Feeling hopeless post botox – could use some advice.

[StaciMyer]

Hello – I had never been able to use a tampon and finally after 2 years of trying I saw an OB at age 14 who did not diagnose my vaginismus and did a hymenotomy on me under anesthesia. The OBGYN said my anatomy was 100% normal. Hymenotomy did not fix the problem. 3 years later after much concern and frustration with tampons — I met a wonderful caring boyfriend and after dating for a year we attempted sex and it did not work due to me having pain with entry, we tried multiple times, ended in tears and embarrassment and so much frustration. I figured out my problem by reading online about vaginismus and found a pelvic floor physical therapist near my home. She is very fun, caring and told me she had this problem herself when she was younger.
After 2 months of pelvic floor physical therapy things were progressing very slowly — with continual pain and frustration with even the smallest dilators. I had read about Maze and felt so ready, anxious and excited to try your program. My boyfriend was wonderful and supportive but I just wanted it resolved so so badly. I worked extra shifts at work to save up the money to see a board certified OBGYN in my state who offers this procedure– since I live in New Mexico and could not get to Maze – especially during a pandemic. The OB injected 150 units of botox, inserted a large dilator under light sedation, and sent me on my way. I am now three weeks from having this done and initially I had no difficulty using the smallest dilator — and felt so happy and hopeful. I kept thinking about how botox takes 2 weeks to set in so things would only get easier. However — this was not the case — on attempt to progress to larger ones it feels just as painful as prior to the botox. The middle sized dilator goes in with some pain on entry — takes me at least 20-30 minutes and I have to lie in a certain position and do deep breathing. This is about where I was prior to the botox. so now I feel even more hopeless — so am I the 2% where the botox does not work? If pelvic floor physical therapy doesn’t work and botox doesn’t work — I am so afraid I will have to live with this forever. It is causing daily stress in my relationship — not because my boyfriend isn’t supportive but I Just feel so awful about myself and for him. I’m devastated. I also have seen very few failure stories after botox — which is wonderful — nobody should have to live with this –but I’m just really depressed. I have no prior depression/anxiety/medical issues. I seem to have primary vaginismus for no reason. It’s weighing on me night and day because I always assumed if conventional therapy didn’t work — the botox would save me. So now I am feeling super hopeless. Thanks for your advice.

[Helen Leff, LCSW]

Hi Staci,
I hear your frustration, confusion, and “hopelessness”. I do not believe that this is a hopeless situation and I applaud all that you have been doing. Perhaps some things need to be tweaked: What is your dilation protocol? Are you sleeping with any of the dilators? Are you currently getting Pelvic Floor PT which may be very helpful while the Botox is active…. The Botox breaks up the muscle spasms but it is consistent dilation that is key to overcoming vaginismus.
Don’t give up!!!
Keep us posted,
Helen

[mazemelissa]

I agree with Helen, finding a PT that can help you while the botox is working is a great idea.

If you were able to have the large dilator inserted after the procedure, I believe that you can work back up to it.

I would try to move the smaller dilators side to side and in and out for stretching.

I also recommend sleeping with dilators as well, sleep with a small size, and then in the morning after sleeping with the smaller size, try to move up to the next size in the series. Having the dilator inside the vagina overnight can really help move up to the next size in the morning.

[StaciMyer]

Thank you both so much for giving me hope. You are right that I think somehow I hoped/thought Botox would just solve it all instantly. In theory having the muscles relaxed seems to be a quick cure. However the more I have read on this forum – the more I see it takes a lot of work and sometimes for weeks to months. I need to keep working with the dilators and it’s not necessarily an overnight fix after the Botox. I am going to try your suggestions. I do have a pelvic floor physical therapist who I worked with before the Botox – I wasn’t sure it was helping but maybe you think it would help more now that the Botox is in there. Thanks for your help. Also do you think 150 units is the correct amount of Botox for this procedure? Thanks again for being supportive.

[mazemelissa]

Yes…150 units of Botox is a correct dosage.

We use 100 units of Botox for our procedures.

So you received more Botox than our standard protocol.

[recessivegenequeen]

Hi StaciMyer – don’t give up hope! I totally get how you’re feeling, but like you’ve seen on the forums, botox is an incredible tool to enable progress – but it’s not a magic overnight solution. What it does is ENABLE you to dilate when you might not have been able to before (which was absolutely the case with me when I got my botox treatment at Maze). Some people are able to make progress only through dilation, but for others, the botox makes it possible where it wasn’t even an option to insert ANYTHING before.

I think for me what was such a big breakthrough (and what I hope you will keep front of mind) was waking up from the anesthesia with the largest dilator inserted. What it showed me was that my vagina was physically able to be penetrated by large objects, even if I hadn’t done it before. Knowing it was POSSIBLE was what gave me hope – I was physically able, I just had to work up to being able to do it psychologically (and become accustomed to penetration while also stretching out my muscles).

What’s crucial with dilation is consistency – as Melissa told me after I first got botox, what matters most is dilating every day if possible, even if it’s for just a few minutes. Your muscles are still stretching and getting used to something being inside, so giving them that daily reinforcement makes a big difference. Sleeping with the dilators in is also great advice, as is making sure you’re getting truly adept at using a size before moving up to the next one – that means taking it out and putting it back in a few times, moving it around inside from side to side, etc. Doing what you can for yourself to make dilation a habit (even if it’s a tedious one) is good

It can be really tempting to hope that your vaginismus goes away immediately after getting botox (for many of us, after years of suffering and confusion), but your journey to healing will take how long it takes and you can’t rush your recovery. Some people take weeks to transition to intercourse after the procedure and others take months, but your path is your path, and you will get there in the end with consistent dilating and methods like physical therapy. Don’t lose hope – we know you can do it! Let us know how it goes as you change up your habits!

[StaciMyer]

Thank you all so much for taking the time to respond and give me hope. Means so much to talk to people who understand the emotions of having to deal with this problem! I hope and pray that someday soon I will be able to post a success story. IN the meantime I will keep going with the dilators and pelvic floor physical therapy. Thank you again.

[recessivegenequeen]

We’re so glad to hear it – I feel confident one day you will be sharing your success story! Let us know if you have any questions along the way, I’ve been there before and I know it’s a long road that requires support along the way.

[Svinkata]

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,

[mazemelissa]

Do you have fear or anxiety about inserting the dilators?

It sounds like you have a gynecologist who is willing to work with you. Do you feel comfortable bringing your dilators to her office and seeing if she can help you insert them. This can be very helpful, especially if you are having any fear about pushing the dilators in all the way.

The botox should be working to freeze the muscles, but you still need to dilate to lengthen and stretch the muscles.

You could also see if she can give you a little lidocaine to use at the vaginal entrance to numb the area a little bit, that can also help reduce the pain and discomfort with first insertion of the dilators.

[Anonymous]

I understand how disheartening it can be when treatments don’t bring the expected relief, and it’s tough to feel hopeless. It’s important to remember that everyone’s experience with botox and pelvic floor therapy can vary.