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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

» Please tell me this can get better
Yesterday at 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11


Do you ever worry that you're making it up?

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Do you ever worry that you're making it up?

Post  Lucci on Fri May 27, 2016 6:50 am

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for surgical trauma in the area (bladder surgery) when I was a kid, and later in college, rape. I've seen sex therapists, physical therapists, psychiatrists, and obgyns who specialize in the field. I've done hours, days really, of dilator homework, altho I've never gotten past the second smallest in most kits (I own 3 kits from different PTs having different preferences), even with the help of lidocaine for the VV.

I've never been able to insert a tampon, I've never been able to complete a pelvic exam, and I've never been able to have penetrative sex.

This past year, I was diagnosed with Endometriosis and had a laparoscopy to remove two endometriomas and extreme cobwebbing of endometriosis. I am now just finishing up a six month course of Lupron. During the last appt I had with my ob-gyn, she recommended a Vestibulectomy. She is not the first doctor to bring it up (I've moved and been lucky enough to find specialists in both cities), however there was some concern with my other doctor that the vaginismus would be a problem with the surgery. I have a couple months to think it over and, in the meanwhile, am doing as much research as I think is helpful/not anxiety-provoking.

However. Even after all this, all the doctors, all the diagnoses, everything!... I worry that it's in my head. I worry that I'm making it up. I'm not scared to have sex, I desperately want to be able to be more intimate with my (extremely patient, but frustrated) boyfriend of five years. I want to be able to turn off the pain I feel - I've been told by doctors that pain is a sensation created in your mind, which is true! but when they say it, it feels as if I'm somehow being blamed, that somehow if I focused enough attention on it and took just one more deep breath, I could make it go away. I feel like it's my fault, or that I'm imagining it. I worry that if I had the surgery, it will create problems where before there were none.

I know this is not rational. I know there has to be real physical problems. But then why haven't dilators or digital stretching with PTs helped? Why doesn't lidocaine completely numb me to the pain of VV?

Does anyone else ever feel this way?

Thanks - I appreciate your taking the time to read this over.

Lucci

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Re: Do you ever worry that you're making it up?

Post  PainBlogger on Fri May 27, 2016 8:13 am

Do you get unprovoked vulval pain as well as provoked? i.e. are you having pain on a daily basis? If so then that may be causing your pelvic floor muscles to remain at a tight and shortened position, which means that despite the stretching exercises you're battling against the current, so to speak, and not making progress - you or the PT does some stretching (one step forward), the pain tightens the muscles which over time shorten (one step back). I know from personal experience, that I didn't start to make real progress with dilators until my unprovoked pain was under control from medication (and probably the acupuncture I've been having). I still get some unprovoked pain, but I'm probably spending only maybe 10% of my waking hours now with pain down there, and it's much milder pain than I had previously.

I was using dilators for over a year and getting nowhere whilst my pain wasn't under control. Then, after a couple of months with it under control, I started to move up the sizes. It took me four months of thirty minutes per day practise to get to the fourth one and in recent weeks I've been able to have pain-free sex again.

It's not all in your head - yes, if we didn't have brains then we wouldn't feel pain, but there are chemical changes that go on in the CNS over time with chronic pain. The nervous system becomes sensitised to pain signals and so even stimuli that wouldn't cause pain in an unaffected person can cause pain (have a look at 'allodynia' and 'hyperalgesia' on Wikipedia if you're into the science).

Lidocaine - I used it when my symptoms were at their worst and I found the 5% just burned even worse than before I used it, the 2% gel helped a little but didn't numb me completely. I think some people just respond better to it than others unfortunately. Or it could be that one of the excipients in the base is irritating you (like a preservative, maybe).

There are some good books out there on mindfulness. (Mindfulness for Health by Burch/Penman is quite a good one to work through.) There's a lot of scientific evidence out there that mindfulness practice can be very helpful - for everyone, not just pain sufferers. It has no side effects too! Maybe it's worth taking a look at as well as persevering with medical options. If nothing else it may help with anxiety.

I don't know much about the surgical option, but hopefully others can help there.

Don't give up. People do get better from this even after years.

PainBlogger

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Re: Do you ever worry that you're making it up?

Post  fairlight10 on Fri May 27, 2016 10:21 am

Hi Lucci I am interested in the bladder surgery you had. Was it distension? I had my urethra stretched and when I woke up I had tremendous pain and constant irritation in that area. Feeling like I had to urinate most of the time. This never went away and eventually diagnosed with vestibulodynia. I have always thought they upset the nerves with the procedure. Urology just shrugged their shoulders. Sorry to hear of your trauma at such a young age and then to be raped. I have read before of this condition being sparked of with your experiences. You should try and get some counselling. It is never too late. Also my neice by marriage had mild vulvodynia diagnosed. Was given cream and counselling! I wanted to top myself and was not offered counselling although when I had acupuncture I was counselled then. Which I paid for.

fairlight10

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Re: Do you ever worry that you're making it up?

Post  emalita on Fri May 27, 2016 1:34 pm

I've been where you're at as far as trying to convince myself it was all in my head, but then after trying to force myself to leave the house and go shopping too many times, my body proved it wasn't in my head. Yes, it is proven that people who practice meditation can reduce their pain perception; so our mind does play a role in how strongly we allow the pain to take control, but that does not mean this is all made up in your head. This is not all in your head!

I've also had doctors tell me that I have unresolved sexual issues from trauma I had as a teen. I know, for me, that has nothing to do with my pain because the pain didn't come for about 11 years after the trauma. In my opinion, that's just a polite way of trying to tell patients that it is all psychological even though my doctor made it loud and clear that that wasn't what she was trying to say (uh huh). So I just don't admit to the trauma anymore if a new doctor asks (and in my opinion, it's none of their business) because I feel like it stops their willingness to think beyond unresolved sexual issues. Don't get me wrong, I know this is a valid reason for pain in some women...it's just not my reason for pain.

I spent a long time with a wonderful holistic counselor who taught me about mindfulness and meditation. She walked me through guided imagery, and I even have a name for my "monkey mind" as the psychology/meditation world calls the anxiety portion of our mind. I was moved to tears by some of our sessions and even for a moment forgot about the pain, but then shortly after everything came rushing back. I just couldn't find the skills to maintain the gains I had during my mindful practices. I personally believe for me this is a practice I would have had to start prior to my pain, and I will definitely consider it again one day. However, for me, it is more important to not feel alone in this pain journey instead of beating myself up about not being good at meditation; so I'm desperately trying to find a counselor who has experience with vulvodynia just so I have someone to listen. Your counseling sessions were definitely a great step in the healing process, but it sounds like now you will have to convince doctors to focus on the medical side, instead of the psychological side.

Please do a lot of research and read a lot of stories from other women who've had surgery prior to moving forward with it (some have relief and some have their pain come right back months later or are left with phantom pain). Not many other pain conditions have the recommended treatment of just cutting the painful bits out... But you have to do what is right for you, and I wish you the best Smile

emalita

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Thanks for all the responses! More info :

Post  Lucci on Fri May 27, 2016 5:48 pm

Thanks for all the helpful advice and fast responses!

Fairlight10 : The surgery I had was actually higher up - a bilateral uretal reimplantation for vesicoureteral reflux. The trauma was presumably not from the surgery itself (altho scary for a six year old), but from numerous catheterizations I had both before and after to check in with a video camera on the problem area. They gave me no pain meds, and the doctor had nurses hold down my legs and arms during the procedure so that I wouldn't squirm. I was told to shut up when I made too much noise and was crying. It was essentially medical rape, with my mom watching and holding my hand and also crying. I wish there was something I could do to insure this didn't happen to more kids, but I have no idea where I'd begin. The no pain killer/ numbing agent thing was so they could get a decent read of the urethra and my reflexes, but there's got to be a better way to treat a child.

PainBlogger and Emalita : I've read and enjoyed several books on mindfulness and found them to very helpful in other aspects of my life, but unfortunately not as useful for my pelvic pain problems. I didn't mention - mostly because it begins to feel a little ridiculous when I list all of my diagnoses - but as well as PTSD I have something called dysthymic depression which basically is a state of depression that lasts for years, in my case, since high school. I also suffer from major depressive disorder. I've gone thru lots of therapy (on and off psychologists for 8 years, cognitive therapy, sex therapy, and a psychiatrist), and found them all very helpful in learning how to put things in perspective and be patient and kind to my body even while I am frustrated with the conditions.

A year ago I went on Lexapro, which has been an immensely shocking and wonderful relief. I had no idea just how foggy my brain had been, nor that emotions were not supposed to swamp you at random intervals. I feel happiness now for more than fleeting moments. Anti-depressants are not for everyone, but for me, they really helped me in this area. I'm sure my PTSD specific therapy also helped me get past my traumas, and cognitive taught me skills to not jump to conclusions, but for me I'm convinced that there's a hormonal/chemical component that had to be dealt with before everything came to a conclusion. The books on mindfulness were also very helpful in getting me there. As well as being assigned some in therapy, my dad is a hindu/buddhist/spiritual person who has mediated 2 hrs every morning for the past 50 years. I've done some meditation with him and read books by Thich Nhat Hanh, altho I am no where near mediating every morning.

PainBlogger - I love all the studies about pain! I was a psych major in college and found it absolutely fascinating. But now... I really feel like I should be able to control it. I know this would take years of practice and relaxation and everything, it just irritates me that even tho it's my body, I can't control something so detrimental.

I do not feel pain in my day to day life. I can wear pants, even spanx, with no problem. I never had an issue riding a bike, altho it's been years since I did - my PT told me it could be causing me to clench and that I should avoid it. My pain is with pressure, specifically in the vulvar region, stretching all the way up thru my hymen. After breaching the hymen with dilators, I never felt pain any higher up, and I always felt like the clenching was just a problem at the opening. The only other time I feel pain is when I am extremely stressed or reading on forums such as this. I'm not sure if it is sympathetic pain? or what it is, but it burns whenever I read about it.

My medical report after the laparoscopy reported that when they inserted a sponge stick into my vagina, my hymen was fully intact, not stretched or broken. I understand that it's not a cover, just like a rubber band a little bit in that loosens over time, but why on earth is mine still intact? And could it be causing some of my problems? Thing is, I do feel pain lower than it as well, just not higher. The vestibulectomy I would be having, as far as I understand at this point, would be removing all tissue at the entrance up thru a portion of my hymen. My doc said that she does not think the hymen is the real issue, but if it is playing any role in this, that should take care of it.

Thoughts?? Thank you, again, so so much. I notice you respond to a lot of new-comers - you all do such important work.

I should mention that I worry that I'm making it up probably because I've tried so much treatment that has only gotten me so far. I feel so well informed, that I feel like now it's just my body being like, hey, heard of this symptom, why don't I give it to you to try out? I hate it.

Lucci

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Re: Do you ever worry that you're making it up?

Post  emalita on Fri May 27, 2016 8:02 pm

So besides a lot of psychological work, what else have you tried? Have you tried any of the prescriptions that tend to be prescribed assuming the pain is nerve related (e.g. gabapentine, amitriptyline, etc.)? Some of these can be made into compounded creams to apply directly to the vulva.

Have you tried estrogen therapy? The specialist I see believes it doesn't matter if hormone tests are normal because he said women with vulvovaginal pain have high estrogen demanding vaginas (our vaginas aren't getting enough or aren't using it effectively). Thankfully my doctor specialized in bioidentical hormone replacement therapy at the Mayo Clinic in Arizona; so I don't have to worry about horse urine estrogen creams Shocked

I assume you are already using hypoallergenic products to make sure chemicals aren't increasing your sensitivity? Also, I've found my pain can be slightly reduced (not cured) by figuring out what foods I'm sensitive to (for me, peanut butter has been a big inflammation culprit). And, it goes without saying, eating a healthy diet and drinking lots of water can only help your body. These may not cure the problem, but supporting your body as much as you can is never a bad idea  Wink

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Re: Do you ever worry that you're making it up?

Post  PainBlogger on Fri May 27, 2016 8:50 pm

Lucci - Have you thought about trying hypnotherapy? I don't know much about it in relation to your specific problems, but it might be worth researching.

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Surgery for the win!

Post  Lucci on Wed Sep 20, 2017 1:38 am

After much deliberation, I had "the surgery," aka a full vestibulectomy (excluding clit thank god) this January. And oh my god, if I had doubt that it was in my head before, it has been completely washed away. PT is SO much easier - still painful, but just in a "oh, this is sore" not in a "ohmygodgetyourhandsoffofmenow" sort of way." And for the first time in 12 (12!) years of PT, I am making quick progress (size 4/6!).

You are not alone. Altho all pain has a psychological component, that does not mean your pain is your fault or that you cannot find a treatment plan that helps you. The first step is finding a doctor that you trust and listening to them. I put off the surgery for a long time, opting to try all other options first (lidocaine, gabapentin, PT, traditional therapy, etc), and altho I don't regret my decision to be wary of surgery, I do think in part it was because I didn't trust my original doctor that she knew what she was talking about.

Please feel free to message back if you have any questions about what the surgery or recovery was like. I am not a doctor, just a patient, so I limited to stories of my own recovery. That said, sometimes it's nice to hear a success story Smile

Lucci

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Re: Do you ever worry that you're making it up?

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