Newbie Intro – My Story

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  • #9010
    Leena
    Participant

    I wasn’t sure I wanted to use my real name in my user name, so I chose another, but I now feel that I can be honest and open here. My name is Michele, and it is nice to meet you.

    I’m 44 years old, and I’ve never been able to have sexual intercourse. At first, I didn’t know having sexual intercourse was a problem for me because I wanted to wait until I was in a loving, committed relationship. That took me to the age of about 26, when, although I was in a relationship I wasn’t quite sure if I loved him but felt it was a step I needed to take. When I was unable to have intercourse with him, I figured it was because I didn’t really love him. I remember feeling the “wall” that so many people with vaginismus refer to, but I thought it was because I just didn’t really want to do it. Over the years I’ve tried additional times, but the wall issue continued, along with great fear.

    I’ve never been able to insert a tampon or a finger or have a successful gynecological exam. I’ve tried, but I haven’t been able to, and I get very nauseous and feel faint when I think about it too much. The only time I have been penetrated was under anesthesia, when I had to have a D&C and hysteroscopy (insertion of a tube into the uterus) due to twice-monthly periods (which wound up being caused by hormonal fluctuations due to early menopause). After the surgery, the doctor told me I was very tense during surgery and made a sign with his hands as if my muscles were in spasm. But he never mentioned anything about vaginismus so I figured I didn’t have it. After surgery, and for days afterwards, my vagina felt as if the muscles had been all torn up. It was excruciating. Whenever I moved my legs, I felt the strong tearing feeling again. It was the same when I tried to sit down, though a donut pillow helped a lot.

    I’ve never been able to maintain a romantic relationship for very long. The longest was 10 months, but it is usually less than 3 months. I’m sure this is for a number of different reasons, but not being able to have sexual intercourse is a really big one. I now feel that I will never be able to have another romantic relationship because at this age I am sure the men I would meet would expect full sexual intercourse fairly quickly and would not have much patience with me. I know that people say some men are not like that, but those are few and far between in my experience, and I have other issues such as depression and mood swings and a lack of self-esteem in romantic relationships that seems to change my personality with men and undermine me in my attempts at romantic love.

    Frankly, I feel like a loser. Like I’m not a real woman. Like I’ll never be able to have another romantic relationship. And it makes me so sad. I’ve spent most of my life out of romantic relationships and don’t really feel I need to have one to define who I am, but it would be nice to have the option for a lot of reasons – intimacy, enjoyment, companionship, to name a few. I have sexual desires and in the past have seemed to be quite sexual with partners and enjoy physical intimacy, including oral sex, but not including any type of penetration. I’ve felt a bit better reading this site, but I feel like I would be one of the few who would not be a success story. I actually felt so much better when I read another woman’s post that said she felt that way after treatment but then was able to have intercourse with her husband.

    I first heard about vaginismus several years ago on an episode of the tv show Private Practice. It was a little bit of hope, but then I couldn’t find much information on it, and I thought that must be something different from what is “wrong” with me. I felt mine must be all psychological. The next time I heard about it was on Tyra Banks’ talk show a few years later. That is when I really felt this could be what I have. When one woman explained the “wall” feeling, I could hardly believe it. So many things the women talked about resonated with me so strongly, and that had never, ever happened to me in my entire life with this problem. I started to research it again and this time found some information, but the more I read about the dilators, the more nauseous and scared and hopeless I became. At times I wanted to try it, but then I would just get so scared and nauseous I would put it out of my mind and continue with my celibate lifestyle. From time to time I would look online to see if there were any resources that might help me, like an online support group where I wouldn’t feel so alone in all of this. I found one once, but I never joined it. Then I found a video on YouTube of Dr. Pacik explaining the procedure of putting the patient under anesthesia so she is asleep (yes!), injecting botox and then a dilator, and then leaving the dilator in so she wakes up with it inside her (yes!). This was the first time I thought that a treatment might work for me. Then I looked further into it and learned that the patient then needs to continue to put dilators in on a regular basis herself, and I kind of freaked out again, feeling there is no way I can do this and feeling nauseous again, like I might throw up at any second. I also saw that a lot of patients had a husband or boyfriend to accompany them on this process, and for me I feel that I would need to solve this problem on my own before I could even get a boyfriend at this point in my life. Even the word boyfriend sounds silly to me at my age – there should be another word 🙂 But the thought of dilating on my own waiting for a boyfriend to come into my life is not something I feel comfortable with. So I’m writing here for two reasons, I guess. To share my story and to put it out there for comments and helpful suggestions. Could I be a candidate for successful treatment even though putting in dilators myself after surgery seems impossible to me and not at all something I would even want to do. If I get past that fear, I think I’d have a hard time doing all the dilating without having the opportunity to have intercourse.

    My other concern is one of cost and insurance coverage. Though I haven’t reached out to get a quote yet, I am not currently working. It sounds like some of the better insurance plans cover some of the cost, but I am sure this must be expensive (though certainly worth it, if one has the means). Dr. Pacik likened treating vaginismus to treating erectile dysfunction in men. I think that is so true, and I never thought of it that way. I think it is important for insurance companies to have parity with regard to treating sexual dysfunctions. In this regard, I wonder how can we lobby insurance companies, or put pressure on them, to cover treatment of vaginismus at the same levels as treatment of erectile dysfunction?

    I actually became very emotional reading through the posts on the forum. So many women voiced my biggest fears – like “what if I am one of the few this treatment won’t work for?” or “I cannot imagine being able to use the dilators on my own”. This was very comforting. I got kind of teary several times – sometimes when I read these types of posts that comforted me, made me feel less alone, and gave me some hope; sometimes when I started to get scared when I actually imagined trying to do the treatment and all the courage it would take for me to do it and what would happen if my hopes were dashed by failure – could I even take that kind of let down; and some tears were from all of the emotions I’ve experienced around this condition over the course of my life – from not knowing about it and thinking it was just me to believing I just won’t have this kind of relationship in my lifetime – and all the pushing down of these feelings because they were too painful, confusing,embarrassing, or overwhelming to deal with. No matter what happens in my case, I see Dr. Pacik as a real blessing to women with vaginismus. His treatment method, the continuum of care, and all of the information and sharing across his website, especially in the forum, feel like real miracles to me. I’d like to thank Dr. Pacik, his team, all who have shared their experiences, and all who read this post for your support. It does help me feel a bit of hope and not so alone in this condition which has been so heartbreaking to me for so many years.

    #11945
    Dr. Pacik
    Participant

    Thank you for sharing your very touching story. I am sure it will resonate with many on the Forum and I look forward to their remarks. Never consider yourself a loser. If you can write a story like this you are far from being less than. It is a terrible problem that so many women with vaginismus feel like freaks. I hope that someday perhaps I can help you.

    I leave for La Vegas tomorrow where I will be presenting at the annual meeting of the American Urogynecologic Society. I prepared some data analysis to bring home the importance of understanding the severity of this problem which is as follows: 35 of my patients have had vaginismus for more than 15 years; of which 19 patients suffered for more than 20 years, 5 patients more than 30 years, and one patient, 65, who had vaginismus for 44 years. That is far too many woman years of suffering (and the men suffer also). Please know that we are here for you and please continue to post your thoughts.

    #11949
    Nakitalab
    Participant

    Hi Michelle, your story is heartbreaking and I can totally understand what you are feeling. I am 53 years old and suffered with Vaginismus since I was a teenager trying to use a tampon. It had a very negative effect on my relationships and I found myself trying to be promiscuis just to prove to myself that I was normal but no matter how strongly I willed it I was not able to have penetration and the few times that that I had tried the men I was with were less than understanding which made my self esteem fall even more. I suffered with depression for many years. Feelings that I was a freak, not a real woman, why me, what was I being punished for? After getting married and realizing that I still was not having penetration, I went through every procedure imaginable with little to no success. Last year I stumbled on Dr. Pacik’s website and this Forum and I couldn’t believe that there were other women out there like me and who had the treatment and were successful. I just knew that it wouldn’t work for me since I had it for so long but I still had a glimmer of hope. I too wasn’t real excited about the dilating process but after being married for 31 years I was willing to try anything. Last October I had the procedure. My husband wasn’t able to go with me so my sister went. I’m so happy to say that the procedure and dilation program was a success. I was nervous about dilating, but they showed me how to do it and were so helpful and understanding when I struggled. By the time I got home the botox had kicked in and I took baby steps and dilated every day. I totally understand your nervousness about the dilation, Leena. But I promise you, you will be able to do it and it is so worth it. Everyone is different and progresses differently, but it’s not a race. Everything is in “your” time, what is best for you. You will gain self-confidence and your self-esteem will grow. You are not a loser, Michelle. You are a beautiful woman. All of us are here for you and will be with you every step of the way. I hope that you will call Dr. Pacik’s office and talk with them. They are the most wonderful, empathetic, kind and understanding professionals you will ever meet. Please know this, Michelle. You may not feel like it but you truly are a beautiful woman — who deserves and can be free from Vaginismus. You are not alone anymore. You are in my prayers.

    #11959
    Leena
    Participant

    Thank you, Dr. Pacik, for your quick, kind, and supportive reply. I do believe we will meet one day, and I will go to you for help. I am so thankful that you are on this earth and doing this work.

    For those of us on the older side, there were no answers for us for decades. In a way, it almost seemed unbelievable to me, when I first learned about vaginismus a few years ago, that this was something other women suffered with. It was a relief to know this.

    Just the night before I read your reply, when I was going through things in my head before falling asleep, I had so many different thought running through my head. While I felt happy to find you and the forum, a lot of unresolved emotions also mixed in, and I called myself a freak (not the first time). So when you mentioned that other women use that word, it made me feel relieved.

    I’ve suffered with vaginismus since I was 10, when I had to go to a gynecologist for the first time because I was born with some type of vaginal obstruction (it was described to me as a membrane, but in addition to the hymen), and they needed to see if it had cleared because I had started puberty and they were concerned it might not have cleared before I would begin menstruating. It was a horrible and terrifying experience. I had no idea what was going to happen, and really not much did except that I was scolded and humiliated by the doctor, scolded by the nurse for crying so loud. I could only let him examine me rectally. It was a disaster, and he said he couldn’t tell if it was still blocked and to come back in 6 months – and to start riding a bike. Thank god I go my period a few months later, there was no obstruction, and I didn’t have to go back. As a teen, the idea of using a tampon disgusted and nauseated me so I never tried. I didn’t try to have another gynecological exam until I was about 24, and all attempts at that then and since then have failed (except under anesthesia when I had my surgery).

    Well, there’s lots more to my story obviously, since it spans 34 years, and I think it may take me a little time to get to you. But I am sure I will because I know that I owe that much to myself. I currently live in Hungary and don’t have U.S. insurance, but I will be moving back within the next several months, will sort out insurance for myself, and look forward to speaking with you at that time. In the meantime, I will see you on this wonderful forum.

    Thanks again for all you do for all of us with vaginismus (I had absolutely no idea how may of us there area!) You’re more than a rock star, you’r a superhero 🙂

    All the best,
    Michele

    #11960
    Leena
    Participant

    Dear Nakitalab,

    Thank you so much for your heartfelt reply. It really was more than welcome. It was so nice to hear from someone who is close to my age and has been living with this mystery and struggle for decades just like me. Sharing your fears about the dilators was so helpful. I looked at a picture of the glass ones, and they seem much less intimidating than the others, so that was also a relief. I was also relieved to hear that you “just knew” the treatment wouldn’t work for you (which is how I feel), but it did.

    I know this might sound like a strange question, but I hope you will bear with me. I have only ever believed comments people have made to me about it being impossible for me to marry because a man won’t “put up” with not having intercourse. A couple of people have said otherwise, but those aren’t the voices that I hear in my head (nor are they my experience)- I hear the negative ones that say it’s impossible. Clearly, it’s not impossible as I have seen written across this forum. If it’s not too personal, may I ask about your relationship with your husband before your procedure, and how he coped with it and still loved you and stayed with you? It’s like I have no concept that something like that could happen for me, and I thought that maybe if I heard positive stories of men in this situation I might feel some more hope and confidence about meeting someone like that. Who will be patient with me as I try to get treated.

    Nakitalab, thank you so much again, and special thanks for keeping me in your prayers. I can use all the prayers I can get, and it means a great deal to me.

    All the best,
    Michele

    #11963
    Becca
    Participant

    @Leena,

    I can see why it would be hard for you to imagine finding a man that would “put up” with all of this for lack of a better term. There are plenty of men who wouldn’t – but obviously they are not good men in my opinion. I have been married for 6 1/2 years and have struggled with this the entire time too. My husband and I didn’t know about this problem before we were married so he didn’t really have a chance to “back out” if you will – though I know he would’ve stayed anyways. A good man will love you for YOU, not what your body is or is not capable of doing.

    I think for my husband and I, we have a strong faith in God and we believe and trust that everything happens according to His plan and purposes – even if it is impossible to understand sometimes – and for my husband that has been helpful.

    I know firsthand that it is possible to find a good man, and a good man that will be faithful, respectful, encouraging and understanding of the situation.

    I’m praying for you Michele! *hugs*

    #11966
    Leena
    Participant

    Dear Becca,

    Thank you so much for sharing this with me, for the prayers, and for the hug! All are extremely helpful to me on this journey.

    Michele

    #11972
    mmHeather34
    Moderator

    Hi Michele. I am so, so very your sorry for your struggles with vaginismus and I am so happy that you have found Dr. Pacik and this Forum. I am here for you 100% and have felt so similar in the past and while having vaginismus. I, too, suffered with primary vaginismus in the past for my entire 11-year relationship/5-year marriage. I felt just so, so many of the same emotions as you describe and I feel like our emotions surrounding the many aspects of this condition are so alike. I want to address some of your specific concerns:

    Could I be a candidate for successful treatment even though putting in dilators myself after surgery seems impossible to me and not at all something I would even want to do?

    YES – you absolutely can be a candidate for successful treatment with this concern about dilation. I had the exact same fear pre-procedure and this was my greatest concern of all. Despite how many times I completed my writing step in the workbook, I could never even insert a q-tip without this terrible pain feeling. I tried inserting the smallest sized tampon, the smallest dilator, and nothing would go in without an excruciating burning pain feeling and like I was hitting a physical wall of resistance. How would I ever be able to dilate if I couldn’t insert a q-tip? I almost didn’t go through with the procedure b/c of this extreme fear and even after both Dr. Pacik and Ellen said this was a common fear from so many patients who were able to successfully dilate post-procedure, I still did not believe that I would be able to. The idea of it made me incredibly nauseous and very anxious. In fact, and I apologize if this is TMI, I actually was sick in the car on my way to the treatment b/c of worrying so much about this. The only thing that worked for me was actually going through with the procedure and then waking up with the dilator in place. This was the first time anything had successfully been inside of me and it did not cause pain. I then felt like I had to pee. I went to the bathroom; removed this dilator; peed; and then in the standing position, inserted this dilator right back inside without any resistance and while very liberally coated with surgilube/lidocaine. This made it go in with ease, something that I never could’ve imagined happening in my pre-procedure state regarding dilation. Then, with this same lubricant coating and no wall of resistance, I was able to remove the dilators and reinsert them right back in.

    Cost and Insurance Coverage

    Now, thanks to Diane Tremblay, insurance is paying for a larger percentage of the treatment. I researched the Forum and Blogs and found several helpful links that discuss everything about the cost, insurance, new name change that may increase insurance coverage, as well as Care Credit. http://www.vaginismusmd.com/vaginismus-md-forum/?mingleforumaction=viewtopic&t=125 http://www.vaginismusmd.com/vaginismus-md-forum/?mingleforumaction=viewtopic&t=610 http://www.vaginismusmd.com/vaginismus-md-forum/?mingleforumaction=viewtopic&t=480 http://www.vaginismusmd.com/insurance-coverage-for-the-botox-treatment-for-vaginismus/#sthash.bTWXX5qg.dpuf

    I believe in you so much Michele and truly believe in my heart that you will overcome vaginismus. I will be there for you every step of the way and can’t wait to read more of your posts. Sending hugs!!!

    #11978
    Leena
    Participant

    Heather, thank you, thank you, thank you. Your post really helped. Although I still can’t quite imagine that I will have the same experience, I am beginning to see that rationally it could be possible. Every time someone tells me their story, which are so, so similar to mine, it seems to chip away a bit more at what I have viewed as an insurmountable limitation in my life. This whole forum experience feels like a miracle. Thanks for telling me how you felt in the car on the way to your treatment. It wasn’t TMI at all. It made me feel such compassion for you and also admire your courage for forging ahead. All of the women I have come across in the forum are remarkable, and I have learned so much from all I have read and especially from those who have reached out to me. Thanks again, Heather, and thanks for searching the forum re: insurance /payment info and for the hugs!

    #11979
    mmHeather34
    Moderator

    Hi Michele. Sending huge hugs back to you. In your above note, you mentioned hearing of positive stories of male partners of women who have vaginismus. I had vaginismus for as long as I can remember and all through my early 20s and while attending college. I tried dating and we were able to have intimacy and oral sex but when it got to the point of the relationship for intercourse, I would almost always break up with the guy or I would try it; it wouldn’t work; and I would then break-up with the guy because of how I felt afterwards. It was so hard at the time and I remember being so jealous of all of my friends who could have comfortable and pleasurable intercourse with their boyfriends. I met my now husband following college and when it reached the point in our relationship for intercourse, I tried to do my normal push-him away thing as I had always done. This didn’t work. Then, I tried to have intercourse with him and it didn’t work and b/c of this, I tried to break up with him. Again, he didn’t budge. Instead, he supported me for 11-years while we went through this journey of overcoming vaginismus. I was always so afraid that he would leave or cheat but he never did either and we got through this time together. I truly know that there are supportive guys out there because of him. Please have hope and confidence that you will meet someone like this. Like Becca, my husband and I also have a strong faith in God and this helped us through those 11-years like nothing else. Whenever we felt like giving up or questioned why this had happened to us, we found strength in God and moved forward. We both believe that he led us to Dr. Pacik and receiving this treatment and being cured from vaginismus. Sending you huge hugs and prayers. :):):)

    #11989
    Leena
    Participant

    Heather, your husband sounds like a gem. Does he have any brothers? 🙂 Seriously, thanks so much for sharing and for your encouragement. It would be very nice if I could meet someone some day and have a nice relationship. Let’s hope 🙂

    #11994
    mmHeather34
    Moderator

    I absolutely KNOW you will be able to meet someone very, very special Michele and you will have a beautiful relationship together. I truly believe in this with all of my heart. Sending you hugs!!! :):):)

    #12016
    Nakitalab
    Participant

    Hi Michelle, I am so sorry for the delay in getting back to you.. My husband was so confused for the first 15 years. He was very loving but at the same time he struggled because neither one of us understood why he couldn’t penetrate me. I became so depressed and told him several times that I didn’t deserve him and even told him that he should leave me–even though that was the last thing that I wanted him to do. He stayed with me and encouraged me to try and find a GYN who really knew what was wrong with me. We found a doctor who diagnosed me with Vaginismus and suggested that I have a hymnectomy, episiotomy and remove scar tissue. After this surgery we were able to have penetration but not without excruciating pain. The doctor gave me lidocaine to use which helped a little bit but not much. Fast forward another 15+ years–32 years of marriage. I’m so thankful that I found Dr. Pacik last year and had the treatment because now I am free from all of that. My husband wasn’t able to go back to NH with me when I had the procedure, but he has been very supportive and am very thankful that he had patience with me. Our relationship is stronger than ever. Michelle, have hope. There is someone out there for you, who will be supportive and love you unconditionally. Sending you a big hug!

    #12018
    Leena
    Participant

    Nakitalab, thanks so much for sharing these details with me. You have a wonderful husband, and it is helpful for me to hear about good examples of kind, trustworthy, and supportive men. This can help change my thinking about what is possible for me. I am so, so happy for you and for your husband that you found this community and this treatment, and that it worked so successfully for you. {Hugs!}

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