Urethral pain and cystoscopy

[Rehab45]

Hi Again Friends

I'm sure a cystoscopy is on the cards for me now as I have had constant urethral pain with a short burn inside before urine is released every time I go. I also have constant pelvic ache that worsens when my bladder fills. This has lasted for 11 months now.

All xrays and scans have been clear including those of my bladder. My diagnosis so far is pudendal neuralgia and vulvodynia. The only investigation I haven't had is the cystoscopy.

Has anyone undergone the rigid cystoscopy under general anesthesia when you already have urethral pain? I am interested to know if the cystoscopy has made your symptoms worse long term and if it does affect the surrounding nerves...

I am interested to hear your stories before I undergo this procedure.

Thanks!

[Rehab45]

Should have added that I'm a 38 year old woman

[Nessie50 in reply to Rehab45]

I’ve had it done 4 times , although it burns a while afterwards it is a curative practice and the y stretch your urethra to clear any kinking and the flow is not hampered which in turn stops any residue build up which causes infection. It’s wortha try. On the other side of things as I’ve gotten older I realise it’s a nerve thing in my back and take lyrica for a week when symptoms get bad , it seems to halt the urgency feelings.

[Rehab45 in reply to Nessie50]

Hi Nessie

Thanks for your reply.

I'm just really worried that if I have a nerve issue that is affecting my urethral area. Would the cystoscopy make it worse? It has taken nearly a year to get the pain to a manageable level. On the other hand my bladder needs to be ruled out as I have a burn each time before the urine stream starts and a constant dull ache in my bladder. Do you have symptoms similar to me?

[Nessie50 in reply to Rehab45]

I did have , the oxybutinin they gave me made it worse, it has settled but I get flare ups and have back disc degeneration so think it’s something to do with it. Had all the bladder studies etc , just was told it was I/C. Had a hysterectomy 2 years ago and feel it’s a bit better. I’m 63 and had these problems since my twenties. Do you get relief sitting in the bath? I tried water d mannose (natural supplement ) and it helped.

[CMFCharlotte]

I have had a cystoscopy three times now and none of them have made my pelvic pain worse. My pain starts with the pudental nerve and not the bladder itself. so that makes a difference.

[Rehab45 in reply to CMFCharlotte]

Thanks Charlotte. I'm glad to hear the cystoscopy was ok for you. Does your pudendal nerve pain give you pain around the urethra and when urinating? It feels like my bladder but I know pudendal neuralgia can give similar symptoms. Those are the main issues for me but I do sometimes have rectum pain and pain in my right butt cheek. My pain in the pelvis is much worse when sitting.

[Merc7582 in reply to Rehab45]

Sounds like PN to me I’ve suffered for a year on and off mostly on, I am a 50 year old male urethra is very sensitive along penis not pain more like irritating, does your clitorus give you similar sensations, urgency comes and goes and bladder does not like being full, relief sort of when emptying bladder. Perineum pain and tenderness but not all time, mine has to be nerve as it occasionally does disappear for 2 days max, I’ve tried to ignore it go walking etc

[Rehab45 in reply to Merc7582]

Hi Merc

That's what I think. Yes the urethral pain is more of an irritant like something is stuck there pinching. It is painful before urinating like a burn. My bladder too gets angry when full. I can feel the ache in my bladder and urethra all the time but worsens when sitting. I had a pelvic and abdo kidney ultrasound last week which showed everything to be normal including the bladder function. I do feel that without looking inside the bladder I will always be thinking what if.... Do you have pain when urinating?

[Rehab45 in reply to Rehab45]

I also recommend the head space app for mediation and relaxation when feeling anxious or hopeless. It really helps. I see a chiropractor to who helps with pudendal manipulation and realignment of the body. Not cheap but worth it! It's good to share our coping mechanisms 🙌🏼

[Merc7582 in reply to Rehab45]

Yes sounds very similar to mine in the female form obviously, pain can feel very deep in behind the bottom of penis so I guess for you similar area, I have started to really try and forget it a bit if I’m honest and try and eat healthy and exercise regularly now to keep mind off it as the mind is a powerful thing, when it flares up as that what it feels like, it is a very raw feeling and my hips back etc tend to stiffen up, does it affect any sexual functions? When I pee when bladder is full sometimes burns but urgency feeling is not nice, it can really get you down. I have had a back scan all clear and now await results of a pelvic scan I had 2 weeks ago. I find a foam roller helps to straddle or the corner of a kitchen work top seems to help if I get right spot on lower back, I think a lot of pain is referred have you any trigger spots underneath that feel tender when it flares ? Hope sharing helps

[Rehab45 in reply to Merc7582]

Hi Merc

I think alot of the pelvic and back pain is also referred. It doesn't affect my sexual function and sex life anymore but it did in the beginning. My main problem is sore feeling in urethra and labia and a burn before urine is released. I also have discomfort sometimes with bowel movement. Flare ups for me are made worse by sitting at work, that I am sure of. I know bladder problems can also refer pain hence why I've got to have mine checked out... have you had a cystoscopy?

[Merc7582 in reply to Rehab45]

No not had Cystoscopy yet, yes I was the same sexually, took a long time to reach orgasm to start with ( I did not mind that though lol ). Luckily I have retired early so sitting does not cause me to much problem now as I tend not to sit to much. Hope communication is helping, my email is [e-mail] if you need to communicate.

[Rehab45 in reply to Merc7582]

Lol Merc. Thanks.

What do you think about the cystoscopy? Do you think it would make the nerve pain (if it is that...) worse? I really don't know if its nerve or bladder but I guess there is only one way to find out.... 🤔

[Merc7582 in reply to Rehab45]

I do not think it would make it worse if it’s nerve it’s nerve🤷‍♂️

[Rehab45 in reply to Merc7582]

Just worried about the cystoscope going through the urethra that is already sore 🤔😯 It's taken me nearly a year to get to the pain level I have now which is manageable. I could not bare to go back to how it was at the beginning. However, the problem could well with with the urethra and/ or bladder.... It's such a hard decision for me 🙈😥

[Rehab45 in reply to Rehab45]

Hi Merc

How are you? How did your MRI go did you have the one with the dye?

[Rehab45 in reply to Merc7582]

Hi Merc

How are you? How did your MRI go did you have the one with the dye?

[Merc7582 in reply to Rehab45]

Hi Rehab, hope you are feeling a bit better, no I did not have a dye mri, nothing really found, urethra still very sensitive, sensitive penis and bladder fullness and urgency really annoying. It’s not there all the time sometime I think it’s gone then it comes back with full on sensitivity, doctors not very helpful if I’m honest don’t think they know enough, just more medication and off you go, something is obviously not right and down there you know when it’s not. How about you?

[Rehab45 in reply to Merc7582]

I am feeling much better lately thanks. Have been managing the pain and irritation with 900mg gabepentin. I have good days and bad days now which is an improvement to the constant pain I had. I came off of amitriptyline over a month ago now. So things are on the up I think. My aim is to ween off of the gabepentin and see what my pain levels are without medication. I hate taking these pills. I'm going for a pudendal nerve mri with the dye on Friday but am not expecting any findings as the professor I saw told me that irritation would not be seen on any high resolution scan. He thinks a muscle spasm has caused my nerve to become irritated and hypersensitive. I totally agree with him. Anyway let's see what happens now. You can only take each day as it comes can't you? Most of them don't know enough about the pudendal nerve in general, they don't understand the mental torture you go through worrying about what's wrong with you and yes they tend to palm you off with as much medication as possible. You can't live life like a zombie though :0s

[Merc7582 in reply to Rehab45]

I agree totally, sometimes I think it has gone then another day it’s there, the bladder urgency is so annoying. I still think I have PN as the symptoms are so alike, but nobody has diagnosed that, scans all ok so nothing sinister but why all of a sudden do I need to pee, I can put it off if I have to. The sensitivity on my foreskin only occurs with the bladder fullness so I’m thinking is all referred nerve issues

[Skye22]

Hi there, I am recovering from a recent procedure of bladder neck injections for urinary incontinence, urgency and painful bladder when urinating. Procedure involved a flexible cystoscopy into bladder which in itself not painful but the injections into bladder was beyond painful!!!! Unfortunately I had to be awake for surgery as was also having botox injections into pubirectalis muscle for levator-ani syndrome. Botox also helps to relax severe spasms in rectum as have also got a dysfunctional bowel. My bladder, bowel abdomen and pelvis are all compromised with severe adhesions. Have had a 60% success with bladder procedure as I am only using 2 pads an hour instead of 5!!!! Future bladder injections will be done by itself as definitely Will be aneasthsised!!! ( Procedeure did not make urethra and surrounding area any worse ) . Botox has a moderate success with severe spasms i also receive trigger point manipulation vaginally from my physio every week and the combination allows me to reduce my meds and sit on my bottom, Like a normal person!!! Sting in the tail is my symptoms start to increase in intensity after about 2wks, but those 2wks of reduced symptoms are magical!!!!

Hope your procedure has a positive outcome for you and get a definitive diagnosis and a comprehensive treatment plan.

[sazley87]

I’ve had one and when I woke up from surgery it burned pretty intensely but they also stretched my bladder at the same time to increase its capacity so that probably didn’t help. Recovery was pretty straight forward it’s mostly from the anaesthetic in my experience I did have a short period of relief from the procedure maximum six months before symptoms returned.