New to this all / basic Questions

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  • #41896
    coffeelover12
    Participant

    Hi all-

    Some background about me ad then some questions about vaginismus / going to Maze to treat it…

    BACKGROUND / ABOUT ME

    I’m very new to learning about vaginismus, and am starting to think that I definitely have it. I have never been able to insert tampons and felt like I was hitting a wall. I had mentioned this to my ob/gyn before and she just said to use pads. A few years ago, I had sex for the first time (when I was very drunk) and he was able to penetrate and it was an OK experience aside from how I was pretty drunk, because I did have a good physical relationship with him and trusted him. Later, I tried having intercourse 2x with someone else and both times it felt like he was hitting a wall so we gave up. I started to feel like something was wrong with me. I’m not a fan of physical / sexual relationships that are that casual like one night stands anyway so started to avoid those which I felt comfortable with, but I have felt that knowing that I might not be able to have sex has made me not prioritize dating or anything as much as I would like to.

    One thing that did make me feel better though was an appointment I had with my ob/gyn. I have been on the pill for a few years which worked out great for me, but then randomly my period came at unexpected times. My gynecologist did a full bloodwork exam (where we found I had some hormonal balances that she since helped me fix with a change in my birth control), as well as a full physical exam. In addition to using her hands inside my vagina to feel that everything was normal, she also with lube was able to insert a transvaginal ultra sound — which looked bigger than any tampon I had failed to insert — and was able to insert it and move it around to get the images she needed to confirm nothing was physically wrong with my organs, either. It was actually a big relief. It was uncomfortable to have it be moving around but wasn’t painful and she was able to insert it easily. It made me feel like maybe things aren’t wrong with me, or at least if they are they can be fixed.

    Since then, I have tried inserting a finger to no avail, and have learned what vaginismus is. I am thinking of trying to go to an appointment at Maze this summer when I am back in the NY area.

    QUESTIONS ABOUT VAGINISMUS / MAZE
    I guess my questions are:
    1) Do you think Maze can help me?
    2) I am nervous that treatment will take an incredibly long time and be really difficult. Do people tend to have success with being able to have intercourse or use tampons in a short period of time, or does it take years?
    3) How often do you need to go to Maze for treatments? And how long are the appointments? I am trying to figure out how I can accommodate it with work
    4) What kind of things do you do during your appointments? I get anxious doing new things so it is helpful to know what to expect

    Thank you!

    #41910
    coffeelover12
    Participant

    Oh also – how do you suggest talking to your gynecologist about this? As I mentioned, I had told her before I couldn’t insert tampons and she never mentioned vaginismus. Should I ask her if she thinks I have it and tell her I might go to Maze for treatment? Or should I just got to Maze and tell her about it at my next appointment? I want to keep her in the loop so she is aware of everything going on down there for me since she oversees my hormones / birth control etc, but I am concerned as she did not ever mention vaginismus, so I’m not sure if she is that familiar with it…

    #41951
    recessivegenequeen
    Participant

    Hi coffeelover12! Thanks so much for posting on the forums – here’s what I’d say in response to your questions.

    1) I definitely think Maze could help you (for context, I received the botox treatment at Maze and had an extremely positive experience there with everything from the knowledgeable and supportive staff to their comprehensive knowledge of pain and how to treat it). Maze’s different treatment options work for people with all different levels of vaginismus, whether they’re able to insert some things (but not all) or have such severe pain/anxiety responses that they can’t bear to be touched anywhere near their vaginas. It sounds like you fall somewhere in the middle, so I feel confident they could meet you where you are in your situation.

    2) Everyone’s experience of treatment is different, but it doesn’t often take time in the order of years – although it really depends what treatment method you go with. I had severe enough vaginismus that I had to go with the botox method (which you can read about here:https://www.mazewomenshealth.com/painful-sex-vaginal-pain/vaginismus-treatment-under-anesthesia/) and I was able to be penetrated by a penis for the first time 20 days after the procedure, which is definitely on the fast end of things. Other women follow a dilation schedule and take weeks or months to make gradual progress. Talking to Maze (by calling them for a free 10-minute consultation) or visiting their offices is a good way to start figuring out what type of treatment might be right for you. Likely whatever you do will involve some dilation, which can be effortful and uncomfortable, but I wouldn’t describe it as really difficult – and the payoff is worth it.

    3) Again, it depends on how you go about it – you can have just a few consultations if you do botox, or you can even do a remote dilation program through videochat, so the clinic is great at working with people where they are in their lives.

    4) Early on if you start going to the clinic, you’ll likely just talk with someone at the practice whose goal is to get to know you better, learn about your sexual past, and understand what your priorities are when it comes to treatment. You’ll be speaking with someone long before you have to do anything on an exam table!

    5) It can be tricky to find a gynecologist who understands your situation – you might ask your gyno if she’s treated people before with vaginismus or vulvodynia to see if she seems familiar with the conditions (there are a shocking number of doctors who aren’t). You can also try giving Maze a call for the free phone conversation at 914-328-3700 – your health is your priority so you’re allowed to talk to other people besides your gynecologist about if if you think they’ll help! you can always tell your gyno about it after or talk to them before you start any treatment regimens.

    I hope this helps! Let us know if you have any other questions!

    #41965
    coffeelover12
    Participant

    Wow, thanks so much for your thoughtful response! I think I am going to call Maze for the free consultation, and if it makes sense, make an appointment when I am back in NYC this summer. I am also going to try to talk to my mom about this because I think it would be helpful to have her support instead of feeling like I am doing this all secretly.

    I think my biggest struggle is just feeling like something is wrong with me and feeling that it is unfair that I have to deal with this when other people don’t… but I am trying to reframe my thinking from that mentality to instead feel empowered that this is treatable for most people and that I can take steps starting now to try to move past this and improve my situation so that I can partake in things that I want to that I feel I haven’t been able to yet. And as much as maybe I would have wish I would have been able to do so years ago or not have to deal with this altogether, I can seek treatment soon…

    Thanks again for your kind and encouraging response. I am nervous that this process will be tough and uncomfortable and take a while but it does make me feel better to know that Maze has helped so many people, and even extreme cases, and that you have had a lot of success with your treatment.

    #42108
    recessivegenequeen
    Participant

    Glad to help, coffeelover12! I highly recommend giving the Maze Clinic a call, they’re such a wonderful group of professionals who are great at sending people in the right direction, regardless of what treatment would work best for them. Another big advantage of calling them that I would recommend is that no matter what you decide to do, on that call you’ll be talking to someone who will take your experiences SERIOUSLY and won’t dismiss them as being “in their head.” For me the first healing step in my journey was this very first conversation because it was the first time a medical professional had really LISTENED to my issues and cared about my pain in more than a cursory way. It’s good to be reminded that there are knowledgeable doctors out there who are working to help women actually solve their problems!

    I also think it’s a great idea to talk to your mom just because it is really helpful to have someone else who knows what you’re going through and can support you emotionally. It was awkward to tell my mom at first what I was doing but I was glad to not feel like the weight of that secret was crushing me anymore with her.

    This is such a powerful reframing you’ve done around thinking about the problem! I know how you feel – for awhile (especially in the period of time between when I figured out I had vaginismus but before I got treatment for it) I carried a lot of anger and resentment toward the world that this was happening to me and that other people didn’t have to deal with so many hard feelings and physical sufferings, but I eventually got to the same place that you’ve arrived at. In retrospect I recognize how fortunate I was to be alive at such a particular time that this issue is finally being understood and has treatments like the botox procedure available (which has something like a 92% success rate!) Many people with serious medical issues probably DREAM of a possible solution that succeeds 92% of the time, so I’ve found my way to gratitude along the way of my healing. No matter how things have gone before, you have the power TODAY to begin taking steps toward a solution. I think once you find yourself improving you will move even closer to feeling at peace with what has happened. However, you’re also totally right to be mad that you’re having this issue – it isn’t fair at all, and it’s ESPECIALLY unjust that so many women go years without understanding their issue or seeking treatment. By spreading awareness of vaginismus and other sexual pain issues, we can hopefully spare future generations the same prolonged confusion and suffering and make getting treatment easier than ever.

    Getting treatment definitely can be time-consuming and uncomfortable and challenging, but it’s also one of the best things I’ve ever done for myself – not only did I get to reclaim the ability to have pain-free sex, I let go of so much shame and found a confidence I’d been missing because I was so caught up in my own sense of being a failure. I would recommend anyone suffering from vaginismus even if they didn’t have a partner for THIS reason – you don’t deserve to feel like you’re less of a woman for having this issue, and you can take that power back.

    I hope you’ll let us know how your treatment goes and ask any questions you have along the way – a happier life is out there and I know you’re brave enough to carry it because you have done the first step of asking us for help. Good luck and we are pulling so much for your success!

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