Hi Everyone,
I’m so happy I found this forum knowing that I am not alone. Just want to share my story and hopes we can support each other. I’m now 38 and was diagnose with vaginismus February 2021. I am from Southeast Asia and grow up in a conservative family where I learn that sex is a painful act and must be done during marriage. I never had a boyfriend until on my mid 20s and would never go as far as having premarital sex because I am taught to do it when married. I never used a tampon since this is not common in my country, we always use pads. My current partner of 7 years tried multiple times over the years to have sex but whenever we tried – my legs will start to shake and I’m running out of breath then when we tried to penetrate i would feel pain. We tried to ignore it over the years and found ways to enjoy sex without penetration.
Last year, I decided to visit gynecologist after a big fight with my partner. When the doctor tried to examine me, she did not even insert a finger but my legs started shaking, cant breath and i started crying – she went as far as touching the labia only bec my vagina is too tight and tense. She suggested that i should do vaginal botox(which will relax the vaginal walls) but its not covered in my insurance and its too expensive. Again, I decided to ignore it.
Last month my partner told me that I should try to have a checkup with a gynecologist. Exactly a month ago I met this doctor who examined me – she was telling me to guide her finger to insert in my opening. We were able to insert it in the opening only bec i started shaking again, out of breath and crying. The doctor said she was not able to examine me thoroughly bec she cant get inside. So she suggested to do vaginal botox. We decided to go for it, without insurance, for a fee of USD4,100 – and i am still paying for it. After 1 week, I did the procedure. The procedure lasted 30min and I was on general anesthesia. I spent 3 hours in the hospital – I remember feeling nervous but I keep thinking I have to do it. It went well, I went home after 3 hours. I was feeling lightheaded and dizzy due to anesthesia. I have slight bleeding (gone after 2 days) and little pain (gone the next day).
I had follow up checkup after 2 weeks – (botox will take effect 2 weeks up to 6 months). She told me she had to do hymenectomy (remove hymen) during the procedure and she also explained that my vaginal muscles are very tight that it feels like injecting into a bone when she administer the botox. She was also telling me that even im under anesthesia, my legs were moving (trying to close) when she tried to insert her finger. She was saying my brain was signaling my legs to close even when im asleep. This makes me realize that our brain is really powerful and can greatly influence how our body react.
At this time, she was able to insert her 2 fingers but it was very uncomfortable. We also tried inserting medium size dilator. She taught me how to insert it. At first it was very uncomfortable – I slightly kicked her. But I push myself, i keep thinking I have to do it. I started counting while I slowly insert the dilator. It was very uncomfortable and a bit pain – i feel like my vaginal is being stretched. But we were able to insert it 3 times. I was so happy, I keep thanking my doctor bec she pushed me. She even bit tough with me – telling me that i have to cooperate and that my vagina has no hymen, it has botox – i just need to be brave and do my part which i did.
Four days after the follow up checkup, we tried penetration sex but we manage to go as far as the head only bec i feel to much pain. My partner’s size is large and im only using medium size. My partner has been very supportive and encourage me to keep trying and he is also happy we made progress although we did not do it successfully yet.
Today is my 10th day doing dilation – i am doing it everyday, I started 10min and gradually progress to 20-30min. An hour ago, I feel frustrated because I was doing well but from past 3 days I feel resistance when I insert the dilator. I have to tried 2-3 times until I fully insert it – which makes me feel frustrated. I was hoping i will get better and better everyday but i feel like im goin back. I feel like i have to progress quickly bec im running out of time. I am on my late 30s (very late) im thinking of having kids, or if i can still have kids at this age? But no one to blame but me.
Im hoping to ask for tips on how to dilate effectively. I am not sure if im doing something wrong.
Im thinking to schedule a pelvic floor therapist but i dont have budget for it. Maybe something I can do on my own?
Your help is very much appreciate. Thank you! 🙂
If you have any questions regarding botox or vaginismus in general, feel free to reach out to me. We can all overcome this.
Botox injections can be performed without using anesthesia, and there are many practitioners who will inject botox into the tight pelvic floor muscles as an in-office procedure.
We opt to use anesthesia, as many vaginismus patients we see have significant fear of penetration, and they would not be able to tolerate the injections without the sedation.
I think if a woman does not have any fear, and they can have some penetration, but the muscle tone is just significantly increased, botox without anesthesia is an option.
Our protocol at maze includes the botox injections combined with progressive dilation, so we feel the anesthesia is necessary in order to perform both.
Congratulations!! Just in case you haven’t had your baby yet, I wanted to share my story to encourage you. I got pregnant six months post procedure, and have since had two unmedicated births. The first birth was to a 9lb baby with a head circumference in the 99th percentile, and I did not even tear! The second baby, I birthed the head and body in the span of one contraction and did not tear that time either.
One small tip: knowing about my vaginismus, my provider injected a bit of lidocaine into the entry portion of my vagina during crowing phase for my firstborn. She said she did not inject much at all, and his head was finally born on the next push. I didn’t realize I was “holding” him back, but that little bit of help releasing those muscles was very helpful after having already pushed for quite some time by then (which could have also been because I was so exhausted for other reasons by then). So first birth was a success, and second was a cakewalk (at least, as far as child birthing goes 😉
I hope this is encouraging, and again, congratulations!!
I totally get why you are down…vaginismus can be a real slow battle to fight.
But you have to recognize that you are making some progress, even if it is very small.
You can ask your ob/gyn if she might be able to prescribe you diazepam suppositories to insert vaginally to help relax the pelvic floor muscles so your PT work is more successful.
If you feel that your fear of penetration is still overwhelming, and also getting in the way of your progress, working on anxiety reduction can be key. Some find starting a low dose antianxiety medication, like zoloft or lexapro, can be extremely helpful. But also CBT or some other form of talk therapy in conjunction with your dilation program can also be helpful.
Botox injections can be another treatment that could be helpful.
Just please…don’t give up…and don’t avoid it…you have more options to explore.
Hi, it’s my first visit in this forum. I’m suffering from vaginismus for many years. I’m from Bulgaria and in my country most of gynecologists treats vaginismus as a psyho disorder. I was searching for many years to find a doctor who will help me. Finally I find a gyno who offered me to put botox injections. The first one it was 100 units injected under anesthesia. I woke up with awful pain in my vagina because of roll of cotton which the gyno had put in my vaginal canal ( she didn’t have dillators ). I went back home, bought Vagiwell dillators ( 1,2,3) and start dillating. Unfortunately, the wall was there again. I went to a gyno to have another exam and she confirmed that the muscles around the vagina are not realxed at all. She offered me to inject another 400 units under local anesthesia and she told me that time she is going to use a transperineal approach for injecting. I agree.
Now it’s 8 days after the procedure and there is no effect. I can put the smallest dillator not more than 2-3 cm.
I don’t know what to do? Any suggestions? Does it mean botox don’t work for me or maybe it’s not injected in a right place.
Thank you in advance,
Hi LBS1515,
This is a complicated answer, because everyone is so different.
The dilation process helps in two ways: 1. it helps to lengthen and stretch the tense and tight muscles in the vagina, and 2. helps to reduce your fear surrounding penetration, by the repeated act of continuing to dilate every day.
However, for some the anxiety and fear is so overwhelming, that moving up in the dilation process is really challenging.
For many women addressing the anxiety, either through talk therapy or medication, can be the added key to moving up in dilation.
Anxiety can make pain perception more intense, and the more anxious you are, the more your body will tense your vaginal muscles.
This is why our Botox procedure is also very helpful. The botox injected in the muscles will prevent them from tensing and tightening, so you are not working against yourself.
Vaginal valium suppositories might also be helpful to relax the pelvic floor. Those are prescription and you would need to get them from your gynecologist.
There is no set time for successful dilation…you do you…just don’t stop trying and seeking help. Treating vaginismus is more of a long distance run, than a sprint…it takes time and effort, but you can get there, you are already on your way.
Melissa
Hi there
I had the botox injections about 9 months ago and it has been life changing. I dilate 5 days a week to maintain the results. I do still experience some pain towards the end of sex if I have already had an organism and my husband thrusts more vigorously. We also can only do the missionary position as other positions are too difficult but overall the procedure has been a success to enable a healthy sex life.
I’m currently trying to get pregnant and looking for tips around the below:
1. Are there any good pelvic floor exercises that are suitable when you have vaginismus? I don’t want to do anything that tightens the muscles again
2. Will I be able to keep dilating through pregnancy? I wonder if it might get difficult the bigger I get
3. Any tips to help my chances of a natural birth?
Thanks so much!
Hi Rglady,
Sounds like you have done really great work, and have come a long way. Being able to have painfree PIV as times is amazing.
Something to consider might be diazepam suppositories to help further relax the muscles. They are a prescription and you would need to get them from your gyn.
Botox injections can also be helpful, as that would paralyze the muscle and make your PT and dilation even more effective.
Trigger point injections with a pain management provider might also be helpful, if you can really target the spot that is painful, a skilled provider can do an injection in that specific muscle to help relieve the pain.
The diazepam suppositories might be the easiest way to go first, try that for a month or two with your dilation and PT and see if you have more improvment.
Melissa
Congratulations on all your progress!! The burning could be from a number of reasons! I too had a hymenectomy and I know for a while it burned to dilate. You’ve had a lot of trouble in there between the BOTOX injections and the hymenectomy so your tissues may be still recovering. It could also be the burning sensation of your muscles stretching. Or it could be your lube! As for the pink discharge, perhaps that’s a mixture of a little bit of light bleeding and your lube? Definitely keep up with your progress and dilating but maybe it could be a good idea to get an exam! Just to make sure everything is okay! Everything is so new to you and your body and may take some adjusting. After my BOTOX treatment, I had to see the doc a few times for the same concerns you’re having. Your body is going through a major change right now so be patient and listen closly to it and I know everything will turn out fine for you 🙂 It’s also important to remember that BOTOX doesn’t kick in for 2 full weeks so maybe you were still feeling some pain from the vaginismus. How are you doing now? Keep us updated! We’re here to help 🙂
sryan32 – Welcome and thanks so much for writing! I’m sure you’ve seen lots about the Botox procedure here on the Forum, and for good reason. It has a very high success rate for women who experience vaginismus (tightening of the vaginal muscles that make penetration difficult or impossible, depending upon a variety of factors).
The Botox procedure is performed under anesthesia (which is administered via IV), and once you are sedated, local anesthetic and Botox will be injected into your vaginal muscles. Then, a large dilator will be inserted into your vagina. You’ll awake shortly thereafter and spend time in recovery until you are ready to go home (or wherever you are staying if do not live locally). You’ll keep the dilator in until you return to our office the following day (this follow-up visit is required). We’ll provide you with a customized dilation protocol at this appointment, and discuss best practices for future intercourse. We’ll also explore behavioral approaches to healing that allow for maximum comfort and stress-reduction as you help your body open.
I mention dilation protocol because this will be a CRITICAL part of your treatment. Botox relaxes the muscles for about 3 months, and you need to take advantage of this flexiblity so that you can train your vagina to stretch.
RE: vulvodynia – some Botox patients find relief from vulvodynia, but that is dependent upon whether the condition is caused by muscular dysfunction or not. We can offer alternative vulvodynia treatment accordingly.
Everyone is different. Some have tried dilation or pelvic floor physical therapy, relaxation exercises or lube or any and all of these in some combination. Other women feel certain they want to move directly to Botox.
Let us help you determine what might be the best course of action for you – give us a call and we’ll help you make an informed decision. Take good care and all our best from Maze!
I so sorry to hear you are struggling. But even just consistently getting in the third dilator is a big accomplishment if prior to treatment you were not able to do any dilation at all.
Dilation is an uncomfortable process, especially in the beginning. I would guess that you are ready to move up to the next size, if you are finding the #3 is tolerable, and you had botox injections, the muscles should be soft enough to push through.
Have you tried sleeping with the #3 dilator through the night, and then try to insert the #4 in the morning.
I would encourage you to follow up with the provider who did your procedure, and have an evaluation. It can be really helpful to see a provider who will help guide you further in dilation. Sometimes you just need someone there encouraging you and giving you helpful tips on ways to get the larger dilators in. I always encourage our Maze patients to regularly follow up with us if possible.
I would also encourage you to speak with a therapist if you can. You are working through a lot of emotions and it sounds like you could use the support.
Hello Caroline! Welcome to the forums! First of all, I’m sorry to hear about your vaginismus diagnosis – I had vaginismus from ages 15 to 25 and I remember very well how tough it was at your age. The late teens and early twenties can bring a lot of emotional and physical demands, especially as more people start having sex after high school, so I think it’s a good thing that you figured out what’s going on and are starting to seek treatment – even just the fact that you’re posting here is an amazing thing!
If there’s one thing you should know, it’s that you are FAR from alone in terms of suffering from vaginismus. It’s been hard to get a good sense of how much of the general population has suffered from it because there’s so much shame and guilt around admitting it, but even these forums can show you that there have been countless other women who have walked ahead of you on the path you’re on and figured out ways of curing themselves and seeking healing, which I hope is a comfort to you.
It sounds like you’ve been reading about some of the forms of treatment, which is great. I personally had the botox treatment, which is explained in much detail elsewhere on this site but which primarily involves being put under anesthesia, having your vagina injected with botox to keep the muscles from spasming, waking up with a large dilator inside you, and continuing to dilate after the procedure as you work towards (and in 92% of cases succeed in having!) intercourse. There are a lot of ways people end up treating vaginismus, although dilating of some kind of most successful treatment plans. It’s excellent that you’re seeing a physical therapist; I hope that’s helping a lot.
I think the most promising thing you said is that you’re working on not pushing yourself to have sex when you don’t want to and saying “no” when necessary. That’s something that’s hard for all kinds of women, even those who don’t suffer from vaginismus, and is an incredibly valuable skill worth learning. Vaginismus is a very emotional experience, and learning to deal with the emotional aspects and build up your self worth again is part of the struggle. I think you are off to a great start, and we’re here to help you reach your goals however we can!
Hi Gemma, and welcome to the forums! Good for you for joining – it’s can be a really scary thing to do but seeking answers is the first step for sure. And I’m so sorry for your experience with vaginismus – it sounds like the exact combination of frustration and sadness I felt at 19, with a loving partner but no way to give him the sex life we both wanted.
The fact that you’re working with (and able to use) dilators is huge! It means you’re well on your way to being able to have sex. The key to dilating successfully and seeing results is consistency. You’re right – it’s HARD to want to do this challenging thing every day! That’s why it helps not to treat it as something you feel deep motivation to do but as a habit or chore you do every day, like brushing your teeth. Even if you just try to dilate for 5 minutes every day, you’ll be better off than if you do it a few times a week intermittently. The muscles will get more used to stretching and also you’ll better be able to assess your progress. If you can find a little sliver of time to do it every day (especially if it’s the SAME time every day) you’ll just treat it like another thing to do every day rather than having to talk yourself into it.
As you get further along with your dilating, another thing that can help is including your boyfriend in the process. You can start by having him watch you put in a dilator, then by having him hold it with you as you insert it, and finally by having him insert it himself – this lets you get more comfortable with ceding some of the control to your partner, which to a degree is necessary in sex.
As for the botox procedure, it’s what I had because I wasn’t able to insert a dilator – you can read a lot about it on the Maze website, but basically what it entails is that you’re put to sleep under anesthesia, botox is injected into your vagina to curb the spasming of the muscles that make your vagina so tight, and then a large dilator is inserted and left in until you wake up and feel/see it inside you. For many of us this is the first time we’ve ever had something inside of us, so it helps make the connection that our vaginas aren’t broken and we just need to work to get used to penetration.
Botox is great for people who can’t insert anything or who feel like they can’t progress sufficiently with dilators. In your case I would recommend trying to dilate more consistently first to see if you can make progress that way – especially since that the post-botox treatment plan is to dilate everyday! But botox is always an option if you feel stuck.
You’ve already been really brave in sharing your story and beginning to tackle this, so remember that as you pursue whatever option for treatment suits you best. And celebrate your achievements along the way (a new dilator, less pain, etc.) – this is a journey and it happens one step at a time!
Hi. I just need to clarify, that Botox injections alone is not very helpful. In fact, if that is all that is done, you may end up more hopeless than you started.
The way we do the Botox procedure is to manually relax the spasm, complete an exam, inject Botox and a short term numbing agent, and then INSERT A LARGE DILATOR, in order to keep the muscles from having another spasm until the Botox kicks in. All of this is done under conscious sedation so your anxiety is not a factor. We then teach you how to work through the next few months. We have not had to re-inject any patients. It kills me when I hear about practices that merely inject Botox and send you home. That would be like doing knee surgery and not giving you follow-up PT instructions and after-care procedures.
Topical lydocaine should not be harmful at all if prescribed by your physician, but in our experience it is not effective either.
Good luck to you.
Following up post-baby: I did it! He was 9lbs and had a head circumference in the 97th percentile, and the only meds/assistance I had was a partial dose of lidocaine injected st the entry muscles after I was running out of energy to push (first time mom…30 hour labor starting after the work day…I remember exhaustion way more than any pain or discomfort). I didn’t even require stitches afterward. Totally doable, and I loved the experience.
I saw a pelvic floor physical therapist a few times during pregnancy, which was helpful in boosting my confidence for labor and knowing which exercises to do instead of just doing standard kegels. Also, the lidocaine at the end was a brilliant move by my midwife…I’d pushed for 6 hours, and his head was out after one push once she gave me just a tiny bit of lidocaine injected into the right spot.
All that just to say, if anyone wants an unmedicated birth post-vaginismus, it is totally doable (and our sex life has been WAY better since).
