Too many years on these Boards and more depressed than ever!

[peaceplease]

I think this post belongs under Vulvodynia, but to be honest, when I post there, I don't get many responses...
No, I am not a success story, so unless you don't mind hearing from a VERY depressed and hopeless person, you might want to skip this post!

I "got" IC 4 years ago. Started after a routine UTI. Pressure, frequency, sometimes I flare sometimes I feel pretty normal. No rhyme or reason. I can't complain too much because I know if you aren't willing to try any and everything this is the wrong illness to have! But, I am so leary of medications and their side effects and just have sort of been a warrior and dealt with the ups and downs of my IC on my own.

However, out of the blue, actually after a really bad bladder flare that lasted about 2 weeks, I developed vaginal pain, burning, discharge and itching. I have had a vaginal culture done which really didn't show much. It did show group b strep which is a normal bacteria, but I guess some women can be symptomatic from it, so they treated me for 10 days with Amoxicillan. This was weeks ago and I am no better. I HAVE NO YEAST. That is NOT the issue. Even still, I take a good probiotic formulated for increasing good bacteria in the vagina.

Anyway, I am at the END of my rope. Can't hold on emotionally much longer, it is something that I have to put up with every day and it is now about 2.5 months of grueling, constant vaginal pain, burning. Some days it is only pain, some days burning, some days both. Laying down is the only thing that helps the pain. I can not have Pelvic Floor Physical Therapy because I can't fathom ANYTHING going inside me etc. My relationship with my husband is at an all time low. He is supportive and tries to help, but has no idea the extent of emotional suffering, he just can't "get" it in the way I need him to because he is a man and he has never had to deal with anything like this in his life.
I go to therapy but it doesn't seem to help, because as long as I am in daily pain, in the worst place possible, the depression just won't stop.

I don't know what to do any more and I don't expect anybody out there to have a magic answer. I just feel really really really alone, like a freak almost to have this vaginal pain every day, like a big looser!
I am just so emotionally worn out and get no joy out of life, and I have two kids ages 7 and 11, this vaginal pain has ruined my quality of life, eroded it! My bladder has been pretty much ok all throughout this vaginal stuff.

Is the vaginal pain connected to the bladder stuff? If so, that means, just like the IC, it may never go away.
I have no hope and I am sorry this is SOOO depressing to read.:help:

[vm]

:( :( :( I am so sorry you've been hurting like this for so long. I do hope you find some answers soon - and some RELIEF. :kissing:

[kadi]

I hope that things get better. I've not had the same type of pain you describe, though I do have bouts of unexplained itching & discomfort, without yeast or other type of infection. I have had pelvic floor physical therapy & we do no internal work at all and it still helps a lot. My physical therapist gives me home exercises to do & that has relieved a lot of the pelvic pain & pressure. Just thought I'd put this out there...
Wishing you better days soon,

[ICNDonna]

I hope you are feeling a little better this morning. :grouphug: A friend once told me that when she had severe VV pain she wet a regular tea bag and placed it on the area and it eased her pain.

Donna

[nottoc4]

Have you tried baking soda water? How about baking soda in your bath water. My UROGYN prescribed Clobetasol Cream for me and A tiny bit goes a long way,It really helps me a lot. I use 4 times a day if I have that burning and always use it after sex with my husband.

[dking2]

I am so sorry you are in so much pain. I understand how months of pain can effect a person.
PT does not require internal work. We did do a biofeedback exam and therapy , but that was just those round sicky pads in various area including the perieum, but non internally. I worked with my PT on relaxation, triggerpoint release in the thighs and external pelvic areas, myofasial release therapy, and home exercises.The option of using dilators was left up to me when I feel ready.I saw her from April to Sept almost everyweek and we did not even do a internal pelvic exam for vaginal trigger points until almost my last session.

[suncaro23]

Hello,
I have not been in the pain you are, but have had some major discomfort in that area also after a major flare. These may be very simplistic things that you have already tried, but just in case- I used Vagisil and it stopped the redness, irritation and itching. I was also prescribed a vulva cream a number of years ago that helped.
I wish you the best and hope that your pain ends soon so you can enjoy life again!
dawn

[dyno]

Just sending you a hug and hope you are doing better soon.

[wolfaleena]

Just read your post Valblue.
Yes, IC is terrible and i have been in pain for years.
Very few people that don't have it will understand it, but doctors and counsleors, psychiatrists understand pain and its effect on individuals
Yes, I have been through bouts and fits of depression, i think that goes along with the being in chronic pain.
Please feel free to private message me anytime..
coping is difficult... are you on any pain medication that works at all?
how about anitdepressants.
i am on celexa antidepresant and opiate pain meds from pain management.
has you psychiatist been any help at all? Has he/she given you any coping ideas?
Please, please discuss your depression with you psychiatrist, maybe they can readjust some meds and give you better suggestions to follow.
Again, you can private message me anytime.
But there is always HOPE!!!
don't give up hope

[KarenAnne]

peace: Vaginal estrogen helped me with the vaginal burning. Hope you feel better soon.

Val::grouphug: Please tell your therapist how you feel. Can you get another urology appt. for a new treatment plan? Hang in there dear.

[peaceplease]

Here I am days later... no better, nothing is helping. I started Elavil about 1 week ago, started at only 2.5 mg as I was/am very afraid about urinary retention which I am prone to with Anti-Cholergenics of which Elavil is one. I am now up to 10 mg at bedtime with NO results what so ever.
Today I spent at least 2 hours on the floor sobbing and feeling like I can't go on any more, but I know that my kids need me.... That is all that I feel like I have a purpose for. I feel worthless as a person for having this vaginal pain, I feel like I don't deserve anything. My intellect knows better, but the emotions and depression is so huge! All I feel every day, all day is vaginal burning, like there is a solution on there of acid or something burning my skin. NOTHING helps, not lidocaine, not estradiol cream, I got elavil, neurontin, estradial cream compounded, I got lidocaine cream with some other stuff, no help, in fact these creams BURN when I put them on. I do not have yeast going on. For the last 2 weeks my diet is super healthy, no diary, no wheat or bread, just low fruit, lots of vegis, fish, lamb, chicken, brown rice, and water, that is IT! No sugar at all other than an occasional pear.

I feel deprived and no matter what I try the vaginal stuff will not go away. I have had IC for 4 years and out of the blue 3 months ago this vaginal stuff started and will not go away.

I don't think I can go through many more days of this, and there is no pain management for it, nothing lowers the pain that I can find.
Sorry to rant and rave, I am just really DONE with my body.

[suncaro23]

Peaceplease,
I am so sorry! What an awful thing to be happening, but you are right that your kids need you. Don't forget that. I'm hoping that today is the day you get some relief. I'm thinking of you.
Dawn

[ICNDonna]

If you're not feeling better this morning, please go back to your doctor. There has to be something that will help.

Donna

[sissygirl]

Peaceplease--

I had a vaginal burning and irritation for about five months that just in the past few weeks seems to be getting truly better. It was very distracting and I felt I couldn't relax and be in the moment as it was always there. I grew to hate the magazine ads for vaginal "discomfort" which suggested the solution would be found in a little tube...

Here is what worked for me--I know you have tried everything, but perhaps you will find a few more ideas here worth a go....You sometimes just need to push until you breakthrough to an answer...

BCPS (I'm 45 and in peri and my doc said that it can be hard to get the right hormone balance with estrogen cream alone); Vaginal vitamin E suppositories (recommended to me by other women, they stopped the external redness right away); Probiotics designed to support healthy vaginal bacteria specifically; Steroid cream for a few weeks; Estrace a few times a week; Celexa, an SSRI which might help pain signals and certainly helped my anxiety and depression; xanax as needed when symptoms were really bad to help calm nerve signals and my anxiety about them; loose clothing whenever possible. Riding my horse, which I think acted as physical therapy...

I hope you feel better soon. Might it be that the Elavil takes a while to do its work?

[peaceplease]

Sissygirl. I can't believe you could ride your horse with vaginal pain, wow, I am so happy for you!

I have to say that I am feeling TOTALLY done with doctors. I don't feel they ever help me and I just feel out of sight out of mind. They all have soooo many other patients and don't truly get or care about the depths of my suffering. I am crumbling within emotionally. I don't really want to live any more... like this.... I want to come HOME to myself, I want to be in the present moment, but I am just constantly railing against the pain and am so horribly depressed.

I don't know if the Elavil takes a while to work, last night I bumped up to 15 mg and still nothing.
How do I get Vitamin E that I can use vaginally, WHERE do you get these?

My Gyn said to get a probiotic I can use vaginally, I bought something called GynNatren, but some people have had bad experiences with it. It also has boric acid in it. I don't know if I can just use a regular old brand of acidophilus to put in my vagina.

I know these boards are mostly about IC, which of course I have, but the Vaginal stuff is the BIGGER issue.
I do have estrace cream and I guess I could try it, though I have heard estradial is better. That I don't have. I have Clobestal (Sp?) antiinflammatory which I did use for about 5 days, it helped the pain, but NOT the burning at all.
I don't know how to get rid of the burning.
Anyway, it is all just too depressing. How do people cope with this type of pain and get through each day without giving up hope? I have no hope at this point, just can't see a day when I am free of this.

[sissygirl]

I think there was a thread a few weeks back about how long Elavil took to work and it seems to me there was a real range from days to weeks...Your whole system may take time to calm down

I get my Vitamin E vaginal suppositories through Amazon...hope I am allowed to say that on these boards. :smile tee..The probiotics I have taken are capsules you swallow--the brand I use are RePhresh--they have been formulated from what I read with the same kind of beneficial bacteria that lives in the vagina, which is different than the kind that thrive in the gut found in most yogurts and supplements.

I know what you mean about doctors--if it is an easy problem with an esy solution then great! If not, it is much harder to get a doctor who will listen and who thinks outside the box...

I cant explain why riding helped--it was something I just refused to give up and to my joy I think in my case it helped with muscle tension that was contributing to my symptoms....

I am feeling better after five months of it steadily and I hope you will be too soon...

[jvr]

Hi Peaceplease,

Have you thought about trying to see if your issues might be PFD related? It's amazing the kind of pain it can cause...I know a couple of the gals mentioned it above, but I thought I'd mention it again.

Jill

[maryla]

I know both of you, your pain...Frustration....depression and suicidal ideation! This disease is horrible to say the least.....yes!!!! I started hurting horribly this past month and there were days that, I just wished that my life would just end. There was nothing that would stop the pain. I was in bed all the time. The last few days, I've had a little reprieve, thank God!!!! I'm going to schedule an appt with a new therapist that specializes in working with chronic pain sufferers.

Peace, One thing that has helped my vulodynia more than anything is the low oxalate diet. Look on the vulvodynia website there is tons of info.

Hugs and blessings

[peaceplease]

I would give anything to find a therapist who works with chronic pain patients. I have a therapist but she is pretty useless around all of this.
I am doing (trying, not going too well!) mindful meditation stuff, have any of you read "Catastrophic Living" by John Kabat-Zinn? Amazing book, problem is I can't seem to utilize anything he suggests because the pain just always seems to WIN!

I have tried Pelvic Floor work before, in the past before I had vaginal stuff and only had IC and it never helped my bladder one bit! That was internal work which I could not do now, no way.
I was to see my PT this week for external work in the pelvic floor but she cancelled due to a migraine and is now all booked. I was pretty upset and let down about this. I have to see her because she is good and is in-network for my insurance so it only costs me $25.00 per session.

Anyway, there isn't much more to say, I do a very very very insanely healthy diet, no wheat, bread products, sugar, coffee, soda, anything that comes from a box or bag etc and no dairy. I live on organic vegi, just a few fruits and small amounts, brown rice, fish, meat.
I don't know if I could handle the low oxycalte (sp) diet and the IC diet never really helped me either and I did it for years.
Thanks for your advice and support. I don't often know how I am going to get through the next minute let alone day...

[maryjoe]

I feel your pain, literally! I too am battling with ic pain and even worse than that is the vulvodynia pain. The burning and aching in and around my vagina. I try to stay positive and keep busy. When I feel myself going to "that dark place" I look back over all of the notes I have made to myself on various different medications, diets or therapies to try. I am on elavil and it helps me sleep and eases the pain to some degree. I have not done the pt yet and have an appt to start that on the 17th of nov. I was just researching the low oxalate diet and realized that every single day I eat almond butter on either frozen waffles or rice cakes for breakfast AND lunch, sometimes even for a snack! I thought I was eating something healthy but see that it is a total no-no as far as super high in oxalates! So now I will eliminate that... hopefully that will help.... but my point is that this pain that we are having has a name vulvodynia or interstitial cystitis. The fact is that its just a name and SOMETHING is causing our bodies to have pain in this area... So there has got to be SOMETHING that will make it go away. Try different things, eat different things, do different things, think different thoughts. If we keep doing the same thing every day we will get the same results every day. I know , I know, this from someone who was GORGING on almond butter!! But keep your hopes up as much as you can ... there is new research coming out practically every day and more and more mysteries are being resolved. I was diagnosed with this over 20 years ago in my early 30's. I"m 51 now. I was in total remission , ate and drank and did whatever I wanted for the past 15 years. Now its back. In trying to remember how I got it to go away last time I think it was a comination. Elavil 10 mg at bedtime. Prozac 20 mg in the morning, ativan as needed and bladder instills of heparin/marcaine cocktail. But I think once I accepted it and stopped trying to rail against it, let go of the anger about it... yea, its pain and its bad and its there , but I'm STILL going to take that walk even if its only half a block. And little by little it just went away... after struggling for about 3 years... it just left. Why its back now I don't know. Hormones? I"m trying to figure it out little by little and trying to stay positive ...
Just do the best you can do, its all you CAN do.. I hope this helps someone.

[Calinda]

So sorry to hear you are having such a hard time. I do think constant pain--affects us emotionally--it breaks our spirit after a while. However, it does sound like you have a nice family and just keep the hope that you will get better. Everyone had some nice suggestions for you--don't give up--try all that you can--and something might work. Okay--don't give up.

[peaceplease]

Thanks for the replies! They mean a lot to me, but sadly, since I don't know any of you and am SO in need of support they only take the edge off the emotional pain I am in temporarily. I mean I SOOO appreciate your thoughts, love, support etc, don't get me wrong, but I need some serious face to face help. I feel so alone, like nobody is helping me sort through everything with my health, and no dr. can figure out how to help me and my husband is at a loss and my family is useless completely.

So, sorry to feel sorry for myself here, I know many of you are also suffering and I wish we ALL could find a cure for ourselves NOW... or very, very soon.

I don't know why, but my vulvodynia goes away as soon as my period starts and then comes right back when my period ends, does anybody have any thoughts about this?
Thanks and :pray:to us all!

[maryjoe]

If its related to your period then it makes sense that it would something to do with your hormones. How old are you?

[peaceplease]

I am 42 years old. I have asked my Gyn to do hormone testing, but she says she doesn't do it as the results are unreliable.

[sissygirl]

I agree--sounds like a hormone imbalace--progesterone can be hard on the bladder and during a period it drops very low/ Are you on bcps by any chance? If that is an "off" week on them, the bcps could be causing your symptoms...

Also, I can state from personal experience that hormone imbalances can cause anxiety and depression too--I went through that this spring. Now on bcps and ADs and am feeling my old self for the most part...

[sissygirl]

also--I am 45 and in perimenopause--my period had begun to change. I didn't have hormone testing, just got on bcps. It is true hormone testing in perimenopause just gives you a snapshot of where your hormones are at during one cycle or day.

[peaceplease]

No, I am not on Birth Control Pills and never have been. Are you saying BCP might help me or they could have been the source of my problems had I in fact been taking them?

[sissygirl]

Both are possible. The first time I had IC symptoms I was on the progesterone only "mini pill." I felt fine on my off week when I wasn't taking them. No doctor suggested they were the problem, and this was pre internet. I felt fine again after I stopped taking them for good.

If your symptoms--including anxiety and depression as well as vaginal pain--are caused by a hormone imbalance, then yes a bcp MIGHT indeed help. I feel much better (still have a irritable bladder but better than it was for sure) on BCPs--it does take experimenting to find a good one, and they are not the answer for everyone. Are you having insomnia, hot flashes, heavy or lighter periods? All more evidence the hormone angle might be worth pursuing...

[peaceplease]

I don't feel like I have other hormonal stuff. No acne, no sleep problems or night sweats, no changes in my periods only that my cycle was LONG when I was younger, like sometimes 45 days, and now it comes every 25-28 days like clockwork. My periods are not too light or heavy and I don't get PMS or cramping, so.... I don't know.
I do sometimes get headaches towards the end of my period.

That is about it. But SERIOUSLY, I have vaginal pain and burning ALL month ALL the time, and boom the minute the menstrual flow starts it is as if everything magically vanishes, all the pain etc, like it was never even there. It is such a tease because I know the pain is right around the corner and I no longer attach myself to anything other than I have a break for a few days. If only i could be on my period all the time.. Now that would be real fun... NOT, but I would take the inconvenience over the pain and burning ANY day!

Do others have ideas about what the relationship between my period and the pain going away might mean? Maybe I will post in Vulvodynia about this.

[maryjoe]

I would say go to an anti aging dr. that will do a blood hormone test. As for their reliability, I am not a doctor. I'm not sure how that would be done on someone that is still getting their period. You would have to ask... wish I could answer that for you. But its worth at least getting done to see if anything is obviously off. Or do trial and error with bcp's if your dr. is willing and if you are game to try...

[peaceplease]

What/Who is an anti-aging doctor... never heard of those, what is the specialty called?

[maryjoe]

go to google and type in "physicians bioidentical hormones" or "anti aging medicine" . Just go throught the different things that come up and you should find a practice somewhere near you. Also , in Suzanne Sommers book on bio identical hormones , she lists alot of physicians that deal with them in different states in the back of her book. What state are you in? I will look in there and give you names if there are any near you.

[maryjoe]

Also, have you gone to Dr. Glazer's forums and websight talking about vulvodynia? Lots of good info there.

[Glenda2]

I am so Sorry you are feeling so Sick and it is taking a Hrd toll on you.

This Pain you are having , Has anyone ever checked you for Endometriosis ?

Back in the early 80's , I was having Odd pain down there. It went on for a long time. Menst. Cycles that lasted for 3 weeks at a time , with a 1 week break , only to do it all over again.

One day the Pain got so severe I passed out and wouldn't wake up.
My husbnad carried me to the car and rushed me to the hospital.
I finally woke up on the way there and the Er doctor examined me and every time he'd press on my lower pelvic area , I would practiacally black out , he said I needed an Ultra Sound and maybe a Ct Scan.

The Ultra sound showed MY Ovaries had Exploded and I needed a Total Hysterectomy NOW , because I was bleeding to death Internally.
I was Rushed Straight to OR.
The surgery was suppose to take 90 minutes the Surgeon told my Husband. It took almost 5 hours. I was a Mess in side , with way too much blood Loss.
The surgeon told me it would be a 2 to 3 month recovery.
Took me between 8 and 9 months to recover.

I have a Scar that would be big enough to stick a watermelon in.


Get Tested for Endometriosis.

[mom_in_ma]

peaceplease,

I don't hang out on these boards often....I've had this on and off for seven years now with blessed periods (even years) of remission, along with periods of intense pain, etc. I've tried most every treatment along with one and a half years of PT. Finally, I just realized that I did better just by living my life.

BUT, in my heart I felt I had to respond to you. A year ago I had a flare up and by early last summer, was exactly where you are now. The pain was mostly vaginal at the time...and the burning was so intense that it ramped up my nervous system all on it's own. I know.

This is what helped me.

1. A saint of a psychiatrist. Chronic pain depletes your serotonin in no time flat and the type of pain that I had threw my nervous system into chaos. After months of the burning, the pain had worn me down to the point that I had severe depression and nearly constant panic attacks. I'll tell you, after a week straight of panic attacks....you are absolutely ready to say, I give. There was no way I could pull out of it by myself.

2. Antidepressants can help...your mind, and the pain. But, I was one of those folks who got retention with pretty much every one of them...so it was a long long road in finding one that I could tolerate and that worked. In fact, we were down to the VERY VERY LAST ONE...remeron. It's a totally different type of antidepressant that does not have the anticholinergic properties that others have. In other words, very little risk of retention. It worked. It gave me back my life...and a few pounds to boot, but so worth it.

3. Eventually, the pain started to slowly ramp down. I was enjoying life again. In fact, I was doing so well that I thought it was all over and I was home free. WRONG. It came back.....but then it want away again. BUT, now I'm able to remember that it comes and it GOES. When you're in pain, it's hard ro remember that you were ever out of pain. When you're out of pain, it's impossible to remember that you were in pain.

4. I just had a glorious symptom free month, but was brought back to my senses by that crazy burning again this past week. The second med that works for me...very much in moderation...is klonopin. It's a muscle relaxer and stops the burning in it's tracks. I'm not a big one for meds...especially ones that create physical dependence, but I've given into the idea that they exist for a reason. I've found that if I stop the pain early, I can calm it down much faster and I don't get pulled into the pain anxiety cycle.

5. In addition to the meds, I'm working on reducing the stress in my life and in my thoughts. I think it's key. Otherwise, it's a viscous cycle...fear = anxiety = pain = fear = anxiety = even more pain....etc. It's important to break the cycle.

I hope you're on your way to finding what works for you.

[Briza]

peaceplease
first off as a fellow vulvodynia and IC sufferer let me tell you that I feel your pain. I wish there were something anything any of us could to ease it for you. :grouphug:

I know you mentioned that you have had no luck with lidocaine gel. Have you tried the lidocaine patches? They work much much better for me than the gel. Used along with cold packs by far is the best relief I have gotten. Just a thought in case you haven't tried them yet!

Original treatments I have heard of here on the board (but haven't tried myself) are compounded ointments/creams of elavil and baclofen and also elavil and lidocaine. The ladies who posted about these combos reported success.

If your vulvar pain has a muscle tension/pelvic floor tension component like mind did you might also benefit from an oral muscle relaxer or oral low dose valium (I took 2 mg valium up to three times a day with much success). I think it is almost a given that if one is dealing with bladder and vaginal pain that the pelvic floor muscles are going to contract and cause even more irritation. And the more pain/burning, the more stressed you get and the more the muscles contract further irritating the delicate tissues down there. I am totally with you on not wanting pelvic floor therapy when things are as bad as you describe. There is a lecture here somewhere on ICN by Dr. Brookoff and he talks about treating his patients with valium in case you need some kind of literature to give to your doctor.

Ok earlier in this thread you asked if IC and vulvodynia are related and I have to say yes mine are even though I probably exhibited signs of vulvodynia long before my first bladder symptoms. Regardless, when my IC hit if I had bladder symptoms at any given moment then vaginal symptoms were sure to follow.

Here is something I found in Jill's online ICN newsletter on the homepage here that seems to be pretty conclusive on proving a link between IC and Vulvodynia:

Prevalence of Interstitial Cystitis in Vulvodynia Patients Detected by Bladder Potassium Sensitivity.
Intravesical potassium sensitivity has been reported in 82% of vulvodynia patients, suggesting the bladder generates their pain and indicating interstitial cystitis (IC)/painful bladder syndrome deserves greater attention in differential diagnosis of vulvodynia. The aims of this study were to: (i) determine the prevalence of IC as detected by intravesical potassium sensitivity; and (ii) survey for urinary, pelvic pain, and sexually associated symptoms in patients with vulvodynia.

Consecutive patients with vulvodynia were surveyed for urinary and pelvic pain symptoms using the pelvic pain and urgency/frequency (PUF) questionnaire, and tested for abnormal epithelial permeability using the potassium sensitivity test (PST). Rates of positive PST were determined overall and by PUF score range, and were compared in patients with intermittent vs. constant vulvodynia symptoms. Main Outcome Measures. Results of intravesical PST.

Of 122 vulvodynia patients, 102 (84%) had a positive PST and 97 (80%) had urologic symptoms. Of the 87 sexually active patients, 81 (93%) reported pain associated with sex. Patients with constant (72/87, 83%) vs. intermittent symptoms (30/35, 86%) had no significant difference in rates of positive PST. Mean PUF score was 13.2. PUF scores of 3-4 were associated with an 86% rate of positive PST; scores 5-9, 44%; 10-14, 84%; 15-19, 87%; 20-24, 86%; and 25 and above, 100%.

Most patients with vulvodynia have a positive PST and urgency/frequency, indicating pain of bladder origin (IC). IC deserves far greater consideration in the differential diagnosis of patients with vulvodynia. This represents a dramatic change for the gynecologic paradigm of vulvodynia, which in many cases appears to be referred pain from the urinary bladder.

Source: Kahn BS, Tatro C, Parsons CL, and Willems JJ. Prevalence of interstitial cystitis in vulvodynia patients detected by bladder potassium sensitivity. J Sex Med 2009 Oct 20

[mom_in_ma]

Briza is right about the Valium. Klonopin is in the same family of meds and does the same thing. Miracle drugs...I swear. I'm also in agreement that my vagina and bladder are in this thing together. It's a joint effort and I was glad to see that study Jill posted earlier.

[peaceplease]

Thanks for your thoughtful replies. I have tried Elavil cream compunded with Neurontin and another one with Estradiol, Lidocaine and an anti-inflammatory. They cost me abotu $70 each and they cause a lot of burning and I can't use them. I tried one of them again just a couple of days ago and it caused burning again.
I also have tried Valium orally and haven't found them to be helpful other than making me sleep. I have them as I found them at times to help with bladder flares, I take one at bedtime and I can sleep better and my bladder seems to be calmer and happier. Since I have started Elavil (now up to 45 mg) at bedtime, my bladder has been much better and I sleep really well so I don't use the Valium. I have heard of Valium suppositories which might be of interest to me.

What are lidocaine patches. I have heard of them, but don't know how they work and where they are placed? I can't imagine you put them ont he vagina as they would get stuck in the hair and you might pee on them!!! Where do the patches go and what are they exactly and who prescribes them for you?

Twice I have had Group B Strep grow out in my vaginal cultures. Normal flora to have in the vagina and usually not a problem, but for me is causing problems like yellow discharge, itching burning etc. I went to the Gyn last week, she said I was very red down there and did a culture, it grew Group B Strep, just like it did a couple months ago. So, once again did Amoxicillan, that gets rid of the yellow stuff and the itching, but I still have off and on burning, pain, irritation etc.

What has been helping me are the Vitamin E suppositories and another suppository with Calendula and Vitamin A, both made by Wise Womens Herbal company. I also was found via the vaginal culture that my lactobacilli are rare, so I also use by the same company their Lactobacilli Vaginal Suppository. The problem is that all these products make me feel so slimy and gross down there when I already feel like there is copious discharge much of the time. I have also tried to use boric acid suppositories to control the GBS, but that clearly hasn't done the trick since I have tested positive for it twice in 3 months.
Besides these suppositories, nothing else has brought any relief. Because my issues all seem to resolve when on my period, it has been suggested by one gyn who is not mainstream, that I could have a allergy/sensitivity to Estradiol which is at its lowest when on my period.
I do see a therapist every week and my husband is very loving and caring. I can have terrible vaginal pain and my bladder is fine, so they for SURE do not correlate on the pain scale.
I am sure I have vulvodynia but it is hard to accept when I also have this GBStrep thing going on too. I think the Group B Strep was the trigger for the inflammation etc, and now it has taken on a life of its own. I have autoimmune stuff going on because when I last had my autoimmune antibodies tested they were elevated. My immune system needs to be downregulated I think.
I saw my PT last week but we didn't work internally at this point. I am sure things are tight down there just for the reasons you pointed out, how could they not be, but I also can't handle anything in me right now as the tissue is red and inflamed and would be so irritated by this.

Please let me know about the lidocain patches and how those work and who would rx. them for me.
HUGS for all of your support, thoughtful replies, and caring!!!! I would take bladder pain over vaginal pain ANY day of the week. The Vpain is truly something no woman should ever have to suffer chronically.

[TexasHoney]

:grouphug:

Hang In There

[amaranthe]

I am so sorry that you are in such horrific pain. I have been there, and feel your pain too.

I definately would give the Lidocaine 5% patches a try like Briza suggested. I use them there pretty often myself and they help me more than anything else because they numb up the area where you put them. A Gyn or GP will r/x them. They are pretty big, (maybe 8" x 8"?), and have an adhesive back, (but it is not like bandaid adhesive, that hurts when you pull it off or wont stick back.) I dont know how to explain the adhesive, except that it sticks well, and can be reapplied over and over, (even if you dont shave "down there". ) Anyway, the way I do it is to press the pad into the lips and everything, and also kind of into the opening of my vagina, and clitoris. It helps me with clitordyia and also helps with vulvadynia. It helps with that sunburned feeling and tenderness too. Then, when I need to urinate, I just peel it off and afterwards, stick it right back on. Some women cut the patches and place them on each side, leaving it open to urinate. But, I just put it over everything. They really help me more than anything when I have these episodes. No Dr. will mind r/xing them. It isnt like asking for a narcotic or anything. It's just a topical numbing agent. The only down side is you can only wear them for 12 hrs at a time. They are suppossed to be worn 12 hours and then removed for 12 hours.

I hope you get an r/x soon and give them a try and that they'll help you as much as they have Briza and me. Please keep us posted. I hope things get better soon.

Sending hugs,
Amaranthe

[Boni]

A doc gave me a a 100ml bottle of Lidocaine once after an exam. I keep it in the refrigerator and it stays super cold all the time.

After sex, (and not before because it will numb your partner...hahaha) I slather it on ice cold to the area and it numbs it and calms it down.

I think you have to get it from a doc.

Hope it helps.

Don't give up trying.

[sully02]

Please peace,

I have been in the same place you are now. Feeling hopeless, alone, in pain, nothing helps, my life seemed over because I could not leave the house except to see the Dr, my husband was and is great but he could only look at me with sympathy but no answers.....................I just read your post from last Nov and pray that you are better now. Please private message me and we can talk all you want about this horriffic disease. I will share with you some of the things that finally got me better, which included taking steroids for a number of months and difflucun for 3 months. And many more treatments and things I did and still do now to help. My nurse who has done research on IC for 17 years looked at my vulva area and was shocked! She said the skin was peeling off........I had to go to my Gyno to finally get it cleared up. It was misery and I don't have young children. My heart goes out to you so much. I have been so depressed I did not want to see or talk to anyone, I believe I could be a sounding board for you if you need me. You do NOT need to feel so alone. We are all here for you.

Praying you are better by now.

Sully (sandy)