photo ABENA ADVERT-banner_zps5mzyerjh.jpg  photo Dmannose_zpsvcaxj4ag.jpg

Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 3 of 4      Prev   1   2   3   4   Next
DanS

Registered:
Posts: 9
Reply with quote  #31 
Hello again

I thought I would update my previous status and let you know what has been happening.

I have been taking Betmiga since April, and I have noticed an improvement [for the record it made little difference whether it was taken in the morning or the evening]. My symptoms have improved, however, I am still along way from what I would consider a normal bladder function. I have also been taking Pumpkin Seed Oil Capsules with each meal.

I went back to the urologist last week who has now prescribed a combination of Betmiga, Vesicare and Tamsulosin. Fingers crossed this combination continues to help me. I have a follow up in 2 months.

DanS
Moderator_Jen

Moderator
Registered:
Posts: 952
Reply with quote  #32 
It's great to get an update, thank you for taking the time to share your news.

I hope things continue to improve for you and look forward to hearing another update soon. Xx

__________________
Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
90awk

Registered:
Posts: 2
Reply with quote  #33 
Hi Forum members. I am new to this forum.

I am now into my third year struggling with an overactive bladder. My problems started after having a second (revision) operation on my lumbar spine. I had a discectomy at L4 L5 and S1 and ever since 16 Sept. 2011 I have been having problems.

I struggle with urgency. I never know when its going to happen as I have no sensation before the urgency and although I try to hold it, I leak urine. It kind of comes out in spurts, almost like the muscles that is holding the urine back relax briefly.

On waking from my surgery I knew something was wrong and told the nurses about it, but I was ignored. I went back into A&E 5 days after with further loss of sensation and being unable to empty my bladder. I had an MRI which showed a haematoma pressing on my spine. My consultants said that that was what he expected to see on an MRI after a discectomy, and I was discharged with anti-inflamatories.

I have had urodynamics test done around the end of 2012. The report from the consultant came back with "no demonstrable detrusor instability, but had to stop the test when filling the bladder to 500ml". I couldn't feel my bladder full at 500ml.

Anyway... all of this is in the past, and after all this time I am still struggling. I guess I try to live with it, and pretend that it doesn't bother me, but today I had an urgency and I decided to measure how much urine I passed. Today I was so desperate, it was urgent, it was imperative that I get to the toilet all to pass.... 100ml? This is not right is it? This made me so sad. The realisation made me feel so alone. Incredibly isolated.

I don't know where to go from here. I have tried talking to my GP I've tried the tests. I was intrigued when I found this forum, and the charity, but I wouldn't know where to start. I don't know what help I need, I don't know what to ask. I've had this problem for 3 years, and in that time I have been through periods of this getting me down. I'm going through that again right now. I have lost all faith in the medical profession as going down that route has produced nothing. I tried detrustol xl for a while, but it made me extremely anxious.

I am positive that my problems are neurogenic. I have tiny little muscle spasms in my legs and feet. Like tiny little individual muscles twitch. I can sit and see them when I rest. I also have constant pins and needles in the same areas. Early on after the surgery, maybe for about a year, I had pins and needles in between my thighs, around my genitals and buttocks. I am positive that nerve damage was done at the time of the surgery. I have had brief encounters with a urologist. who concluded that all he could do was inject botox into the bladder to paralyse it completely, leaving me needing to self catheterise every 4 hours. I would like to see if there is any alternatives, but I find most medical professions I have seen don't have time to discuss or explore alternatives.

I don't know where to go from here.

Thanks for reading.

__________________
90awk
Buddy

Registered:
Posts: 15
Reply with quote  #34 
Hi 90aweek, I am new to this forum and I am at the very beginning of the journey. There where a couple of things that stood out to me, I have problems at L5 a compressed nerve, I also have Pudendal Neuralga and that is the part that stood out with you , the tingling in the buttock area etc as it sounds to me the Pudendal Nerve has been damaged/irritated, have you tried physio? I don't know if you are male/female, and your age but I am female age 48 and I have just started using local oestrogen and this seems to be helping, but if you are male then that is of no use.

I don't know enough to advise anything else, I totally understand your lack of trust in the medical profession, I almost feel that and I have gone the private route, just pay a lot to see the doctor quickly and a posh waiting room, is the only difference I have noticed, pelvic pain is just not high on the priority.
90awk

Registered:
Posts: 2
Reply with quote  #35 
Hi Buddy.

I am 35 and male. It kind of makes it difficult for me as I am still young. I have always been physically fit. I own and run my own gardening business and being mobile all day without the use of a toilet makes it fun to say the least.

I have looked at many aspects of my possible condition, have researched many causes. The pudendal nerve I highly suspected to be the culprit. But does this not stem from the sacral spine at S2? This was the only reason I discounted it. However, I do know for sure that a nerve is to be the cause as I awoke from the operation with problems. So, it may be the pudendal nerve.

I initially suspected cauda equine syndrome, but I'm not sure because it has never been confirmed. Hence im stuck with a condition that I can only speculate about.

I have had physio after the surgery. And as I'm a male, I don't think oestrogen is the way forward for me lol.

Thanks

__________________
90awk
Buddy

Registered:
Posts: 15
Reply with quote  #36 
I wouldn't be at all surprised if the PN is the culprit, however nerve damage is nerve damage and painful at that. I have really researched the PN, and so many conditions like IC, vulvodynia (female only)seem to have the PN in on the act, and the fact you woke up after surgery knowing something was wrong, that is a very PN thing, my PN was caused by an untreated UTI, that I am now on my fourth month of rotational antibs to try and get on top of.

It may be worth you trying physio again, with a physio aware of this problem as it usually requires internal physio, also have you tried any of the nerve pain medication iam on amitriptyline, I had my appointment at the pain clinic last week in London and they said ami and pregagablin are good for bladder pain.

Also are you sure you don't have an infection in the bladder wall, this is different to a typical UTI, this is what I am being treated for and so are others on this forum.

Your job is probably better than an office job, as I would imagine your pain would be more if sedentary all day, I work for myself and my job is standing.
Icy

Registered:
Posts: 428
Reply with quote  #37 
Hello 90awk

I am really concerned to read your story. I think the medical profession are very easy at covering up things - I had a lot of incompetence and lies myself many years ago following a cystocopy - even went to a tribunal at something blatantly obvious it was their faults and yet they covered as much as the could.

The fact you said you felt something different when you came round from the operation is a clear indication that something was not right. You know your own body - we all know exactly how our body feels and when something is different.

I think you need to take this up at a very high level if you feel able. You need to get all your medical notes from the hospital and ask them that you want to come into the hospital and view them (presumably you were under the same hospital for all your treatment so notes will be together).  You need to thoroughly go through all the information relating to your surgery and find out the name of the person that did this surgery.  

It is not enough to be ignored by nurses or anyone. And as for your consultant saying 
 that that was what he expected to see on an MRI after a discectomy is not right at all. At the end of the day you went in with something and came out with something worse. There has to be some kind of investigation into what was done and why you immediately noticed something different in your body.  It is your body and you have the right to know what happened and to make an official complaint if you really are concerned.  

People complain all the time and you are certainly justified in doing this. Not only that, by complaining at an official level it makes people accountable but also it will make them take far more notice of you and do their best to help resolve the situation for you now. It's clearly been a time lapse but this often happens because you are waiting for things to get better. But there will be a record somewhere that you went back after 5 days to A and E.

Hard as it is and it is a very traumatic and daunting experience to have to make a complaint, you should do it. Try to write everything down in good order and the history and exactly what happened at the time. Maybe you can get someone to help you formulate the complaint so that you get all your concerns down and say the time has now come for a complete review and thorough investigation as to your case.  There may be some legal help you could get or advice. It certainly is worth taking on board some legal support in this (though don't get caught up in a lot of money). You could just also do with some kind of representative in all this.

I just think it is important to muster up the courage to do this. If you have got some documentation and written letters from the time get those together and get any letters from your GP but at the same time get absolutely everything from the hospital. Every patient is entitled to see all their notes - don't say what it is about - just say you have decided to review all your notes and that it is your right to see them.




ModeratorKate

Moderator
Registered:
Posts: 1,588
Reply with quote  #38 
Hello 90awk and Buddy
Welcome to our Forums, I am so sorry to read of your discomfort,I am sure you will find information and assistance, in helping you understand your continuing problems.

Please consider becoming a Member of COB ( see link below) as the Office will not only send you but also your Doctor if you think it would help, a Welcome Pack which will have loads of more advice and support than we can possibly cover here on the Forum.
You can also always telephone our advice line for personal help, though there may be an answerphone, but I assure you some one will return your call.
There are many leaflets with specific advice as well as a lending Library of Books, maybe contact supporters in your area etc.

@90awk the Office also have a Male support advisor available to Members.

Do continue to post your messages throughout, the Forum and remember we are here to help and you are never alone, there is usually someone, who will understand and  have experienced similar problems to your self.

Kind regards
Kate









__________________

 


http://bladderhealthuk.org/membership/membership-benefits
Buddy

Registered:
Posts: 15
Reply with quote  #39 
Hi Kate, I have become a member. My pack has arrived and it is very informative.
Buddy

Registered:
Posts: 15
Reply with quote  #40 
Pressed to soon sorry. I am sure it is very simple, but how do I start a new thread, lots of questions to ask. Many thanks.
ModeratorKate

Moderator
Registered:
Posts: 1,588
Reply with quote  #41 
Hi Buddy
Pleased you have become a Member am sure you will discover so much more through the Office and through the delivery to you of the quarterly magazine.

Start a New Thread..Clcik on Forums (at the top) >select a 'Forum'>(i.e)' Overactive Bladder'
along the top to the right you will see NEW TOPIC click
and you will see an empty box for you to complete with
'Topic Subject' then beneath write your question information etc.
SCROLL to bottom and click SEND.

Hope this helps if not ask again .
Kind regards
Kate

__________________

 


http://bladderhealthuk.org/membership/membership-benefits
eye_spy2

Registered:
Posts: 7
Reply with quote  #42 
Hi there. I'm a 35 year old male who has not been formerly diagnosed, and I'm a little lost on where exactly I sit.

I've always had a slightly nervous bladder but generally I go to the toilet and it recedes. Part way through a trip to America it became constant (after relieving). Since then it is particularly irritated when in nervous situations. Not ideal given my job! It's got to the stage where I will probably leave my job as I can no longer carry out my job remit.

I get urgency when I am in a nervous situation and the urge just continues. I go from urinating lots retaining. I should also say that I have had IBS for 14 years also. Actually at a loss as how to control it. I have not wet myself since I had an incident in school when I was 14. This might be the early trigger.

Due to an inability to fly I was given oxybutin to stop me retaining and encourage me to go whilst flying. Not sure if this has what led to it becoming a constant issue in most nervous situations.


Hopefully I posted in the right place.
ModeratorKate

Moderator
Registered:
Posts: 1,588
Reply with quote  #43 
Hello eye_spy2

Welcome to our Forum,I hope you will find much to assist you, while you wait hopefully for a response from our Members, do have a look at what the COB Website discus reference Over Active Bladder,

 http://www.cobfoundation.org/overactive-bladder

If you scroll to the bottom of that page you will see that we have an advice line, who may be able to put you in contact with a supporter nearer to you, also if you become a Member the office will send you a very informative welcome pack,and you will have access to so much more than we can offer here,and you could converse with our Male advisor.

I am going to copy your post further down on the OAB Forum, with the hope some more Members will read and be able to help you.
This is such a debilitating dis-ease, but please do keep posting as we all truly understand your confusion and symptoms.
Kind regards
Kate 


__________________

 


http://bladderhealthuk.org/membership/membership-benefits
eye_spy2

Registered:
Posts: 7
Reply with quote  #44 
Thanks Kate

It certainly is. Only been in my job a few weeks and it's looking doomed. Work in social work so its hard to destress. Hopefully I get somewhere with it [smile]. At present its only affecting work and certain uncomfortable situations. Trying hypnotherapy at the moment.
zena

Registered:
Posts: 87
Reply with quote  #45 
Hi,
I am seriously thinking of having Hynotherapy in the New Year.The therapist has never treated anyone with IC or Overactive Bladder before but is prepared to give it a go.She has had very good results with many other difficult problems.
She just gives 2 sessions with  follow up instructions and a CD.
I would be interested in how you have found Hypnotherapy please.
I do try very hard to control this horrible debilitating condition  than let it control me.

Best wishes,

Zena
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

 Teva UK Ltd Abena.co.uk
This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

BHUK is not a medical body & do not claim to have medical knowledge. It is not the intention of BHUK to provide specific medical advice, but to provide users with information to better understand their health & to manage their suffering.

Specific medical advice will not be provided & BHUK strongly advises that you consult your GP/Consultant/Urologist for professional advice.

We would hope that users of these forums will conduct themselves in a courteous and respectful manner. Any conduct not consistent with this standard will be deleted immediately and the poster may be restricted and/or terminated without warning.