Diagnosis of vulvadynia but think I have trapped nerve..

[juliapiper]

I am a 49 year old and about 18 months ago had a severe bout of cystitis which I didn't recover properly from despite antibiotics. About 3 months later I was still experiencing what felt like pressure on the bladder and had an ultrasound of my bladder but was told everything was okay. The next symptoms were hypersensitivity in the clitoris and a constant feel of sexual stimulation in that area along with the continued feeling of needing to urinate (although the frequency had become normal again). A couple of months ago I was disagnosed with vulvadynia. When researching I discovered pudendal nerve irritation which seemed to fit with my symptoms, i.e. no pain during the night, starting about an hour after getting up, worse with sitting. I saw an osteopath and he thinks I have a back issue which is causing the pudental nerve irritation. However, my GP seems non commital and is just prescribing Neurontin and a steroid cream. Another strange symptom is that both my outer thighs get ice cold if my body temperature drops slightly and they do not warm up but remain icy. This leads me to think it is nerve related and probably something trapped in my back. Don't know where to go now for help and the pain which fluctuates now from different areas in my genitalia is causing me so much emotional distress / pain. Has anyone had a similar issue please? Have just joined this website as feel very alone with these problems..

[jacquieb Volunteer]

Firstly, I would double check to make sure you still don't have an UTI. You can't always believe Dr's checks, even when they sent the culture to the lab its not always correct. So look into that further. From personal experience, having a constant underlining UTI can cause clitoral sensitivity. However, it could be acondition called PGAS - which stands for Persistant Genital Arousal Syndrome, look it up on the net as there are lots of forum's that discuss this.Dr's are not convinced it exists though so beware of the strange looks. I can relate to your symptoms, and a lot of it has to do with the muscles going into spasm, which makes matters worse. I suggest you take a muscle relaxant, Baclofen has been the best for me. Let us know how you get on.

[juliapiper in reply to jacquieb]

Hi Jacqui, thank you so much for your response. Unfortunately I did have a number of urine tests plus an ultrasound through BUPA on the bladder with no abnormal result. I did wonder about PGAS a few months ago and did some research on that one, but it didn't quite fit. However, when researching pudendal nerve, there was mention of the clitoral sensitivity and everything else seemed to fit so I think that is more likely. However, your suggestion of a muscle relaxant is a good one. Does Baclofen have to be prescribed or can you get OTC? Thanks again.

[SusieQ100]

Hi

I was diagnosed with vulvodynia 6 months ago but the pain specialist I'm seeing said it could be caused by pudendal nerve damage. They don't really know. I'm now having physio and my physio thinks that problems with my muscles being knotted / spasmed around my lower spine coupled with poor posture (thanks to years of desk jobs) are compressing my nerves and possibly causing the pain. I was given steroid cream to start with but it just caused me even more pain. Notriptyline helps me with the burning pain and I also use a donut cushion for sitting at my desk.

I'd talk to your doctor again (or change to one who is more sympathetic). It may worth considering a course of physio next to help with the muscle spasms but make sure you get one who is a specialist in pelvic pain.

Good luck xx

[juliapiper in reply to SusieQ100]

Thank you Susie. I am starting to think it is the same case with me. I was also given steroid cream, along with the neurontin, but only used for a week or so because, like you, it seemed to aggravate. I have been sitting in an office chair for the last 30 years, probably with bad posture and the osteopath said my lower back was knotted so I think it explains a lot. I use a special cushion that I purchased from the IC Site but also use an office bouncy ball (like the ones at the gym) and I find this the most effective to reduce pain when at work.

Someone has also suggested pilates for stretching to help and cranio sacral therapy is supposed to be good for releasing nerves and things compressed. Good luck to you too and thanks for responding xx

[jacquieb Volunteer]

Baclofen has to be prescribed, but is a popular one so you shouldn't have too many problems there. Give pilates a go, but please be prepared for a flare up. I am not sure its a good treatment but it might work for you, as any stretching, pulling can make your condition even more uncomfortable. The steroid cream you mentioned, massive no-no for me, far too strong. Believe it or not baby sudocrem is quite a good one, but emu-oil has been the best to ease the inflammation.

[juliapiper in reply to jacquieb]

Thanks for your reply Jacqui. I'm wondering if the bladder horrible feeling I get is the bladder going into spasm which maybe could be a muscle spasm. Am off the steroid cream but the GP has now prescribed lidocaine ointment which is an anaesthetic gel which is also very strong

[Sunflower82]

Hi,

I have been suffering with vulvodynia for over 6 years. Also suffered from repeated cystitis. I have been seeing a women's health Physio privately who has helped with all the tension and the bladder pain. I have had to go private for this which is extremely expensive, but has been worth it.

Hope this helps

Kt

[Nutmeg75]

Hi, Julia piper, I realise you posted this a little while ago but wondered if you'd got any further as I have the exact same symptoms. I had a bad uti which has taken a number of antibiotics to clear. Since then I have had this weird sensation in my clitoris I would say more so on the right hand side. This is less in the morning and gradually grows through the day. I have a bad back, pain in my hips and pain in my groin also. Like you have researched on the web and came up with pudenal nerve. I was thinking of trying chiropractor/osteopath/physiotherapist but want sure which way to turn. I have got myself on a no sugar, yeast, gluten diet due to other things I've read. Any help greatly appreciated

[Cg101]

Hi there, I reckon there's a link between cystitis and this pain... I too had same thing constant painful cystitis probably 80% of the time for around 4 years managed to get rid of it at last... now plagued with the pain in the clitoris which does feel as if it comes on when my lower back is twingy... I asked my gynecologist if there was a link between back problems and this (which was diagnosed as vulvadynia and treated as a skin condition) but she said no! I have stopped using steroid cream as I don't see how thinning the skin will help!!?

Just want it to go away ..am 24 n haven't been able to enjoy a healthy normal sex life yet.

I don't know if anyone else experiences numbness at times ??

[Cg101]

Sound like the cystitis u have is interstitial cystitis a flare up of the bladder!

[1-day-at-a-time]

I am constantly miserable and have been searching for an answer...I have seen my OB-GYN, Internist, Urologist, Orthopedic Surgeon, Neurologist and a new OB-GYN. I just turned 54, I'm very active and in good health other than herniated discs in my neck and back, sciatica, fibromyalgia and a lot of stress!! My symptoms started Christmas 2011. As always, I was wrapping presents at the last minute. After reading Julia's article, I am convinced that I must have aggravated a nerve(s) because I was in such a hurry and I was wrapping in many awful, awkward positions. I was sitting on the floor most of the time leaning over the presents I was wrapping and I was in a lot of pain, but I couldn't stop! I knew I was going to hurt, but I had no idea what was to follow...I have not gone a day since that I haven't been out of my mind!!! I have had every test done and everything has been ruled out, including a hysterectomy when I was 42. I have tried every kind of medication from many different antibiotics to pain medication, but nothing takes it away!! The only thing that I have found any relief from (but I must warn you, I have spent a lot of money keeping it on hand) is Monistat Cream and Vagisil Cream. Obviously, this is only a temporary fix! Sitting is the worst position and walking is the best. We took our family on a trip to California in the summer of 2012 and I spent the better part of it looking for the next rest room. The urgency to urinate is terrible!! As others have mentioned, it's best in the morning, but gets bad quickly!! Thank you for your information!! At least I don't feel like I'm going crazy or I'm alone in this. I think I'm going to try and find a doctor that can give me some nerve block injections. I used to get them for my back and I wonder if they would help with this. Please let me know if anyone has found any new cure for this horrible problem!!

[drozdz72]

Hi Juliapiper, you are NOT ALONE. I have now purchased Emuaid and so desperate to find a solution. Your story is a repeat of mine but the only difference is I had brain surgery to remove a benign tumour in February of last year. In June I experienced the pain and to date I am not close to a solution. I have even gone as far as to insert an Interstim which empties my bladder but does not ease the pain. have you found any relief yet?

[juliapiper]

Hi everyone am not any closer to a solution. Am currently back to physio acupuncture meditation and trying chinese herbs to relax the muscles. Strangely last week I was having a couple of bad days and did some work in my garden, weeding and bent over. Discovered the pain went completely which makes me think the compression on the pudendal is coming from lower back. Believe this nerve comes from S2 to S4 in the back. Anyone else any further? Julia

[juliapiper]

Has anyone tried a TENS for the PN pain? My PT suggested I try this when I had physio last night. However, seen conflicting opinions on the internet regarding this.

Thanks, Julia

[frodofish in reply to juliapiper]

Hi, I visited the Nantes team in mid March, I was told by the Dr who performed the nerve blocks in cluneal and pudendal nerves to try TENS, he gave me a diag of where to put electrodes, just got it from my mum, not tried yet but intend to.

[juliapiper in reply to frodofish]

Hi. Thanks for your reply. Have decided to buy one and try. If you are able to let me know where to put electrodes would be very grateful! If you can scan my email is [e-mail]. thank you so much and good luck with it. Julia

[Nataly1406 in reply to juliapiper]

Hi Julia, would you be kind to re-email to me [e-mail] and keep us posted is TENS works for you! Nataly

[chiligringa22]

I have your exact same symptoms. I have spent alot of money trying to find a cure but I have had zero luck. if you have any updates or any doctors you could recommend I would be eternally grateful.

[vaz74]

Are you still around? I have the exact same symptoms and am still searching for answers. I feel crazy

[juliapiper]

Hi, in case anyone is still following this trail... it's Julia again. Must be 6 years or more now I have had this condition. However, i wanted to let people know that despite what I've read, mostly stating that this condition gets worse, mine has been getting very slowly a little better. I have this week had seven consecutive days with hardly any pain / sensation. It is such a relief. i wanted to add this as every time i've researched, I hear people say how it gets worse over time. Mine has certainly not gone, but it is much more bearable that it used to be. Good luck to everyone else out there suffering from PN pain.

[Alaine1 Administrator in reply to juliapiper]

That is great news! Did you receive any treatment or do any lifestyle changes in addition to medical/surgical treatments?

[juliapiper]

Thanks Alaine1. No, I did a few years ago try so many alternative treatments, all to no avail. Have no idea why things have got less painful but if I do find out anymore, I will definitely post to help anyone else.

[juliapiper]

One thing I'd like to add, from information I have gleaned from different therapists and particular the physiotherapist that I saw for a while. I think when you have a UTI for a few weeks that is hard to get rid off, the muscles spasm in that region, realising there is an infection, or you sit awkwardly because of the pain and this somehow gets inbedded in the neural pathway which creates a chicken and egg situation, i.e. muscles keep tightening in pelvic floor (and pressing on areas of the Pudendal Nerve). I believe this is why it's such a hard one to recover from. This makes sense why first thing in the morning the pain wasn't there for me when I woke up (and was completely relaxed) but got increasingly worse throughout the day.

[Hidden]

What ever happened with yoir case. Maybe you can help me.

These are my symptoms:

· Sitting becomes intolerable.

· The pain is often not immediate but delayed and continuous and stays long after discontinuing activity that caused the pain.

· Often the pain is lower in the morning upon awakening and increases throughout the day.

· Pain after orgasm.

· Strange feeling of uncomfortable arousal without sexual desire. Mostly just a tingling feeling.

· Urethral burning (intermediate)

· Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.

· Urinary frequency.

· Pain during and after intercourse.

· Minor low back

· The symptoms are bilateral.

· The front of my things burn

· Sharp electric type pain in the groin area when sitting.

I do have a history of vulvodynia and recently had a vestibulctomy to help with pain. Clitoris tingling started July 20th. On July 4th I stopped taking Spironalactone and within 3 weeks Clitoris tingling started. Therefore I went back on Spironlactone July 20th thinking it was somehow related to hormones such as testosterone. I stopped Spiro because my testosterone was low. So I thought that maybe I was feeling a rush of testosterone that caused the arousal feeling. Since going back on Spiro my clitoris is not as intense, but still bothersome. Do u think This is PGAD?

I feel helpless