Cystoscopy went horribly wrong..

[fannydagger]

I've had repeated issues with my bladder and lady bits ie constant cystitis and thrush and just generally grim things like incontinence which is fab at 28...

Had a cystoscopy yesterday and it went so wrong I'm so embarrassed at what happened and in a fair amount of pain. I don't know whether this is normal or if I should have said something / inform pals

So got on the table, I was not sedated for this as women don't need to be but men do anyway,

liberal use of numbing gel was applied to where the nurse thought my urethra was. But it didn't work couldn't find it.

Second nurse comes over and has a go, can't find it.

Third nurse tries: no luck

Doctor tries and asks for the three nurses currently ferreting around in my vulva for a fucking head torch and proceeded to go cave diving in my vagina.

She then asked for another fucking nurse to come and help and hold bits out of the way (!) I'm not even overweight so that was embarrassing

She asks for more numbing gel and then it was out on top of the previous lot so now my whole vulva is completely numb which is fine. Until she suddenly spots it inside my vagina I'm talking 2 thirds of the way up my vagina so not remotely where it should be and in her excitement of finding it she didn't use any numbing gel and just shoved the camera into my vagina and up into my urethra..

fuck me it fucking hurt bear in mind no one has spoken to me yet apart from asking me to confirm my name and procedure but they were talking about how odd it was to be so far up into the vagina and how different it was. They then asked if I would consent for some students to see as it's 'abnormal anatomy' and really rare to see a urogenitosinus

They then did the cystoscopy and it was 'normal' then the nurse said yep it's all fine you can go now. However now I'm wondering if the issues I've been having since I was a child are because of my 'abnormal anatomy' im not going to see a dr about my results as my gp referred me. And I got my results on the day.

I did ask about it but I was told they didn't know as it was pretty rare (!)

Wtf ?

My bits are on fucking fire. Actually as im typing this I'm not bu I'm going to complain.

Erm your urethra is not inside your vagina...they are completely separate

@GenevaMaybe no! Seriously! I know where it should be, but it was inside my vagina. They said it was a urogenital sinus? It was so embarrassing they were surprised it wasn't where it was meant to be

Jesus wept OP. That’s atrocious. I’m sorry you’re in so much discomfort and yes I would report what happened.

Have you googled urogenitosinus? I’ve never heard of it but you may well be right. I would go back to the GP.

It's hard for me to imagine how horrible this was for you. I'm a nurse and honestly, if you can't see the urethral opening first time, you look up into the vagina and that's where it'll be. This is NOT unusual at all, so why they all made a big song and dance about it I don't know. It must have been horrible to have them all there poking around.

I can only think that none of them was listening / watching when they attended the lecture about locating the urethra in a female patient.

I'd certainly complain. This should have been a very straightforward procedure, not a three -act performance with you at the centre of it. I hope you're feeling OK now.

You're not unreasonable to complain OP, that's a really disrespectful way to treat a patient especially undergoing an intimate procedure. I would ask your GP to refer you to a urogenital specialist who should be more knowledgeable about your condition.

You should complain. They should have numbed the urethral area when you found it. Sounds like it was the doctor you need to complain about in terms of not numbing the area. Contact PALS.
And it does sound like having your urethral hole in your vagina is likely causing you the problems you are--you need a referral to a genito-urinary specialist, however, I'm not sure what can be done aside from a major operation.
In terms of having babies, likely you'll need a caesarian.

Yes you should complain and push for a follow up b- this probably is the reason for your incontinence and needs fixing surgically.

That sounds horrific.

I think you should contact PALS and raise what happened and ask them how to complain - I hate it when doctors don't acknowledge that there's an actual human being attached to whatever part they're inspecting.

And it's all very well them saying that everything was fine, but that doesn't do anything about addressing the issues that you're having! The cystitis isn't going to think, "Oh, well, that doctor said she was fine so I'd better bugger off now!" In your shoes, I'd go back to the GP (with the additional information you now have) and ask him/her: now what?

Feel for you, btw - I have a retroverted uterus which wasn't spotted for years - years in which I had to endure nurses rooting around up there for hours during smear tests going "Ooh this is a bit tricky!"

Absolutely complain. I have a complex anatomy (double uterus). Doctors sometimes get so excited about medical “anomolies” they forget there is a patient on the table.

OMG, I know that this is not remotely funny but - GenevaMaybe, your response! Did you actually read more than four words of the OP? Literally the whole point is that her urethra is in an unusual place and the only thing you bring to the discussion is to patronise her about her knowledge of (her own) anatomy!

I’m glad you’re going to complain, OP, PALS is a good place to start. You were treated awfully, both at the start when you were like a travelling sideshow, and then leaving you in pain without the proper care being taken.

I’d also thoroughly recommend you go back to your GO and pressure them to figure out the next step - you’ve had a cystoscopy, it’s found you have a urogenitosinus but the scope itself was clear. What next?

Terrible! Surely they're trained to deal with unexpected results during examinations! To do that to you is unacceptable! I hope you are ok soon.xxxx

Please do complain, that sounds horrific and so unprofessional. Hope you're okay

Thank you. I feel empowered now. I'm going to try and get a gp appointment and ask them to refer me to urology and see if they can shed some light on it.

I really did feel so violated as they were all ferreting around down there whilst I was lying there like a piece of meat.

I've had to catheterise women who have had the urethral opening surprisingly far up their vaginal wall (nurse). I've never made such a circus of the whole thing, you just follow a line from where the textbooks say it should be up until you find it. Very unprofessional. Even asking if others can come and see when you've already been messed around. I'd make a massive complaint.

I'm sorry your experience was so horrific. It's never nice to have intimate procedures in the first place and it seems the staff lost their empathy and understanding of that.

Hi OP I am so sorry about this and you should def complain - I am no medic and even I know some women have their urethras in the vaginal wall!

However just as you want to get facts straight for pals - cystoscopies don't necessarily require sedation or anaesthetic. I have had several at a national centre for excellence and they do not even use numbing gel. They told me that part right before they were about to start - thanks!! And it is the same for men there, so definitely not that men get sedated.

Anyhow def complain but focus on the lack of clinical knowledge, the indignity, and the fact you weren't offered appropriate pain relief after.

OP, sounds horrific. Seconding the advice to get a referral to urology.

So sorry you had to go through this. I have had a couple of cystoscopys and they were totally painless.

However I still had problems and it was eventually discovered I have a colovesical fistula which also sparked unwanted interest in my 'bits' As a PP said sometimes the docs etc get so interested they forget the person attached to the anomaly.

@fannydagger that's awful, please act immediately! Would also make sense why your having issues! 

@GenevaMaybe did you read the OP?

GenevaMaybe Seriously?

You need to keep the pressure on now to get sorted. If you do nothing they will do nothing and your problems will continue.

You need corrective surgery but yes, absolutely complain.

I’ve had this performed. It hurts. The nurse tried to hug me as it was happening so I had to flap my arms to push her away from me as it felt like she was holding me down and making it worse, then she tried to hold my hand.

It hurts, I have a chronic pain condition and had drugs left over from surgery so I took these prior. It still hurt, even with the drugs. I googled this prior and medical professionals still don’t offer pain relief. Even if you ask for it. The pain is over very quickly though. It felt like a violation when the surgeon swabbed all my bits with alcohol so I wouldn’t get an infection & he went right up into my vagene to swab. So I can understand what you’re feeling.

Mine was a straight stent removal. But it hurts and it’s uncomfortable. It’s a sting, followed by a sharp pain that takes your breath away and then a pulling pain. Once it’s out it’s just a burning pain.

Thankfully mine was the last surgery of the day, no one cared about my vagene and afterwards I only bled a bit.

I’ve had Pap smears where they needed to bring someone else into the room (the pill can cause lesions on the cervix which need to be looked at by a doctor). It was embarrassing but at the end of the day it’s just medical.

Don’t worry too much. I’m sure they don’t care about your vagene.

I’m so sorry for you! Awful to be treated like this.
I’ve been stared at by students looking at my intimate areas and I have been badly affected. I’ve never complained but yes you should.
The nurse who commented above is so lovely. A really kind person.
I hope you feel better after formulating your complaint. And I hope you get your physical issues sorted too. Definitely ask for a specialist referral.

I am so sorry that happened to you and I hope you go see the gp about the pain.

But if a different story, in 2015 I had one of my eyelids suddenly droop and vision went double. Went to see gp last appointment of the day who looked very panicked and send me off to the hospital the next day very emergency scans. After having head ct scan and was in the waiting room for the results, a got called in by a specialist who was then followed in by about 5 very sullen looking doctors.

Obviously at this point the worst starts going through your head, wondering what rare brain growth may have been seen. Even when I went in with my mother, at the time trying not to cry and just picturing my children worried I was going to have to stay in or worse, the consultant got me to do a load of strange neurological tests including looking up into the air for a minute and then when I looked back at them I couldn’t open my eyes. As everyone looked worried and took notes and my mum started squeezing my shoulder, also thinking the worst, the explained that it looked like I may have a rare condition called myasthenia Gravis (I do as it happens) and as no one had ever seen a case before they thought I might be interesting for other consultants to observe, as they had studied it in medical school but no one had ever seen it.

Really I should have been fuming and told them that they should have told me/warned me before bringing me into a side room thinking I was actually dying and also should have asked my permission but it is like they forgot you are a human being, just some textbook case to observe.

Sorry, bit longwinded but really what they did to you was bloody disgraceful, unprofessional and I hope you complain and feel a bit less sore

I'm so sorry OP, that sounds really awful, and YADNBU to feel upset and violated.

I don't have any medical advice but I hope you can do something nice for yourself today to help feel better