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Old 03-20-2009, 04:01 AM   #1
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Kertie446 HB User
Good Urogynaecologist/Urologist

Hi, everyone

I would like to ask if anyone could recommend a good urogynaecologist or urologist as I am not currently happy with the current one I have as he just passed me off onto someone else without even telling me and then did not even bother to call me back to help me or give any advice on my current problem. I am really struggling to be optimistic right now and have had this problem for more than six months and I just cannot live with it any longer.

I am in the UK by the way just to let you know.

I would like a urogynaecologist/urologist who is reliable who does what he/she says, is helpful and never passes patients off onto someone else just because and always rings back whenever you have a problem.

Many thanks and kind regards.

Niad

 
Old 03-20-2009, 06:01 AM   #2
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atwitsend321 HB User
Re: Good Urogynaecologist/Urologist

I don't have a suggestion, only a comment as I live in US. Sorry to hear about your dealings with the urologist. Why are you in need of one? My 13 yr. old daughter has seen one female uro who didn't do anything but change medication and say "this is really perplexing" when we described what was happening to her...we switched to a pediatric uro and have yet to actually meet the Dr....only dealt with the nurse practioner so far. I will say that she is doing more than the first uro. Finally had ultrasound, charting of urination patterns and BMs and has tried to schedule a video urodynamics test (machine has broken down and will call as soon as can get her in). Sometimes I feel as though her problem is falling on deaf ears. Very frustrating.

 
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Old 03-21-2009, 10:19 AM   #3
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Kertie446 HB User
Re: Good Urogynaecologist/Urologist

Hi, atwitsend.

I have urinary retention that is chronic and started at the end of August last year for no apparent reason, though it is suspected to be linked to my spine degeneration (I am 20 years old) but it all started after a session of physio on my lower abdomen which I do think is what could have caused this retention as the urinary sysmptoms started about 24-48 hours after that session which seems to me to be too much of a coincidence.

The two tests I had were abdominal ultrasound and urodynamics which showed a large post void micturition residual.

They have now sent me to self catheterise without even showing me how to do it! But also they do not know why I have this retention. They are just guessing. They have said that they do not know why I have it or what has caused it.

Me and my mother are not happy that the surgeon, when asked to call back as I am really struggling right now with this self cathing thing and generally emotionally as I do not feel happy doing it as it is too painful and stings like hell, did not even bother and has left us in the dark.

We think that I could have endometriosis as her sister had this and it is well known to be hereditary and the fact that I have all of the symptoms it causes - frequent loose stools, urinary frequency, urge sensation, periods that last longer than they used to, heavier periods and severe pain with them, including severe stomache cramps that also feel like a pulling sensation, particularly on the right side and severe sciatica that only mainly is there when I am just about to start my period and while I am on it and for a little bit after it has stopped.

The spine surgeon I saw said there is 'nothing' wrong with my spine and that the degeneration is normal! I am not really sure entirely who to believe but maybe my back pain is actually caused by something else - endometriosis. It's certainly a possibility as all the other symptoms are matching it.

I think that I should have had more tests/investigations before even attempting this self catheterising as it may not be the right treatment if endometriosis is causing this. I saw my practice nurse and she said that she does not think it is the right thing to have to do and thinks I too should have more tests/investigations. A laparascopy would be a good idea and perhaps a cystoscopy too.

I am not happy that this urogynaecologist just sent me to someone else and never even bothered to call me back as if he thought that I was insignificant. I personally think it is not on.

I would have thought he would have cared about his patients and done more investigations if he would have even bothered to contact me as if they do not know what is causing this then they should not really try to treat something they do not know about as it could do more harm than good in my opinion.

I am not a trained clinician so really I should not be expected to try and treat myself as that is just asking for trouble as I could damage my urethra and I have heard of this happening even though they told me it would not do any damage!

This is why I have decided to go and see someone else as, perhaps I have just been referred to the wrong or perhaps incompetent urogynaecologist who does not care for his patients and passes them off to someone else due to not wanting to be committed.

I am also sorry to hear of your dealings with the first uro. The part where she said "this is really perplexing." is terrible and I have had doctors and consultants speak to me and make strange comments similar to this in the past and I just do not think I could ever really truly trust any doctor or consultant after the sort of abuse they have given me.

Hopefully your paediatric uro will sort things out and finf out what is going on. It does feel like problems are falling on deaf ears quite often as that is hat I am feeling like right now. I know what you are going through with your daughter and hope that you and her get an answer soon.

Many thanks for your post and good luck.

Kind regards

Niad

 
Old 03-24-2009, 05:53 AM   #4
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atwitsend321 HB User
Re: Good Urogynaecologist/Urologist

I pray that you find some answers and that you will find a Dr. who will listen and do all they can to figure out what is exactly wrong. Do all your Drs. communicate with each other?

My daughter is having a video urodynamics test done on 3/26. None of the "over active bladder" meds are helping. I am now wondering if she has endometriosis also. She originally went to the Dr. on 12/18/08 for freq. urination...diagnosed with UTI....but at the same visit she was put on orthotricyclene lo to help regulate her period....she had been on it continuously for over a month and it was heavy. I have posted a couple times on here (Daughter has frequent/urgent urination and Could birth control pill cause frequent/urgent urination).

She has recently complained of lower back pain off and on...told the uro about this too. The symptoms you describe sound very similar to my daughter's. She just started having her period about a year 1/2 ago. She was very irregular and had very heavy and long lasting periods....I was the same when I was her age also (only I did not have any problems with frequent/urgent urination) and her older sister was put on birth control at age 12 to regulate her periods...same problem but again without the frequent/urgent urination.

She is unable to go to school due to the fact that she is constantly in the bathroom....it started out only having this issue a couple days out of the week and now it is an everyday thing. Her school has finally set up sessions with tutors to help her get caught up and hopefully pass the 7th grade...she has a twin brother and I can't imagine what it would do to her if she were to repeat the 7th grade because of this.

I can't believe what you are going through with the self-cath....how could they not "teach" you???

Here's hoping for competent physicians for you and my daughter...there has to be an answer out there!!!!

 
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Old 03-25-2009, 05:31 AM   #5
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Kertie446 HB User
Re: Good Urogynaecologist/Urologist

Hi, atwitsend.

As far as I know they do not communicate with each other as the urogynaecologist does not even know about me as he passed me onto his other member of his team (one of his registrars) rather than seeing me himself as he did not have time for me. He does not know anything about my problem or what his registrar has done to me (self cathing). That says to me that neither him nor his registrar communicates.

The other thing I found amazing was how his registrar got the measurement of my post void micturition residuel incorrect - He noted it as 30 something mls when actually it measured at 80 something, nearly 90 on the ultrasound device. To me this tells me that perhaps I am best see someone else as this is just awful negligence, though only a small thing, it certainly could have been a life or death sort of thing.

This so called urogynaecologist still has not contacted me which just goes to show how much he really cares after two or so weeks of waiting! A joke.

I am getting depressed and feel alone, as even my family are not really able to do anything. I am the only one that sorts it out. I am just finding it so difficult right now and don't know how I am still sane!

I spend more time on the phone than anything else and it really shouldn't be like this in my opinion. They, if they care for their patients (which my urogynae clearly shows he doesn't), should be doing this.

I've had so many bad experiences with docs and surgeons that I don't really know why I bother as I just keep getting nowhere. It's as if they want me to give up as they think I'm a waste of time and space.

I really cannot cope anymore as I cannot even insert the catheter without wreething in pain. It hurts so much to do it and I'm beginning to think of not bothering with this self catheterising as it is just so painful to do. They didn't even offer numbing cream as they said I don't need it and that I need to feel it! Crikey. I'm just not going to do it anymore and wonder if there is a better alternative than this painful procedure that I have to do on my own every night! It's so horrible as it makes my urethra so sore and tender. I just cannot bring myself to do it anymore. It's ok once it's in but with self cathing I have to take it out again and put it back in again and so on and it is more painful than just leaving one in properly.

My GPs told me to take this medication called Vesicare which is for overactive bladders and I found it made me not be able to go. I do wonder now if these GPs really know what they are doing as when I read the leaflet it said that I should have been tested for any retention like I've got before even being put on them! Next time any doc or surgeon tries to prescribe me something I think I'll just refuse it as they are making me more ill than ever. I stopped taking them without my doctor's consent as I knew what I was doing and that it wasn't the appropriate medicine to be taking without having the proper tests first. I did, after that, come to think I had some form of retention even before the docs knew!

I'm not sure if the BC pill can cause frequency or urgency but I would think maybe it's possible. I'm not on BC but have wondered if this might be a help if it is endometriosis. Medication can have various side effects. The possible side effects are usually listed in the leaflets. Did the urogynaecologist say anything about BC and frequency/urgency?

Endometriosis can cause lower back pain which is why I am considering having a laparascopy to find this out and the fact that I have a family history of endometriosis. I'm surprised my urogynaecologist didn't take this into consideration. He just sort of went onto something else!

Endometriosis can also cause bladder problems such as frequency and urgency, particularly if it is growing on or near the bladder. A laparascopy is a good way to find this out but also a cystoscopy is good for seeing inside the bladder to find out if it has grown actually inside the bladder itself.

I too started with this bladder problem only a couple of days out of the week but then it was constant and now I have it continuously every day and cannot even sleep due to the stabbing pain on the right side of my lower abdomen and bad frequency. It never goes away. I'm just so tired and fatigued I'm beginning to feel ill and cannot concentrate for long anymore.

I am lucky that I am studying from home on one of these distance learning courses at the moment as I know that I will never be able to travel or even go to work with this problem currently, as, like your daughter, I'm in the bathroom most of the time and have to go at least every hour!

I feel sorry for both you and your daughter as it is awful when illness interferes with life and the fact that she is still suffering with such a frustrating illness.

I know how horrible life can be when illness strikes and goes undiagnosed for months or even years as that is what has happened to me and is happening again. I feel like I am going round in circles again and again and again...

I hope you daughter does well in school and that she gets the right help from the urogynaecologist/urologist.

I cannot believe that they didn't bother teaching me how to self cath either but I don't think I'm going to carry on doing it as it's just too painful. I'd rather have one put in properly as it also doesn't let me get any more sleep as I have to keep getting up at least once to do it again in the middle of the night which is extremely inconvenient and painful. I so hate it when these docs say that cathing doesn't hurt and that I won't even feel it. I have to say, I never really believed them!

I have to say it is certainly a gold dust rush to find a competent physician as I have found out all too often. I've gone through loads for different health problems which, sad to say, are still undiagnosed and unresolved.

Hopefully we get lucky and land in the right place at the right time. I totally agree, there has to be answers out there, it's just finding them and the right physician who wants to actually help us.

Many thanks and kind regards.

Niad

 
Old 03-29-2009, 12:53 PM   #6
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atwitsend321 HB User
Re: Good Urogynaecologist/Urologist

hello Niad,
How are you doing? My daughter had the video urodynamics test...muscles are working properly...now going the next step and having a cystoscopy....don't know when though. We, of course, finally met the actual urologist...had plenty of time to talk to him as I was in the room when the test was being performed. I actually think that he will do his best to figure out what is wrong. It sure helps to have direct contact with the Dr and not just the nurse practitioner relaying what is going on. (although the nurse practitioner is very good). It sounds like he is going to stretch her urethra at the time of the cystoscopy. This is what I had originally asked about because I had others tell me that their daughters had this done years ago when they had frequent/urgent urination problems. Supposedly, this is no longer a common practice due to some studies that showed it wasn't effective...that's funny, the Dr. also said he has had many mothers come in and say they had it done when they were young and it worked for them so why not do it on "my child". He stated that there are Drs who occasionally still do this but they do not write papers etc. about it. I think that the pharmacuetical companies who are manufacturing all the overactive bladder meds had a lot to do with those "studies". I just pray that this will be the answer for my daughter. I asked her what she would think if this finally ended her troubles and she replied that she would be soooo happy but angry too because that is what I had suggested over a month ago. If this doesn't work, we'll be looking into the endometriosis theory too.

Have you been able to find a competent Dr yet who will at least teach you what you need to know in order to self cath without pain????

I hope you are getting some rest...I know what it is like to live consistently on interrupted sleep.

You said you are taking classes at home. What are you studying?

Again, my prayers are with you. Keep me posted.

Last edited by atwitsend321; 03-29-2009 at 12:56 PM.

 
Old 03-30-2009, 03:47 AM   #7
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Kertie446 HB User
Re: Good Urogynaecologist/Urologist

Hi, atwitsend.

I managed to get this urogynaecologist to actually and finally ring after many phone calls later!

I talked to him about the endometriosis thing and requested a laparascopy to find out if that is what it is as, although he does not believe I have endometriosis even though I have a family history and, from what I read the classic symptoms, he will consider doing it if that is what I want and I have said to him to go ahead, as really he cannot ever truthfully say that I have not got it if he has not even done a proper thorough test to check.

I would have thought also he would have done a cystoscopy but I will mention it at my next appointment.

On the self cathing, he said that it was not really going to 'cure' my bladder problem, only treat symptoms so he said if it is that painful (which it is) he said not to bother with it. I do not know what other treatments are available but I suppose that will be based on the final and correct diagnosis which they are taking a long time to do in my opinion as I have had this for 6 months and the rest and it feels like years. Basically his opinion is that if it is hurting that much then it is doing more damage than good and it's a waste of time so onto the next thing maybe? I'm not sure...Strange as his registrar said that self cathing will 'cure' it but he says otherwise? Who is right? Though actually me and my mother thought it was a bit strange after I said that self cathing is actually usually a long term chronic treatment.

I am as bad as ever regarding the symptoms and it's just awful as I don't really know how to treat the symptoms painlessly.

My urodynamics showed, according to his registrar, who I actually don't trust as he got my results of one of the tests wrong and said it was 30 something mls not 80 something mls (80 something mls was actually the real one), that my bladder was lazy and I had weak muscle tone and that medication would only make it worse.

Sounds like you've found a kind and professional urologist who actually makes an effort to even see you himself which is nice as mine didn't. He saw all the other patients himself, except me! I will actually have a bit of a few words to say to him when I see him about that as I thought it was disgraceful personally.

Sounds like the urologist actually performed or observed the urodynamics test too. Mine didn't. I had a nurse practitioner specialist do it and there was only a technician lady who didn't speak much to me at all. They also didn't let anyone come in with me. I had to do it on my own which was a little scary and traumatic.

My urogynaecologist hasn't even got to any form of treatment yet and that's saying something! He's still on trying to find a diagnosis!

I really think your urologist sounds a nice person and it's a shame that perhaps he isn't in the UK.

I may mention this urethral stretching as it is worth a try as I haven't really got anything to lose. I'm suffering so bad now that I'll pretty much go with risky stuff even! It's gotten to a point where I know I'm never going to recover without something invasive perhaps.

I would feel so happy to get rid of this burden that is my bladder problem as I can't do anything anymore without being fatigued and going to the toilet a dozen times! It is actually making me depressed as I can't cope with this continous sleep disruption and it is making my head forgetful and concentration very low.

I am willing to have a proper catheter fitted for night time as at least I may get some sleep! Though for some reason they aren't bothering with that, only the painful and frequent self cathing! Stupid really.

I haven't yet gone to another doctor as because I've had a little moan to this urogynaecologist he seems to know that I mean business and am not happy with him so he's trying to do more tests from what he said and he better do it or else. I have to say it's funny how when you have a little chat to them about your 'true' feelings on the so called non-existent treatment they try and get in your good books again. I'll see what he does and let you know. He said he'll discuss the laparascopy with me when I see him at the next appointment.

I am a bit nervous at the thought of abdominal surgery though it's only minimally invasive small holes, it's still something I've never had done before. I've only ever had procedures on my teeth - 3 operations - one on my teeth to remove some milk teeth due to persistent toothache, one to remove some for a brace and the last one for removing two lower wisdom teeth. I've never had any operation on my actual body so am not sure what to expect, though I know it'll probably be pretty sore as it's on an area that moves a lot where the abdomen is.

Unfortunately I am not managing to get as much rest as I perhaps should be as I'm having to do housework, coursework and everything else that comes with family life! I don't honestly know how I cope but I suppose I have no choice in it. The only thing I can do is try and sleep at night as much as possible but having a proper indwelling catheter in would solve this problem and they still haven't worked that out! So frustrating really.

I'm studying Health and Social Care.

Hope your daughter gets some answers soon and a suitable treatment.

Many thanks for your post and I'll keep you updated.

Kind regards

Niad

 
Old 04-06-2009, 03:58 AM   #8
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Kertie446 HB User
Re: Good Urogynaecologist/Urologist

Hi, atwitsend.

How is your daughter?

Did they find anything out or try any new treatments?

 
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