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[Aliyat]

Morning everyone,

I’m Tykva, I’m 37 y.o. and I never had an intercourse (only anal), been married for more than 5 years now. I came across vaginismus about a month ago and it felt like enlightenment, because until then I felt like some freak and questioned my feelings to my husband thinking that I can’t let him because I probably don’t love him enough or at all. As since the beginning it failed everytime we tried, we gave up, which didn’t affect our relationship, it felt well, ok, maybe one day. However, this one day came only because of us willing to have a baby, if not, we would have probably ended up never having intercourse. Besides, since even before being a teenager I unconsciously masturbated and never had problem reaching an orgasm. So after so many years not having an intercourse, I kind of gave up thinking it, thinking ok, whatever, all I need is to have a baby, our relationship is fine, that’s all that matters. But on another hand I also worried that not having intercourse is actually not good for my health because even now I have pains in breasts, lower belly part, which I call for myself “urgent need to have intercourse pains”.

Because of my thoughts I have never even spoken to the gyn about this (freak, not able to relax stressaholic, etc), only once briefly and was told, its in my head and I need to talk to the psychologist. So since coming across vaginismus I was reading a lot about it on the web and it is a big relief to know that I’m not the only one. I’ll be seeing a sexual therapist on Tuesday who will an exact diagnosis but I doubt it will be different.

I wasn’t sexually abused, I don’t have pain, its more like I’m afraid to let something in, I feel very anxious and tense, I think deep inside I think that losing virginity would hurt. I never tried tampons, I avoid gyns because of the cold metal instruments they use.

I avoid to feel miserable because of this though, I hope for the best.

[Aimee Goldman, RWHNP]

Hi Aliyat-Welcome to the forum. The anxiety you feel about penetration of any kind is must probably Vaginismus.
In Vaginismus , the patient presents with anxiety and aversion to penetration. This in turn leads to what we call “high pelvic tone” and tight vaginal muscles. All of this is involuntary so telling a patient to relax is not a reasonable response to patients with Vaginismus.
The good news is that you found our forum and you can be helped.
At Maze we offer a free 10 minute consult. We are here to help you.

[Heather34]

Hi newsoul11. I am so, so sorry for your struggles with vaginismus and I’m glad you found this Forum. I completely “get” what you mean in the end of your post “after doing another frantic web search for help/support”. I did this so many times while having vaginismus during my 20s and into my early 30s. I wanted to fix it and literally had “fix V” on the top of my new year’s goals list every single year. I belonged to a yahoo group for vaginismus back then as the Forums didn’t exist and in there, I learned about Dr. Pacik and ended up having his Botox treatment program. This worked for me when no other treatments had and, as I’ve written a bazillion times, I found a doctor who understood the condition and not another one who suggested to “just relax” or automatically say that I had vulvodynia because they were unfamiliar with the term vaginismus. It is so difficult to go through and even more difficult to try to explain to doctors who don’t understand it or who try to dismiss you. The group at Maze, like Dr. Pacik, get vaginismus and what each one of us has gone through with it. I would definitely recommend working with them in any way that is possible. I think it is very, very good that you are working with the dilators. I know you mentioned having to begin again with the smallest dilator after being able to insert the 2nd largest. I know this can be frustrating but I still want you to know that I personally think it is so awesome that you are doing it and you are taking the steps to overcome by using the dilators. In the past, I have found so much encouragement from reading the various posts and wanted to share a couple with you (see below). Please know that you have my support.

“Arose: Set backs are really frustrating, I know! But if you’re going two steps forwards one step back, you’re still moving in the right direction and will eventually get there. I remember Ellen saying that with dilation sometimes we have great days, sometimes bad days, and usually ok days. At one stage I had to get the baby blue one out (which we don’t even use at Dr P’s surgery) because I couldn’t even get the purple one in, but now I don’t even use the purple and go straight to the pink (and I’m working with the no7 too!). Perseverence and positivity is the key with this, and you are not alone in what you’re experiencing – keep going!”

“Janet: The important thing to remember is to take one day at a time. You will have good days and you will have days that aren’t so good. Celebrate in the good moments and don’t beat yourself up on the bad days. Every day IS A new day! We have confidence in you that as time goes on you will have many more good hair days than bad hair days!”

[Heather34]

Hi Becca. I am so sorry for what you have gone through while having vaginismus. I had primary vaginismus all during my 20s and it was so, so frustrating. It was especially frustrating to have all my best friends being able to so easily enjoy sex and to see it look so incredibly easy in the movies/tv/etc… Please know that you are not alone and we are all here to support you. I think it is great that you are working with the trainers/dilators. It can be such a frustrating process but please know that you can and will overcome.

I had vaginismus during all of my 20s and into my early 30s and overcame with Dr. Pacik’s treatment Botox treatment program. Dr. Pacik trained the team at Maze and they offer the Botox treatment program for vaginismus as well as other treatments for it as well (i.e. dilation support, etc.). If there is any way that you can work with them, please reach out. Unlike so many doctors who don’t get it and may not even know the term vaginismus, they understand it so well and understands what each of us has gone through with it.

Finally, I wanted to share a prior post with you from 21-year-old PomPom. She writes:

“It took me a while to finally post something but my story goes back to when I was 15 and couldn’t use tampons (I am now 21). I went two gynecologists who couldn’t examine me because I got such bad leg lock on the examination table. The second doctor said that although he could not examine me, he would put me under anesthesia to perform a hymenectomy because he thought that was probably the problem. However, even after the surgery I still couldn’t use a tampon and when I went back to the doctor he was still unable to examine me due to my anxiety. I then switched doctors to someone who was more patient, and through a lot of crying, screaming, and patience I could undergo an examination. She told me everything was normal and I should be able to use a tampon. 5 years later (last year), I tried to have sex with my boyfriend and it was like hitting a wall and I was in excruciating pain. Immediately after, I went back to the gynecologist who said it was all in my head and me tensing up, so I then started seeing a therapist. We talked about sex, did breathing techniques, relaxation exercises, and hypnosis. The next 4 months I tried over and over to have sex (sometimes using a bottle of lube in one night) and it just didn’t work. I finally began doing my own research and found Dr.Pacik. I read his book and finally opened up to my parents about this problem. My mom had known most of it, but my dad didn’t. I told my parents about Dr.Pacik and begged them to call him and talk to him. Prior to the procedure I couldn’t even insert a q-tip inside of me without being in excruciating pain. I got the procedure on 6/17/2013 and 6 days later on 6/23 I was able to have full intercourse with my boyfriend, with very little pain. Today, only 10 days later, I am using a tampon with my period. I truly never thought any of this was possible! I couldn’t be more thankful to have such supportive parents, and more thankful to have found Dr.Pacik and Ellen and the rest of his team! Thank you so so so much!”

Please know that we are all here for you and I send my support.

[Heather34]

Hi Florence. I am so, so happy you have found this Forum and am so sorry for what you have experienced with vaginismus. I had vaginismus during all of my 20s and for the first 4 years of my 30s. I felt like I was the only person in the universe who had it and didn’t understand why I did and why I couldn’t fix it or will it away. I tried so many different things (i.e. just relaxing as the gyn said to do, drinking in excess, etc.) and I still couldn’t get beyond the burning, physical pain, wall of resistance at all attempts at penetration. It was beyond frustrating but my then boyfriend (now hubby) and I didn’t give up and finally found the treatment that worked for us. I had the Botox treatment program w/Dr. Pacik (now offered at Maze) and for the first time, I was able to have something inside of me pain free (the dilators). Thereafter, the wall of resistance/pain that had always been there which prevented any form of penetration was gone and I could insert the dilators and later my hubby. I wanted to then and still want to 6 years later shout from the rooftops that there is a treatment that works for vaginismus. In addition to the Botox treatment program, Maze also works with vaginismus patients offering a dilation only program as well. So importantly, the group at Maze, like Dr. Pacik, understands vaginismus when so many other doctors and providers don’t. I, again, am so happy you found the Forum and please, please know we are all here for you and you have my support.

[Heather34]

Hi Pixie. I am so, so sorry for what happened in your past relationship and what you have gone through with vaginismus. I’m so glad you joined this Forum. I had so many of the same feelings as you describe while going through vaginismus. I felt hopeless that it would ever get better and that I would ever be able to overcome. Please have hope and know that you can 100% overcome. I think it is so awesome that you are working with the dilators and have advanced to number 2. I was never ever able to insert even the smallest one. You are definitely doing so well by working with the dilators. In the past, Melissa has shared some really, really helpful tips on moving up a dilator size (see below). When I was moving up a size, I did #6 a lot and it helped so much. She has written:

“Some general guidelines for dilation that I tell my patients are:
1. You should be dilating every day, for at least 10-20 minutes on a minimum. Some patients will dilate for 30 min or more if needed.
2. Kegel exercises are helpful, especially I feel before you do you dilation. To locate those muscles, you want to mimic the sensation of stopping the flow of urination. Pulling the vaginal muscles up inside the body, without clenching your butt muscles, or stomach muscles.
3. Prepping prior to dilation with a set of 10 kegel exercises can help locate the muscles, and help release some of the tension in the muscles.
4. Then gently place the dilator at the vaginal entrance and leave it there for a few seconds. Then slowly with steady constant pressure advance the dilator through the vaginal entrance.
5. Typically the tightest muscle for most vaginismus patients is right about an inch inside the vagina, and that is where you will feel the most tension and burning pain when passing the dilator through. For most women, once they pass through that tight entrance, the dilator will more easily pass through.
6. Leave the dilator inside, and if you feel comfortable you can move the dilator in and out, or roll it side to side to help with more stretching of the muscles.”

I also think it’s great to see a therapist for anxiety and agoraphobia. I do not know for certain but I do believe you could see one therapist who could address both the general anxiety and agoraphobia as well as the anxiety that surrounds vaginismus. The American Association of Sexuality Educators, Counselors and Therapists (AASECT) or the Society for Sex Therapy and Research are both great resources. I know the Maze team has an awesome approach where they treat the physical as well as emotional aspect of vaginismus with an entire group of doctors and providers who address the physical (burning pain, blocked wall feeling) as well as psychotherapists who address the emotional component (i.e. anxiety, etc.). Please know that I am here for you and send you my support today.

[Heather34]

Hi M. I am so sorry for what you are going through. Please know that you have my support. I had vaginismus for several years and overcame by having the Botox treatment program with Dr. Pacik. He trained Maze and they do offer this treatment program there as well as other treatments for vaginismus (i.e. dilation support, etc.). I know firsthand how frustrating the journey can seem but please, please know that you can overcome. Sending you my support.

[Heather34]

Hi Tykva. I’m so sorry for what you have gone through with vaginismus and want you to know I am here for you. I went through a very similar experience while having vaginismus where the doctor told me to “just relax” and it was all in my head. I also felt like I was the only one in the world who had it at the time. It felt extremely isolating. I’m glad you have found the Forum and please know that you are not alone with this at all and we are all here to support you. Sending you my support today.

[ThisPainHasNoGain]

Hello, I’m a new member here, I’m hoping to find someone who has experienced what I am going through right now and can shed some light on my situation. I am 27, I have no children and have polycystic ovaries. My vulva splits in several places when I have sex, the tears are deep enough that they weep and bleed for days and cause so much pain when walking/sitting even standing and especially urinating (I have to use my fingers to cover the splits so the urine doesn’t touch them otherwise I can’t go) I have no idea why this happens, we have tried many things to stop this from happening over the years. Along with this I have now found out from my own research I have vaginismus, the muscles become so tight and it’s so sore, honestly I feel like I’m being punched in the vagina. This accompanied with the constant splitting is making me feel so down, I can’t explain it to my partner enough how I WANT to be able to have sex etc but how can i when all of this happens and I’m sore for the next week. I feel so alone, so upset and hopeless.

[recessivegenequeen]

ThisPainHasNoGain, welcome to the forums. I am so sorry to hear about your situation – I can’t imagine the pain you must have been going through for so long. We’re so glad that you wrote on the forums and are seeking help, because no one should have to feel pain during sex, especially the level of pain you’re describing.

I had vaginismus but have not personally had issues with vaginal tearing like you describe – hopefully if someone else here on the forums has, they can speak more specifically to that issue. But what I WILL say is that trying to have vaginismus when sex is already painful only reinforces the vaginismus. Sex is painful, so that when you anticipate having sex, you feel anxious, which causes the vaginal muscles to clench, which means if you try to push past them and have sex anyway, it causes MORE pain, which causes MORE anxiety, and so on and so on in a repeating, worsening cycle. If you are still attempting to have painful sex, I encourage you to stop immediately because it will likely make things worse the longer you try to force it.

Next – have you talked to a gynecologist recently about the vaginal tearing and bleeding? If not, I would speak to one as soon as you can. I would also give the Maze Clinic a call at 914-328-3700 to talk to them about your situation and discuss some possibilities for how you might want to go about treating your vaginismus (if that’s what it is – they specialize in vulvodynia as well). Even if you’re not sure what you want to do, they are an incredible staff of compassionate people, and just being able to talk to them about your problem and know that you’re being understood makes a world of difference.

I haven’t had the same situation as you, but I know how alone and helpless it feels to have vaginismus and worry that you might never get better. I spent years thinking I was doomed to a sexless life and that I’d never find a partner who wanted me. But vaginismus is extremely treatable, and also you’re far from alone – thousands of women have been through this and want to support you through it. Please let us know what you need, and I hope you’ll congratulate yourself for having the courage to seek out answers – conquering vaginismus happens one step at a time, and you’ve already taken a big one.

[ezralopez]

hi ezra here. I am married but we haven’t had actual intercourse yet. I fear the pain that i might go through and i feel that i have a small vaginal opening compared to other women. There where times when me and my husband tried the act but i seem tensed. Good thing I have a very understanding husband that supports me and patiently waits for me to heal or to be ready. Is this considered vaginismus too? I feel so depressed at times coz i don’t have someone to talk to that will understand the situation I am in. Please help me 😞

[Sks823]

Ezralopez,

This sounds like it may be vaginismus (which is VERY curable)! Have you seen a doctor to rule out anything else/see if you’re healthy down there? Have you had any vaginal exams? Are you able to wear tampons at all?

We have a great community here in the forum and can help you with anything from seeking help, using dilators, trying botox procedures, transitioning to sex, and any other daily questions! You can even just come here to vent! Vaginismus can be very lonely and isolating, so this forum gives you lots of (virtual) friends that can understand exactly what you’re going through 🙂 Personally, I went to Maze Women’s Health Clinic in NYC and used dilators to overcome my vaginismus.

Hope things are well!

[Nicole Tammelleo, MA, LCSW]

Hello Ezra,

I am so glad the forum has been helpful to you, and it sounds like hearing other people’s stories has helped you understand that this is not all in your head. Best of luck with you appointment!

[ezralopez]

Hi Sks823,

thank you so much for your warm welcome. I am so thankful thinking other people understands the situation i am in. I have my gyne appointment few days from now. pls pray for me. thanks!

[ezralopez]

hello Ms. Nicole,

I seem lost,depressed and alone because of the unique situation i am in. I’ve visited 3 gyne but all they say is “it’s all in your mind you’ll get over it”. I am hoping this 4th gyne will help and understand me. Encouraging and sweet messages from all of you helps lift up my spirit. thank you so much!