IC and my Story...so far!

Hi,

I am a 43 year old female who is new to the forum and would like to share my experience of IC/PBS with you.

I started to continuously suffer with infections approximately 5 years ago.
I had been feeling regularly fatigued to the point at times I would pass out at work.  My energy and concentration levels became so low, that I struggled to perform in my job. I was placed on Mirtazapine for depression and anxiety (as I couldn’t tolerate any other anti-depressants). The drug gave me symptoms of cloudiness in the head, and approximately 12 months later I stopped taking it. This is when the infections and the frequency in urination started.  I had already suffered a number of intolerances to antibiotics and other drugs, so when I suffered with gastroenteritis and the norovirus, I experienced severe pain around my bladder area.  I had also started to experience severe anxiety symptoms when eating certain foods and drinking alcohol.

The frequency and urgency with urination got progressively worse and so did the intolerances. Doctors just stated I had UTI’s and prescribed more antibiotics.  Some doctors led me to believe there was nothing wrong with me and made me feel like I was a hypochondriac.
Basic urine tests all came back negative and eventually (almost 3 years later), I was referred to an urologist.  I had a bladder distention and cystoscopy during December 2014 and was diagnosed with IC.  I have since had Cystistat and now Hyacist installations 3 weekly.  They do stop the infections, but unfortunately do not assist with the frequency, urgency and the nocturia I suffer.
I had tried a number of drugs to assist with nocturia and frequency, however I experienced severe side effects and therefore had to stop taking them.

Due to feeling so depressed with this debilitating illness and feeling like I have no quality of life, I asked to see Professor Chapple at Sheffield Hospital, who is a specialist in urology.  I am due to have another bladder distention, cystoscopy and re-calibration of the urethra in a couple of weeks.
Hopefully Professor Chapple will be able to help me with my symptoms and allow me to lead a better quality of life.

Good luck to you all who have to suffer with this chronic disease, it really does change your life.  I just hope the research that is being conducted by the wonderful specialists who are part of this site, are successful in their quest to cure IC.

Hi bowie1, i know how that feels, my gp is treating me like its all in my head and its so frustrating.

Hi Strandsidemol,

It took me nearly 2 years for anyone to listen. You have to keep at them and demand to see a reputable urologist. I did a lot of research myself and I now have been diagnosed with severe IC after yet another distension to the bladder and urethra.
Keep praying science evolves and we all get s cure.
Best wishes to you.
Bowie1

Bowie, its hurrendous isnt it... the pure desperation makes us go for these procedures and everytime we get worse after them, maybe not straight the way but our bladders always look worse the next time they go in.

Bowie1 I am also 43 and have developed all sorts of intolerances and I know its because of the heavy handed use of antibiotics. I understand the depression and nocturia and anxiety, I so get your story. I hope and pray that the team at UNI WA get a better understanding of this condition even if its too late for me I want my children's generation to know there is a better treatment. Its not only the bladder that is affected but also the bowel other nerves, lungs. The current treatments do not address the root cause at all, we need to find out exactly whats going on then treat the cause not just the symptoms because from my experience this disease is not static, it progresses in some people.

Hi Dantheman,
So sorry you have suffered and still are suffering with this horrible disease. Can you tell me more about how it effects other organs as no one has mentioned that to me.
I wouldn't be surprised as I feel like my whole body is packing in, including my mind!
I would be happy to volunteer for trials if I knew I would get some quality of life back.
Good luck to you and everyone else

Funny you say that. I had a instillation done today. Lignocaine heparin marcain sodium bicarb. Was to help with pain. It helped with pain so well i can't wee at all. I've been in pain so long that without it my bladder doesn't pick up the messages. I'm at my local hospital getting an in dwelling catheter put in until the pain relief wears off then I'll go back to being in pain and dysfunction. Regarding your other question im not doctor but i have read every thing there is to know about this disease. It affects any organ which produces mucous. Like IBS bowel, dry lungs, dry eyes even dry mouth. Is just that we feel it worse in the bladder because of the types of nerves in that area. Many people with ic have joint pain and a whole host of other auto immune diseases.

Today was the first relativly pain free day in nearly year but this is a cruel disease. I also struggle with multiple chemical sensitivity, drug intolerance, joint pain, fatigue insomnia. Why why why why

Funny you say that. I had a instillation done today. Lignocaine heparin marcain sodium bicarb. Was to help with pain. It helped with pain so well i can't wee at all. I've been in pain so long that without it my bladder doesn't pick up the messages. I'm at my local hospital getting an in dwelling catheter put in until the pain relief wears off then I'll go back to being in pain and dysfunction. Regarding your other question im not doctor but i have read every thing there is to know about this disease. It affects any organ which produces mucous. Like IBS bowel, dry lungs, dry eyes even dry mouth. Is just that we feel it worse in the bladder because of the types of nerves in that area. Many people with ic have joint pain and a whole host of other auto immune diseases.

Feel your pain.... Just had bladder instillation (Hyacist 120 ml), I am now in bed as I can barely move. I don't always feel this bad afterwards, but I think it's because of the recent bladder and urethra distension. It all sucks and now you mention it, I wondered why I always had a dry mouth

Continued as text disappeared.,,,
I do suffer IBS, muscle pain and all the other crap that comes with it. I have been told to consider having my bladder removed. Seems too drastic for me, but I know others have felt better after the procedure, however some people have had other problems. Have you considered it yourself?
There must be a better way surely.
I wish there was a treatment centre for all of us to attend together, to support one another.
It's the family that suffer too. I hate letting everyone down and feeling such a burden. My young child is missing out on things we should be doing together. I know it could be worse, but some days you just lose the will.
I hope you have a better day tomorrow and finally get to pee!! Maybe you will get some sleep with the catheter

Do you use anything to urinate into when you travel? I don't want a catheter but could really do with something external that will strap to my leg. Any ideas?

Problem with me is that i find it very hard to empty my bladder. Can't do it sitting down. I had a in dweling catheter put in last night in the ER and it wasn't pleasant at all. My bladder just wanted to keep trying to push it out and made my bowels freak out too. Ended up having them take it out. My friend in the US uses a cock sock when he travels. Puts it over his old fella and then straps the bag to his leg.

The strain on my family had been horrendous. Once the nerves in and around the bladder become activated it sends it is almost impossible to shut them off. I'm approaching bladder removal stage my self but it's a shame because my bladder looks normal. I don't want to be a 43 year old guy without a bladder and then all the other stuff that comes with if. This condition is so depressing i love my family my kids my wife but i have become such a burden on them. My son is 13 and can't handle it any more. I've lost all my confidence as a human.

Hey bowie what is urethral calibration

I think there are similar devices for women to use when they travel other than in dwelling caths.

Bless you it's bloody rotten isn't it. I think I would turn to drink if I could handle the alcohol!
The sock thing sounds ideal for guys (if you can urinate). I have tried a number of things on the market, but can't find an external bag that straps to the leg without a catheter. I have asked the specialists and they say there isn't one they can get hold of.
It would make life so much easier if there was one.
The re caliberation to the urethra is a stretch to make it wider. In fairness I do feel some difference with the pain, but like the bladder distension, it will probably shrink again.
I just wonder whether the instillation treatments are worth it, as I felt so ill yesterday after the treatment and am struggling with my back today.
How is your diet? Do you watch what you eat and drink?
Keep the faith and hopefully these guys will find an answer to our prayers.

I have a very strict diet don't drink ant thing bit water and chamomile. I don't ingest histamines, gluten dairy or any thing sweet or sugary. Doctors are baffled with me hence the botox on Thursday. Quote frankly i don't want to live with this disease any more. I'm ready.

I know how you feel as most of us with this crap disease do. Those thoughts go through my head daily, but I fight them for the sake of my family. They would miss you dearly if you left them and there is always hope and a choice I suppose. I try to think that as bad as it gets, we have a choice to live, others sadly don't. But I guess the key is CHOICE. When things get that bad I bizarly watch Sylvester Stallone in Rocky. Sounds silly (especially for a 43 year old female), but we all have our points of inspiration.
If my life would allow for it, I would move somewhere stress free with the basics in life. I think that would help me immensely. I believe stress has paid a major part in this disease for me and I am really trying to keep my levels low, although very difficult with severe anxiety and now this debilitating disease.
Just remember you are not alone and we are all here for you.
Be strong for yourself and your family, it has to get better.

Yes we all need to stay strong.. who knows we could be closer than we think to all this being figured out. I feel the same as im sure we all do, we just need to keep going and trying to do as much as possible to create more awareness and get doctors to listen to us.

Why do ICers all aider with chronic anxiety. Some times i think i created this disease because i had an anxious energetic nature

I know what you mean about this fact it appears the majority have this in common. I thought i was keeping a good lid on mine the last few years

I do believe anxiety played a big part in me suffering with IC. It all links in with when I started with the illness, I was under tremendous stress at the time and I had a nervous breakdown as a consequence.

I have no clue what is causing mine, having such a really bad day. Feel down, frustrated, angry and no hope

Alot of the anxiety i find is associated with the pain and urgency in my bladder. I think people with ic ate hats on them selves because of the constant pain