found myself reading posts on this forum and finally got the feeling that you guys know how it feels and are sharing valuable tips on dealing with our situation(s). That's why I've decided to join this forum. Thank you Schoppy for approving, even on Easter sunday.

So let me introduce myself: I'm a 39 year old East-European woman, I have a busy life and family I'm grateful for. I am -to a certain extent- urine incontinent. Even tough I take pride in my very well trained pelvic floor, my bladder is living her own life. I have 2 big Hunners lesions in my bladder, and that probably explains why I've experenced cystititis without positive bacteria-tests since I was 9 years old. The main symptoms were frequency of urges and pain, but that came and went.

The other issue I have is a (partial) neurogenic bladder. The doctors aren't sure of the cause. It may be a car accident I've had when I was 13 years old, or it's the autoimmune disease that seems to attack the Urogential system in my body every now and then. Either way, I have a talent for scar tissue (this one pressing on nerves), and the doctors are not willing to operate in the area of my spine becuase of this. I have some functioning feedback working when it comes to bladder function. Clenching at first urge (again: Yay for pelvic floor muscles!) buys me a few minutes.

The clench-strenght also became my achilles heel, I didn't realise I had tensed my pelvic floor just about 24/7 until my GP send me to an urologist 2 years ago because I was so freaking tired. The tests showed the Hunners Lesions and the partial neurogenic bladder. Tensing these pelvic floor muscles all the time is not a good idea I was told....

There are contraindications to all three treatments that were suggested. Botox might cause my OAB to turn into UAB and, since my kidneys are not functioning properly, the risk of reflux is not acceptable. I have some problems with my eyes, wich rules out medicine. And an operation is not an option because of my talent for scar tissue. Any surgical procedure puts me at risk of making it worse.

For me this means "managing" the symptoms on my own (and with the help of tips of this forum and a very good IC nurse). On normal days at daytime I wear a pad (or pull-ups on busy days) and clench....until I can get to a restroom. While working this is not a problem, I work in an office setting an most people adjust to my agenda anyways. When I come home I take a muscle relaxant and wear a pull-up. At night I wear the Tena Flex Super or Maximum, so I can get a good night of sleep. I also wear these for travelling or when drinking alcohol on a night out (not that I drink much, but one ore two glasses of wine ore beer just have a huge effect on my bladder)

I've come a loooooooooong way accepting this, especially the need for anything more than a pad for my incontinence. But I know this is the best case scenario and I'm taking care of my body. My husband and kids know of my condition and are very supportive, my own opinion and feelings towards needing incontinence products, especially adult diapers, were the real struggle. Anyways, I'm getting there. Living my life, feeling better than two years ago

Again, thank you for being here. Your tips have been very very usefull, I feel obliged to let you know this. You made me feel that I'm not alone.

[Patrick]

Welcome.

You have come a long way, which makes your contributions here so valuable. Your success is commendable, a goal for all of us.

[batman381327]

Welcome, accepting what is going on and what you have to do is very difficult.

[john1050]

Welcome, Lady CIO !

Thanks for the intro. Quite a comprehensive explanation of your condition.

We all have come here via different roads and paths, so I'm happy you not only found this 'sanctuary', but that you've
felt enlightened by our outlook and acceptance. Many here have a lot of information and support to offer others.

You may find that you will have much to offer others, too.


John.

[5bugles]

Welcome to the forum! Sorry to hear of your struggles, but glad you have been able to manage them successfully.

[RobertH]

Welcome to the group, we are all here to help and support each other

[Lady CIO]

thank you all for welcoming me!

[michael_dahlke]

Hi Lady CIO,

also a welcome from me. It looks like we are in the same boat - in my case just glomerulations and no Hunners lesions found. How ever, since my diagnosis is pretty new I'm interested to learn what helped other. Especially if some one had already experiences with PPS (Pentosan Polysulfate Sodium).

For the Hunners case I read, that the combination of DMSO (Dimethyl Sulfoxide) and hyperbaric oxygen therapy was proven for good results. There is also a interesting update of the US and Australian guide line from the Deutsche Gesellschaft für Urologie. The English version of the document you can find here:

https://www.awmf.org/fileadmin/user_upload/Leitlinien/043_D_Ges_fuer_Urologie/043-050e_S2k_Diagnosis_Treatment_Interstitial_Cystitis_2019-03.pdf

[mattwp]

i am happy you found the group and doing so well hope you continue to visit the group and you have a great week

[Lady CIO]

Hi Lady CIO,

also a welcome from me. It looks like we are in the same boat - in my case just glomerulations and no Hunners lesions found. How ever, since my diagnosis is pretty new I'm interested to learn what helped other. Especially if some one had already experiences with PPS (Pentosan Polysulfate Sodium).

For the Hunners case I read, that the combination of DMSO (Dimethyl Sulfoxide) and hyperbaric oxygen therapy was proven for good results. There is also a interesting update of the US and Australian guide line from the Deutsche Gesellschaft für Urologie. The English version of the document you can find here:

https://www.awmf.org/fileadmin/user_upload/Leitlinien/043_D_Ges_fuer_Urologie/043-050e_S2k_Diagnosis_Treatment_Interstitial_Cystitis_2019-03.pdf

Hi Michael!

I have some experience with PPS, but it wasn't a good one unfortunatly. It made me bleed excessively from my uterus, that might be because of the auto-immune reaction I'm prone to start at random triggers. So I had to stop after 3 months and hadn't experienced any relief at that point. I'll read the article, I've never heard of HBOT in relation to bladder problems so that's interesting!


Tschüß