Diagnosis, denial and lost years

[Emdeejay]

I’m a new member. I’ve been suffering with vaginismus for 17 years. I am now 31. I’ve been in denial about this problem since I was 14 and I failed to use tampons on my first attempt. The pain and embarrassment made me ignore my vagina until I had sex for the first time. This was at 21; I had declined all advances from men before this (looking back it was because of the fear of vaginal pain, although I wouldn’t have admitted it then). It was a disaster, he failed to penetrate, I became desperate and told him to “force it in” which made the pain worse and my muscles clench tighter. Pain, shame and fear closed me down mentally after that. I have avoided men and relationships. I have been aware of my problem and pushed it to the back of my mind. I have failed to have smear tests, with nurses telling me I “just need to relax” and “it’s because I’m not having sex”. Somewhere, I saw at some point in the future, the problem relieving itself and me having a relationship and a sex life. Only when I hit my 30s did I start to wake up to the fact that this was unlikely to happen without me being proactive and seeking help, which I did a few months ago. It has been difficult. I have never been able to even think clearly about my vaginal pain without breaking down in tears. Shame, self pity, anger, embarrassment all play a part. I cried in front of my GP, and then in the gynaecologist appointment, with the (male) gynaecologist and (lovely) nurse. Again, examinations failed as I was too clenched. The gynaecologist himself was impersonal and not at all reassuring. He told me this was all psychological and gave me a box of dilators. I only knew the word vaginismus from previous googling. So I have started to attempt treatment. I am using the dilators and trying not to see my vagina something separate that hurts and embarrasses me. Although the physical pain is bad, it’s my emotional response that has had the most detrimental effect on me. Since seeking help I have almost sunk into depression and anxiety (I suffer with mild anxiety normally). Lastly, I should say that this problem is kept from everyone around me, my mother, family and closest friends have no idea of it, I am attending appointments in secret and I do not discuss it. I have never disclosed it to anyone. I don’t know if anyone will read this long ramble but even typing my name into a forum about vaginismus is a huge, huge step of progress for me.

[Leslie Turner, WHNP, CNM]

Emdeejay,
Congratulations on beginning treatment and for reaching out for support as you begin dilation. This is a huge step. It takes a lot to seek treatment for vaginismus, and can be very disheartening when one’s initial attempt at discussing it with their medical provider isn’t fruitful. I encourage you to seek a therapist who can support you through the dilation process; ideally one who has experience working with women with vaginismus. It is very common for women to have a strong emotional response to dilation. Know that you’re not alone and that help is available.

[Sks823]

Emdeejay,

CONGRATULATIONS on the huge huge first step of seeking help.

I’m so so sorry to hear about your past difficulties with sex and gyn appointments, but it’s great that you found this website and know that you have vaginismus. I understand your situation fully – the shame, anxiety, pain, avoidance of our secret issue down there – but I overcame vaginismus using dilators of increasing size and going to Maze Women’s Health center! I went to Maze every couple/few weeks to help me with the dilators (so physical therapy… for those muscles down there).

I also saw a therapist at Maze who helped me through this issue and other anxiety issues – I definitely recommend seeking a therapist to help you on your journey.

Since you now have dilators, if you’re having some trouble using them alone, I recommend looking up 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 the dilators (and see if they take your insurance if you have it).

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 think I was a difficult case seeing as I couldn’t wear tampons, hadn’t had a pap smear, and had EXTREME EXTREEEME anxiety my first few appointments.

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 that is mentioned a lot throughout these forums can be found here:

http://mazewomenshealth.com/forums/topic/reflections-in-the-new-year/

For me, it was very important to NOT GIVE UP. 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 vaginismus. Also, I think that the small successes that came with using dilators (inserting the smallest one and not feeling pain, moving onto the next size, using tampons, etc.) may help with your depression/anxiety issues that you’ve felt since seeking help. I definitely know that after my first couple appointments didn’t go so well (anxiety, pain, feeling helpless & like treatment wouldn’t work on me), having even the smallest successes helped me get on track to eventually “graduate” from the dilation therapy 🙂

GOOD LUCK and keep us updated! you are AMAZING for taking this step to seek treatment!

[recessivegenequeen]

Emdeejay, Sks823 hit it out of the park with her response, but I wanted to chime in and say you are SO not alone in what you’re feeling, despite how I know it must feel. So many of us can trace our stories perfectly in yours – the years of pain and confusion and shame, upsetting visits to doctors, keeping the situation from loved ones, wanting a solution but being afraid to pursue it. But the good news is that so many of us got through what you’re dealing with and can tell you that safer shores are ahead.

One particular piece of Sks823’s response I want to reiterate (though all her advice was great) is that you see a therapist or counselor who you can talk to about how all this feels. Part of what gives vaginismus its power is the way it makes you feel ashamed and isolated from other people around you, and being able to talk about how it affects you is a way of taking away its power to control you. I don’t know what your personal life is like, but I also found that once I started opening up about it to a few friends I really trusted, I felt so much more supported and like I would get through it somehow. I know how scary it is, but letting other people in can give you the strength to go through whatever treatment you choose.

Please keep us updated and best of luck!

[Emdeejay]

Thank you so much for replying and sharing
It’s taken me until my thirties to deal with this and I think the fact that I’ve kept it inside for so long has meant that now I’m seeking help, the emotion has erupted out of me, if that makes sense. I have also confided in 2 close friends about this, and already it seems less like a shameful secret, it feels like the more I let it out, the more the issue shrinks.
I saw my GP yesterday as a follow up to my gyno, and she has referred me to a gynaecological physiotherapist, so I will keep working with the dilators until I get that appointment.
I am based in the UK so the health system is a little different, counselling and therapy are harder to come by for an issue like this, and waiting lists are long unless I went private and paid (something I would consider in the future), so for now I’m pushing forward with dilating and reading stories on this forum and online to keep me motivated.
I wish I had dealt with this years ago, I wish I had known this help was here

Em

[recessivegenequeen]

Em, I totally relate to this feeling! Hoarding feelings of shame and inadequacy for that long is like trying to plug a volcano – eventually the wave of emotional lava will burst forth! It’s so beneficial to open up about it and let other people in – trusting them takes some of the misery off of you.

It sucks that the health system in the UK makes the wheels turn so slowly for you – there are a lot of UK-based women on the forums who have echoed these issues. But the important thing is that you are working your way toward a better future and can begin dealing with this now. You still have so much time to lead a happier life, and now that you know it’s possible, nothing can dissuade you from getting it.

[Leslie Turner, WHNP, CNM]

Em,
We definitely encourage you to keep dilating until your appointment with the gynecologic physical therapist. Pelvic floor PTs (as we call them here in the states) are specially trained to help you work through the vaginismus. It’s great that you reached out and we encourage you to keep reaching out and talking about it. And please keep posting here also to receive additional support and encouragement!