vvssupportgroup-blog-blog

[vvssupportgroup-blog-blog]

gotthatvaginismus reblogged your post:Let’s talk about comfortable sex and uncomfortable...

I’ve found that even though I have pain from the actual vagina, stimulation of the clitoris is very enjoyable. All my...

That’s a good one, gotthatvaginismus :) For many people, the clitoris is a great way to stimulate yourself and have an enjoyable experience. I think that it’s also good to remind yourself (and your partner(s), if you have them) that oral sex/clitoral stimulation is a good sexual experience and that you don’t have to do anything else.  

For my partner, I know that he sometimes feels like he wants to “do more” for me. And I have to say “This is it. This is the most “more” I can do today. This is a positive experience for me and anything else would not be. So like, please keep at it, dude.”

Anyone have any other comfortable or uncomfortable sex stories?

[vvssupportgroup-blog-blog]

Let’s talk about comfortable sex and uncomfortable sex

Hello, this is Aster, one of the mods on vvssupportgroup. I was thinking lately about different kinds of sexual experiences and how there’s a pervasive image in the media of there being one way to have Real Proper Sex, namely penetrative sex where both participants come to orgasm. I was also thinking how unrealistic that is - there are so many ways to have sex for many reasons. The idea of one type of Real Propr Sex is ultimately harmful to people that don’t have this kind of sex - including people with VVS, like us!

So, maybe it’s a little forward for a Sunday morning, but I was wondering if there were any people with VVS/vestibulodynia/vulvodynia who wanted to talk about different ways they do sex/have sexual experiences with a partner that are positive for them. 

This can be any kind of sex you want - positions that make penetration easier, other types of sexual experiences you’ve found fun, ways you and your partner(s) do sex that make you feel fulfilled even if you don’t come to orgasm, etc.  And because I know not everyone has those positive experiences - feel free to message in your hard feelings too - partners that just didn’t get it, feelings of pain during sex, the conflict of wanting to have an intimate experience but not wanting pain. We get it.  Send us your comfortable sex, send us your uncomfortable sex. Reblog this if you want or message us if you want (we can answer privately if you want, no problem). We’re listening. 

[vvssupportgroup-blog-blog]

Hello!

Hello everyone, my name is Aster and I’m a new mod here at vvssupportgroup!  I’m going to introduce myself by telling my VVS story and then talk about things I can do for you guys :)

I’ve had VVS (more specifically vestibulodynia) for about 2 years now. I’m working on it with physiotherapy and with nightly* dilator stretch exercises & lidocaine (*okay, not that nightly, who am I kidding). I found out I had VVS when trying to have sex for the first time (early 20s) with a long-term boyfriend, tried a couple more times (it never worked because, you know, pain) and then eventually went to a gynaecologist. They said I probably had a yeast infection (I think this is a typical story for VVS, haha) but after few months of that treatment not working, I was referred to a specialist. I’m super lucky that my city has a clinic specifically about vulvas & the various things that go wrong with them. The specialist there knew exactly what I had and sent me to a physiotherapist. So, all in all, it probably took me half a year to figure out what exactly was going on down bellow. I’ve spent the following year and a half working on it.  The type of VVS I have is mostly due to hyperactivity of the nerves and muscles in the vulva/vaginal entrance. The muscles used to be super tense all the time, but that’s gotten better. Now, I’m working on the fact that my super sensitive nerve fibres interpret any serious stretch/touch as pain. Lidocaine and physio are helping with that but it’s still a problem. I also have anxiety; this anxiety causes sympathetic nervous system activation which sets off my VVS (ridiculous). Because of this, I try to have a pretty holistic view to working on VVS, simultaneously working on anxiety & re-training my vulva to not interpret touch as pain.

In the last year, my VVS has gotten better, I have to say, but it definitely isn’t ‘fixed’. I haven’t been able to have sex yet - though I admit I’ve been super reluctant to try since the time I tried last year was so painful - but I’m still with the same guy I found out I had VVS with. And, no be honest, even though we don’t have sex, we still have a pretty amazing relationship. So, I probably can’t give you guys any sex advice but I can definitely talk about maintaining intimacy & physical closeness in a relationship when you can’t/don’t have sex.  I’m also in medical school, so if you have any paper you’ve heard of on VVS and want me to track it down and read, I’ll do my best to find it for you guys. I can also interpret most most medical mumbo jumbo so if any doctors are speaking jargon and you want help, I’m your person.  Oh, that brings me to my last point: I’m agender. So, yeah, I have a vulva but I’m not a girl/woman. I understand the sucky-ness of having a genital issue and having to navigate biological essentialism in medical practitioners while being trans/nb. If any of y’all are trans/nb and want to talk to about that, I’m definitely here for you. I think that’s all for now! I’m super happy to be starting on a mod here. If any of you want to chat, for any reason, feel free to shoot us a message. If you want it for me specifically, just say that it’s for Aster.  Goodbye! Happy long weekend to those of you that have it! 

[vvssupportgroup-blog-blog]

Condoms are only 98% effective when used correctly.

Sugar can cause infections in the vagina. This means things like chocolate sauce, honey, and lubricants with glycerin can be harmful.

Having sex with an intoxicated person is legally rape in most US states, even if the person verbally consents. In the eyes of the law, drugs and alcohol impair your ability to consent to sex.

Unprotected anal sex is the most dangerous sex act when it comes to spreading STIs.

Not everyone can climax from oral sex or even likes oral sex. Don’t assume—ask your partner what they want!

Condoms expire! Check the date on the wrapper. Also, storing them in wallets is not a good idea (see #8)

If someone with a vagina has unprotected anal sex, semen can drip down into the vagina and pose a (slight, but still real) risk for pregnancy.

Do not keep condoms in your wallet. The friction and heat exposure of keeping them there can make them ineffective. Keep them somewhere cool, dry, and out of sunlight.

You should be tested for STIs with each new partner you have. Annual appointments are not enough protection if you have multiple partners in that time.

Having anal sex does not lead to a gaping asshole unless your partner is literally an elephant.

Sex with elephants is illegal. Don’t do that.

Masturbating while wearing a condom can help people with penises get used to wearing them before sex.

Penis size does not define your worth. It is not the be-all, end-all factor for most people.

In fact, lots of people with large penises have trouble having sex without hurting their partner since the average vagina size is 6”-8” when aroused (it’s only 3”-4” when not aroused!).

Your first time will almost definitely not be your best time. That’s okay, I promise.

Herpes and pubic lice can still infect you if a condom is used if testicles come in contact with a vuvla.

Only one out of three people can orgasm from receiving vaginal penetration alone. You’re not broken.

People with penises can orgasm without ejaculating.

The muscles in a vagina can be abnormally tense and cause intense pain when penetrated with a toy, penis, or tampon. This is called vaginismus and treatment for this includes relaxation therapy and using medical rods to help the muscles relax.

The number of sexual partners you have does not define you. This rule applies to all genders.

A diet of lots of dairy and meat can cause ejaculate to taste bad. Fruits that are very sweet (like pineapple) help combat this for some people. However, due to body chemistry, medications, and other factors, it might not always do the trick.

Dental dams make oral sex with someone with a vulva safer. They are thin sheets of latex and can be home-made by cutting the ends off a condom and slitting it lengthwise to make a alternative option if you don’t have access to dental dams.

The clitoris has 8,000 nerve endings in it. That’s twice that of a penis! So, go gently until encouraged to do otherwise.

Sex does not have to stop when someone ejaculates. Remove any condoms or clean up any mess, and keep going until everyone is satisfied!

Communication is the number one factor to a better, healthier sex life.

The hymen is not a bone, and does not break. It is a membrane layer that stretches. It can tear, which can lead to pain and bleeding. However, sex for the first time (or ever!) should never hurt. Go slower and focus on foreplay to increase natural lubrication.

Sexuality is fluid for a lot of people. Don’t worry about labels until you’re sure in your sexual and romantic interests. Explore freely and worry about terms later.

Orgasms release hormones that are natural pain-killers. This is why some menstruating people masturbate when they have cramps, because the body naturally reduces pain after an orgasm.

The hormones released also account for why some people cry or get very emotional after an intense orgasm. It’s totally normal.

There are limitless kinks in the world and so long as they are safe and consensual, there is nothing wrong with them.

Medications and mental health disorders can mess with your sex drive. Talk to your doctor if your sex drive has suddenly increased or decreased after starting a medication—there may be alternatives.

There is nothing “un-manly” or “gay” about enjoying anal play. Most men who try anal enjoy a little sensation in that area. People with penises also have a p-spot (prostate) and can have intense orgasms through anal penetration.

Always use lubrication generously to avoid vaginal or anal tearing.

Urinating after sex can reduce the risk of a UTI in people with vaginas.

Enjoying casual sex does not make you a bad person if you are up-front with your intentions and don’t maliciously seek to hurt others.

Condoms come in multiple sizes! It should never be loose or painfully tight.

Being sex-positive does not mean that everyone needs to enjoy sex. It simply promotes the happiness and sexual exploration (or non-exploration) of others.

Porn is not an educational guide to sex.

Certain positions feel better than others. Switch it up and find out what works for you and your partner(s).

Condoms are more likely to break if you don’t leave a reservoir tip for ejaculate.

Labia are often asymmetrical. Your long/uneven/poofy/dark labia are beautiful and there is nothing wrong with your body.

Up to 80% of people with a vagina can squirt with either g-spot or clitoral stimulation.

Drug store pregnancy tests are just as effective as brand name ones. In some cases, they’re even MORE effective.

Elevating your butt with pillows can make missionary sex easier for those of us with a big tummy or thick thighs.

Plan B does not work on people over a certain weight (160-175lbs).

There are safe alternatives to condoms or oral contraceptives. Talk to your doctor about your options.

Sex toys can open up a whole new world to folks willing to explore.

Orgasms can be highly psychological. Most people can’t climax when they’re upset or distracted.

Birth control can cause people to miss periods or spot in between periods.

Sex doesn’t have to be gentle if you don’t want it to be. There are healthy ways to explore rough sex or BDSM.

xx SF

[vvssupportgroup-blog-blog]

Hello ladies of Tumblr! As a victim of vestibulitis I decided to start this support blog. A lot of people aren’t aware of this condition and I would really like to change that. It took me two years until a doctor finally diagnosed me with something other than a uti or something similar.  I’d love to reach out to others and provide support/help that I have been trying to find all over the internet. 

Don’t be embarrassed, don’t hold back, tell your story!

[vvssupportgroup-blog-blog]

Because I’m too busy to write Part 2 at the moment, but still want to write something, here are things that bother me sometimes:

• The fact that the only treatment I’m currently getting is “meditation and kegel exercises”.

• Watching tv/movies where couple have sex like 3 times in a row. FUCK…

[vvssupportgroup-blog-blog]

I’d love to hear about the different treatments others with vestibulitis/vulvodynia have been given! I know tons of women who aren’t getting the right treatments and it’d be cool to share because it might be able to help someone else who is struggling. Please submit your story/experience with treatments!

[vvssupportgroup-blog-blog]

My own experience with vestibulitis.

Hello, I’m Drew. I’m a seventeen year old girl who was diagnosed with Vestibulitis about a year and a half ago. I first started having symptoms shortly after I was diagnosed with Epilepsy which has always troubled me, I’ve always wondered if there was some kind of link. 

Anyways, all of the doctors I saw at first diagnosed me with UTIs or Yeast Infections which was annoying as all hell. They wouldn’t listen to me when I would tell them otherwise. I looked it up all over the internet and found no answers, I tried online forums for women and still got the same results the doctors were giving me. Inconclusive, UTI, Yeast Infection, etc. Another annoying thing they kept trying to tell me was that it was all in my head. I was even questioned about any sexual abuse history.

I finally met one doctor who thought the pain might have come from a pulled muscle in my vagina during my first seizure. I was sent to physical therapy for a few months with no result.

After being in the ER three times, doctor appointments with new doctor after new doctor no one could figure it out. Finalllyyy I was sent to Seattle’s Children Hospital to the adolescents department. My doctor there is amazing and super informed on this condition. The moment after I explained my symptoms she immediately knew what it was.

I now see her every 6 weeks and another doctor at the UW who has dedicated all of his studies to Vestibulitis/Vulvodynia which I found to be super awesome. My two doctors converse with each other and try to research new options for me as we go along.

Treatments that I have found are effective for me are:

A low oxalate diet. I figured out all my favorite foods were high oxalate and were irritating my skin. I can no longer have citrus, chocolate, red sauce, and coffee.

I use two different types of ointments daily and a numbing gel before sex

I also had to stop using tampons

Please ask any questions you might have about the treatments I’m using or anything else you please!

[vvssupportgroup-blog-blog]

http://video.answers.com/the-causes-of-vulvodynia-451299629

"I see vulvodynia in a lot of women on oral contraceptive pills — young women who are on the pill at age 15, 16. We see them in their early twenties. They’re just finishing college and starting relationships and they’re in such pain in…

[vvssupportgroup-blog-blog]

I am convinced that a young man of my age, complaining of serious sexual dysfunction and pain, would not have been treated in the same way. Firstly because in an otherwise healthy young male, loss of sexual function would rightly be seen as devastating (whereas for me it was treated as a mild difficulty), and furthermore because I do not think these doctors would assume a man was being ‘over-emotional’ or was suffering from a psychological problem rather than a physical one. I have come across several research papers on this condition which state that it is more likely to affect women who are ‘highly sensitive’, although what criteria the researchers used for levels of ‘sensitivity’ I cannot imagine - response to fluffy kittens? Do they cry at romantic movies? Do they weep when they’re in pain and frustrated…? Ultimately these past 10 years, all the pain, angst and suffering, could have been alleviated to a huge degree if we had not been so socialised into acceptance of the patriarchal, penis-focussed version of sexuality; if we had received the message from those medical experts and the rest of society that: it doesn’t matter if you can’t have penetrative sex. Enjoy what you have. You’re not abnormal. So what?

-’S’, “Painful vagina? Your poor husband!” (http://www.thefword.org.uk/features/2010/03/painful_vagina) all the feels (via marsjunkiegirl)

[vvssupportgroup-blog-blog]

Hi there :) I'm so sorry to hear you're facing this battle too, I'm currently going through some very dark days! I've had vulvodynia symptoms since I was 14. I went through a diagnostic process a few years ago, and I was told I had IC. I found my symptoms manageable over the past few years, but this week things have flared up. More burning pain than anything! Can you explain to me the treatments you've undertaken that have eased your symptoms? What foods did you eliminate? Many thanks!

So sorry if I’m a little late to replying to this. I’ve been using the Tumblr app on my phone and it doesn’t show notifications. I’ve gone through so many different treatments but right now it’s the calmest it’s been so I’d be more than happy to share.

I’ve been given Desoximetasone Ointment that I apply to the inflamed area twice a day (morning, bed time) and Lidocaine Ointment which numbs the area; I use it 20 minutes before sexual intercourse. I was first put on alcohol based ointments/creams and those stung really badly just as a heads up you might want to try ones without an alcohol base first.

I’ve noticed high oxalate foods cause irritation. You can easily find a list of which foods have high oxalate and the ones that don’t. So far I’ve noticed I can’t tolerate chocolate, citrus (lemons, limes, oranges, etc.), red sauce (tomatoes), spinach, peanuts and raspberries.

Another action me and my doctor took was what birth control I was on. I was put on the Nuva Ring because it releases estrogen straight to the skin/the inflamed area and that can ease the pain a little but that depends on your symptoms. 

I really hope this helps! & I really hope you feel better! <3

[vvssupportgroup-blog-blog]

Thank you for the very informative reply :) Me and my mum have done a lot of research about the oxalate diet - we even went on a food shop yesterday which was actually fun, it's really interesting too see all the high oxalate ingredients in products you'd eat everday! Goodbye bread and chips :( I'm slighty concerned about this 'dumping' process though. I'm going travelling in November and I don't want to feel epicly ill! What has been your experience with this, if any?

I’ve had a pretty positive experience. As you start to eliminate food, don’t just quit everything cold turkey. Keep a diary of what you ate that day and how you felt then analyze it all at the end of the day. This is what helped me narrow down the foods I couldn’t eat. For example soy has high oxalate and so does a lot of nuts but my body does fine with these two as well as numerous other items on the diet list but from all those on that list I’ve only found that only a handful of the foods irritate me. Find an approach that works for you. I highly suggest the food diary and if you do just go cold turkey on everything, try to slowly re introduce certain foods back into your diet and see how that feels.

SOOOO sorry about the long wait for replies. I just started school and life gets pretty crazy. I should be more active now though (: 

[vvssupportgroup-blog-blog]

Hello, I was reading about the diet treatment you posted. Does this work on its own? I am going to see a doctor for the 3rd time and I'm tired of misdiagnoses. I also have intersticial cystitis and am more prone to these horrible disorders.

In my experience just the diet can work on it’s own especially if you really stick to it. I was using lots of creams and medications but was able to slowly come off of them after going on the diet. However, each case is different.If you sense that you are prone to these sorts of disorders I would recommend Boric Acid. My doctor put me on it and it wards off and prevents future infections/disorders. I’m prone to yeast infections and nocturia and since taking Boric Acid I haven’t had anymore problems. Just ask your doctor for some; I don’t think you can typically find it over the counter.& Misdiagnoses is probably the most frustrating thing about this disorder, its awful! Have you tried bringing up and asking about things you have researched on your own to your doctor?Please let me know if you have any other questions or if any of this helps! (: 

[vvssupportgroup-blog-blog]

Hi, I saw that you said that high-oxalate foods were irritating your skin. Different medical providers have said different things about my skin -- I guess I've had a lot of symptoms that signify skin irritation, but when I had a vag dermatologist actually examine my skin it looked fine? Did your skin look visibly irritated before you changed your diet? I'm trying to decide whether I should try this. Thanks!

My skin was not outwardly, visibly irritated. One of the common things with Vestibulitis is no significant symptoms that can be seen, it’s more of how you feel which is probably why it is such a hard thing to diagnose. I would recommend the diet either way. Start it as a trial run and if you notice a difference for the better, keep up with it and if not, at least you tried something, right? (:The diet can be tricky so be careful! There are some things on the list that I’m not supposed to eat but can and others that I really can’t. Tracking the foods you are frequently eating and comparing them with the high oxalate list would be a good first step.

[vvssupportgroup-blog-blog]

[vvssupportgroup-blog-blog]

Vulvar self examination

[vvssupportgroup-blog-blog]

Hi there. So I was diagnosed with Vulvar Vestibulitis about a year ago and it just occurred to me to look to Tumblr for support with this. I have an amazingly loving boyfriend of 3+ years, who is really supportive about only having vaginal sex about 2 times a month (as much as I am able to), but it still is a source of guilt and pain for me. I have lido 2% jelly, but sex still isnt painless (pain scale of 7 without it/pain scale of 3 with it). Doc wont give me stronger lido. Any advice?

I’m glad that you have such a supportive boyfriend, I know how much that can help. I too have a boyfriend of three years who have been there for me. I’m sorry to hear that you are still struggling though. See if your doctor will prescribe you Desoximetasone, it’s quite different from lidocaine. Instead of numbing it provides relief long term. There are two different types of Desoximetasone, one is an ointment and one is a cream. The cream is alcohol base and a little harsher than the ointment so I would ask for the ointment before the cream. I think if you try using the Desoximetasone daily and then before sex use your Lidocaine, which seems to be helping on it’s own, it might reduce the pain further. You can also try Virgin Coconut Oil which is a natural lubricant that is known to calm skin tissue. I use this instead of Lidocaine. 

Let me know if this helps or if you have any other questions!Good luck!