I feel so alone. I need support

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  • #9275
    echothatislove
    Participant

    Hello.
    I am 28 (soon to be 29) and have just been officially diagnosed with vaginismus. I have been with the same person since we were 16 years old, and got married one year ago. We first tried having sex when we were 18 or 19, and remember the night like it was yesterday. My legs were shaking so much and and he could not get inside of me. After a few attempts he stopped because he clearly saw I was in pain. Fast forward 10 years later and we still have not had sex. I cry every day. I’m embarrassed, stressed, depressed, and feel I can’t talk to anyone about this. My husband is amazing, but I feel so bad for him that he is still a virgin too. The 2 of us keep this a secret from everyone. The only people that know are my doctor and OBGYN. When I told my doctor 6 months ago (it took a lot out of me to do this) he just flat out said “well, that’s not normal”. I went to a psychologist 3 years ago and she did nothing and basically didn’t see me being a virgin and not being able to have sex a problem. The OBGYN gave me a dilator set, and there are only 4 – small, medium, large, x-large. The other night I finally worked up the courage to try the small. I personally do not think the small is small at all. I did the exercises, lubed it up, and tried putting it in. I could only get the tip in, like MAYBE one cm. I feel incredibly discouraged and was in pain afterward. For the past 10 years I feel like I have had no sex drive because I don’t want to be confronted with my problem. Now I’m starting to get a maternal instinct and want a child. I just can’t see myself ever being successful with the dilators and ever having sex. On top of that I was just diagnosed with polycystic ovarian syndrome. To be completely honest, I feel like a failure as a woman and that my body doesn’t work like it’s supposed to. I have no one to talk to. I’m so ashamed. Please help.

    #13453
    mmHeather34
    Moderator

    Hi echothatislove. Welcome to the Forum and thank you for your post. I am so, so very sorry for your struggles with vaginismus. Please, please know you are not alone with this and we are all here to support you. You have us to talk to and we are here for you 100%. I, too, had vaginismus for several years – all of my 20s and the first few years of my 30s. I ordered dilators and despite how many times I read the workbook and tried to insert them, I felt like it just was not possible as it felt like I was hitting a wall. The same thing happened when my then boyfriend/now husband even tried finger penetration. I visited doctors who advised to “just relax” and I tried so hard to do this but despite how relaxed I was, exams were physically impossible. I discovered Dr. Pacik when I was 33yrs old and had the procedure at age 34. I woke up post-procedure with the largest pure romance dilator in place and this was the first time in my life something had been inside of me and it did not cause any pain. My husband and I were both in shock. Thereafter, we practiced with the dilators and the wall that I previously described was no longer there which made the impossible (insertion) possible and I just had to stretch the muscles with the dilators. We were able to transition to intercourse 7-days post-procedure. I cannot describe in writing to you how much this procedure has changed our lives and we continue to Thank God every day that we did it. If you haven’t already, I would encourage you to contact Dr. Pacik and work with him in any way possible. He is not like the doctors that say “well that’s not normal” to you or “just relax” to me and he actually gets it and understands vaginismus so, so well and what each of us has gone through with it. He also cares so very much. Please, again, know we are all here to support you. Sending hugs!!!

    #13454
    23years
    Participant

    Hi Echo
    I’m so sorry and completely understand. I stopped talking about in the 90’s and was 23 at the time of diagnosis only I was diagnosed incorrectly. I was treated of course unsuccessfully. I’ve lived with this black cloud of shame for 23 years.

    All of us with the Big V understand and know how you feel. But we all now you do now have an option with a doctor who gets it, truly understands and supports you, and a viable treatment option that WORKS!

    Your hubby sounds amazing as do you! I didn’t tell ANY of my physicians and my OBGYN and I stopped talking about it. Sad huh?

    I had to have Dr Pacik write me a letter so I could “come out” to my primary care MD. I would have lost up the nerve to tell him if his wife didn’t have me come in right away that day. Little did she know. I felt like vomiting before I went into his office. The physical and emotional reactions to having to tell someone, talk about, deal with it, are all too real. It’s like we have to “take a hold of it and show it who is boss” rather than our bodies betraying us and the big V engulfing us.

    Oh we get it we really do. I agree with Heather. Talk to Dr P. he won’t push you and you can ask him any question you want and you will see. Explore the option of this treatment. You won’t be sorry you did. It’s the first step in a better direction and one you and your husband deserve.

    You are a brave person and worthy of that healthy life you dream about others having. You will come out of this challenge an even stronger and better person.

    Wishing you lots of hope!
    23 years

    #13455
    Dr. Pacik
    Participant

    Hi echothatislove

    Thank you for introducing yourself. It is sad how many women write in their questionnaires that they feel “broken” and “ashamed”. Many have loving husbands who support them yet they are unable to get a diagnosis of vaginismus or helpful treatment. It is normal to feel alone, that you are the only one who has this, and for this reason vaginismus is not discussed with friends or family. I bless this Forum daily, it has made a huge difference to many women.

    I advise women with vaginismus to complete the questionnaire so that I can make a diagnosis. Vaginismus is diagnosed by using a carefully constructed psycho-sexual questionnaire. I then arrange a complimentary phone call to discuss treatment. Insurance companies have been covering about 1/2 to 2/3 of the cost in many cases.

    To communicate with my office and receive the questionnaire link onto [url] http://www.vaginismusmd.com/contact/%5B/url%5D. I will be happy to discuss this with you once I review your questionnaire.

    #13544
    missa05200
    Participant

    Echothatislove I completely understand how you feel. I cry almost every night feeling ashamed and that my body doesn’t work properly. You are not alone.

    #13548
    Marianna162
    Participant

    I understand how you feel, too. It’s unfortunate that this is a topic that is so rarely discussed. It’s a very lonely condition to have. I first began having sex about a year ago with a man I was dating at the time. The first time was very uncomfortable, but after that ok. We had some very unpleasant experiences, however, and sex became more and more painful. I finally left him (not due to the sex, but an array of other reasons). When I started dating my current boyfriend, I was completely shocked when sex was uncomfortable with him, too. It wasn’t a level of arousal or anything like that, I just had no control over my muscles. It’s the burning, hitting a wall, legs shaking (not in a good way), feeling. He’s been very understanding, but it completely crushes me. I’m not a very dramatic or overly-emotional person, but I cry all the time over it. I also feel extremely guilty, because one part of me knows that I wouldn’t leave somebody because of a condition like this, but another part thinks I’m being selfish by expecting him to stay with me if I can’t provide the physical intimacy that I know he looks forward to. We are able to achieve penetration when I’m on top, however it takes a good amount of time for my muscles to relax enough. I don’t know if it works because I feel like I have more control in that position (my unpleasant experiences were not in that position), but it still just kills me emotionally.
    (On another note- I attempted dialators, but freak out too much. Also I’ve never used tampons- not out of avoidance, just never bothered buying any. And although I know this is medically not great, the first pelvic exam I had was after my bad situation (I got lazy about going to the doctor when I attended college), and my doctor said I probably just needed to relax.)
    I’m scheduled for December 15th, and I’m very much looking forward to it. I know typically 3 people are scheduled a day, which I think is a great idea because it is such a lonely thing to go through.

    #13551
    missa05200
    Participant

    Marianna16-2 I can completely relate to you. I almost broke up with my boyfriend last weekend because I thought he deserved someone that could do the things I can’t and I’m not sure if I ever will be able to do them again. He’s on the larger side. I get anxiety just even thinking about having sex with him. Having chronic pelvic pain is a very big emotional roller coaster and no one truly understands unless they are going thru it. I think my friends and family are thinking sometimes that I’m over exaggerating my pain.

    #13553
    Marianna162
    Participant

    I understand. It’s definitely something you don’t understand unless you’re going through it. Other than my boyfriend and doctor, the only people who know are my parents (once I scheduled the procedure) and one other friend. None of them had ever heard of it before. I pretty much end up crying whenever we talk about it. I’m really hoping this procedure works.

    #13558
    23years
    Participant

    It’s been 23 years for me, post Botox, and I STILL CRY sometimes when talking about it….I’m going to be brutally honest. This condition punches you in the gut! And if its not enough that the condition punches you in the gut, most of us have been hypothetically punched over and over and over again by ignorant comments, statements, situations and medical authorities! It’s no wonder this condition is SO misunderstood.

    On top of it, sad but true, women’s health care in the USA is sub-par at best. For example: a woman can walk into an ER, talk about neck pain, funny feigns in their head, strange sensations, say “something feels wrong”, and a slew of excuses may be made like “you just had a new baby, it’s your feeding position, maybe you have anxiety, etc. When really you are having a dissection of a major artery in your neck! OR, you could complain of severe stomach pain, nausea, etc FOR A YEAR with it getting worse and a doctor may look at you going “it’s anxiety, you are getting married”. Then your liver functions go wack and finally your diagnosed with gallbladder disease. Both true stories. I’ve seen this and more. The fact is, if you are a man, tests are run, etiology of problems are discovered.

    If you are a woman, too often, you are over exaggerating, emotional, anxious and depressed. Well “DUH??” Who wouldn’t be depressed when they are having real medical issues that aren’t being treated? Being under treated? Being mistreated? Like what came first? It’s a vicious cycle and the world sadly is still run mostly by men (no offense Dr Pacik you know you rock)…but you also know there is an element of truth.

    Call me jaded or call me cynical. But this has been my experience.

    I guess in the end what I’m doing is validating all of you and sharing my open honest feedback.

    This forum ROCKS because it allows each of us to be straightforward, get support, obtain medical expert guidance (yup that’s you Dr Pacik) and it is one of very few places each of us can feel safe. At least I do. I know spoken word never can replace face to face and can sometimes be misunderstood but at least we have one another and not misguided and misconceived persons.

    Everyone on this forum deserves to be “whole” whatever that means for each of us. No one should have to deal with a life long complicated disorder of body/mind and I only say “mind” because there is a HUGE mind body connection. With every chronic condition.

    Hugs to all~

    #13562
    missa05200
    Participant

    I agree 23 years this is the only place where I feel people truly understand me and know what I am actually going thru and this is all thanks to Dr. Pacik. So thank you so much Dr. Pacik for having this forum!

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