IAMA person with Vestibulodynia (my vagina hurts!) AMA.

Can you still orgasm? Does that increase the pain? P.s. your "little tiny dildo" is just a bit smaller than my dick. Day ruined lol.

oh my gosh I'm so sorry!!! It really does look smaller in person, honest.

Yes, I can still orgasm and no, it does not increase the pain. Getting in mood can be kind of difficult for me, though.

Does this have a negative impact in your relationship?

We go through ups and downs like any couple..but I believe it has made our relationship even stronger. I do struggle with feelings of inadequacy, sadness, frustration..but overall we get through it together.

Have you tried anal sex with your husband?

No, not yet. He's actually not interested in trying it...but I think I might get him a little tipsy some night and suggest it.

It might make things easier for your sexuality with each other, depending on how much you both enjoy it.

So do you both have a sexless marriage?

True, it might. We are not entirely unhappy with our pretty much sexless marriage, though.. ( I sometimes will get super lubed up and take the pain ). I provide him with oral sex, and my clitoris is still fine.

I just read the comment to my husband and his reply was, "That's a one-way street." Meaning my butthole.

Most have it the other way around, where they have to get their wife drunk before anal.

Why doesn't your husband want to try anal? My fiancé and I have been together just shy of 6 years and anal is something we usually do at least once a week. She always showers beforehand and we've honestly never had a single "yucky" experience. You can go as far as getting an enema kit if cleanliness is what he's worried about.

I think it's just a case of fear of the unknown. Maybe I will open up the discussion with him!

You could suggest him trying a finger first so he knows there's not some poo beast waiting for him just beyond the opening.

Best of luck to you guys.

This made me laugh, thanks :)

so do you guys want kids? like would you be willing to have sex strictly for reproduction?

Yes, and actually some women have been miraculously cured via childbirth! We've recently been discussing that option more in depth.

For what it's worth: my wife suffered from vestibulodynia for the first four years of our marriage (although it doesn't sound like it was as severe as your case). We really wanted kids, so she basically toughed it out in order to get pregnant, and she was essentially cured by childbirth. We have normal sex now, which we would have thought impossible before having kids.

Wow that's awesome!

Did it just come about four years ago? Like were you able to have sex pain free before or did you discover it the first time you tried?

I had a very healthy sex life for a number of years before the pain started. I'm now almost 27.

Would you say it's worse because you know what you're missing out on?

Yes.

How is your condition different from or similar to vaginismus?

From what I understand, vaginismus is more of a muscle response thing. Vestibulodynia can lead to vaginismus I think...because of the pain- your mind tenses up the muscles, making it almost impossible for anything to enter.

Interesting! Thanks for your response, and I applaud both you and your husband for your patience and wish you well. I had an ex girlfriend with vaginismus and it definitely put a strain on our relationship, but I'm glad to see that you're persevering.

It does put a strain, for sure. I'm very grateful for my husband who has been so supportive. Thank you!

I am a physical therapist that specializes in womens health. This is treatable. Ever seen a PT??? Seriously, this is totally treatable!!

Yes, I have. It can be really helpful, I know! Thank you for what you do! I recently found out that my hormones are completely out of balance, so I am focusing on fixing that before I continue with PT.

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A LOT. It feels like someone slowly cutting into my skin with a burning hot Xacto knife :)

I am 99% sure I have this condition, I've know for about 6 months now, I just haven't gotten officially diagnosed. This is exactly how I explain the pain to people. Being cut with knives that are on fire.

It's so terrible. I'm sorry you deal with it, too.

This pain is only on penetration? Or does it happen at other times?

Mainly only during penetration, and while the object is in my vagina.

If you get really drunk, does it still hurt (as much)?

yes. I just don't care as much.

Hi OP! My girlfriend was experiencing pain during sex in the past, but she was afraid to tell me about it. Eventually, she gathered up the courage to talk to me about it and we haven't done anything with penetration since. I'd like to know, what kinds of sexual activity are painful, and how painful are period cramps for you (because my girlfriend's cramps have been described as "crippling")?

You may want to tell your GF to research endometriosis. That can cause pain during sex and also very painful menstrual cramps. The only sexual activity that is painful for me personally is penetration, and sometimes rough-ish oral sex. Hope your GF starts feeling better soon!

tremendous pain if anything attempts to enter my vagina.

You say you "practice" with the tiny dildo. Does that just involve you repeatedly shoving it in and screaming in agony, or does the pain lessen the more you do it...? I'm confused on that point. Also, when you say "anything" does that include very small things such as tampons or a single finger?

I practice with the dildo to train my mind and body to get accustomed to the pain, and to keep my muscles loose. I like to lube it up a lot and slowly put it in and practice trying to become completely relaxed. I will stand there with it in there for some time. Yes, it hurts when even a finger enters.

What have you tried to cure this? My wife had vulvodynia. For years she struggled with this and dr's basically telling her nothing was wrong or it as a yeast infection or this or that. Finally met with a doctor in Eastern Pennsylvania that helped ALOT. 2 yard after we had our first consult she decided to go forward with a vastibulectomy. It's been 3 months since the operation and everything is going great. Please feel free to DM me and I will get you In Touch with my wife if you have any questions (or if anyone has any questions). She's very open about her experience and would love to help anyone out.

Thank you very much! I'm glad to hear that the vestibulectomy helped your wife. I am going to hold out on surgery until I have exhausted all other possibilities, but I am considering it as an option if it comes down to that.

I also had a vestibulectomy; it was a life-changer for me. I tried PT (including dilators), lifestyle changes, tricyclic antidepressants, topical pain relievers, etc., and nothing worked. The recovery from surgery was not easy, but it did go faster than I thought (a little under 6 weeks from surgery to pain-free penetrative intercourse), and I haven't had any vulvar pain issues in the 9 years since then. I would absolutely do the vestibulectomy again in a heartbeat! If you do choose surgery eventually, make sure you choose a surgeon who has done MANY of these surgeries before. Feel free to PM me if you have any questions, or hit up the National Vulvodynia Association at nva.org.

Thank you so much!!

Does the pain ever go away?

I don't feel it much when I'm just walking around going about my day. I'm one of the lucky ones, though! Some women with my condition can't even wear pants or sit down for long periods of time. I do feel a mild burning sensation often times, but the real pain is when something is entering the opening of the vagina. My specific condition is "provoked".

Hey! I have vaginismus and mild vestibulodynia that is exacerbated by interstitial cystitis. I wanted to offer some hugs, and say it's nice to be able to talk to someone with similar problems.

For questions, I want to ask

1. Do you think that book is a good buy? I'm able to have sex with my boyfriend but sometimes I have trouble dealing with the emotional side of the pain.

2. Does the size of the object being inserted make a difference in the pain level? I'm wondering if something like these might help. I recognize the dildo you're using, and the smallest dilator is smaller than that.

Helloo :) Sorry you're dealing with that. The emotional side of it is actually a lot harder for me to handle sometimes, too. There are a couple sections about that in the book, but it's more in-depth about the science, etc..so maybe I wouldn't recommend it for you. Yes, the larger the object the more it hurts. I have thought about getting an even smaller one, too..but I'm liking working with this one at the moment. thank you for your comment and I hope you get better soon xo

So tampons are out of the question?

kind of, yeah.

I decided to embark on my own journey to health, and have learned a lot about my body and mind along the way.

Why aren't you trusting trained professionals?

Based on my experience, they do not warrant my trust with this particular issue. One doctor admitted googling my condition minutes before entering the office, and then off-handedly prescribed me anti-depressants. Would you trust that? I trust myself to think outside of the system and to listen to my body.

I decided to embark on my own journey to health, and have learned a lot about my body and mind along the way. This condition is not talked about near enough in my opinion. I believe that birth control was the catalyst for my specific case, and more women should know about the risks of these readily available drugs

So four medical professionals couldn't figure out what caused it, so instead you went on a personal journey and discovered the medical answer to your problem how? Is this just a random guess? I don't think you should be warning "more women about the risks" when you don't really understand it yourself.

I was diagnosed by a medical professional.

Do you have discharge / any odor from this condition ? Or is it strictly just pain?

No abnormal discharge or odor.

Did the pain begin before you got married? How did you break it to your husband that he can't really have sex with you?

P.S. Your "little tiny dildo" is a couple inches bigger than my dick.

The dildo is 4.5 inches..just to set the record straight. No one is saying bigger is better. I actually wish my husband had a smaller dick atm.

Yes, I had the pain before we were married. I didn't "break it to him", as he was kind of going through it with me as I discovered what it was. He's been nothing but supportive of me. We've gone through some difficult times, but we're doin good.

Have you ever looked into Phantom Limb Pain as a possible analog to your condition? What you are experiencing sounds a lot like phantom limb pain, i.e. when someone has an extremity amputated often times the nerves that respond to a pain stimulus from the now missing extremity go haywire and transmit pain stimuli that is not actually there, obviously, because there is nothing there where the pain is emanating from. I'd wager that something along the line of infections you had damaged nerve cells inside the walls of your vagina and now they are reporting stimuli to your CNS that isn't there. Nerve cells operate on a very basic principal, they are at a state of rest (no stimuli) and have a potential (resting) charge of -70mV. To activate the nerve cell, a change in charge of 5 to 15mV is necessary. This opens the Sodium and Potassium pathways and "fires" the message that there is pain/touch aka sensation. So, technically speaking, the original doctors were correct. The pain is actually all in your head, but ONLY because you have nerve cells firing pain impulses up to your brain when there isn't any. Although correctly interpreted as pain impulses by your brain, they are falsely being sent there by your periphery nervous system. So, you feel pain, and your CNS compensates by sending appropriate messages back down to the region, contracting muscles, etc. Basically it sounds as if you have pain impulses constantly being sent due to a nerve fiber thats cells are partially stuck in the open position. An inflamation of the nerve tissue if you will. According to the internet... another possibility. Bartholin's glands secrete mucus to provide vaginal lubrication.[3][4] Bartholin's glands secrete relatively minute amounts of fluid when a woman is sexually aroused.[5] The minute droplets of fluid were once believed to be important for lubricating the vagina, but research from Masters and Johnson demonstrated that vaginal lubrication comes from deeper within the vagina.[5] The fluid may slightly moisten the labial opening of the vagina, serving to make contact with this sensitive area more comfortable for the woman.[5] It is possible for the Bartholin's glands to become blocked and inflamed resulting in pain.[5] This is known as bartholinitis or a Bartholin's cyst.[6] A Bartholin's cyst in turn can become infected and form an abscess. Adenocarcinoma of the gland is rare, but benign tumors and hyperplasia are even more rare.[7]

That's a lot to think about, thank you.

I've never had anything like vaginismus or your situation so I don't have any questions except... He *does * eat you out doesn't he? He doesn't just turn his nose up at oral sex because he won't get penetration? Do you have a happy sex life?

Yes, he does occasionally do that! haha. Unfortunately it can aggravate me down there a little sometimes. We have managed to work around this condition for the most part. I can't help but daydream about days of carefree penetrative sex, though :( It would be so nice!