Is my body really weird ?

[ilovevinyl]

I've had horrific utis as long as I could remember, probably 20 a year and thought it was just normal to randomly get an absolutely raging uti out of the blue.

Recently had another kidney infection and my dr said enough is enough let's do a cystoscope, I had that a couple of weeks ago and honestly it was horrendous.

I was expecting a bit of pain but it was just awful.

Picture the scene, surgeon is scrubbing up, theatre full of people (women aren't anaesthetised for cystoscopes, men are), nurse comes along to me (with my feet in stirrups) and puts the numbing gel where she thinks my urethra is, can't find it. Second person comes along and tries to help, more numbing gel applied, third person comes along..

6 people in the end are fucking ferreting about down there trying to find my sodding urethra, bare in mind they're now using the actual cystoscope to try and find it.

They found it really high up inside my vagina and I don't know if the urologist got excited about finding it that he forgot I didn't have any numbing gel inside my vagina and just shoved the cystoscope in and did it with absolutely no pain relief at all. Fuck me it hurt.

However it turns out it's not meant to be inside your vagina and that's why I've been having so many utis for so long. I've been offered reconstructive surgery to move it to a more 'normal' place.

I've got a pre op on Tuesday what questions should i ask? My bladder was so scarred with infection and adhesions from previous infections it's probably not an option to leave it, apparently it should have been noticed at birth or shortly after but I'm 32 😬

That sounds deeply unpleasant. I’m sorry you experienced this. (Horrified at the different expectations for men & women and pain relief…. I would want a general anaesthetic for that!)
If your urethra is found near the opening of your vagina, then that is in the range “normal” female geography. If it opens deep inside your vagina (which results in your vagina filling with urine when you pee), then you have a urinogenital sinus.

Isn't it absolutely barbaric that men get the full anaesthetic and women get instillagel which is lube with lidocaine!

Ah yes he did say it was a urogenital sinus, I got a leaflet but he said it's rare to have a diagnosis so late in life, he said having sex is probably the main cause of all my utis although I don't always get one when we have sex, it's 50/50 really. I think my brain just went blank in the appointment and I didn't ask any questions at all 😳

This is probably a shock, then. I’m sorry you’ve only recently discovered this. I hope you understand that nobody is 100% “Normal”. (If they were, I suspect they’d be a medical aberration - or a cyborg.) I am very pleased that you have been referred to a urologist. I would also explain how deeply humiliating and extremely painful your experience has been so far and that you now have a high level of fear involved.

I expect that your urologist is going to suggest further tests to “see” or “map” your own personal geography exactly, so they can decide the best options for treatment. I would ask for reassurance that you can have these done with twilight sedation or a General Anaesthetic. I would ask if they have ever performed this particular repair surgery, and also about its success rate in adults. Other important factors are the complications and risks, and what is the recovery timeframe and limitations. (Ie bed rest, time off work, etc…)

I recently had a rigid cystoscopy under a general anaesthetic. I'm sorry you went through that, without anaesthesia. It sounds horrendous. Good luck for the surgery 🍀

I would be thinking of questions around quality of life now vs quality of life after surgery. Additionally, are there any other options to manage your symptoms (quite possibly not but do ask) and are there any longer-term risks (e.g. is this a permanent fix or could something else crop up down the line as a result of the condition or surgery?)

Oh and if your bladder is scarred and has adhesions does this mean anything longer term for your bladder health? Are there any healthy bladder habits you should be adopting?

Sounds awful, sorry for your experience op

Sounds awful, so sorry. Frigging Dr's are so blasé about these procedures, not realising how traumatic they can be.

I'm never having anything down my throat again <shudder>

Goodness me @ilovevinyl I’m so sorry you went through such an awful ordeal. It’s just not on, how you were treated.

I sincerely hope that going forward you get better treatment. Good luck with everything. ❤️