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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


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.

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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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