New here, newly diagnosed, frustrated

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  • #23948
    cmarie
    Participant

    Hi there,

    Not quite sure how these things go, but I really need a place to talk about this issue. Sorry for the kinda long post.
    After years of waiting, my high school sweetheart and I finally got married this summer! Due to our cultural and religious preference, we decided to wait until we got married to have sex. In the meantime, I got diagnosed with severe endometriosis. I was going to the ER every other month because I was horribly sick. I never used tampons because my periods were so painful that the thought of going anywhere near that area was gut wrenching. Didn’t think anything of it.
    After we got married, sex was not what we thought it’d be. We knew there’d be a learning curve but we didn’t think it’d be impossible. He’d tell me it was like “hitting a brick wall” and there were points where I was hiding my face so he couldn’t see my tears and pain. Not exactly a turn on. We tried for the first few months but with no penetrative success. Maybe a finger if we were lucky. It left both of us frustrated, and me in tears and ashamed for not being able to do something so natural.
    My new health insurance from my new job finally kicked in and I had found a doctor who specializes in female sexual dysfunction and pain. While it was a good experience, he did diagnose me with stage 4 vaginismus. He does the botox procedure but my insurance won’t cover it so the total for the actual medication and the procedure would be just under $1000. I’m so nervous to start, not to mention I work as a RN in a very high stress critical care unit and its hard to schedule this kind of procedure with my schedule.
    Endometriosis took so much of what I thought to be my femininity and I feel like this has taken the last bit of what was left. I’m angry because my original GYN didn’t think anything when I told her I couldn’t use a tampon and that she couldn’t perform an exam. If this had been caught before we had gotten married, maybe we could’ve resolved it. My husband has been nothing but supportive, patient, and loving but I feel nothing but guilt for not being able to do this. He deserves so much better. I feel like I have to keep this a secret from our friends and family because all our siblings and most of our friends have children and while they may be supportive I know they wouldn’t understand. I know comparison is an AWFUL thing to do, but I can’t help but compare myself to my friends and family and feel nothing but shame.

    Lastly, have any of y’all used intravaginal valium? My dr mentioned it and we’re toying with the idea of using that instead of botox to begin the dilation. It would be covered by my insurance and lower the cost. Also, any tips to help with physical intimacy during this difficult time?

    Sorry again for the long post, thank you for giving me space to vent this!

    #23963

    Cmarie,

    Hopefully you’ll soon receive supportive responses from other members, but I wanted to let you know that I applaud you for reaching out, and for exploring all the resources you mentioned above. You clearly have been struggling, and you are definitely not alone.

    If we at Maze can be of any help to you at all, please don’t hesitate to let us know. You might also find our website to be a valuable source of information.

    Wishing you all my best!

    #23967
    mmHelen Leff, LCSW
    Moderator

    Hi Cmarie,
    I want to echo Jen, you are not alone. It is very frustrating that the Botox procedure is not covered by insurance. You seem resourceful and vaginal Valium will help support dilation. In terms of physical intimacy touch such as body massage and non intercourse sex will keep you and your partner connected. Let us know how you are doing.
    Take good care,
    Helen

    #23974
    recessivegenequeen
    Participant

    cmarie, I’m so sorry to hear about all you’ve been through – your situation is so challenging. I understand how you’re feeling, especially your resentment of your first gyno. I had a similar experience of having negative interactions with doctors who didn’t seem concerned by the fact that I was so bothered by being touched or penetrated, and looking back I resent that they didn’t tip me off about something that would have given me a lot of clarity and peace of mind.

    But the good news is that you have a clear path forward, so that’s what we’ll concentrate on. It sounds like the valium might help – I’m hopeful for that! I also encourage you to open up as much as you can with your partner, and even with a trusted friend or two if you can. Part of what makes vaginismus so challenging is that most people feel too ashamed to talk about it, which heightens feelings of isolation and shame, which makes the anxiety worse, which makes the PAIN worse… you see where I’m going with this. But the good news is that you know that a better future is possible and you can start working toward it one step at a time. It’s unfortunate that the botox is expensive (I know this from experience), but the fact that it exists is encouraging and means you have options down the line, even if not in the immediate term. I know that you’re probably itching to be cured and that the idea of waiting seems impossible, but there is an end in sight, and you have the strength to get there. I can see that in what you wrote.

    Let us know how it goes, and don’t hesitate to ask questions. You’re far from alone in this and intimacy doesn’t have to be gone from your marriage!

    #23982

    Intravaginal valium is definitely worth a try. It would be covered by insurance, and we have definitely had some success with it here at MAZE.

    #23986
    pompon
    Participant

    Coming from a person who’s in a similar boat (newly married and beginning stages of vaginismus treatment), all I can tell you is you are not alone! I relate to you so much. I’m sorry to hear that your original GYN didn’t do anything about this for you. I am ridiculously fortunate that my primary care doctor recognized I may have an issue, before I even married, and your experienced has reminded me of that.

    As I am not cured yet myself, I don’t have many suggestions. I will say, I have recently started pelvic floor therapy per my primary care’s suggestion. If botox is too expensive, perhaps with your insurance physical therapy will be more affordable? With my insurance, my copay per visit is just $20.00. I understand that for many, myself included at times, even that amount per week can put a strain on finances. But it may be worth a shot to look into it.

    Stay strong, and I’d love to read updates about your progress moving forward. 🙂

    #24020
    cmarie
    Participant

    Thank you everyone! Your supportive comments and being able to relate to me is so helpful and comforting. As an update, I’m currently facing a brick wall with the only provider in my area that’s trained in Pacik’s technique…there’s been some ridiculous scheduling issues on their end and it’s kind of disheartening. I work as a night shift nurse so trying to work out days off is pretty tough. Trying to stay hopeful!

    #24023
    LaurenMW929
    Participant

    Cmarie,
    I’m in tears as I read your post because it’s like I’m reading, verbatim, my own experience. Everything from never being able to use a tampon to my husband and I both waiting until marriage to experience sex, and the feeling of loneliness and shame not being able to confide in anyone. My husband has also been nothing but loving and supportive but I still find myself feeling like he deserves better. I feel guilty for keeping this experience from him but its really being kept from us. I made this mistake of never even going to the OBGYN until AFTER we were married and it is something I have regretted every day since learning about my Vaginismus. You are not alone! I am so happy to hear you also have a loving husband who is there to support you during this time. This is a complete shock to myself as a woman to, as you said, not be able to do something so natural. I personally don’t have a known or an understood fear of penetration, but every time we try my husband also says it is like he is hitting a wall. Even though he is determined to satisfy me and I him, I feel guilty and beat myself up internally for one again not being able to allow my husband in even though I want to. The involuntary tension is beyond frustrating and leaves me feeling alone and like a horrible wife; even though my husband ensures me I am anything but a horrible wife. He has held me and loved me through this time and ensured me we will do whatever it takes to get through it. It sounds like you have a husband who supports you just the same and I believe that makes all the difference during this time; a loving and supportive partner.

    Thank you for sharing your story. You’ve encouraged my aching heart by showing me I am not alone. I am so sorry that you and your husband are experiencing this as well. I am definitely going to be praying for you both, one sister in Christ to another.

    #24026
    Sks823
    Participant

    cmarie (and all others who relate to this post),

    I’m so so sorry to hear about your issues with endometriosis and that you’re unable to have sex in your marriage, but it’s great that you found this website and now know that you have vaginismus, and it’s great that you have health insurance and have found someone that can do the botox procedure.

    I had a very similar story, but I overcame vaginismus using dilators of increasing size and going to Maze Women’s Health center every couple/few weeks to help me with the dilators (so physical therapy… for those muscles down there). Like pompon mentioned, I recommend either using your current doc if he does dilation therapy or looking up other women’s health centers that know about vaginismus – maybe giving a few a call to see if they would be able to help show you how to use dilators (and see if they take your insurance).

    I think that you might feel comfort in reading my success story, as I had the same issues as you and got through dilation therapy a much more confident and strong person – and it was obviously the hugest weight off my shoulders to not feel anxious and worried about sex – I honestly can’t even describe the relief!

    I’m only suggesting this because I think I was a VERY difficult case seeing as I couldn’t wear tampons, hadn’t had a pap smear, and had EXTREME EXTREME anxiety my first few appointments (I am sure that the Maze NP working with me wasn’t sure I’d ever be able to use dilators without the botox procedure).

    Here are a couple quick excerpts from my post:

    “This comes from me being a very difficult case – I couldn’t wear tampons from the pain/fear, and the thought of dilating with even the smallest dilator gave me immense fear. The physical portion of the first couple appointments were incredibly nerve-wracking; I was prescribed Xanax to take before each following appointment.

    When I was able to move up in dilator sizes every appointment, I felt accomplished and motivated.

    Just wanted to reach out and share a bit of my story. While there were times of frustration and times I wanted to give up, I’m so glad I went out of my comfort zone to make the first appointment and persevere …”

    My post and another success story from someone who had the botox procedure can be found here:

    I suggest trying the dilators and using the valium if your insurance covers it and if you’re having some issues with the dilators! – and then the next important step is NOT GIVING UP. There were a lot of times when I wanted to, but I kept with it! I took my time with the dilators and they worked for me! It might not be easy but with time and determination you can do it! Vaginismus is SO TREATABLE, it CAN BE FIXED!

    In my opinion the biggest challenge was when I didn’t exactly know how to use the dilators on my own, but once I was able to put in the smallest one by myself, the rest of my vaginismus “journey” went much smoother (with lots of small successes, like being able to use tampons!)

    I hope this helps a bit, I know firsthand that vaginismus is a lonely lonely thing to go through – but YOU CAN DO THIS! Definitely look through some success stories on this forum to show you that there were so many of us in your shoes that were able to overcome it. I am very glad to hear you have a supportive and loving husband who can help you through this – my boyfriend was also AMAZING throughout my journey.

    Keep us updated!

    #24053

    LaurenMW929,

    So good to hear from you – thank you for sharing your story and your support of others who are having similar experiences to yours. SKs823 advises you to read other posts on this forum, and I can’t second that more emphatically. What you will find is common ground with so many women who struggle with vaginismus.

    I was struck by your feelings about “not being able to do something so natural”. This is a common refrain at Maze – so many of our patients wonder why their bodies simply don’t cooperate in the way we expect. I can promise you that vaginismus is not your fault. It can be frustrating, painful and emotionally fraught, but it is also treatable. I encourage you to reach out to us for a free 10-minute consult – we’ll answer your questions and discuss potential treatment options with you. Let us know how we can support you.

    #24061
    recessivegenequeen
    Participant

    Lauren, major kudos to you for posting on the forums – I know how scary it can be to deal with vaginismus. I was especially struck by your regret at not having been to an OBGYN sooner. I think all of us who feel we’ve lost so many years to vaginismus wish we had known a lot sooner so we could have spared ourselves a lot of heartbreak. But part of what I had to make peace with is not being able to change that past. All I could do was change the present so I could work toward a better future and a better relationship with my body and my sexuality. I know that you have the power to make that life for yourself. Best of luck in pursuing it, and please let us know how it goes!

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