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I had my procedure in June of 2017. I had never been able to even insert a finger, Q-tip, tampon, etc. and my husband could not penetrate me. The pain-fear cycle was so intense that attempting any insertion would nearly make me faint, but I kept desperately trying anyway.
I was very diligent with the dilators post-procedure, and was thrilled when we were able to begin having intercourse a couple of months later, and with only minimal discomfort (mostly just from certain positions or from thrusting). However, I still had to take things very slowly, maintain a lot of control, and could not find pleasure in any type of thrusting motion. I was thrilled to be able to have intercourse though and that I could even climax during it.
Fast forward a year and a half post-procedure, and I had my first child. I had a completely unmedicated birth (minus a tiny dose of lidocaine injected at the entry muscles after a long pushing phase to help those muscles relax for the final couple of pushes when I was running out of steam at the end). My son weighed 9lbs and had a head circumference in the 97th percentile at birth, and I was able to push him out without any hindrance from vaginismus! I was a bit concerned about secondary vaginismus, but my husband and I resumed intercourse as soon as I had clearance…and it has felt 10x more amazing for me than it did previously!! There is zero discomfort in any position or from any level of thrusting, I no longer have to be in control of insertion, and I am able to climax so much more easily now that things go so smoothly.I was so discouraged prior to the procedure. The procedure, follow-up support from Maze, and dilation enabled things that seemed completely out of reach after so much effort on my own.
I hope I can be an encouragement to others. And if anyone has a desire to have an unmedicated birth after vaginismus, it’s completely doable! I also met with a pelvic floor PT a few times during pregnancy, which was helpful to boost my confidence that I knew how to work those muscles for birth.
Topic: Treatment Elsewhere
Hi all,
I am 21 years old and found out about my diagnosis when I was 18. I went to PT for one year and tried to dilate on my own unsuccessfully with liquid and gel lidocaine and buckets of lube. I have also done talk therapy and yoga and massage. I’ve also had a laser treatment for vestibulitis as well. I have also had doctors tell me at age 18 to loosen up and drink wine (Oh what we go through to figure out our bodies!)
I recently underwent a Botox procedure under anesthesia a month and a half ago. It appears that the Botox has already worn off, and I waited too long to get started dilating due to fear of failure (ironic how that fear of failure actually brings about failure LOL). I moved up maybe to the 3rd dilator (Pure Romance set) but couldn’t get anything in further than 3 inches even when Botox was active. Now nothing will go in and the muscles are rock hard & I just end in tears with each session. I also feel myself clenching throughout the day and it seems to be a stress response (can anyone relate?!)
Anyway I will most likely be having this procedure again, but this time I will be asking my gyn to inject me with lidocaine, do progressive dilation, and wake up with the largest dilator inside. Is there a place I can find what the dilating schedule is like directly after the procedure? I’m wondering if my deeper muscles inside need Botox too? Do you ladies recommended that I go to my PT maybe the first few days after the Botox and the following weeks? I would love to do the MAZE procedure but can’t afford it on a college student’s budget when I live cross country, and my gyn has offered to do it much cheaper. If this procedure and plan doesn’t work, I think coming to MAZE will be my last resort 😪
Thanks for any help! Much love to everyone suffering through this trying issue 💓💜
Topic: Burning sensation
Hi there,
So I’m new to the forum and need a little guidance.
I’ve done Botox injections (not with Dr Pacik but here in Australia).
I am using the Femmax dilators (pink, rounded head) and am at size 3 (I think this is equivalent to a size 5 in the glass trainers).
So I’m almost there. I’ve been going to physio after surgery and this has been extremely helpful. She has gotten me to do active pull down stretches with each progressive size (that means put dilator in, contract muscles,big release and pull down). I’ve found this to be super helpful to stretch out the muscles as static dilation or just leaving it in there didn’t prepare me mentally enough.
I wanted to ask though, I’m now on size 3 so I’ll do the stretches with size 2 and insert 3. I’m now attempting to do the pull down stretches with 3 and although I can pull down, when th dilator comes back up, I start to feel this burning sensation and today just got painful so I took it out. I use olive oil for lubricant which has been great but need some tips/advice? Should I leave the size 3 in for longer before attempting the stretches?
Argh, this vabinismus thing can be a real pain sometimes…Hi all. I came across an absolutely awesome thread on Reddit that describes a women’s success story of overcoming vaginismus this past December with the Botox treatment program at Maze Women’s Sexual Health. It’s such a great thread to read:
https://www.reddit.com/r/vaginismus/comments/4dzjjm/botox_cured_my_vaginismus/
Excerpts include:
“For me, the experience was AMAZING! I wish I had done it earlier, but at the same time, I did it when I was ready, so I have no regrets. I went to a place in NY state, I’ll post the link below, and they were so kind and easy to talk to. It’s a day procedure, I live out of state so I stayed at a hotel the night before. The day of, we went to the place where they do the procedure, it’s like any basic medical thing, they get you ready, give you a gown, you pee in a cup, etc. The anesthesiologist comes in and gives you an IV, and then they put you under. While you’re under (about 30 minutes or so), they numb the area, give you a pap exam, and inject Botox into the muscles. Even though you’re under, they can see the muscles spasm or tighten and also if you have a hymen, they will cut it (this causes a small amount of bleeding, like you wear a pad for a couple of days, but no pain). For me, I woke up and the largest dilator from the Pure Romance set was inside of me. This was a huge thing because I hadn’t even been able to get the smallest one in on my own before. I was numb down there, so while they taught me to insert it in and out and all that, I couldn’t feel any discomfort. They did have to cut my hymen and there was some blood, nothing scary and no pain at all. They sent me home soon after with #4 inside. They want you to keep #4 in as much as possible, even sleep with it in that night. The numbness wore off around 8:00 that night, but it was still super easy to get the dilator in and out. It took me some time to find exactly the way to guide it in, the best way to sit or lay while doing that, but once I could do it, it was in within seconds and then I was fine. I went in the next day for a follow up, they do a basic exam, no inserting anything, just looking at the area and then talk more about dilation. They gave me a prescription for lube that has lidocaine in it, but I’ve barely used it. They give you a paper with info about dilation at home, they recommend trying to do it 30 minutes a day, I would do about 15 minutes with one size, then change to the next size up. Within 2 weeks I was using the largest dilator on it’s own without the need for a “warm up” and there was no pain, no resistance, that feeling of hitting a wall was completely gone.”
How can I overcome if I’m terrified of even the thought of dilators?
I was absolutely terrified of every aspect of dilating prior to my procedure with Dr. Pacik. In fact, because of this fear, I almost asked my husband to turn around on our trip up to NH. Until I went through with it, I just could never envision being successful with the dilators as I had never been able to even insert a q-tip. I couldn’t have been more wrong and was able to successfully dilate post-procedure. What helped me so much personally was waking up with the dilator in place and, later, being able to insert as I did not experience the normal wall of resistance that I always had as the Botox took effect.
Dr. Pacik addresses this very question as well and writes:
“Most women with severe vaginismus and severe painful sex are unable to use dilators on their own. During the treatment with Botox under anesthesia, a long acting anesthetic is injected so that the entire vagina is numbed for about eight to twelve hours. By the time the patient returns the next morning, having maintained a dilator for 24 hours, the vaginal muscles are sufficiently stretched that dilation to the larger dilators is easy and not painful. During this time a topical anesthetic is used to coat the dilator and this adds to the comfort of post procedure dilation. Later, patients are able to continue their dilation program easily without the need for topical anesthesia.”
Hi all. For those who may be considering having the Botox treatment program for vaginismus in the coming year, there is an excellent description of what the procedure is like on Maze Women’s Sexual Health website.
Excerpts include:
“The procedure is done at the Westchester Ambulatory Surgical Center in Purchase, NY, only 10 minutes from our Purchase office.
On procedure day, the patient is prepped for surgery and given an IV and placed in a hospital gown.
Once in the surgical suite, the patient is put under conscious sedation for the procedure which takes approximately 20 minutes. Once the patient is under anesthesia, a full pelvic exam is performed and a pap test is obtained if indicated. Next, dilators are inserted into the vagina; this dilation starts the process of lengthening and relaxing the pelvic floor muscles. After the progressive vaginal dilation, a speculum is inserted and the injections begin. The botulinum toxin is first injected, a total of 100 units, into the tense muscles. The doctor then injects a local anesthetic in the vaginal walls and vaginal entrance. Once the injections are completed, the largest vaginal dilator is inserted. The patient awakens with the dilator in place. There is a recovery and rest period after the procedure. During that time the patient is taught to remove and re-insert the dilators, and she is sent home with the dilators and instructions. It takes 2-5 days for the botulinum toxin to take full effect so the patient is encouraged to continue to use the dilators as much as possible for the first few days. There is a follow-up visit the next day and an individualized follow up treatment plan is developed.”
Topic: How to Overcome Fear?
Dr. Pacik has written so many wonderful posts concerning conquering fear. One particular post that is a favorite includes the following:
“The fear of using dilators is perhaps one of the most common reasons women don’t think they can go through with the program. They need considerable reassurance and this is one of the major benefits of this Forum-to remove the unknown causing fear and replace this with reliable educational information. The fear of failing with dilators lingers after the treatment. Early on, it is all so strange but possible. Patience is important because with time it gets easier as the muscles are stretching and the Botox makes it impossible to go back into spasm. Even a few days of not dilating during menses is not a problem, one simply starts with a smaller dilator to get used to the dilation program once again. Now that the extreme fear and anxiety are abating, everything becomes easier”
Prior to my procedure, I was consumed with so many fears, including the fear of failing treatment because I was terrified of dilating post-procedure. In the past, I had ordered hard, plastic white dilators and tried so many times to insert them on my own with no success. Every single time, it felt like I was hitting a wall and caused excruciating pain and burning. How would I ever be able to use the dilators in this program if I wasn’t able to even insert the smallest one on my own after trying for years and years??? I seriously couldn’t have been more wrong and it took actually waking up from the procedure with a dilator inside of me to realize this. When I woke up with the largest blue dilator inside of me, this was the first time anything had successfully been inside of me period and I was in shock that it had worked, I wasn’t broken, and it didn’t hurt at all. Thereafter, with this knowledge and quite a bit of lidocaine/surgilube coating the dilators, I was able to insert the purple, pink, and largest blue right in and without the resistance and blocked wall feeling that I had always had. Now, the burning/pain/fear/wall was gone and this allowed both my husband and I to practice inserting, removing, and re-inserting all of the dilators pain-free. I delayed having the procedure b/c I was so afraid of this and then realized, after the fact, that it was entirely possible.
In an excellent recent success story that I read, it also discusses that overcoming fear is entirely possible with the right help and the right attitude.
Specifically, L, Age 29, wrote:
“I am a 28 year old who never had intercourse in her life. I’ve been this way always. I was afraid of the pain, and getting pregnant. I had been afraid that there was nothing anyone could do. At the last visit I made to my Gynecologist, he told me that it was all in my head…that I just needed to relax and it would happen. That made me feel worse because I knew it was not that easy for me to just let it happen. My boyfriend of 11 years, yes 11 years, was watching a show one day where they talked about many things including couples that were dating or were married for years and could never have sex. He told me about it and I started to cry. I thought I was the only one going through this, how selfish was I? After he went to bed I decided to Google more info about this other couples. After searching, I bumped into an article that talked about Vaginismus, a condition that does not allow you to have sexual intercourse. I was amazed about the number of women that were going through this. I was researching online for a place where I can find someone to talk to; a professional that could help me and my boyfriend get through this once and for all, and I found Maze Women’s Sexual Health. I felt weird right before I made the phone call, but at the same time I was extremely excited and hopeful to find a solution to this problem I was having. I was also a bit nervous on my first appointment, but everyone was so nice and friendly that I felt at ease right of way. Since the dilators didn’t work out very well for me. I decided to go for a more unconventional treatment. The botulinum toxin treatment was the best approach for me because it helped me overcome the fear of having something in my vagina.
The treatment went as follows:
They put me to under conscious anesthesia for a procedure that took about 15 to 20 min.After putting a topical anesthetic in my vaginal walls the doctor injected the area with botulinum toxin. After the muscles relaxed a large dilator was inserted and I woke up with it already inside. It was such an overwhelming experience waking up with the dilator inside of me. I felt accomplished.
Within a week and a half my boyfriend and I were able to have sex. It takes some getting used to. This is a new experience for me; for us. But we are working on it. I still follow up with the Nurse Practitioner, to see my progress. As for me, I feel amazing. I’m Happy. I feel like a woman.
Fear is a part of life. Lesson learned, you can get over it, with the right help and the right attitude, fear can be overcome. I would want other women to know that they should not let fear of the unknown control you. It’s never too late to search for help. I just wished I would’ve found out about my condition sooner.
Vaginismus is not something that people talk about. And if it wasn’t because of that show my boyfriend saw, I would’ve never done the research and I would’ve never looked for help.
It took me too long to figure out what I had was not all in my head. Don’t be afraid to get help. You are not alone.”
To the veterans reading this, how did you overcome your own fears pre-procedure? Any advice would be so helpful.