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Anybody out there with vulvodynia/vestibulitis??
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Anybody out there with vulvodynia/vestibulitis??

I have had vulvar vestibulitis for about a year now and it has been an emotional rollercoaster for me.  I was just wondering if there were any women out there who share this experience?  How do you maintain a healthy sex life when having pain with penetration?  Also, any suggestions on lessening the pain/preventing a flare-up?
Thank you!
Em
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Avatar_n_tn
my girlfriend of 2+ years seems to be experiencing this same situation.  Our sex life for the past few months has been null. she experiences a painful sensation on the left side of her vaginal wall.  this has been going on for quite some time.

my outrage with the healthworks she goes to is at an all time high. since she does not have medical insurance she has to be treated by these unqualified, rude, poor excuses for Nurse Practitioners. we do not know what to do.  but have scheduled with a regular gynocologist, who will be full priced.  i wish i knew what to tell you... one thing that comes to mind is you are not alone, good luck.
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Thanks for your post.  I know how hard this can be, especially without insurance, but if possible try to find a gynecologist who is familiar with the condition.  A lot of them don't even know what it is and will tell you it is all in your head.  Estrace cream seems to help, and chances are once your girlfriend starts treatment, it will get better.  I'm not 100%, but definitely much better.  I can now get through a pelvic exam without being in excruciating pain!  Good luck with everything.
Best wishes,
Em
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Avatar_f_tn
I am 59 years old and was FINALLY diagnosed with Vulvar Vestibulitus about 2 years ago.  I doctored for years and to every kind of doctor you can think of.  I have been mis-diagnosed and mis-treated for years!  It's been very depressing and so painful.  I do however have HOPE and some ideas for anyone reading this post.

I now take Calcium-Citrate daily!  I started out taking high doses, and usually that was about 8 a day.  I DO NOT EVER drink TEA.  Any kind can cause a problem. You need to find a chart on foods with Oxylate and determine which ones are high, then AVOID them.  Try hard to eat only low Oxylate foods.  DRINK PLENTY OF WATER.  Use Lydacaine in your vaginal area when you're really hurting.  

I've tried taking Neurontin to no avail.  I find using over the counter AZO or the equivalant to Peridium really helps on flair ups.  I often take anti-biotics (I'm sure that's not great but it often helps).  For years I was told I was having UTI's and then the culture would come back negative and yet I was feeling better.  Therefore, the doctor's are great with helping me.  

Now, sex is another thing and it's a nightmare.  Being an older woman and having a very very understanding husband, I am very blessed.  I would suggest that you just simply try being creative!  I'm not good at talking about this much, so use your own imagination here!  Join a group dedicated to helping us.  I belong to NVA but there are others that you might look into.   There is a lot of talk about this horrible decease and I believe there'll be some great discoveries someday.  Congress has actually gotten involved in trying to help women with this very miserable condition.   You'll just have to try things to see what really effects you.  Read, study and pray.  I'm sorry you're suffering.  There are many out there that have this.  The problem is we don't hear about it cause it's embarrassing to talk about.  Get help and don't let ANYONE tell you it's in your head, cause last time I looked, that WASN'T my head!!!! LOL  See, I made ya laugh.  Now don't cry, just get better.  My doctor was very adamant about me not having surgery.  She told my husband to not let ANYONE cut on me.  
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That's interesting that antibiotics help - I wonder how that works lol  Surgery is not an option for me - it scares me too much and it isn't a guarantee that things will get better.  It is just really hard to deal with sometimes because I feel so alone and nobody seems to know what vulvodynia/vestibulitis is.  Anybody I tell looks at me like I have three heads and somebody even said to me "I can understand why you think you'll never have a boyfriend again."  That made me feel really good.  BUT I am trying to stay optimistic and hopeful that I can manage this.  I had a doctor tell me that it was in my head - it's hard to believe that somebody that's as educated as a doctor can be so ignorant when it comes to this stuff.  Sheesh.  Anyway, I hope you are doing well and thank you for your advice!!
Best wishes,
Em
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Avatar_f_tn
I was diagnosed with vulvar vestibulitis 2 yrs ago. I tried daily vaginal estrogen cream x 1 month, pelvic floor physical therapy x 3 months, neurontin and lyrica without improvement. My doctor then did a procedure where he injects botox into muscles in/around the vaginal. And prescribed Lidocaine ointment to use prior to intercourse. I am now 1 yr post botox injection and am now pain free. And, the lidocaine is not needed for intercourse anymore.I don't think many doctors do the vaginal botox injections yet. If you are interested,the doctor who did my procedure was Dr Lennox Hoyte in Tampa Florida. He and his staff were great.
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Avatar_n_tn
Not only have I been diagnoised with vulvodynia also with pelvic congestion syndome and iinterstitial cystitis.  I had surgery to remove my ovaries, look in my bladder and to do an excision of the minor vestibular glands with a posterior perineoplasty to excise the posterior web.  I have had several problems with the surgey site unfortunatley.  The stitches that were placed all pulled out and so my doctor had to put 3 new stitches in.  ONe of the  new stitches came out but he thought it would be ok.  I finally was feeling much better.  I was able to walk ok and sit ok.  I am starting to feel pain again.  I beleive it is something going on with the stitches that are still in.  I am very frustrated but I beleive that it was the only option left for me.

Has anyone else had surgery like this and if so how were your results?

Anyone who has vulvodynia should look for a pelvic pain specialist.  My doctor has been wonderful.  ONe thing he tried that really had helped prior to surgery were trigger point injections.  After several rounds I was finally able to have sex with barely any pain.  I felt 20 again!!!


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I was originally diagnosed with Lichen Sclerosis and used Testosterone ointment for many years til I saw a Vulvar Pain Specialist who diagnosed Vulvar Vestibulitis.  I use Estrace cream topically, apply emu oil for burning and dryness, take Aveeno baths sometimes. use an icepack.  The burning is back again and I'm losing my mind.  A couple years ago, I used Clobetasol ointment which is a steroid used for Lichen Sclerosis.  It worked great at getting rid of the burning, even though my Lichen Sclerosis is supposedly in remission and the Clobetasol is not usually used on women with Vulvar Vestibulitis.  So, I may start using the Clob. again b/c I can't stand suffering like this.  I'm 58.  I keep in touch with several other Vulvodynia sufferers by email and/or phone calls, but I wish I could find someone local who has it.  :-(
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Avatar_n_tn
I seem to have added this to my long list of ailments along with fibromyalgia and asthma just to name a few.........is there any end to what's going to happen to me? Is this auto-immune.........does anyone know?

My GYN perscribed Premarin vaginal cream with a antifungal/coritsone  cream..........it cleared up.......kinda............only to come back again after 2 days.  My husband is somewhat understanding but this seemsd to have come out of nowhere and I'm in agony.

That's very interesting about the tea.............I do drink a lot of iced tea and I will try stopping it to see if it makes a difference. Thanks for the advice on that.

I also find that Balmex helps..........it protects the area from urine burn every tine I go to the bathroom.  Other than that............I suppose I'm comforted to know I['m not alone......but sad to know that other women are also suffering.

sissy
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I'm onto my fifth medical professional in 7 years of vulvar vestibulitis.  I really want the surgery, and have been asking for it for years, but I have been routed around the one doctor that does it in the Seattle area.  I was finally accepted for a referral to the vulvadynia clinic, part of the Women's health center at the University of Washington, where they sent me to a very nice nurse practitioner who they claimed worked for the doctor I was referred to.  I drove 15 hours from Wyoming to her office just to be told that she doesn't do the surgery, and I would have to get on the waiting list AGAIN for the doctor that does it (who I was referred to in the first place).  She prescribed another useless cream (Gabapentin and lydocain) and was told that since I'm so young (27) that they most likely wouldn't do the surgery!  Hello, I haven't had pain-free sex since I was 18.  Why do we have to wait until we are old to enjoy sex?  Now is when we form our relationships, and this is detrimental to it.  I've been with a very loving man for 8 years, but this is really hard on our relationship.  Are there any "young" people who have gotten the surgery, and if so, what state can I go to to get this?
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I am not sure if this is what I have, but I went to a Vulva Clinic in Little Rock and he gave me a vulvodynia pamplet.  I am 46 and had a sudden onset of pain in that little ring around the opening of your vagina, I like to call it the hymenal ring, but it seems like it all of a sudden got a little hard and non-stretchable a few months ago after I had sex.  It is very painful when I get penetrated during sex.  I have used estrace cream and it helped a little at first.  I dont know what else to do.  I've heard about the low oxalate diet, but all those foods are pretty much my entire diet, I would probably starve to death!!  I love sex with my boyfriend, and now I nearly cry every time we have sex.  I am so depressed about it I dont know what to do, it's like someone has told me I can never have sex again.  And I feel like I'm not a woman anymore.  Please help.
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I have suffered with this condition for years now and I was referred to a specialist who had a lot of experience with this condition.  I was first given an anti-fungal treatment (Nizoral) which is supposed to first clear up any underlying thrush type problems.  This is then followed by a low-dose anti-depressant (Nizoral was the one I was given but there are many different ones).  This is not for despression but supposedly can help to treat the nerve endings which are causing the pain.  The dosage is increased slowly until you get some pain relief and then you have to stay on it for a few months.  Apparently this doesn't help everyone but it totally fixed my problem at the time.  Unfortunately after being off the medication for a few years the problem has once again raised its ugly heat but not as severly this time.  I have just started the treatment again and it seems to be helping once again.

I hope this info helps in some way as I know how bad it feels and how it can affect your whole life
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I also have vulvar vestibulitis and I am currently trying to get pregnant.  Any suggestions.  If we do have sex around when I ovulate even though it is painful do I still have just as good a chance to conceive?
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I have been diagnosed with Vulvar Vestibulitis for 7 years. and I am 27. I find it to be very frustrating and understand how you all feel. I have tried the estrogen creams, lidocaine, elavil( amitriptyline), I have tried it all! Last year my gynecologist recommended that I try Physiotherapy and Biofeedback which has helped. I was wondering if any of you have tried or heard of botox treatments for this particular condition. I haven't been in a relationship in 3 years and would still not able to have sex due to the pain. I am desperate to get this fixed.
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I am glad I am not alone.  My Dr. told me for years (5) that this problem is hormonal ( I am 45) she gave me Ovestin and Livial pills which amazingly helped lubricate my vagina and increased my Libido but the pain around the opening  continues.  Everytime I have sex the perineal skin irritates badly so she recommended me Preparation H after intercourse and wait to have sex 3 weeks.   Now I have been diagnosed with hemifacial spasm and a Neurologist recommended Gabapentin and get botox on the face.   I have been reading here that there are patients being treated with this same protocol for Vestibulitis.... So  OMG !  I am not only suffering of involuntary spasms of the pelvic floor muscles but after 5 years got Hemifacial Spasms ?     By the way... Gabapentin did not work for me, I will try botox if not according to a Dr. in the University of Miami I will need surgery on the brain where they insert a piece of Teflon between the origination of the nerves and muscles to stop all spasms.   Please Help !
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I have suffered with vulvodynia for the past 5 years.  About a month ago, I tried Vagisil SATIN.  Within 2 weeks, I was spasm and pain free.  I only apply it at night, but use it every night.

Once I started feeling better, I thought I could get away without applying the cream every night, but it just flared up again.  I don't know if I'll always have to use this cream, but at this point, I don't care.  For the first time in 5 years I feel normal again and I have a sex life again.

Please try it, if you haven't already.  It may not work for everyone, but for me, it was a life saver.

Good Luck
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Avatar_n_tn
I have suffered with vulvodynia for the past 5 years.  About a month ago, I tried Vagisil SATIN.  Within 2 weeks, I was spasm and pain free.  I only apply it at night, but use it every night.

Once I started feeling better, I thought I could get away without applying the cream every night, but it just flared up again.  I don't know if I'll always have to use this cream, but at this point, I don't care.  For the first time in 5 years I feel normal again and I have a sex life again.

Please try it, if you haven't already.  It may not work for everyone, but for me, it was a life saver.

Good Luck
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I suffer from vulvodynia, and it has definitely been just what you described...an emotional rollercoaster. You expect to go to the doctor, they find what is wrong, and they fix it. Instead I went to more doctors than you can imagine, and heard over and over "I cant find anything wrong with you." Meanwhile I'm thinking "well there obviously is as I'm in horrible pain all the time. Not to be graphic, but when it flares it literally feels like a HUGE splinter is stuck in there.

The worst part emotionally was the lack of relief. Its one thing for the doctors to need time to diagnose you when they can control the pain. In my case I was even prescribed hydromorphone (stronger than percocet) with minimal results. All the pain meds really did was drug me through the pain. I would just cry and cry thinking every day was going to me just trying to get through this pain and praying they would find SOMETHING wrong so they could fix it.

Finally, a huge relief came when I went to see a wonderful pelvis pain specialist. He told me he didn't think it was what many doctors had thought. I had even had a laparascopy for "possible endometriosis" which turned out to be non existent. Instead he suggested that the nature of my pain was nerve related, and muscular (as a result of the muscles tightening in response to the inflamed nerve. He suggested we try treatment with antidepressants. Our drug of choice was nortriptyline. At first I saw no noticeable difference, but after a few weeks I started noticing that i HADN'T noticed my pain all day. To have a full day without noticing it was unheard of for me. As the weeks went on it continued to improve. In fact I know it was working because I accidentally drank an herbal tea (be careful with herbal supplements!) that had Kava in it. Kava interacts with antidepressants. Immediately my pain flared up with a vengeance. When I stopped drinking the tea it went down again.

Now we have started gabapentin as well. I don't recommend this for everyone as it can have some side effects.  But the combination of the two drugs...and even just the nortiptyline, has been a life saver. The problem may not be completely gone...but I have my sanity back as I can enjoy some time pain free while they continue to research.
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I have been diagnose with vestibulitis a few years ago.  I tried almost every non-surgical option my gyno suggested.  I moved to Australia for school a year after treatment and due to the big move I had to stop treatment and physio.  After stopping Physio I tried to keep up with the exercises given to me.  After many months of barley any sex life I found ways to make it bearable and sometimes even enjoyable.  Tiny things I didn't think would make much difference.

For me, I learned that when I have to pee my clit gets more arosed (or my vestibule gets distracted)... either way it helps.  Before attempting intercourse we prepare (annoying but becomes natural) by clit stimulation (almost to climax) and then inserting a tool used by my gyno (a dildo type set made of wax in 6 different sizes) and we work our way up from finger, to size 3,4,5.... making sure there is lots of lube! Then slowly and just a bit of a time inserting the penis... it sounds hard but it has REALLY helped! I now have intercourse at least once a week and have been learning which positions hurt more or less... it's all about learning your body.  I'm not saying it is totally pain free but with constant clit stimulation during sex pain is decreased or eliminated.  Thus far I can only handle 5-10 min but it is great!!! I'm only getting better and can't wait to begin physio when I get back to Canada.

Good luck!!
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Hi, I was diagnosed with VVS in August.  After six months of doctors, creams, procedures, a biopsy, etc,  I finally got a second opinion from a specialist in uro-gynecology.  He diagnosed me within 10 minutes with VVS.  This new doctor is treating me with amitriptyline which is a tricyclic antidepressant.  It is also prescribed for people with nerve pain like VVS and fibromyalgia.  He started me out on a low dose and it did help but not completely.  So on my second visit a month later he upped my dose.  I'm still having the burning, but it is not constant and I'm not always focused on my crotch like I used to be. ; )  I'm still not 100% positive that I don't have other issues going on.  I have the burning on the vulva, but sometimes feel swelling and discomfort in my vagina.  I don't have any pain upon insertion so I questioned my doctor and he said I have a mild case.  I can't imagine what you other ladies must be going through if my case is mild.  I'm having clear discharge at the same time that I feel this vaginal discomfort so I wonder if I have some other infection.  But this doctor says I don't have an infection (though he never tested for one) and that I have normal post menopausal discharge.  I hate that I can't give my full trust to any doctor anymore.  I know my body better than the doctors but I get conflicting information and it's so frustrating.  I've started taking the calcium citrate that others have recommended.  And I keep a food diary to see if I experience the pain as a result of cerrtain foods.  Anyone feel this could be the result of a food allergy or something?  I guess I just want to know why this all started and what will make it go away.  But my specialist said that no one really knows those answers.  So frustrating.  
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I had surgery for vulvar vestibulitis when I was 14 years old after dealing with the pain for a year.  It was like an instant relief.  Before, it had hurt like hell when I would go to the bathroom, but when I went at the hospital after waking up I was shocked to have no pain after so long.  If anyone is looking into surgery for this condition I would highly reccommend Dr. Dubose at MUSC in Charleston,SC (if she still works there).  A year after having the surgery I was diagnosed with interstitial cystitis and also urethral stenosis.  I've been dealing with occassional pain from both for 11 years now.  A couple months ago, I noticed I was having the same pain I had before my surgery.  I was wondering if anyone has had a reoccurance of vulvar vestibulitis after surgery?  It could very well be something else, since it's been 11 years, but the symptoms are all the same.  Has anyone ever had 2 surgeries done for this condition?  If the pain gets any worse I'm getting an appointment, but I'm holding off as long as I can 'cause I'm not on my parents' insurance these days.
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Based on my experience as someone who has been through this entire thing for eight years...

I would recommend doing research and making phone calls to find a doctor in your city that knows what this condition is and is willing to work with you.  Not all gynos have an idea about it and many haven't even heard of it.  I was lucky to find one doctor in Canada who told me of the research centre in Haifa, Israel.  I was diagnosed and treated while I was there, which was a major change from the confused looks I got in Canada.  After 5 years of bouncing from doctor to doctor, I finally had a team of gynecologists, pelvic floor physical therapists and a social worker/psychologist all in one clinic who were specialized in this condition.  

You need to take this on from all angles.  Treating the symptoms is not the solution.  Once you have the physical treatment started, you need to deal with the emotional burden on you and your partner through single and couples' therapy.  

It's also helpful to find a pelvic floor physical therapist.  My experience has been that they know a lot more about treatment than the doctors.  I see mine anywhere from every week to once a month, depending on how I'm doing.  We've tried creams and they don't really help me.  But the physio has basically saved me.  I do my own exercises at home every night with a vibrator that has a curve at the top (I don't turn it on) which stretches out the muscles and allows me to reach trigger points that I can't get to with my hands. It looks like this one http://www.****.com/ This was my physical therapist's idea and it has been very effective.  For the outer skin irritation, there is a a skin stretching method called skin rolling to work out the fascia. She told me to use this cream http://www.****.ca/home.htm.

It also helps to do 30 minutes of cardio a few times a week and to stretch or do yoga.  This adds to nerve mobility along the spine and hip flexors, which is really important.  I suggest looking into the book Healing Pelvic Pain by Amy Stein http://www.****.com/.  She has a long list of things you should do everyday and it's a little unreasonable but if you take on a bit at a time and create a regimen that works for you, you will notice a difference.

So I suggest:

1) Do research and find a local specialist on the problem
2) MD, Physio, Sex Therapist
3) Find out what you can do at home to improve your situation (like the vibrator-trigger point massage/skin rolling)
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I feel everyones pain - literally. I am 30 & have suffered from what doctors in Australia now call "chronic vulva pain"  for over 13 years. It has not eased off (it's gotten progressively worse, more complicated and is one of the most severe cases).
I started going to physiotherapy 10 years ago - back then they didn’t know a lot about the condition They put me on biofeedback units which then were great big computers that measured pelvic floor contractions via vaginal probes. Hard to deal with when you pass out from internal exams. I also used dialators (glass testubes aimed at stretching the vagina).

Now, the technology is relatively simmilar but the experience of the doctors is much better. I use a biofeedback unit that could fit in my handbag but does it help? I'm not really sure. I think physically being able to see the lights or feel the buzz of a biofeedback helps to understand what’s going on with the pelvic floor, but that is because we are visual creatures. I still use dilators from time to time and my physio even suggested vibration therapy....hey it's not all bad. Vibrators help to numb the area - like injecting botox....numb to the point that you can work on the "knots" with a dialator. It can be successful, even to use before sex - if you get that far. Recently, my physio is trying more new age techniques like using a mirror and touching the area with different objects, on different sides to test if my brain computes. Odly, mine doesnt. It just feels pain all over, sometimes when shes touching my leg. Interesting. We have also talked about pain mapping and using a scaled photograph to familiarise the brain with the vagina. Les face it - we can't see it. It's not like it's our arm and we can just study it.
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Over the past decade I’ve been prescribed endep - an antidepressant to help with the neuropathic pain. I think it works somewhat but I don't like taking tablets daily and the result is not worth that to me so I have just come off them. I also use vagifem pessarys twice a week (to help with the burning and dryness) - not sure of their effectiveness but they are particularly good post-menopause apparently as oestrogen drops. I have tried lignicane (a numbing gel to use during sex). I'm sure we all agree - there is nothing powerful enough to numb that kind of pain -good try though -I still use it sometimes.

Surgery wise, I have had ovarian cysts and benign tumours removed, and two biopsies on breast lumps which make me wonder if it is hormonal? I had a pudendal nerve block (where they inject cortisol into the pudendal nerve inside the vagina). This operation apparently often fixes the problem - for me - it has resulted in me getting quite frequent and severe back problems (thoughts are that while in the operating chair, it pinched the nerves in my back - unsuccessful but worth a try. I have also had an operation to cut skin from around the vagina (to remove some of those nerves that were causing the most pain) This did not help me despite hopes it would solve a lot of the pain. I suffer from overactive pelvic muscles internally but also have suffered with the external pain since my first sexual encounter so have actually never experienced sex any other way.

I have tried low-oxalate diets, yeast free diets, not drinking, avoiding bike riding and horse riding (thats a big no no). I do have IBS which is common, but whether it’s a biological thing, or related to the stress of dealing with the condition, is unknown. The psychologist I saw would say it is the anxiety and stress. It's worth talking to someone too. I didn't for about 11 years. Now, I am more at peace with everything. It's about pain management now, not a cure. Takes the pressure off a little. Also a reality check.
I have tried calcium citrate 10 years ago so perhaps I'll give that a go again. I think the only cure may be a natural birth. I am thinking of trying for a baby in the next few months so am happy to report back on whether this helps to "stretch things out" but the thought of a natural birth scares me incredibly - considering I can't use a tampon and childbirth It's painful at the best of times......passing out in a gynos office is bad enough...... passing out during childbirth.....well it may be my only hope.

I am extremely lucky to have a husband who understands. We got engaged quickly and we just got married so sometimes I wonder if he knew what he was really in for. Perhaps not. In response to some of those concerns in keeping a relationship, when I was in my 20's I struggled to keep one due to the stress. I used to feel the way many of us feel - alone, scared, accepting of the fact that I would be alone because of my condition. I always hoped that wasn't true but thankfully, when you meet the right person, they stick by you rather than run away and that sure does make dealing with this problem a little nicer. I've sat in probably 300 chairs waiting for appointments over the years on my own, so it is nice to have someone next to me now, helping me through.

It is still really hard, a daily struggle for us not to be able to make love like a normal married couple. We fight about it sometimes. I broke down for the first time a few nights ago. There does come a time when you need to complain and even when you do - no one but yourself, or other sufferers can really show empathy for what you feel - even when they try - they just can't understand what it feels like.  For me - this is the time I finally want to speak up. 13 years is a long time. It's not cool. It's not ok. But it IS life and we do have to deal with it with a positive attitude and a willingness to try anything to make it more manageable. It is extremely easy to slip into depression, anxiety or reclusiveness with this condition and I think I managed to avoid all of that because I am strong - stronger than I give myself credit for and now, no matter what happens. I know I can do anything.

I do still have sex occasionally, pushing through the pain because let’s face it. Sometimes the lack of intimacy hurts more than the physical pain. Although, now this condition is such a part of me that I don't know my life any other way. When I really think about it, it makes me really sad from time to time. What makes me sadder is that my husband is de-sexualising himself for me. That hurts me because he is giving up that part of his life to take the pressure off me, but I am slowly learning that there is a lot more to sex than penetration - and men are happy with that. That kinda takes the pressure off and if you’re ever feeling scared about sex - just step back a bit and enjoy the cuddles and the physical touch, without letting your brain auto-pilot to the penetration part....i wish I learnt this earlier.

Finally after 13 years I know that this is part of my life, just as asthma, or diabetes, or lung disease is for some. My pain will probably never get better - despite going to weekly/monthly physio sessions and seeing a team of doctors (in Western Australia) who run a pain clinic (a gyno, a physio, an anaesthetist and a psychologist). It just won’t go away. I’ve accepted it.

They maintain there are neither real causes nor cures for this disease. I never was abused (from what I can remember but I did have a friend confide in me when we were 12 that she was getting abused, and it profoundly affected me.) This could have been the trigger, but so could have horse riding so it doesn't pay to "what if". My mum also had problems so I think it is genetic.

To compound the issues I already had with sex and abandonment, I had a boyfriend at 21 who wasn't so patient and raped me. As you can imagine, already anticipating the pain of sex, then having it forced, it only made things worse for me and I am still recovering from that incident almost a decade later.

To sum up, the relationship I have with sex after 13 years of suffering is bitter-sweet. Of course, biologically, I want sex, but to want something and not be able to have it, or to give it to the one you love, well, it makes you feel like less of a woman. I'm sure many can relate to this. I look forward to the day - if there ever is one, that I can feel like a woman for the very first time. Until then though, If I can help anyone out there in anyway, please let me know. My advice is: Never give up hope, keep smiling, stay strong, and don't let anyone tell you that your problem only exists in your head. Trust your gut, fight for your beliefs and try not to dwell on the problem as it only makes it worse. We only get one chance at life, so focus on the things that make you happy, not the ones that get you down. Your life is more important than your vagina. Oh, and buy a pink sparkly vibrator. It doesn't feel like therapy and the man in your life might like that side of you. he he. Peace and Love from Sunny Australia.
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Avatar_m_tn
I was diagnosed with vulvar vestibulitis 3 years ago.  I was 24 at the time, married for two years with a one year child.  Very happy until this started!  My gyno was able to diagnose me right away, but nothing we tried fully gave me relief until recently.  I had tried lidocaine, estrace, gabapentin, effexor, and several others. Some gave me slight relief, but still very painful.  My doctor wanted to try everything before we even talked about surgery, which he was against.  He wanted me to always be looking up what I could on the internet to see if I could find anything different than he knew.  So I brought up the subject of trying an injection.  He had never mentioned this option to me but I was starting to find more and more articles about it online.  I seen articles about lidocaine injections, steriod, and botox.  The only one he felt comfortable trying was a combo steriod/lidocaine injection.  He had used this before but for something different.  I want to say he used it on women who had burning sensations.  The injection was called kenalog (not sure on the spelling but it is pronounced that way).  He actually got the injection from a dermatolagy office in the group of doctors there.  He injected me everywhere I had pain with the q-tip test (right and left sides for me).  I was not nearly as painful as I thought it would be! I thought that it did not work so two weeks later I was back at his office and he did the q-tip test again and to my surprise it had worked really well!  I only had pain on the left side still and it was only one small area.  So he re-injected that area and told me to leave it alone for several days.  If this did not work he wanted to try and freeze that one specific area off.  So at least we had a promising plan for once!  I was so excited! So after several days I still had pain =(  I made another appt. to go back but it wasn't for a few weeks.  About two weeks after my last injection all of a sudden I had no pain!  I was actually in shock!!! So of course I tried to have intercourse right away (with my husband! Lol!) and I enjoyed it for the first time in 3 years! We were both soooo happy!  Lol! It had been a rough 3 years, mostly because I had a very difficult time dealing with the emotional toll it takes on you.  But my husband has always been 100% supportive of me.  Thank goodness!  I don't know if the injections will last or if I will have to have them again in the future.  For now I feel like a normal, healthy, happy 27 year old with a normal sex life finally!  My advise is to keep trying different approaches and never give up.  Find a gyno you feel comfortable with and trust.  My gyno is male, but surprisingly he was so supportive of me and always wanted to make sure that I was doing ok emotionaly because he knew I was married with a child and this obviously isn't something all married couples can work through. Good luck to everyone out there suffering from this. I am trying to post on every blog I have read in the past hoping this treatment will work for others too!
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Avatar_f_tn
I am 22years and have been with my long term partner for 4 years. I have the same condition, I am currently seeing a specialisers therapist as well as a good group of gynaecologists. I have been prescribed nortriptyline 30mgs every evening however I haven't been taken this dosage for long as it was previously lower it seems to have helped. I was prescribed a numbing gel which you apply 30mins prior to intercourse but I explained after a while of using it not only did it not work but it after waiting half an hour we find it ruined the moment. I have been going to the sexual health clinic at my local hospital for my condition for about a year now and they keep saying it takes time but we will see improvement.. I didnt believe them until my previous app in which I had successfully managed to control muscle spasms which are triggered by tensing when you know it will hurt, and I had reduced inflammation and sensitivity. I thought I was alone as although I have good specialists they still explain a lot is experimental. I am pleased that you all can come forward and explain your experiences with it too. Thank you.
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Avatar_m_tn
I have vulvodynia (for many years; sex is very painful) and my husband and I went to a highly qualified MD at Virginia Mason in Seattle and she did not know what to do either, nor did she seem to know much about it.  I have been to several doctors and the only one who seemed familiar with it was in our small town and wanted me to take Amitriptyline (tricyclic antidepressant with lots of side effects).  So you are probably not getting any worse medical help than the rest of us.

I think the vulvodynia/vestibulitis is a condition that is very poorly understood and is still being studied.  I get the impression it is just now even being discussed.  I searched extensively online 5-6 years ago and could hardly find anything on it or anyone talking about it.  Now there is much more.  

The theories I have found to be the most promising are:
1) Monistat may have caused permanent chemical damage
2) Pelvic floor exercises have helped some people (theory related to muscles being too tight or weak)
3) Vulvodynia may be related to interstitial cystitis and it helps some people to take acid reducers
4) New one (for me anyway) -- birth control pills permanently alter your body's ability to produce testosterone, which these tissues require
5) Also new: low dose Naltrexone helps because it's an autoimmune disorder
I think it's up to all of us to figure this out.  For a good discussion and some links to more information, check out:
http://www.****.com/community/share/my-experience-and-treatment-vulvodynia-and-vestibulodynia?page=2
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Avatar_m_tn
Hello, I am 23 years old and yesterday I had surgery for vulva vestibulitus. I am on Day two of healing. Surgery only took about an hour and surprisingly I am not in as much pain as I anticipated. I will keep you posted. I had surgery at johns Hopkins after seeking advice for over 3 years. If you would like to get an update email me at ***@****.  I am also open to any advice in terms of healing. Thank you, best of luck to those dealing with this condition.
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Avatar_f_tn
how are you feeling after the surgery?
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Avatar_m_tn
I'm 25 and am getting surgery on January 15. It was simple for me. I went to a new doctor who promptly referred me to a specialist who promptly told me I needed surgery. And immediately. No mention of age at all. He said I needed the surgery and I agreed with him.
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Avatar_f_tn
It's been 20 years for me.  That's how long I've been married.  No one ever had any idea what was wrong.  After about 5-6 years, I accepted it.  I would always have pain with intercourse.  That's just the cards I was dealt with.  Then my doc referred me to a gynecologist who diagnosed the vesibulitis and recommended surgery.  I am so excited.  I cried in her office.  I just hope it works.  Wow, to think that intercourse maybe could be enjoyable for both of us!  Wouldn't that be a trip!  I do wonder, though, will it return?  And what will I lose when that tissue is removed.  I was so happy that she had a solution for me, that I forgot to ask the questions.  Surgery will probably be scheduled in the next couple of months.
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Avatar_m_tn
Did you have surgery? Did it help?
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Avatar_f_tn
Well, I had the surgery one week ago today.  The pain for me was pretty mild.  I used the meds on schedule the first day, instead of waiting until I needed it.  I tapered it down, so I've been only using one or two tabs/day for the past couple days - and I probably don't really need that, but I don't like to experience pain at all - I'm such a wimp.  Seemed days 3-5 were plateaued without improvement.  The pain killers cause constipation, so every time I had to go, I would bleed a little more.  Still, not too bad, though.  I started max dosing of Metamucil a couple days before, and still continue, now.  Feels better to sit with legs crossed because it puts the pressure on one hip rather than in the middle - it can feel like you are sitting on a golf ball or walnut.  Sofa is better than a chair, as it distributes the weight more to the tailbone.  Wore a skirt the first week and went a few days, at home, without underwear, since the doc recommended to keep it dry and let it air out a bit.  Baths 1-2 times daily, starting the day after surgery.  My follow-up visit is next week.  She says I can resume "relational" activities in about 6 weeks, so I don't know yet, if it's effective or not.  Still have to wait to find out.  The doc said she didn't know exactly what the glands that are being removed are good for, and that I was not likely to have any issues with them being gone, and not likely to have the problem return.  Most all of her patients have been very happy with the results.
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Avatar_f_tn
I'm 51 and completely agree with you. My case is a little different. I also had adenomyosis over that. After hysterectomy -kept my ovaries -, the vulvodynia was gone. I had stopped coffee (tea, hocolate,etc...) for 2 years and 7 weeks after surgery I had 2-3 coffee a day during 3 days...hell!! The burning was like if I had a UTI, and it was sudden.

I have my own test strips and tested for 2 days...negative and no discharge. It could not have been my uterus; it was gone! So I started to follow the low oxalate diet, took calcium citrate and drink a lot of water. I thank God for Azo (piridium). I think that the burning the urine creates on the vulva (acidity + oxalates) affects the fine nerves of this sensitive area.

I also urinate a special way :) and it helps! Sit wide legged, keep "everything" away from your urine while urinating, patting afterward with cold water on a tissue - azo stains - then pat gently with a dry one. Wear lose clothing, sit the least possible...and be patient. Fluctuating hormones can be responsible too. No no: coffee, tomatoes, spicy meal, soda and aspartasme. Find ressources on the web becausedoctors DON'T really know about it.

Sex; exactly...use your imagination :) When you can't receive, give. If you stay with the diet (adjustments could be necessary), you should feel better after 2 weeks ( + Azo + water + Calcium citrate). It may constipate you but it got to get into your system.

Prelief (2 before a non-safe meal) is a life saver!

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