New member here

[Jess567]

Hello! I am new to the forum after stumbling across this site while doing research. I’m excited to have found this forum, it seems like a very supportive and informative place so far.

A little background: I’m 30 years old and I have had vaginismus from the first time I tried to have sex at 22. I have managed to have penetrative sex a handful of times. This has either been with significant pain or while very drunk. I figured out that it was probably vaginismus at about 25 after doing a lot of research and going to a very unhelpful doctor (she told me that the pain must have been because my boyfriend at the time was bad in bed and not giving enough foreplay). Later, at about 27, I found a doctor who was not very familiar with vagninismus but recognized there was an issue and he referred me to physical therapy.

Physical therapy was very helpful and I had a fantastic therapist. However, I was pretty depressed and anxious at the time and I don’t believe I progressed as much as I could have if I had had the energy and motivation to dilate like I should have. It has now been about 2 years since I stopped physical therapy and I haven’t progressed very much. I am a lot healthier mentally which has helped(I can do the 3rd dilator, I could never get past the 2nd one before when I was always really anxious). However, I am struggling to progress past the 3rd dilator. Unfortunately I am not in the financial position to go back to physical therapy at the moment. I have also moved cross-country and need to find a new doctor who is familiar with vaginismus. I am hoping to be in a better position next year (getting an HSA contribution from my employer) so that I can go to at least a few sessions. I’m hoping that this forum may help me to be in a better position by the time I am able to go back to physical therapy.

A few other details that may be helpful. I am in 1.5 year relationship with an amazing guy. He is very supportive and does not pressure me about this. We have tried to have unsuccessful penetrative sex a couple times after drinking but we don’t attempt it on a regular basis. I also don’t enjoy drinking and really don’t want to have to be drunk to have penetrative sex.

I have not read a lot of the forum yet so I am not sure if this has been mentioned, but I also have a lot of other muscle tightness in the pelvic area outside of the vagina. I have frequent hip pain, sometimes to the point where I can’t walk, and my piriformis is always incredibly tight. My physical therapist and a massage therapist have mentioned to me how I am very stiff and not flexible in my legs and hips. A good chunk of my physical therapy was focused on these areas as well as my tailbone which I have injured multiple times. I don’t know if this is common in women with vaginismus, I have wondered that for awhile since a lot of the muscles are connected in that area. If my hip and leg muscles are tight, the muscles in my vagina also seem to be tighter too and dilation is much more difficult. Has anyone else encountered this? If so, what helped? It seems like I have to fix that whole area to be able to progress in one area which is pretty disheartening. Especially with the price of medical care (or massages).

Sorry this was long-winded. Thanks for reading!

[Leslie Turner, WHNP, CNM]

hi Jess567,
Welcome to the forum! First of all, congratulations on reaching out for support. There are many women on this forum who have been where you are now, and it’s very helpful to hear their stories.
Yes, you are very insightful to recognize the relationship between the tightness of your hip/leg muscles, the injuries to your tailbone, and your pelvic floor muscles. While I understand that you’re not currently in physical therapy, did your prior PT suggest any at home exercises that were helpful in the past? Another resource is the book, ‘Sex Without Pain’ written by Heather Jeffcoat, a pelvic floor PT. She includes at home exercises that can be done to help stretch the hip/pelvic/leg muscles.
You many want to read her book and also see if you can find a recommended pelvic PT in your area; you could possibly even schedule an appointment now for next year when you have the HSA contribution available. Sometimes just taking a small action in the direction you want to go in can help provide the motivation and encouragement to continue dilating.
Very glad to hear that you have a supportive partner! Please continue to reach out here on the forum and keep us posted. Wishing you all the best!

[Jess567]

Thank you for replying! My physical therapist did suggest some stretches and exercises for at home. Admittedly – I don’t do them as often as I should anymore, but even when I did them quite regularly it just didn’t seem like enough. It is possible that I was too impatient but I am definitely interested in learning some other techniques. I have ordered the ‘Sex Without Pain’ book and am hopeful that it will be helpful.

There are some pelvic health physical therapists here so I will see if I can set up something with one of them. I would really like to find a gynecologist who is familiar with vaginismus as I have had some unpleasant experiences with ones who weren’t. Even the one who referred me to a physical therapist didn’t really seem to understand the condition. I’m going to be much more picky this time as I live in a larger city now and there are many more doctors here. Thank you for taking the time to reply and I appreciate your suggestions!

[recessivegenequeen]

Hi Jess567 – welcome to the forums! We’re glad to have you here, and we know better than most people how hard it can be to deal with vaginismus. I had it for 9 years before getting the botox treatment at Maze and the advice I’d give anyone regardless of the type of treatment they’re pursuing is that the things that will make you most successful are to work consistently every day and to not put yourself on a timeline. Dilating and pelvic stretches are tedious work, but you’ll see less results if you work inconsistently. Even if you just dilate for 5 minutes a day, it helps your body get used to the routine and keeps you focused on and attentive to your goals. And as hard as it is, you have to be patient with yourself. Progress can be slow and sometimes you’ll be able to do something one day and not do it the next, but that’s part of the natural rhythm of training your body and is super normal in the larger scheme of things. You’ve already seen for yourself that being in a mentally healthier place has enabled you to get further with dilating than you did when you were unhappy, and giving yourself grace is so important on this journey.

Good luck and keep us updated on how it’s going! We’re always happy to answer questions!

[Jennifer Dembo, LMSW]

Hi Jess567 – so glad you are here and have shared your journey with us! Keep up your wonderful efforts – you are doing yourself a great service by investing so much time and energy in your health and healing. Recessivegenequeen and Leslie provided terrific guidance, and we’re all here to cheer you on and provide support. Best of luck to you!

[Jess567]

Sorry for the delay in responding, but I wanted to thank everyone for the input and support! I’m glad to have found this forum. I won’t have much access to the internet for the next two weeks due to travel but I will make sure to check in after I return.

I did order ‘Sex without Pain’ and have read through it. She did mention that she usually works from the inside-out but some women need to work from the outside-in due to various issues. I think I am one of those women due to previous injuries. I have a lot of other pelvic pain and I really struggle to make progress internally (and sometimes regress) if I am having pain or tightness anywhere in that area. So I am currently focusing on daily stretching (both stretches from the book and ones that my physical therapist recommended) along with some foam rolling. I can already feel some positive differences in my hips so it seems promising. It was actually a relief to read that some women need to address the larger muscle groups first as it seems to explain some of the issues I have been having.

[Jackie Giannelli, FNP-BC]

Hi Jess567 – Sex without Pain is an EXCELLENT book and resource and I’m glad you are finding some takeaways from it. Each day with dilation is different than the one before, because our pelvic floor muscles respond differently to stress each day! Do not feel discouraged if one day you wake up and cannot get in the dilator that you got in the day before. Pelvic floor awareness is a honed skill, as is dilation, and sounds like you are really getting the hang of it. Let us know how we can help you on your journey:)
Jackie

[recessivegenequeen]

Jess567 – so glad to hear you are making progress! The more you work with stretching, dilating, and other forms of treatment, the more you’ll start to see results – AND the more you’ll recognize that this journey has setbacks as well as moments of triumph. It’s a gradual climb, but the fact that you are working at it means you will reach your goals if you keep at it! We’re proud of you and can’t wait to hear how things continue to go for you!