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KayP

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Posts: 5
Reply with quote  #1 
I have been a member of COB since 2005, when I was diagnosed with Eosinophilic Cystitis.  I have had problems ever since.

Over the years I have had countless cystoscopys, countless medications and countless instils.

When I last saw my consultant in February of this year he said I was "perilously close" to major surgery, but he wanted to try Botox injections before we made any decision.

I had the injections last week, and yesterday I saw a specialist nurse re self catherterisation, should it be necessary.

My last cystoscopy was in January, where the biopsy result was Cystitis Cystica.  I finished up in A and E the morning after the procedure with chronic retention.  I have had a catheter in since then (5 months) until yesterday, when the specialist nurse removed it.

The reason I am posting this is my mental health, which has deteriorated rapidly this year.  The older I get, the less able I seem to be to cope with this.

For the first time I think that life is not worth living, so why bother living it.

I have tried all the "Mindfulness" routes, with no success.  My GP has perscribed Sertraline and Diazepam, which are not helping.   I just don't know how to deal with the crippling anxiety that renders me incapable of functioning anything like normal.   The response from my GP is to just increase the meds.

I know this must be a major issue for so many of you suffering with the same problems and just wondered if anyone has found any coping mechanisms they can share.

Thank you




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KayP
Moderatorsusan

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Reply with quote  #2 
Really so sorry to read your struggles and its completely understandable how desperate you must feel.  Whilst specialists can provide the medical support they simply cannot help with the emotional burden this places on us.

Most of the pelvic pain clinics in the UK should have counsellors attached to them.  You really need to be referred to talk to someone who is a trained professional about how to deal with this illness. If you call the BHUK office they can offer you details of where the pelvic pain centres are located in the UK.  You could also do a Google search for Counselling - Chronic Pain which may bring up someone local in your area however I know a couple of PP centres run excellent one day or longer courses to help manage things and provide CBT and Coping strategies.  I myself used a counsellor a few years ago attached to one of these centres which is located in London when first ill and it got me out of a very dark place.  
Moderator_Jen

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Reply with quote  #3 
I am so sorry you have having such a difficult time and I really hope things improve for you soon.

I totally agree with Susan's advice - pain clinics are an extremely good resource and have a multitude of specialised staff in different expertise attached to their service. I've been under one for 6 years and they have been very inventive with my pain manangement and helping me cope positively whilst living with chronic pain.

A lot of GP surgeries have counsellors attached to their surgeries so their patients can be seen quicker. Perhaps if you give your GP surgery a call and see if this is something you can access via them and what the waiting time is? If you can't face talking to a Drs surgery then perhaps emailing your Dr's secretary with your request?


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KayP

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Reply with quote  #4 
Thank you both for your prompt and kind replies. 

I am not in chronic pain.  My bladder aches most of the time, but it is not unbearable.  My main problem is coping with the frequency.  For so many years I have lived my life in and around toilets, that I now seem to have developed an obsession, which I know is the cause of the anxiety.  I am in a viscious circle.  Anxiety makes the bladder over react, and the frequency causes anxiety.

Each time I do a wee, my brain is focusing on how long before the next one.  And then, as the day wears on the bladder ache gets worse and worse.

I cannot switch off from timing how long between each visit to the toilet.  I have had so many holidays cancelled or ruined by this.  Now I just don't bother going anywhere.  The catheter, although very uncomfortable, at least let me leave the house.  I was able to pick my grandchildren up from school, take the dog for a walk, go shopping without having to spend every twenty minutes queuing up at the nearest ladies.  It was my very uncomfortable "comfort blanket".

I find it so hard to believe that so many consultants seem okay to send you home to be rendered housebound and live life on the toilet, most in tears.  To be honest, if an animal was in similar distress it would be put down.

I will contact my GP on Monday to say the medication is not working and ask if I can go down the therapy route............although, as we hear every day, the waiting list for this type of service is horrendous.

Thanks again for your response.

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KayP
ModeratorKate

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Reply with quote  #5 
Hello KayP
As Mods Susan and Jen have said am so sorry to read of your ongoing misery with this dreadful dis-ease,they have given you some good advice.

I can fully understand your brain continually focussing on " how long to the next time" 
The very fact that you e aware and seeking further guidance has to be applauded, bless you.

Here are a few other thoughts for you.

Have a read through the BHUK website.
http://bladderhealthuk.org/bladder-conditions/continence-support

As was mentioned do speak with BHUK advice line, they will have more info for you.

Maybe you could telephone the Office on Wednesday and speak with the Incontinence Nurse.

Have you tried taking D Mannose and Oil of oregano, whilst these are for infections, just thinking they may take away some of the urge feelings.I know when I feel I have a flare coming on and my tummy becomes sore and bloated, a few doses of D Mannose seems to give me relief, I particularly, try and take before retiring, and really holding passing urine for at least an hour after taking the D Mannose.

Just some thoughts to let you know we are listening and sympathising with you, so you do not feel so alone.

Do keep posting.
Kind regards
Kate






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Moderatorsusan

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Reply with quote  #6 
Should also add that just because it states a Pelvic Pain clinic does not mean that you have to be in chronic pain to be referred to them. They have referrals from plenty of people with frequency and urgency because the emotional management of this issues can cause so many problems and the approaches offered will cover a variety of conditions yet often have the same emotional distress (loss of previous life, exclusion from everyday life etc). I'd certainly talk to your GP about getting a referral for counselling at a PP centre. You should not feel isolated about this

Moderator Kate has given excellent advice and the Continence Nurse who attends the BHUK office on Wednesdays is absolutely lovely, completely giving of her time. Even if she is on the phone when you call, she will call you back with lots of support, suggestions and understanding.
KayP

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Reply with quote  #7 
Thank you again for your help and support.

I will certainly call the Continence Nurse on Wednesday. 


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KayP
coboffice

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Reply with quote  #8 
Hello KayP

I am on the advice line today, should you wish to give me a call. I have had counselling myself and CBT to deal with some of the anxiety bladder issues have caused me over the years. It might help to know that you are not alone.

Susannah Fraser

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willow9

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Reply with quote  #9 
Hello K P
I ,like you have suffered many years of pain & frustration with this awful problem.Years ago,after yet another test/ procedure,I came home very depressed and it was then I decided to go down the alternative routes.Which my first venture was with Homeopathy,which helped me personally as the homeopath was very calming.,and whilst you feel calm you cope better.Yhen I found. Very good herbalist,again I cannot stress enough how these people have time for you and make you feel better just meeting with them.She ,after 15 yrs now ,makes up special tea for me according to my symptoms which help enormously.Now I accept that there doesn't seem to be a cure for this dreadful problem but he fact that I have sought out alternative treatments ha s given me a different focus.Therefore KP I hope it wboud do the same for you.I wish you well it's all hard work but perhaps that's part of the therapy if you you get my drift
Good luck

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