Hi, I'm new to the forum and an looking for support with my symptoms.
I first had problems with pudendal nerve pain about 8 years ago although it took about 5 years to get a diagnosis. The problem started after a bike ride on a bumpy track. That night I needed to go for a wee several times and then the pain in my vulva and perineum started. Gradually over time my symptoms improved after having some pelvic physio. Up until 7 weeks ago my pain was bearable. It was after having worn a new pair of exercise shorts [the stitching on the seams was particularly thick and I think it aggravated an area on my labia] that I experienced the following symptoms:
Pain on the area where the shorts had rubbed
Unbelievable pain in my bladder and I feel like I want to desperately go for a wee 24/7, it is agony. This is by far an away my biggest problem, I feel like I could deal with the pain if only my bladder would stop this 'pinging' sensation.
I am taking Lyrica [pregabalin] 125mgs twice a day with no real effect apart from it does help me to sleep. But following a physical therapy session 3 days ago the bladder discomfort is so bad I can't even sleep, it's 4.00 in the morning as I write and I haven't slept at all tonight.
My physio is NHS and vey supportive and has had some specialist training in this area. I have not found anyone else in the NHS to be particularly helpful otherwise. I have had one session at the Sayer clinic in London which I think may have been helpful although my symptoms are no better. I know it can take several physio sessions but the sayer clinic is so eyewateringly expensive I don't know when I will be able to afford to go back.
I'm trying really hard not to go to the loo too often as I know that this reinforces the signals to the bladder that I need to go when I don't. All the physios/clinicians I have seen say try and ignore the feelings in my bladder but I am at the end of my tether as the pain is excrutiating.
Has anyone else suffered similar problems and if so, what has helped?
I feel very desperate right now and can't carry on with this constant need to go to the toilet.
All thoughts gratefully received.
Thank you
Lilliecat.
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Lilliecat
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Hi Lilliecat , i have the same PN bladderpain and lot of urge ( even feak urge ) but i didn t get the advice from my uroloog not to listen to my urge i just go wen i have to .Physiotherapist are talking about muscles to train they are not formilar with disfunctional bladdernerves. I now go 15 times a day and twice at night . This was 20 times a day and 6 times a night before my ptns treatment. Ptsn helped a bit i dont know if they have it in America. But it stimulates your bladdernerve with a little electo needle. There is also medicine for constant urge it didn t help me but maybe you ; the urologe gave it to me . You didn t speak about a uroloog maybe you can see one for advise . You also have to be sure you have no uti i have them on regular basis and because of the PN pain they are diffecult to expose. I am from holland so my englisch vocubular is not great. Wish you better days and night and a silution for your problem
Thanks for your reply. I definitely don’t have a UTI as I’ve been checked for that. I haven’t heard of ptns, it sounds interesting, not sure we have it in the uk.
I have seen a urologist before and had cystoscopy and that was all clear. I’m due to see a gynaecologist/urologist in January.
Your English is very understandable, much better than my Dutch!
The pelvic floor physical therapist understand it all you need to get an evaluation from one of them. And bladder relaxation medicine I've been through it so I'm pretty familiar with it
I have pelvic floor dysfunction and I have been in pelvic floor physical therapy for about 5 months once a week am I am now starting to get better.. of course also with the help of muscle relaxer and Valium suppositories and also stretching and breathing exercises which help to stop spasming... but I wanted to tell you I had the urinary tract version of PFD about 10 years ago and the thing that helped me was vesicare or oxybutynin anything that will relax the bladder particularly... And since you are an England from what I can read you may be able to use an over-the-counter medication called buscopan it's IBS relief but it also works for the bladder to relax the spasms which make you want to feel like you want to go to the bathroom all the time.. there are several medications that can be used....anyway as you can tell the pelvic floor physical therapy takes a long time I also told someone else on this post that I read a headache in the pelvis which addresses all of these issues in the pelvic floor so you may find it useful to read because it really makes you feel like they understand it
Hi there, kalecolbe12 I noticed you said you were going to pelvic floor therapy once a week for the past 5 months. I have been doing the same but symptoms are still pretty bad and I feel that they are not controlled. I do not go every week though. I go once a month. I feel that I need to go more but when I mentioned it to my therapist she said she felt it would be counter productive as she feels it would cause me much more stress to try to make it there every week (I work full time as a teacher and have three kids at home under the age of 6). I understand her logic as it would be hard for me to get there every week but at the same time I feel like if that is what I need to get better than thats what I should do. Do you think I should go with my gut and push for once a week? Maybe I need a second opinion?
I am very frustrated because my urinary symptoms are full flare. I have burning every day after I void my bladder. It's becoming stressful to have to fear going to the bathroom. Its impacting my life at work and at home as well as my sex life with my husband I also see you used vesicare. Did that help a great deal with taking away burning urinary and bladder symptoms?
The other thing I forgot to mention was when I got mine I was in menopause and it can happen even in perimenopause the earliest age late thirties and I needed genital hormone cream which helped a lot too
Sorry for the third reply but I just remembered that you can speak to doctor Helen pensanti online and she can help also that's where I get my genital hormone cream from.... You email her with your symptoms and she will suggest something for you... Just Google Dr Helen pensanti. And it's free to just email her who see what she suggests
I know how hard it is to be going through this. I have not been diagnosed with PN but I think my symptoms is that. I do have bladder symptoms at times. I think when we are burning/pain in the Vulva vaginal area it also sends signals to the bladder. Hopefully this won’t last to long. Have you tried over the counter medicine to calm the bladder? If it continues maybe see a urologist for help. You’re not alone. This can be emotionally painful as well. Praying for you.
Hi. I have tried things to calm the bladder and they don't work for me
My bladder appears to be overstimulated nearly all the time and it's all to do with overstimulation of the nerve. I may need to see a urologist but for now I'm sticking with physiotherapy as I hear so many stories that it helps in the long run. I'm lucky to have a physio who pretty good and is with the NHS.
I think my main reason for posting on this site is that I do often feel alone as it's really difficult for anyone who doesn't have this problem to really understand how awful it is sometimes. I do find it emotionally exhausting at times.
Hi Lilliecat - sorry to hear. I am seeing a women's health pt called Claire Johnson privately at Spire Harpenden. The sessions are 30 - 60 minutes long and I think £30-60. Sayer v expensive and inconvenient vs Harpenden.
She is very experienced in this area and I am sure will be able to help you. I don't really want to do support groups myself as I find distracting myself from pain the best medication of all, and talking about it just means you focus on it.
Other things I'd suggest are 1) going without knickers as much as possible 2) not wearing jeans or anything with a seam in that area 3) keep drinking water, nothing fizzy, 4) try azo (buy at amazon) to calm the bladder 5)try the app curable for bad nights, very helpful to get the brain to help you turn down the pain and heal 6)triple check you haven't got a uti, the dip tests in the gp are pointless, needs to be cultured 7) try heat and ice to see if either help 8)research drugs for bladder pain and frequency 8)could you be menopausal? Before I went on HRT I had bladder and urethra pain and burning, since HRT its reduced 95%
I noticed that you’re receiving treatment at Harpenden. Have you been diagnosed with a condition? I have just seen Dr Baranowski, who diagnosed me with pudendal neuralgia. Looking to set up a local support group in the Harpenden area for women with pelvic/ bladder pain. Would you be interested?
Thanks for your reply. I'm fortunate that I have a physio who is on the NHS who pretty good but I only get 30-40 minuets every 2 weeks, sometimes every week if I'm lucky. I live in Devon so Harpenden is not really an option for me.
I do try not to wear knickers if the problem is really bad but as winter is coming, those days will be less.
I can't possible wear jeans, they would really aggravate my symptoms.
I do drink water, not too much as my physio has advised to keep to no more than 1200mls fluid/day.
I will try the app you mentioned as it sounds like it could be really useful.
Have tried ice, not heat so maybe will give it a go [ice didn't help, although you would think it would].
I'm a nurse and I know that I don't have a UTI, sometimes wish I did, it would be so much easier to treat.
I am menopausal but I have been going through it for 9 years and not had a problem before. I have tried topical oestrogen but this just makes things flare up. I'm not too sure if I can still get combined oestrogen and progesterone HRT tablets/patches at my age although it may be worth a try.
This exact burning as I finish urinating just started about 3 weeks ago. It comes and goes but when it comes it’s very very bad. I’m77 and have had overactive bladder since 25, before it had a name. I was taking gabapentin for sciatica a couple of years ago and was taking 900 mg 3 times a day so maybe you need more. Apparently you can take up to 3600 mg per day.
I'm going to try an increase the dose, some GP's seem reluctant to give me more and getting to speak to someone who has more understanding is pretty difficult.
You would get farther by eating clean and using herbal methods. All pharma feed candida. They may break it down initially but it adapts and comes back stronger.
You’re so right and sometimes I want everything to be back to normal yesterday. Thankfully there has been some improvement in my symptoms. Although there is still a way to go, it does give me some hope.
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I also see you used vesicare. Did that help a great deal with taking away burning urinary and bladder symptoms?
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