Sign up Latest Topics
 
 
 


Reply
  Author   Comment  
CB85

Registered:
Posts: 18
Reply with quote  #1 
Hi all,

I had to post this because I am very upset about the past almost TEN months!

I have had cystitis for a very long time (since early teens). It got so much worse after intercourse last year (end of June) and has been the same since I.e. I have had severe cystitis for ten months without any cessation in symptoms. It's made me be off work sick and even have to inform uni tutors as I was going in and out of lectures for a wee. I have been in so much pain!

I have seen numerous medical 'specialists' - GPs (various) Sexual Health Practitioner and I have been under a urologist for nine months. I have gone through everything! Numerous urine sample tests, dip stick tests, sexual health tests, cystoscopy, CT scan - the next thing my urologist wanted was a MRI scan. 

Anyway I cannot actually believe it - I went to see a gynaecologist yesterday and within five minutes he diagnosed me with urethritis! YES I have been internally examined by both a sexual health practitioner AND my urologist who BOTH said I had a 'inflamed urethra' yet they didn't suspect urethritis - I even researched urethritis and urethral syndrome myself and took journal articles to my GP and they dismissed me!!! That was four months ago! The gynaecologist was confused as to why no-one had picked it and wondered why I had been referred to him? I am now on a three month course of anti-biotics that I have to take at night.

The past ten months have been HELL for me! I've been through a nightmare time and I am disgusted with the medical professionals who didn't listen to me! They even considered sending me to mental health services as they thought it was psychosomatic!

Rant over.....just wanted to say, if you suspect something please don't let people fob you off




__________________
CB :-)
Lou233

Registered:
Posts: 43
Reply with quote  #2 
Hi CB85

This sounds awful but there are so many similar stories on here at the moment. I too have been suffering since June last year-what are your symptoms please?

Thanks
JillB

Verified BHUK Member
Registered:
Posts: 214
Reply with quote  #3 
Hi CB85

I don't blame you for being hopping mad. You knew what you had but no-one listened; a ridiculously fundamental mistake, which really typifies much of what is wrong with many aspects of modern day medicine. Medical school teaches undergraduates to always listen to what the patient says about their symptoms - but I guess not many even 'listen' to the instruction!  It seems a lot of doctors would rather a patient continued to suffer than accede to patient knowledge and instinct.  It is disgraceful, and you are so right when you say be utterly persistent.  Why it has to be such a fight is beyond me.  It is a highly paid profession but seems not particularly accountable to the people it serves. 

Do hope you will feel better soon and please let us know how you get on with the treatment.

Jill  
Icy

Registered:
Posts: 428
Reply with quote  #4 
Hello CB85,

Yours is the second story of incompetence/poor treatment in just one day on this forum.  I do so hope this consultant is on the right track now and hopefully your treatment will work. But I do hope they are going to monitor you and not just send you away with 3 months of antibiotics. You will need follow up with the same consultant.

The experience of taking along a journal/paper/article  and showing a doctor who is then dismissive  is what so many poor patients experience.  Some doctors and consultants just cannot bear the thought of anyone being intelligent enough to do this and they don't believe "non-doctors" can research anything. The problem is that once out of medical school there is not the desire or commitment to research. You've got the well-paid job - there's no need to update the skills.

So astonishingly one will find "official" scientific proven documents in the British Medical Journal  or Lancet (all the most authoritative medical journals) from as much as 15-20 years ago which state certain things - then the doctors still do not want to believe them even if you take it to them.

 Recently I read in a library an article in an old BMJ about candida and the bladder and auto-immune diseases - but when years ago I mentioned this possibility to an immunologist (long before I found the article and yet is was written 18 years before)  they dismissed these ideas as rubbish, consultants did the same.  They were all ready to send me to a psychiatrist.  Fortunately years later, being able to stick it in front of their noses and make the point that it was in the BMJ - they listened.  But it was 15 years too late !!!!  There is so much good research sitting in the archives that we the public will never see unless we are lucky enough to fall upon it by chance.  This is where money is wasted.

I think you have extremely strong grounds to make an official complaint about those you saw who dismissed your concerns. Urethritis can be very serious and should not be ignored.  Unless people complain this kind of treatment will perpetuate.

 Sadly, even if medical students are taught to listen to the patient (and I would not be certain on that as generally they feel far superior to the patient - even the medical students sometimes)... they are not taught to question anything from their superiors and so wrong information is handed down from one generation of medical students to the next.  It's not well accepted for medical or other professionals to "think outside the box".  So that is how we end up being dismissed.

It is commonly said that men do not suffer Interstitial Cystitis - only women do. How crazy is that! What medical textbook could be so ignorant and what medical professional could be so stupid as to believe that. Men, women and children all have bladders and they are all made of the same tissue. We all contract the same conditions, no matter what sex we are and how young we are, we can all be sensitive to things like candida, have fungal overgrowth and have food intollerences - no matter what sex we are.   So - anyone can suffer urethritis, interstitial cystitis. In the USA there are whole clinics dedicated to children with IC and IC specialists.It beggars belief that mistakes like this are made when in the meantime the patient has gone through such a traumatic time. 

So basically there is just so much ignorance (and urology seems from the number of complaints on this forum) to be at the forefront of lack of knowledge - that it is totally astonishing. But we,  the patients have to do everything we can to put this right and those who dismissed you have to be accountable to you and all others they may have failed and who they will continue to fail if they carry on with the same neglect.  It's only by complaining that things will move on.

The incompetence of some doctors and medics just brings down the name of those who really are more caring and who work hard and who really research and are committed to helping their patients. There are some attentive and thorough doctors and consultants out there and let's hope the one you have found now and has diagnosed you can reach a few more people.

All the best.
CB85

Registered:
Posts: 18
Reply with quote  #5 
Thank you all for your replies. I do not have a follow-up with the gynaecologist no. The last letter I received was from my urologist saying all he could do was suggest a gynaecologist as he was at a loss as to what was wrong with me and maybe I needed an MRI.

I have an appointment with a specialist urologist now thanks to the suggestion of this foundation. I have to travel out of my area but I am willing to do anything to receive the care I require.

Lou233: my symptoms are pain when I urinate, stinging, sharp pains. Frequency (this comes and goes), urgency, intercourse is impossible, agony, sore, just severe pain. And inside I am swollen, this comes and goes too. 

I actually think I know more about my condition than the doctors do. When I complained yesterday to the GP surgery manager (who is also a GP) he said 'medicine is an art and a science, some GPs look for science i.e. facts and if they can't find them, when tests are negative they cannot conclude a diagnosis. Some GPs look for art, your gynaecologist used art and worked out what was wrong with you' - what complete and utter rubbish!

__________________
CB :-)
Icy

Registered:
Posts: 428
Reply with quote  #6 
Hi CB85,

Good grief - what complete and utter rubbish - that was a disgraceful comment.  So does this mean that depending on whether our GP bends towards science or the art of healing possibly ??? !!!! then it depends what outcome we get.  Well that is a worry to start with because the majority of doctors are science mad and will never contemplate anecdotal evidence about healing and they always have to go by their "scientific reports" and their testing procedures. But as we know most NHS is very poor and misses so much.   I would have been inclined to ask the GP whether he or she is a "scientist or sees medicine as an art ! A good doctor should be both surely?  just like a teacher would be !
Endoftether

Registered:
Posts: 52
Reply with quote  #7 
I feel at a loss with all this too - I have been told repeatedly that my flank pain is a 'muscle' issue. Yet, when I say it worsens as my bladder fills it is swept under the carpet and yes, it is in 'my head'. I have to take iron supplements at the moment for severe anaemia and the knock on effect is that I cannot walk for pain in the bladder and in particular the kidney/groin. Again the doctors I have seen say this cannot happen, so of course it must not exist. I look at the years ahead of me and cannot comprehend how I will be able to live with such a poor quality of life and pain. I am waking up to the fact this will never go away - it has hit me badly recently. I know there must be some doctors who care, but I have yet to meet one and have to say I have issues of trust, as I know if a course of action fails, it is I who will be in worse pain and the doctor can carry on with their life without a second thought.
CB85

Registered:
Posts: 18
Reply with quote  #8 
Endoftether - I urge you to call the foundation advice line and see if they can recommend a specialist urologist, they did for me and I have an appointment which is on the NHS. I have to travel but it is well worth it if he helps me. I am sorry to hear of your health problems. I too am on Iron tablets. My blood results for iron came back as level 4 in 2013. My GP only told me about two months ago because they just didn't flag it up. Yet another failing. Iron levels should be around 11 I think. 



__________________
CB :-)
Endoftether

Registered:
Posts: 52
Reply with quote  #9 
Thank you for the advice - I am due to see a specialist later in April. My ferritin is 3 and haemoglobin 9.3 both of which have come up. I think ferritin should be around 50. 
Sophia

Registered:
Posts: 516
Reply with quote  #10 
CB85

So glad that you finally have an answer for what you have been suffering the past 10 months and although I know you are angry (and rightly so - you've had a shockingly bad time of repeated incompetence) I would now focus all your energy on getting well - although I do think the other ladies are right and you should complain.  As Icy says this story is becoming all too common on these boards and they will continue to get away will this shoddy standard to service and care unless people speak out.

The reason I say concentrate on getting well is that I have spent most of the last 3.5 months raging against the gods for giving me a flare that wasnt down to my normal EC (and therefore easily treatable with a few weeks of steriods to put me back into remission) but down to embedded bacteria in my bladder for the first time ever.

I was so angry that I have had EC for 21 years but had finally got to a point where I was symptom free for 9.5 of the last 10 years and then this had to happen and worse still, I bought it on myself by having a bath in a dirty tub that was obviously full of bacteria lurking ready to invade my urethra and bladder.....

Anyway I digress........my point is that I had to let go of the anger and also the constant grieving for my life before this all flared up again and focus on the fact that I am grateful to be under Dr A and at least I know what the reason is for my symptoms and can be proactive about finding a treatment.

I had delayed starting abx as I hoped (naively) that my steroids would eventually settle it down but in reality steroids calm inflammation but they don't kill bacteria so abx are my best chance of getting my bladder back to how it was.

I still get choked up on occasion thinking back to my life before this nightmare started again but I have to focus on the here and now.   Keep looking back in my diary to what I was doing this time last year just makes me sad and tearful and that isnt going to help me get better.

I started the abx yesterday and I am thinking positively - I will get better - I know what the enemy is and its just a case of finding the right bullet in the right gun.

I wish you so much luck getting better and let us know how your appointment goes with the specialist.
x
skinnirib

Registered:
Posts: 8
Reply with quote  #11 
I remeber being investigated for supposed bladder issues 15 years ago. Nothing could be found and I was finally told by the last urologist to chill out!!!
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.


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.