Treatment Elsewhere

[21withV]

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 💓💜

[Sks823]

21withV – I did go to Maze for vaginismus treatment, but I don’t have experience with the Botox procedure so I’ll let someone else with more relevant experience help, but I’ll do my best with what I can help with :).

I just wanted to give you a shout-out for getting treatment on your own and at 21 years old – that’s amazing! It seems like you have gotten far in your treatment and you seem super determined, so I wouldn’t at all be discouraged by the first attempt. You *DID* make progress; getting to the 3rd dilator (even if not all the way in) is definitely progress.

To answer your “schedule” question, from some of the other posts, I read that daily dilating is a good idea beginning right after the procedure. Some questions and tips from Maze staff about post-procedure dilation are here:

http://mazewomenshealth.com/forums/topic/post-procedure-dilatation/

As for having trouble moving up in size, Cathleen writes: “What you need to do is go back to a size that you can fit in, and work with that dilator. After using that dilator, go up in a size and just keep working with it. If you can just get the tip in that’s ok. The next time, after dilating with the smaller one, try to use that dilator again, see if you can get in a few mm more.”

Seems like as general rules, posts say: consistent (daily if possible, even if only 10-15 min.) dilating is key, and when you feel pretty comfortable with a dilator, try to move up in size – even if you can’t get it all the way in. Always dilate with the previous size before trying the next one.

I think going to your PT the first few days after Botox might be a good idea to make sure you’re getting some help dilating… also, since I read that waking up with the largest dilator inside is a key component of Maze’s procedure, if your gyn can do that I would DEFINITELY say to do it!

Also, I know from my experience that coconut oil as lube with dilators helped me a LOT!

I know that you’ll get over your vaginismus – we’re all here for you and there are endless tips & lots of support on these forums!

[21withV]

Thank you so much for your thoughtful response and for the encouragement! I always appreciate it. I agree that PT would be best after the Botox treatment. Thank you for your tips on dilating. I definitely know it’s something I should still be working on in the meantime, even if I’m impatient with the results. And thank you for the link as well! I’m curious to see what others have to say! Best of luck to you!

[recessivegenequeen]

21withV – first off, I want to reiterate what Sks823 said and congratulate you on being so young and taking control of your vaginismus! I figured out my vaginismus situation when I was 21 and it took me until 25 to get treatment. It’s hard, but you’re facing it, and that’s an amazing step to take!

I’m so sorry to hear about your first botox procedure not working the way you wanted it to – I know that must have been incredibly frustrating for you. I received the botox procedure at Maze so I can speak pretty knowledgeably to what it’s like and what about it worked. I think if your doctor is willing to insert the largest dilator while you are anesthetized, that is going to be a HUGE part of your progress. It’s funny because I read about the procedure extensively before receiving it, and one part that really stood out to me was that so many women had said something to the effect of “Waking up with that large dilator inside me caused me to realize that my vagina was normal and perfectly capable of being penetrated.” I read this so many times and effectively knew it was going to happen but even so, when it happened to ME, I was so surprised by how true it felt. I think this part of the treatment is SO key. The knowledge that your vagina is capable of being occupied by the largest dilator is a cold hard piece of logic you can hold up to your brain to prove it wrong when it tries to tell you you’re trapped and that you’ll always be like this. Your brain is wrong about that, and this is the proof.

As for a dilation schedule: DAILY! This is so important, as is getting started with dilating immediately after getting the botox. The botox is helpful for several reasons, but it’s not a silver bullet – it’s doing its best work when it aids you in doing the daily work of dilating. And believe me, I know that it’s work. But you’re putting in effort now for huge rewards later in the form of peace of mind and a less complicated sex life.

Please do keep coming back if you have questions – we are so happy to help and encourage. You’ve shown a lot of nerve so far and I know you are capable of putting vaginismus behind you once you can get a good treatment that works for you!

[Freya.a]

Hi I have also faced a similar problem.I am 32 years old married and have been suffering from vaginismus for 8 years. I have tried dilators on and off throughout the years and was never able to get to the larger sized dilators..Two months earlier I flew to another country to get BOTOX done.I did not have the resources to attempt botox earlier nor was it available in my cou try.I asked my gunaecologist if I had to follow it up with dilators and she said that it wasn’t required and I could directly attempt intercourse. Unfortunately i have not been able to have penetrative intercourse with my husband.I have definitely been able to progress with my dilators.It is not pain free but less painful than earlier.I am thinking of getting the procedure done again. And this time I am going to buy the pacik glass dilators to follow up with BOTOX therapy. Does anyone know the schedule of dilator therapy following botox.How long do u keep it in for and what size do u need to use?

[Heliopsis]

Hi Freya,
I am impressed by the progress and your determination to go through it again! I’ve not been treated at MAZE and I’ve not used the botox treatment so I will not comment on it. I think Dr. Pacik has a paragraph in his book about progressive dilation. The title of his book is: “When Sex Seems Impossible: Stories of Vaginismus & How You Can Achieve Intimacy” you can buy it for example on amazon. I think he recommends to use them twice a day and for up to 2 h additionally sleeping every other night with the medium one as soon as you get to the one. If I understood correctly. I am very interested how many different approaches there are in dilating, so I bought his book – I found it is a very interesting approach.
In the UK were I am treated, without Botox – they recommend to insert the dilator for 5 minutes every day and starting with the smallest one than going up to the next size when the first one is not painful anymore and goes in without much waiting. It took me almost two years to get to the biggest size like that. Than they recommend to insert each size together with your partner (doing that once a week). If that is successful and pain free they move on to a phase which is called containment were the woman is on top of her partner – who needs to get an erection and the woman lowers herself down for only a centimeter at the time – involving no movement and thrusting.
I suppose thats not what you wanted to know and I hope someone else with Botox treatment at Maze will give you better advice!!! Don’t loose your courage! All the very Best for you! Keep going! I hope you will feel better soon!

[Freya.a]

Thank you so much for the reply heliopsis. Any kind of feedback is amazing so thanks a ton.I think I should just make sure to use the dilators at least once on a daily basis.It gets really frustrating at times and i have not always been very punctual with the dilators.It is interesting to note that there are different methods of dilation therapy.I am glad to know that it is working out for you.All the best and thank you so much for putting in the effort to reply

[Cathleen Kneidl, RPA-C]

Hi Freya.a
A combination of the botox procedure and dilation is definitely more effective than botox alone. I am unclear how long ago you had the procedure done, but the botox is out of your system in about 6 months. If it has been more than 6 months, it might make sense to repeat the botox procedure and then work with those dilators. Initially we have patients doing an hour or 2 of dilation a day, and gradually reduce that time over a couple of months. Everybody is different, and we work with patients to develop the best individual dilation schedule. But most importantly, consistency is key!

[Heliopsis]

Hi Freya.a,
you are very welcome! I know doing the dilating everyday is very hard. It interferes so much with life! I had to travel so much work related and it delayed my progress enormously. But eventually it did pay off for me and it will for you!!! I am 33 and I had two starts in dilating one time like 6? years ago, at the end I gave up – my relationship broke – and than I picked it up again two years ago (motivated by having a new partner and I finally wanted to get it all sorted…) – and I just made it finally to the last one :-). But you are right at the beginning I could not imagine that the biggest one would get in pain-free and it really just started to get better, after using the biggest one now for 5-6? month. It still feels like it stretches a lot. I was for a long time very frustrated not progressing anywhere. I keep my fingers crossed for you and hope you will progress better than I did!!!

[recessivegenequeen]

Hi Freya.a! I’m sorry to hear about your lack of success with the initial botox procedure – I can imagine how frustrating it must have been to attempt intercourse without success. There’s a lot of good advice here already on dilating, and I would especially reinforce the point about dilating every day – even if you only do it for 5 minutes, being consistent with daily practice is what will help you see progress over time. I would also encourage you to resist the urge to put yourself on a timetable of when to move up between dilators too strictly. Ultimately the best time to move up a size is when your body feels ready – when you can insert, remove, and wiggle around while inside you a dilator without hardly any discomfort. Some sizes you’ll move through quickly and others might take longer, but your long-term comfort with penetration will be a lot more stable if you don’t rush yourself to get to the end before you’re ready!

[Sks823]

Freya.a,

Congrats on some success with the procedure and dilating. I’d say dilating once a day (even if just for a bit, but 10-15min is ideal) is a good idea – even though it’s tough to find the motivation and time sometimes.

As for tips with dilating, I’d say to be consistent and don’t get discouraged even if you’re not moving as quickly through the dilators as you’d like! I went at a slow and steady pace with the dilators and it worked for me.

Watching TV while dilating also helped me relax a bit and not solely concentrate on the dilating/pain. When I moved up in dilator size and had discomfort, I would do deep breathing exercises and insert it for the first time veeeeeeeeeery slowly, which caused little to no discomfort. Once I got it in (and moved it side-to-side and up and down), it was much easier for me to take it out and re-insert it at a faster pace. Inserting and re-inserting the dilators a few times definitely helps get used to the feeling (in my opinion more useful than just leaving it in for a while).

Also, I’ve tried a couple different lubricants and I like coconut oil the best. Don’t forget to use as much lubricant as you need!

LASTLY, you can consider buying a vibrator to use concurrently to help you with some discomfort. 🙂

Good luck & keep us updated!

[Sks823]

Also, Heliopsis – so glad to hear you started up dilating again and are having so much success with it 😀

[21withV]

Freya.a,

I have also had the procedure a second time now, with the same doctor (not at the Maze Clinic) and it has been very successful. I have been able to have sex and dilating is going wonderfully. If you are thinking of doing the procedure with a doctor outside of the maze clinic like I did, bring in one of Dr. Pacik’s clinical articles and ask them to replicate the procedure. Doing it the second time around and waking up with the dilator has made more difference for me than the Botox I believe, though it has given me an extra boost. My doctor was great and was very intrigued by Dr. Pacik’s methods and followed it to a tee. I don’t think Botox by itself is really enough if you haven’t had a lot of success dilating prior to getting the injections. If you have any questions please let me know.