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[Judith57]

I did have a cystoscopy about four weeks ago and everything was fine. I need to go to Harley Street this afternoon to have a scan on my left ovary as it is a little enlarged and to be honest I am fearful of leaving the house. I don't think it is my poor bladder giving out the 'urge to go' I think it is a problem with the pudendal nerve - undiagnosed as yet but all the symptoms seem to fit...I go to see a condultant who specialises in this condition in two weeks.

I am desperate for a wee but when I sit down I have to really force it out and then still need to go when I have finished - basically the urge for a wee NEVER goes!!

It is all so depressing. I will carry on drinking a lot of fluid and hope the damned nerve swithches itself off soon...

[Taz2]

Are you sure it's not interstitial cystitis Judith? This can have very similar symptoms to the pudendal nerve syndrome especially the constant feeling of needing to urinate. Have you been referred to a urinary specialist such as the continence advisory service? The staff at these units are excellent although the tests are rather embarrassing but all done with discretion and good humour.

There is advice here about IC http://www.womentowomen.com/urinary-incontinence/interstitialcystitis/

Taz x

[Judith57]

Hi Taz, unfortunately I was in such a tizz this week I missed my appointment with the urologist - I got confused over which day I was supposed to take my urine sample in and which day my appointment was. I was supposed to take my sample in on Day 12 of the antibiotics, which was Monday, and I thought I had made the appointment to see him for Wednesday but the appointment was for Monday -at about the same time that I was providing the sample so I was at the hospital anyway! I was so cross with myself. Anyway, I spoke to his secretary and she has told me that the test came back clear and I have an appointment for next Thursday. I tend to think it is the pudendal nerve as I have other symptoms that I don't think are present in IC - really bad burning pain in my vagina - like sitting on razor blades sometimes or a hot poker at other times, and I find it extremely uncomfortable to sit down! I am in touch with another lady on this site who has the same symptoms as me - although I don't think her bladder symptoms are the same - and she has been daignosed with PN.    However, I suppose there is a chance it could just be VA - on Day 13 now of initial Vagifem loading and Elleste Duo but no relief yet. This whole nonsense started after I had sex with my partner in February and he did remark that I seemed dry and I am beginning to wonder if I sustained some sort of nerve injury 
A trans-vaginal scan did pick up a slightly enlarged left ovary and I am going to have a more detailed check on that this afternoon.

It just seems as though the nerve that switches on the urge to wee has been turned to ON and I can't switch it off!

Judith

[Taz2]

I hope you get it sorted soon.

Vaginal pain is common with IC and also pain in the urethra. This is from the Urology Care Foundation's website

"The symptoms of IC vary for different patients. If you have IC, you may have urinary frequency/urgency or pain, pressure, discomfort perceived to be from the bladder or all of these symptoms.
Frequency is the need to urinate more often than normal. Normally, the average person urinates no more than seven times a day, and does not have to get up at night to use the bathroom. An IC patient often has to urinate frequently both day and night. As frequency becomes more severe, it leads to urgency. Urgency to urinate is a common IC symptom. Some patients feel a constant urge that never goes away, even right after urinating. While others with IC urinate often, they do not necessarily feel the urge to go all the time.
IC patients may have bladder pain that gets worse as the bladder fills. Some IC patients feel the pain in other areas in addition to the bladder. A person may also feel pain in the urethra, lower abdomen, lower back, or the pelvic or perineal area. Women may experience pain in the vulva or the vagina and men may feel the pain in the scrotum, testicle, or penis. The pain may be constant or intermittent."

It may be worth keeping IC in mind as the pain, together with the bladder symptoms, can be indicative.

Taz x

[Judith57]

Thank you Taz - perhaps you are right and it is IC. Another thing I have noticed is that I can't really empty my bladder fully unless I stand up and wee - this is all so depressing!

Would there have been any indication of IC when the cystoscopy was done - I was told that my bladder was normal.

Did you have IC? Have you got it under control?

Judith

[Taz2]

I don't have IC but a close friend had it around ten years ago. She is on HRT and had a bladder stretch which gave her great relief. I was referred for urodynamic testing due to stress incontinence and this sparked an interest in how the whole urinary system works. I have fibromyalgia and IC is often part of this which is why I was referred by my GP. I do suffer from urinary symptoms from time to time.

The cystoscopy would be used to rule out other things such as a growth in the bladder or a kink in the urethra - it's a case of eliminating everything else before settling on the diagnosis of IC I believe.

Some people get relief from a tri-cyclic antidepressant which works on the pain - it's a lower dose than would be used for depression.

Taz x

[Judith57]

The urologist did mention trying amitryptyline which I have had before in the past - when I had fibromyalgia-type symptoms,

Judith

[Sarah2]

A normal cystoscopy would not spot IC- they need to do it under a GA and put in a lot of fluid to see if the bladder walls bleed.

Some people find this helps but others find it makes it much worse as it creates more tears in the lining which can take time to heal.

If you find it hard to empty your bladder you might have a small bladder prolapse which affects the angle - have you been examined by a gynae to see if this is the case?

[Dancinggirl]

Hi  Judith57
I had a cystoscopy recently and they filled my bladder full of fluid and I could see the images the camera was looking at of the inside of my bladder very clearly. The walls of my bladder looked sort of OK but the urologist said it is very difficult to be certain where any bleeding was coming from.  In my case it may be localised to the urethra.  I understand it is quite common to have blood in the urine particularly post meno.
A cystoscopy is very routine and I found it reassuring to know there weren't any real problems (I've known a couple of people with bladder cancer which is very nasty).
My bladder definitely held a bit more after the procedure.  I even let them stretch my urethra which seemed to help urine flow - however this benefit was short term.
I am using local oestrogen now as I think I've had untreated VA for quite some time.
I now start each day with a big glass of water and make sure I have regular gulps of water throughout the day. I'm usually up at least 3 times each night - it seems as though my body stores up all the fluid during the day and then fills the bladder through the night!!!!
Do get everything checked with the urologist for peace of mind.  It sounds to me as though you have VA and that can take time to be resolved with local oestrogen(up to 6 months). I've had the burning urethra and vaginal dryness for over 15 years and I was on full HRT most of that time (due to early meno).  I am really cross that doctors didn't give me local oestrogen earlier.
Good luck  DG x 

[Judith57]

Hello everyone, thank you for all your advice and Dancinggirl I have been reading all your 'burning' threads with interest and they sound so much like me....glass of cold water between thighs etc...

So an update, just back from Harley Street - I was dreading leaving the house as I had been weeing for England before I left this morning and started to get into a panic on the way to the station. Anyway, the walk to the station seemed to ease everything a bit although I chose to stand on the train and the tube. I started needing a wee while sitting down waiting for the scan but that was OK as I had to empty my bladder anyway. The scan showed nothing on my ovaries but a small fibroid on a stalk on the outside of one of my ovaries. The Doctor said it would not be causing any symptoms at all.

I am home now - haven't had a wee yet but am having a glass of tepid water with bicarb - I had two this morning. Sorry if this is too much information guys...

The problem definitely seems related to my posture - that's why I am worried it is nerve-related. As soon as I sit down or lie down I need a wee - anyway I have a follow-up appointment with the gynaecologist tomorrow morning and I will tell him everything that is happening and see what he suggests.

By the way, I have now resorted to sitting on a blow up travel neck cushion. It is helping the burning urethra.

Judith xxx 

[CLKD]

Any relief you can get, go for!  It can take time to sort out the whys and wheres of symptoms    which can be tiring and distressing.

 

[Judith57]

Been to see the lovely gynaecologist this morning. He confirmed that the fibroid is not the cause of my current problems, that I have probably had it for years and, if anything, it would be smaller now. He is referring me for uro-dynamic testing - sounds fun but needs must!!

He is still confident that the burning in my vagina will be resolved by the vagifem but told me to carry on with one a night (the initial two-week loading period ends tonight) as the dose is much lower than it used to be and I may not be getting enough. I wish I could be as confident as him.....

Sitting at the computer now and I can feel the burning starting to build, oh for the old days when my life was not ruled by my fanny/bladder!

The gynaecologist said these problems are very common in women of my age. He then asked if sex was painful - he obviously has no idea of how bad things are if he thinks I can even cotemplate sex - was quite funny really!!! 

[Taz2]

Did you ask about IC or the pudendal nerve Judith?

Taz x

[Judith57]

Hi Taz, he asked me if I had looked at any websites and showed me the over-active bladder website and said that it is a very good one. I have been on so many websites I have lost count! When I saw him last time I mentioned the pudendal nerve and asked if it could have been damaged during sex (when this whole nonsense started) and he said no. It is all so distressing as I was feeling very confident when I got home but now that I am sitting down I have the familiar niggling just behind my clitoris that starts the whole cycle off. I just wish I could turn the damned feeling off.

[Taz2]

Did he suggest what the clitoral pain might be? I've had urodynamics - it is a bit embarrassing to think about but fine on the day. It does give a really good idea of what is going on with the bladder.

Taz x