vulvodynia/pelvic floor dysfunction

Been battling with generalized vulvodynia and pelvic floor dysfunction for many years. Kept it under control with 2.5 mg of valium and 10mg elavil. Had a terrible flare up last year and since then have been plagued by symptoms constantly. I constantly feel the urge to urinate especially when standing up or walking. Also can feel urethra and bladder spasms and have trouble emptying bladder. Seen gyno and PFD specialist who insist its the vulvodynia and PFD. Anyone else with vulvodynia and/or PFD feel the urge to pee constantly?? I live on pyridium/azo which helps a little bit.

[ANDYLEE]

Hello - I was just diagnosed with cystitis and Vulvodynia and I pee frequently .. May I ask if you have excessive discharge with your Vulvodynia? I am experiencing this and am so self conscious about it now...after 6 months and countless bacterial tests etc I have this Vulvodynia diagnosis ...:/

[Hidden in reply to ANDYLEE]

No discharge. That sounds like bacterial vaginosis. I definitely have pelvic floor issue because I have trouble emptying my bladder completely. I also have urethral and vaginal Pain which is why I have two diagnosis: pelvic floor dysfunction and generalized vulvodynia . I've had it for years and it would come and go. But the last 6 months have been brutal with constant symptoms, one being that I feel like I constantly have to pee even after I've gone to the bathroom. Make sure your doctor does a vaginal culture to see if you have a bacterial issue. There is cream for that

[ANDYLEE in reply to Hidden]

We have done countless screenings for BV and other bacterias ...nothing ever shows UP i hope you find a solution to your issues Soon!

[Heatherpeach in reply to ANDYLEE]

You could a second opinion from a infectious diseases doctor that specializes in vaginal infections. I was told over and over I didn't have yeast but it turned out I had a rare one and needed a special test. Hugs

[ANDYLEE in reply to Heatherpeach]

You Know it has to be that! Im real upset today about it ... I think i will seek More Answers Im not buying this vulvodynia thing .. Im going in for a blood test and If My white cells are still UP Its got to be an infection ...it has to be!! Thanks for The reply! X

[LornaLov]

I get the constant need to pee but only usually for the week or so between ovulation and my period- I tend to get what feels like a burning in my bladder a long with it, and it is difficult to urinate even though I feel like I need to constantly.

My doc now thinks I may have endometriosis and that my bladder problems a long with a lot of other symptoms are related to that, but one thing that has mentioned in the past due to he bladder issues is interstitial cystitis- is this something your doctor has ever mentioned? I don't know much about the conditions you've been diagnosed with but you could have developed this too? It's worth a google to see if your symptoms fit.

Sorry you're in so much discomfort, I hope you get some relief soon!

[Hidden in reply to LornaLov]

I've had this for many years but it never was this bad. I've seen tons of doctors including one who specializes in interstitial cystiti. He said a classic symptom of IC is constantly peeing and bladder pain which I don't have. I feel like I have to go all the time but then I have trouble emptying bladder. I'm trying to find out if the generalized vulvodynia who cause that. I also have spasms in urethra which is why they thinks it's pelvic floor dysfunction.

[Joolibee]

I started with what appeared to be recurrent UTI, but lab tests came back clear. They diagnosed urethral syndrome and put me on medication for irritable bladder (can't remember what it was called). After 6 months the urethral/bladder symptoms subsided significantly, but I still had pain in vagina/ vulva. I was then diagnosed with vestibulodyna, vulvadynia and eventually pudendal neuralgia. It sounds like you could have IC. Frankly, I've given up on giving my pain a name, because all of these diagnoses seem to be 'cop outs' to me. They just mean pain that they can't explain. It does appear that in many cases it is a neuro-muscular problem and I would recommend finding a pelvic floor physiotherapist who does trigger point therapy and myofascial release. You might have to travel to get to one, but it could be worth it in the long term. Is your PFD specialist a doctor or a physiotherapist / PT? A lot of doctors are still not up to speed, but in my opinion, the ones that know their stuff would recommend physiotherapy. I feel for you and I hope that you manage to get some relief from your pain soon.

[Hidden in reply to Joolibee]

The doctor I see specializes in pelvic floor dysfunction and IC. I tried physical therapy and the therapist said the muscles around my urethra were extremely tight. I went for several sessions but I felt as if it was aggravating my condition. Over the years I have had long stretches of time with no symptoms so I just have to keep hoping that I can get back to that point one day. I feel for you too and hope you continue to get better!

[seraphina in reply to Joolibee]

I have endo and i.c. I will tell u in my situation the endo on the bladder causes the majority of the pain. I was urinating all the time and the pain was.cripplong. I suffered for 20 yrs till I moved to Las Vegas a nd found a good surgeon. Now I'm in the same position with a rectal spasm caused by falling on my tailbone and heavy weight lifting. I was in so much pain. This time it wasmy ppelvic floor but doc misdiagnosed me and then told me I might have cancer or need a bowel resection. I went to the. Cancer center and wasrreferred to a man there to check my bowels for endo a d I decided to have my ovary taken out too. Dum. Decision. Nothing wrong with ovary and had a girl with him duringb surgery. He released an adhesion on my pelvic sidewall and now I have a rectal spasm. They do t even care either. I've been oug of work since Jan

[ANDYLEE in reply to seraphina]

Terrible

[Joolibee]

Thank you. Did the PT do work to release the tightness, or give you exercises to do to try to relax the muscles? I understand how difficult it is and I'm thankful that my urethral symptoms at least have died down. But although my internal trigger points are now under control, I cannot seem to get the pelvic floor muscles to relax properly. I'm thinking I need to think of it as a whole body issue, as I also have tight glutes and back. I'm glad that at least you have had stretches of time with no pain, but it must be so disheartening when it comes back. Mine has never gone away properly, but at least I tend not to have pain when I wake up in the morning. At the moment I'm reading about the Feldenkrais method of movement, which encourages whole body awareness and apparently has helped people with all kinds of conditions. I don't know enough to recommend it, but I'll give it a go and will write a post if I think it helps. Anything is worth a try. Good luck.

[Hidden in reply to Joolibee]

I think the PT aggravated my symptoms but it's hard to tell since I have symptoms most of the time. I do find what helps the most is Valium and/or warm bath. That really helps to release my pelvic floor. I have just increased my elavil to 50mg and I think it's helping with the urethral pain. So now what bothers me the most is as soon as I stand up or walk I feel like I have to pee. Sort of the feeling I had when I was pregnant and the baby was sitting on my bladder. Yes it's very disheartening and some days I feel very depressed but then I might have a few good days and it reminds me to stay positive.

[Joolibee]

You don't have a prolapse, do you? I used to feel like that particularly before a period. I do have a mild prolapse and at the time was having heavy periods, with fibroids and an enlarged uterus. Just a thought.

[Hidden in reply to Joolibee]

I thought that might be it too but my gyno, urologist and physical therapist have all examined me and they said no. Urologist seems to think my nerves have gone haywire which is why he upped my elavil. He said it la neuropathic pain. But I'm not sure that would give me the sensation of having to pee all the time. That's why I joined this forum. Im trying to find other people who have vulvodynia to see if this is one of the symptoms

[Joolibee]

It does sound like neuropathic pain to me. The theory is that the nerves could be irritated by injury or infection etc, but even when the original cause has disappeared, the pain does not, for complicated reasons connected to the brain and central nervous system. Also, when we are in pain we cannot help but guard against it, by tightening of muscles, altered posture etc. This can exacerbate the pain by compressing the nerves. I have found that Gabapentin helps my neuropathic pain, but I'm reluctant to increase the dosage any further and so am probably not getting the same benefit that I used to have. I'm preferring to work on the causes, i.e. Physio. I saw a pain specialist a few days ago who has suggested a short term medication for bad flare ups and am waiting for my GP to issue a prescription. I suspect it will be a Valium type drug. The physio hurt like hell at first, but now I can tolerate internal work quite well, but the progress is slow and I think it's a good job that I'm generally an optimistic person. I do lots of gentle exercise, walking and meditation. I also have acupuncture. Sometimes I think I'm wasting my time and money, but actually, the pain level and flare ups have reduced. I've done a lot of research on my own and I reckon I can now spot a bullshitting doctor a mile away. A book I found that helps to explain neuropathic pain is "Pain: Nerves on fire - changing neuropathic pain, by Jay Tracy. I lent it to my physio, who has recommended it to another of her patients. I used to get urgency as well as horrible shooting pains in my urethra. It's all to do with the nerves being irritated; quite possibly the pudendal nerve, which has branches to the whole of the pelvic floor area. I've gone on a bit, but hope that this helps.

[Hidden in reply to Joolibee]

My doctor said the next step might be gabapentin. Are you in pain all the time? Does it affect your bladder?

[Joolibee in reply to Hidden]

Thankfully I'm not in pain all the time. It tends to be worse later in the day, but there have been some days when I've not really had pain at all, just a hint that it could start if I don't manage it. On the other hand there are days when it is pretty much all day, but it doesn't keep me awake at night (typical pudendal neuralgia). That means avoiding too much sitting, not wearing trousers or anything with a seam down the front, and no sex. It hasn't affected my bladder for some time, but it used to. I think that medication for irritable bladder helped that side of things. I no longer need that medication. Does your vulvodynia affect other areas, such as further into the vagina or anal area?

[Hidden in reply to Joolibee]

My vulvodynia isn't typical, but since I have pain, the doctor is calling it generalized vulvodynia. I have terrible urethral pain, labia pain and things like riding a bike make it worse. Every now and then I actually will have pain down my inner thighs. The urethral pain is the worst and the feeling of urgency is terrible. For years I was tested for UTIs but I never had burning and the cultures were always negative. Last year, for the first time I actually did have a uti and then a month later another one. Then I had terrible pain and blood while peeing and doctor thought I might have passed kidney stone. Then for weeks after that, I had terrible pelvic discomfort which thankfully has gone away. Since then, I have not been able to go into "remission". Doctor thinks the uti's made my nerves go haywire. I'm really not sure at this point but I've had CT scan, vaginal sonograms and a pelvic MRI and nothing has been found. I take a lot of Azo/pyridium which helps sometimes. I'm lucky that I don't have a problem with tampons or sex which I think is kind odd for a vulvodynia patient so I'm thinking I might have more a urethral syndrome. It's so hard to stay positive but it really makes me appreciate the "good" days!!!

[Joolibee]

I don't think any two people have exactly the same symptoms. I used to have UTI symptoms and leucocytes in my urine, but no bacterial growth. Makes me wonder whether there can sometimes be hidden infection. Maybe I don't have that anymore because the original cause cleared up. Haha, I used to love cycling but now I only have to look at a bike saddle to bring on pain. I hope they haven't subjected you to a cystocopy. When I had one I nearly fainted with the pain. Anyway, we have to try our best to stay positive, difficult as it is. Nothing stays the same for ever. I refuse to allow this awful condition to ruin my life, as I don't believe I'll get another chance. But I'm lucky to have an amazing partner who loves me for who I am and makes no demands. I had to smile the other day. When I saw the pain consultant I told him I needed to stand because of the pain, so he stood up with me. No one has ever done that before, but then I used to sit and put up with the pain during appointments . I do hope you manage to find some relief soon. I know how exhausting it can be.

[Hidden in reply to Joolibee]

I have had leukoctyes in my urine also and yes, I've had the dreaded cystocopy and it wasn't horrible. My doctor inserted lidocaine in my urethra before he did it; not sure if it made a difference. I agree with you on not letting this ruin my life. At times, it has taken over and it's all I think about. I hated making plans or doing anything because I never knew if it would be a good day or bad day. I am a very positive person (sounds like you are too!) and I also believe that one day this will get better. I have to think that way otherwise I would go crazy!! I do think upping my elavil has helped so I'm keeping my fingers crossed that I will keep on getting better. Glad you share your life with someone who understands this! It took my husband a long time to get it; he just didn't understand what I was feeling. But after seeing what I have gone through (dozens of doctors and too many tests to count) he finally understands!!

[Joolibee]

We'll get there, one way or another 🙂

[bettyfl]

You probably have Interstitial Cystitis. Find a good Urogyno.

[bettyfl]

Hi,

You might want to see a urogynecologist. I have IC, Interstitial Cystitis, and that is one of the symptoms. There was a time 9 years ago when I could not get off the toilet because it felt like I had to pee all the time. I fight with this illness and some others in the pelvic region. Constant pain is no fun. Please get checked for IC. Tell the doctor all your symptoms when/if you find a urogyno.

Hope this helps.

[Rosietay]

Have you found any help? I am going through a very similar situation and I'm tryikmg to stay hopeful.

[Suffered_Too_Long]

My Mom has the same thing terribly, upping the elavil will help and starting gabapentin.... if still not working switch from elavil to Prozac... keep going up on gabapentin until you feel relief... also sit in warm baths a few times a day during flare ups, heating pad, and if still bad, add some pain medicine to it like Tylenol 3... I know it’s awful, but it will get better, don’t give up... God Bless...