Cystoscopy and pudendal neuralgia/ vu... - Pelvic Pain Suppo...

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Cystoscopy and pudendal neuralgia/ vulvodynia

Rehab45
Rehab45
38 Replies

Hi All

I have had constant urethral burning and bladder pain for 10 months now. No sexual problems as this pain seems to miss that area. I do have a prickling feeling in the rectum and sometimes widespread prickling over the rest of the vulva. It is suspected pudendal neuralgia and vulvodynia. However due to the bladder symptoms and pain when urinating I have been advised to have a cystoscopy to rule out any bladder issues. I have white and red blood cells in my urine but not a huge amount.

I just wanted to know if anyone out there had similar symptoms to me and has had a cystoscopy. I am so frightened this will cause me more pain in that area but I also feel that any bladder problems need to be ruled out at this stage.

I would be grateful for your stories and advice regarding this. It is a difficult thing to discuss with friends and family as they don't know how it feels.

Thank you

38 Replies
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kalecolbe12

I have pfd with pudental nerve involvement now and going to a pt also on muscle relaxers I had it 10 years s ago where it involved my urethra then found out it was pelvic floor dysfunction...i was on vesacare for overactive bladder and do excercises but no pt at that time....and I got a cystoscopy ...It is not too bad ...showed nothing for me because it ultimately was pfd but I had the 24/7 burning too...ugh was horrible...nothing for 10 years now it's back in other area but never affected my vagina either!so no sexual issues .....

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Rehab45
Rehab45
in reply to kalecolbe12

Thanks for your reply. After the cystoscopy did it make your urethra burning worse than it was before? I am not really too worried about the procedure as I will be asleep. I have a dull ache in my pelvis all of the time. The urethra soreness is worse sometimes than others. All tests and xrays cannot find a cause so the cystoscopy is the only thing I haven't had. It's very frustrating 😣

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Kalamunda
Kalamunda
in reply to Rehab45

Hi, I've had all the feelings of a uti for a year now, I'm in the loo upto 13 times a night to pee with burning and stinging, I also have severe shooting pains, I have had a cystoscopy, very easy, and I had no pain relief. awaiting results. I'm on 150 mg daily of pregabalin. the year has been awful, feeling as thou' I'm under house arrest! Self management is important with the advice given being tried and sometimes rejected as we are all different. do try lots of relaxation especially prior to medical appointments as stress does make the pain worse, even tho' we all say we are not stressed! and the best way to relax is with positive people.... You will find a way thro.... xx

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kalecolbe12
kalecolbe12
in reply to Rehab45

Cystoscopy didn't make anything worse.... I went on hormone replacement and it literally cured it because it was menopausal atrophy and now they know what to do but I saw 5 docs before I figured it out for myself on these forums....my urologist was blown away with the info I brought it him

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Hlt66

Hi - sorry you're suffering - it's grim. I had some similar problems - terrible burning and repeated UTIs / prickling sensations. Turned out to be related to the menopause / peri menopause (I'm 48). HRT is helping. (Patches and oestrogen cream applied locally). I hadn't even considered the menopause as it seemed not to be relevant and I didn't know the meno could cause bladder issues. Just suggesting it to you - obviously I don't know how old you are but it may be relevant / worth discussing with your doctor - hope things get sorted for you xx

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Rehab45
Rehab45
in reply to Hlt66

Hi

Thank you. I am a bit young for the menopause at 38 years old and all of my hormones and periods are perfectly normal. I didn't really know that there could be so many problems down below... funny enough throughout this I have not had a uti all urine samples and blood tests are normal. Although it kind of feels like an untreated uti but I have been told that any infection would have been fought off after this long time.

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kalecolbe12
kalecolbe12
in reply to Rehab45

They are giving even young girls hormones if they need them...one of my friends daughters was having this and she is 25...she is doing better with local genital hormone cream

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Joolibee

Hi Rehab45. This is a difficult one. I had symptoms very similar to what you describe, some years ago. I was scared of having a cystoscopy, but was assured that they use local anaesthetic. Most people do not experience too many problems with cystoscopy, but I found it extremely painful. I wish now that I had insisted on sedation, but I wasn’t to know that I was different from most people. It did lead to my being prescribed medication for irritable bladder, which I was able to stop after 6 months. I don’t want to scare you, as I know that most people do not find it too painful, but I can only suggest that you trust your instinct and discuss your concerns with your doctor. I wish you luck and hope that you find some relief from your pain.

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Rehab45

Thank you. Oh gosh I couldn't have it while being awake due to my constant urethral pain. I will have general I think this is better and easier as all nerves and muscles will be relaxed. My pain is worse when I'm sitting for long periods but is there all of the time. I think the thought of a cystoscopy or anything being put in that area is awful but I have literally had everything else done. I am due an ultrasound scan next week so after the results, probably showing nothing abnormal I will have to decide. I have had MRI, CT and ultrasounds earlier this year that did not show anything. The doc said it's best to look inside the bladder with the eye as they can see things better. These pesky nerves cause so much pain and yet they can't be seen.

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kalecolbe12
kalecolbe12
in reply to Rehab45

Have you considered that you might have interstitial cystitis?but it's still all part of pelvic floor dysfunction I was wondering if you've done acupuncture /chiropractic help yet?

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Rehab45
Rehab45
in reply to kalecolbe12

I do see a womens physio and chiropractor. It doesn't help when I'm having a flare up. This one has lasted 3 weeks now...

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edythe

Hello Rehab 45, I had a cystocopy near the beginning of my pelvic pain. It sounds as if you'd do well to have some sedation to help you to relax. Im my case nothing was found as a result of this examination. I agree that regardless of age it might be a good idea to explore the idea of topical hormone treatment, but especially finding a physiotherapist (specialist) and getting her opinion would be helpful. Tense muscles and trigger points all around this sensitive area can be (partly) responsible for the pain.

All the best!

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kalecolbe12
kalecolbe12
in reply to edythe

I agree completely

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Ali_rivers

Hello Rehab, I had all of those symptoms and when I went to Mayo Clinic they diagnosed me with Interstitial Cystitis. I would go for a second opinion. This is a very painful disease with no cure but if you eliminate certain acidic foods from your diet, it can help. I’m so sorry, it’s an awful disease. Feel free to message me if you have any questions.

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Rehab45
Rehab45
in reply to Ali_rivers

Hi

Did you have urethral pain, pain when urinating and did the cystoscopy make this pain worse? I'm very frightened. I haven't urinated once in the last 10 months without the burn before 😣 nobody seems to know what's wrong. The urethral pain is constantly there.

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Ali_rivers
Ali_rivers
in reply to Rehab45

Yes, it feels like I’m peeing glass. I had one cystoscopy awake and the other under anesthesia. It’s very painful so I recommend being asleep for it. I was prescribed Uribel. The pain is from bladder spasms that effect your urethra.

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Rehab45
Rehab45
in reply to Ali_rivers

Ouch 😣 how long did those symptoms go on for? Hopefully just temporary.... Guess we have to go through this to have a clear mind and get treatment needed for conditions that can't be seen from the outside. I will def have it asleep.

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kalecolbe12
kalecolbe12
in reply to Rehab45

Oh and other thing I just thought of you can go to Walgreens and get a bottle of prelief takes the acid out of every food so you can still have your coffee and you can still have some acidic foods if you take two of those before you eat the acidic food ... Most people that have this are on elavil what does a whole host of other things that go into it....you can read about it on the interstitial cystitis association

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Rehab45
Rehab45
in reply to kalecolbe12

Do you have chronic urethral pain with interstitial cystitis?

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kalecolbe12
kalecolbe12
in reply to Rehab45

A lot of people do but it's all under pelvic floor dysfunction...I went to 2 urogyns,a urologist and a gun and nobody could diagnose so I went on a forum like this out of frustration and desperation and found people who were talking about pfd and ic and urogenital atrophy....so I took this info back to my uro who I felt most trust in and he put me on a low dose genital hormone cream and I went to pelvic floor pt..also I took vesacare for a year....I had a cystoscopy (unessesary)and found nothing.my uro told me I had educated him!!I was in menopause and nobody identified the issues...it was a nightmare...but if it is ic then that's a broad term for a lot of urology issues and the IC association would be best to talk to

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kalecolbe12
kalecolbe12
in reply to Rehab45

It could also be pudental nerve issues...a pt is best to get evaluated!

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Ali_rivers

IC is incurable unfortunately but there are things you can do to minimize the symptoms. I have messaged with Kalecolbe112 before and I know we discussed all of the above. Try Prelief, look up the IC diet, and do the cystoscopy. I was seeing another dr in Hibners office and they were trying to get me to do different surgeries but they would have never helped. I now see Dr. Kantartzas in Mesa, AZ and she helped me tremendously. I took amnitriptilyn and it didn’t work. Elavil is awful and only helps less than 25% of the people. Good luck in your journey and I would definitely research interstitial cystitis. They were so sure I had PN problems but it was more than that. The pudendal nerve also is tied to bladder.

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Merc7582

I am sure I have this I am male 50, terrible bladder urgency and very uncomfortable feeling on the underneath of the length of penis, sexual function good, perenieal pain, well more pressue if im honest. Back scan oh awaiting results from MRI of pelvic area. had this about a year now.

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Subarusvx1000

How do you feel now.?.

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Merc7582

Same I’m afraid, you ?

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Subarusvx1000

A little better in the last few weeks. UROLOGIST said I could try AZO but it really made no difference. On the other hand, the burning sensation after urinating has gone down significantly. I do get a slight irritation when I walk which is probably friction. 2 weeks until Cystocopy.

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Merc7582

That’s my next step, most this stuff doesn’t show up on mri scans at least I have not got anything sinister but something not right

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Subarusvx1000

I did notice that in the inner part of my Schwarz ---- pee hole tip, has a small sort of white skin. I believe that is the irritation part. I tried coconut oil but I think it made the irritation worse. I read a lot about vulvadinia and it's possible I have a variation of that but I think it's called male genital dysaesthesia

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Merc7582

Any chance of std ?

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Subarusvx1000

All test showed negative results. Over a year a go I had belanitis but it went a way a few days with over the counter anti fungal cream. A few months ago I had the same problem but everything looked normal. Luckily, the irritation went away in a week. It returned a month ago. It has to be friction related

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Merc7582

Any urine urgency or bladder ache

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Subarusvx1000

No bladder urgency luckily. I do drink around 64 ounces of water daily with a good amount of fiber.

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21Tara

I have had 10 months of bladder/urethra pain post a laproscopic myomectomy. My Uro/gyn recently put me on peridium and flexerol which started to work. But a 2nd surgery caused me to start getting clitoral pain and that is now horrific. I have had 2 cystoscopies. The first one was 3 weeks after my surgery and in retrospect I think my doctor was absolutely monstrous to put me through it while I was awake. I suggest if you are in pain and if you have the option, do it while you are under sedation. I was crying the whole time and at the end I was on the floor sobbing hysterically from the pain. It was torture.

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Rehab45

Thank you all for your advice. I will speak to my doctor about hormone cream. Can prerelief be taken with gabepentin and amitriptyline? I am also taking an aloe vera supplement. My pain is severely aggravated by sitting and I should add that this pain came out of the blue after a stomach infection. I really thought I had a uti but when the antibiotics didn't work I realised it must be something more. I have seen a womens pt and she thinks its vulvodynia tied with pudendal neuralgia as all of the nerves in this area are connected. My chiropractor works with mobilisation of the nerve but this only provides temporary relief. I used to get bad spasms and a deep sharp pain in the middle of my right butt cheek and this is classic with that nerve. Although the pain seems to move along the whole of the pudendal nerve area on different days but the vestibular/ urethral rawness is pretty much constant.

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Rehab45

I should have also added that all of my hormone levels are normal and this has been confirmed via various blood tests. So I'm not sure estrogen is the right thing for me?

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Helppme1947

I have had the same procedure it is painless and no after effects do do not worry good luck with the results. Carol

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Nerve1234

Hello, I haven't been diagnosed yet, but I’m sure as to whether mine is Vulvodynia or PN, I’ve got the prickling sensation and burning all over my mons pubis, groin and inner thigh, with really bad pain in my groin too, also in my left bum cheek. I also struggle the urinate, feels like I have an infection but I don’t. I have to really relax to be able to go. My skin is hypersensitive all in that area and I can’t wear clothes or underwear at all because the pain is unbearable. It’s very depressing. I’m only 26, i have no idea what could of caused this. I’m on nerve blocking medications and CBD oil but nothing has worked as of yet.

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