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[sgmivy]

I posted this in read this first, but I’m not sure if that’s active/the right place so. I’m here because I had a pretty awful experience.

I’m not even sure this is what is going on with me but it seems closest and I just had the most humiliating and depressing doctor’s visit so.

I’m 36, I’ve only had one partner in my life as a teen and she was female. I’ve always had painful pelvic exams and pain using internal menstrual products and pain trying to use toys on my own. My previous primary doc, on an exam, said that my vaginal opening was much smaller than she would expect to see on an adult woman and recommended seeing a GYN to help with that, especially if I was considering dating men.

I was embarrassed and then had a big move so I didn’t. Finally decided to try and was basically laughed at by the doc. They couldn’t understand why I would bother coming in if I wasn’t sexually active, and also seemed to have a great deal of trouble understanding that I wouldn’t be at my age.

The doc point blank told me – it’s going to hurt a lot the first time and probably for a while when you first have sex, you’ll bleed a lot and I won’t consider referring you for any treatment unless you’re having repeated sex with men that’s excessively painful. The fact that I also can’t use anything penetrative on my own and might want to is apparently not an issue.

I left crying and shaking and I basically am at the point where I think maybe I should just give up dating and never leave my house again. It took me so long to finally look into this and now…

Has anyone been taken seriously with this issue if they aren’t in a sexually active with a male partner? I think at this point I’m stuck with anything I can find on line because I don’t think I can ask a doc again in person after this. Or is she right and I’m just being stupid?

[60istheNewfifty]

First, let me say I am sorry you went to a medical professional for help and ended up feeling badly about yourself. I am not very adept at comforting others, but please believe me when I say that is my intention here. I hope you are able to use the situation as a learning tool to help you become a stronger advocate for your health. I do know exactly how you felt, I had a similar issue and outcome in the past. In that regard, after 42 years of going to GYN’s for various (sometimes “off the grid”) problems myself, I’d like to help you understand how doctors think. Not saying it’s wrong or right, just saying that understanding them is a tool you can use to help yourself. Does my mechanic need to know that I want my car’s brakes fixed so I can drive it as the getaway car after a bank robbery? Well of course not. He only needs to know that the brakes don’t work properly – and all cars have brakes and all brakes should work – so that he can wrap his mind around the facts and do his job to the best of his ability. When a doctor asks you questions of a personal nature, they are not really asking you to tell them what your emotional/social/dating life is like. They want to know about your body, as in the human organism, so that they can fix something that’s wrong or cure a disease. For a female problem, they don’t want to know what or who you are having sex with in the context of “sex”. A GYN is not a sex therapist and they will tell you that in a flying minute. (I have had some tell me they are also not nutritionists and also not “hormone specialists” either, so you have much future humiliation to look forward to around age 50). In your case he only wanted and needed to know if your body was functioning as it was designed to. Do you see what I’m getting at here? There are times when there is no need to make yourself more vulnerable than you already are. My suggestion for you would be to find another doctor and during the discussion of your issues limit the conversation to how your body is not functioning as it was designed and intended… which means, on the most basic level, it cannot be penetrated by a male body part. You might want to throw in some detail on the difficulty you had when you tried to insert the “male body part.” Don’t get into the whole hardware/toy thing… provide the facts in the context they can understand and advocate for your body in order to get the healthcare you deserve.

[Cathleen Kneidl, RPA-C]

I am so sorry you were treated that way. You need to find a new gyn. Regardless of who you choose as your partner and how you want to have sex, you deserve to have pain free sex! Sex should not hurt. And there are treatments available. You need to find a provider knowledgeable about vaginismus or pelvic floor dysfunction. I am sad to say that in my experience not all gyns are knowledgeable in this area. But this is a very treatable issue. If you have any questions, please feel free to call us here at the office.

[recessivegenequeen]

sgmivy, I’m so sorry for how you were treated. Just about everyone here who’s dealt with vaginismus has had a really negative experience with a medical professional, which is frankly shameful and not how it should be at all. Doctors should not make their patients feel embarrassed about the issues they’re having with their bodies, but all too often it still happens. I think sexual issues are particularly difficult because we bring so many emotions into the room when we talk about issues with our vaginas, more so than we’d have if we were dealing with a broken arm or a gallbladder issue. Sexual performance is such a large component of how many of us see “being a woman,” so the smallest stray word while we’re making ourselves vulnerable to a doctor can cut like a knife.

I think 60istheNewfifty has good pragmatic advice about dealing with doctors you don’t know – try to treat your situation like you’d explain a broken arm and you may find yourself feeling less at the mercy of a doctor’s judgment. However, I want to emphasize that there ARE doctors out there who bring empathy and warmth into their treatment and help you feel less alone in your issues – everyone who works at Maze completely changed my perception of how well I could be understood and supported by a medical professional, so I am super grateful to them for all that they’ve done for me! Better and more nurturing medical professionals are out there if you’re prepared to look. But more than anything, know that you have a right to be cared for and treated knowledgeably!

[mroberts307]

Hi Everyone-

Today I had my first annual exam at the gynecologist. She was only able to get about an inch of her finger inside me before I had to ask her to stop, crying. I am 29, and have been married for 3 years and with my husband for 10. We’ve never been able to have penetrative sex. But this step today for me was huge- my primary care doctor has been suggesting I go to sex therapy for 4 years, and I keep putting it off. To me, sex therapy sounded like something you needed if you were a sex addict, not for someone in my situation. My doctor had even called in a referral for me but when the place called to make an appointment I asked if there was a list of doctors I could choose from, to find one I felt comfortable with, and she said there was only one doctor that was right for me. When I asked why her response was “Well, to be frank, she’s very patient.” I have never felt so judged before or since. I told her I wasn’t ready to schedule and hung up the phone. And then waited 3 more years before doing something- 3 years in which my relationship with my husband has suffered and so has my self confidence. 3 more years without even the possibility of kids that we both want. 3 more years of annual doctor visits where I have to tell my primary that nothing has changed, and see the look of pity on her face.

This fall I was reading a book and one particular passage struck me very hard…it perfectly summed up feelings I’ve had about why I am like I am and how your personality starts from childhood. The passage had nothing to do with sex but it was that reading that made me decide it was finally time to go to therapy. A few days later I was with two close friends and I confided what I’d been going through to one of them (the other already knew). I told them how alone I felt, and that I was pretty sure I was the only one in the world going through this. I had googled things like “afraid to have sex” but never found results that related to the problem I was having. Within minutes my friend who works in the social work field had found the term “Vaginismus”, a blog with someone’s story that was so like mine it had me sobbing as I sat there reading, and a link that led me to this forum. She showed me PsychologyToday.com and said I could go on there to find the right therapist for me. It took awhile for me to be ready, but finally in January I reached out to a therapist that I found on my own. She isn’t a sex therapist, and most of the topics we discussed had nothing to do with sex or my relationship, but instead childhood, my relationship with my parents, anxiety, and the overall theme of control kept coming up. After 4 weekly sessions with her I finally told my husband I’d been going to therapy. I told him what Vaginismus is, that I thought I had it, and I even provided him a printed out article for the spouses of those with vaginismus about things he could do the help support me. I told him the next step is to go to a gynecologist and have them to do an exam to see if there is anything physically blocking the opening. If not, I would need to move forward with treatment via vaginal dilators and over time hope that I can work up to a normal sex life. Our conversation could not possibly have gone worse. He took offense to the article on how to support me and said he thought he’d been pretty supportive over the last 10 years (by not pushing to have sex, or leaving). The conversation ended with me feeling anything but supported, and sobbing myself to sleep on the couch. When I went to my first gyno appointment (which I was clear was just an appointment to talk about my situation and NO exam was to be done) I came home with the info that I either had a physical blockage that needed to be removed via surgery, or Vaginismus which needed to be worked through step by step. His overall attitude has been ‘Ok, sounds fairly straightforward, you just have to take the steps’, which of course doesn’t factor in the huge emotional toll this takes on me. It’s been lonely and hard and I’ve basically ignored the situation for the last 3 months since that first appointment while I worked up to being ready to go in for the gyno exam today.

Today, I’m hoping this can be the step forward I need to work past this Vaginismus. I’m researching dilators and trying to decide which ones to buy. I’m looking up sex therapists and trying to find out how that will fit in to the overall treatment plan. I’m finally posting here instead of just silently lurking, all in hopes that it is finally time to get my body and my brain on the same path to recovery.

If you’re still reading thanks for sticking with my long story. I look forward to connecting with you all on here now that I know I am not going through this alone! Hugs!

[mazemelissa]

Welcome to the forum, and you are no alone in this!

I love that you wrote, “it is finally time to get my body and my brain on the same path to recovery”.

That is so key when treating vaginismus. The process of working on the fear and anxiety as well as doing the dilation exercises regularly will help you connect your brain and your vagina to work together.

I don’t know where you live, but if you are anywhere close to MAZE we could really help you in that process. You also sound like a great candidate for the Botox procedure.

I think you should invest in a dilation kit, there are many different ones out there, we like to use the Syracuse medical dilators, the silicone pure romance dilators, or the pacik glass dilators from crystal delights. Many women purchase the vaginismus.com set, but that is actually my least favorite brand.

Hope this helps, and keep us updated!

Melissa

[mroberts307]

Thanks Melissa. I ordered the Pure Romance dilator set last night after researching a bunch of options. Someone from Maze called me this afternoon and left a message so I am going to get in touch with them for more information/cost on the Botox option. I am located in Vermont.

[recessivegenequeen]

mroberts307 – thank you so much for sharing your story, it was a brave thing to do and I am so impressed with the strength and fearlessness you’ve already demonstrated on your journey. So many of us share the same story of having waited years to seek treatment (years we wish we could have back, because once you take that first step you realize how possible it really is to have a different life!) I suffered with vaginismus for 10 long years, about 4 of which I understood I had vaginismus and did nothing about it, but the strange thing about it is that you have to be ready to take it on before you can make that first step, whether it’s picking up the phone to schedule a gynecologist or ordering the dilators online. I got the botox treatment at the Maze Clinic (and was helped by Melissa!) and it’s one of the best decisions I’ve ever made.

I’m especially sorry to hear about your husband’s reaction to the news about vaginismus – it is very difficult (but also VERY common) to hear of such reactions when you feel like you’re finally ready to take on the beast that is vaginismus. For a lot of male partners, especially LONGTIME partners of vaginismus sufferers, there are a lot of hidden and stifled frustrations – out of love for their partners with vaginismus, these men often conceal the extent of how the condition has affected them (sometimes they’ve even hidden this feeling from THEMSELVES) and often you beginning to explore treatment unearths a lot of those feelings for the partner. They can perhaps fear disappointment or regret the time they spent not having sex and wonder if things could have changed sooner if they had spoken up. It can be VERY hard when you are in the midst of your own feelings and concerns about getting treatment, but one of the only regrets I have about my own treatment journey is that for a long time I didn’t give my partner enough credit for how much he supported me through it, always letting me feel at the center of things even though it affected him as well.

THAT BEING SAID, I think what would help your husband to understand is that this is an exciting step for both of you and for the future of your relationship. This forum has a board that’s specifically for male partners of vaginismus sufferers, and that board is full of stories of men who are disconsolate over the fact that their partners know they have vaginismus but refuse to take steps to seek treatment. Whether it’s because they aren’t ready or don’t ever want to consider it, these men feel trapped in a situation they have no control over. The fact that you have demonstrated your desire and willingness to seek treatment speaks volumes about the promise of your future, and I think when your husband realizes that he will join your team and work toward this goal. Show him these forums, show him your dilators, and show him that you’re ready to work. You have taken huge steps toward a better future and you should be very proud of yourself – better things are ahead of you.

[CaramelSeasalt]

Hi!

I want to start out by saying I have had penetrative vaginal sex three times, and it did not hurt at all.With, varying penis ‘lengths and girths’.However, I have had it happen that the guy I am with just is unable to get his penis inside me a LOT of other times. Even in relationships. Everything I have googled just pointed me towards vagismus, but I am not sure it is that since it has happened before. I really do not know what to do, am I just sometimes able to have intercourse? And how do I know a certain time it is going to happen, and when it is not? Because when it is not going to happen, it is like there is a physical soft blockade down there.

P.S. I am so grateful a chat forum like this is open, amazing to have found a place where I can just learn more about this type of stuff instead of relying on general listicles on ‘how to get ready for the first time’ by magazines hahaha

[Cathleen Kneidl, RPA-C]

Hi CaramelSeasalt,

Thanks for joining us on the forum. Of course it is impossible to diagnose you over the internet.. But do you have an internal vibrator that is approximately the size of a penis, or could you get one? You could try inserting that first and see if that helps to relax your muscles. If it continues, I would follow up with a health care professional for an evaluation.

Hope that helps

[recessivegenequeen]

CaramelSeasalt, welcome to the forums! Yes, it’s great not to have to just rely on listicles and surface content that totally doesn’t address some of the problems you can have at all!

Like Cathleen said it’s impossible to tell over the internet definitively what’s happening with your body, but it’s interesting that you don’t have pain. I had vaginismus for about 10 years and wasn’t able to have sex until I got the botox treatment at Maze, but I WILL say that more often the problem wasn’t the pain so much as the fear and anxiety of being penetrated that kept a guy from coming anywhere near me. Perhaps you’re less able to have sex when you’re anxious or not relaxed? Could be any number of reasons but that’s a common factor among us who deal with vaginismus.

Getting a vibrator is a good idea, and it might be worth making note (like literally keeping a note in your phone or a notebook) of how sex or attempted sex feels and the circumstances around it. If you have successful intercourse, try to notice things like where you were, how you felt emotionally, whether you’d had alcohol beforehand, whether you’d had a bad day at work or were tired, where you are in your menstrual cycle, WHATEVER you think would be useful so you can start to look for patterns if you’re not sure why the problem happens when it happens. If you try some of this and still feel stuck, seeing a gynecologist is a good option as well!

[Sks823]

CaramelSeasalt,

Welcome to the forums! I agree with the advice above me. I think getting to know your body with a vibrator/internal vibrator could help, along with trying dilators and discussing your issues with a gynecologist and/or therapist. Looking for patterns with a notebook (like recessivegenequeen suggested) is brilliant!

Everyone’s situation is different but you will be able to overcome this with time, trying different things, and patience!

Cheers!

[plantmama2000]

Hi all! I really hope this forum is still in use because I just want to talk to people who understand what i’m going through.

When I was 15 I was sexually abused by my ex partner, this went on for about a year. 2 years after breaking up with him I had to get fenton’s procedure as there was a lot of scar tissue left over.

Now i’m 19 and I’m still having difficult getting anything inside my vagina. One of the gynaecologists suggested dilators at one point, the thought of them intimidated me but I’m so tired of the stress it’s causing me. I’m tired of feeling like I won’t ever have a healthy relationship with my body anymore. I’m tired of feeling like the one thing that was mine, privately mine, has been stolen from me. I want to feel “normal” (whatever that is) and I want to feel at one with my body again. I feel like my vagina is a foreign part of my body, kind of like a stranger that I want to get to know better but I just can’t. So today I have ordered myself some dilators. I’m scared in case i’ve just entered a whole new level of stress that I’ve not yet experienced. I just want to talk to someone who also has troubles, none of my friends have this problem and I feel so alone.

[cattydoll]

Hey!
Our stories are so similar it’s scary! I was raped at age 15 as well, multiple times. And now I am 20, so we are very close in age (especially if you were born in 2000 as your username suggests, I was as well and just turned 20 in January). I was diagnosed when I was 19 with vaginismus and chronic pelvic pain. (Hips, lower back, groin, everywhere)I struggle to relax any sort of muscles “down there”…I struggle to use the restroom as well. I also have a lot of scar tissues but it’s never been addressed.
I’ve been going to pelvic floor physical therapy to address all these issues twice a week for over half a year now and was just sort of booted because “there isn’t much else they can do for me”. Which stinks, but I also can understand…so I definitely understand feeling the hopelessness, as I’m currently feeling this way after being kicked from PT. I am now looking for pelvic pain specialist drs and my physical therapist suggested vaginal Valium or Botox for me, though, she has a doctorate (DPT), she cant prescribe anything as she’s not a MD. So I will be searching for one. The thought of dilators scare me too! Just the internal work in physical therapy I went through was so anxiety-inducing.
Hang in there, though. From my understanding vaginismus is more common than we think, but nobody talks about it because vaginal pain is just kind of brushed over as “normal”…I went almost 5 years thinking my pain was normal until I casually mentioned to my primary care doc that I couldn’t use a tampon, like it wasn’t a big deal. Well it was a big deal! Get in those stirrups and bam! I have vaginismus! LOL.
There’s a lot of great women on this forum and a lot of success stories as well. Don’t lose hope, we’re all in this together <3

[recessivegenequeen]

Hi plantmama2000 and cattydoll – what you’re describing is something that’s been felt by SO many women, including myself. I went almost 10 years thinking my vagina was this foreign entity that was always going to thwart what I wanted, but today I have pain-free intercourse and have resolved my emotional issues related to my vagina. I figured out at about age 21 that I had vaginismus after a failed attempt at a pelvic exam at my college’s health clinic and resisted finding treatment for several more years until a partner insisted intercourse was important to him. I ended up getting the botox treatment and after dilating and botox, was able to have painless intercourse over time. There are treatments available out there, whether it’s dilators, pelvic floor therapy, or botox, and having a normal and healthy relationship with your vagina is possible! The way you feel now about your vagina is not how you have to heal forever. Don’t hesitate to ask for help here in the forums or to give Maze a call – there is help to be found.