[23years]

Hi
I’m 23 years….and counting. (Question Mark?) Why do I say this? I spent 23 years with the Big V and went to Dr Pacik in June 2014. Botox treatments complete. I’m cured right?
Wrong.
Wrong? Yes. Botox– was it the answer? Yes!
Cured magically? No.

Have I been able to use dilators without pain? Yup! Intercourse without pain? Yes.
But cured? What is our definition of that word?

Life came along, stress came full force, dilation backed off, sex was less…… BAM! The wall came back.
But……. BUT? But dilation, practice, repeat….

Does a body builder go to a gym and build muscles in a day? No.
Does a weight watchers dieter lose their weight overnight? Nope!

What do they do? Change their lifestyle. Practice. Exercise. Rinse. Repeat.

Well, hopefully you get the picture. (Smile)

Having the Big V sucks. No doubt about it. It’s frustrating as heck to not “just be normal”.
Changing a lifestyle is hard. Anything we do in life that’s worth anything? It’s a journey, hard work, and absolutely worth it!

Can a person that’s overweight take a magic pill? The commercials want you to believe it. But they can’t.
Can a person that wants to build muscle do so by going to the gym once a week? Nope. They’d love to!!

But some people can lose weight quicker than others. Some people are genetically coded to have or build muscle quicker than others. But that doesn’t mean that the rest can’t be as good or better! It just might take a different set of circumstances.

So….. My point: can anyone just get Botox and dilate and get to a point of having pain free intercourse– in three days, two weeks or even a month? Not everyone will get there in exactly the same ways. Setbacks are inevitable and no one sits in anyone else’s bedroom so no one knows REALLY what is going on there do they?

YOU have come SO far. YOU have the power to overcome. YOU have control over your body. YOU can do this and YOU will do this in your own time in your own way. But DON’T YOU beat yourself up. Be kind to yourself. Know that YOU can take time to get there. It’s not a race. You are entitled to get frustrated. Slam your fist into a pillow, yell at the world. Scream at the top of your lungs if you have to….. But ….

Then, hold your head up high, take a moment, you are stronger than you think. Start from where you can, take baby steps, two step forwards, one step back, three steps forward, one step back…. Doesn’t matter. It’s no one else’s journey. It’s YOURS. And I believe and have faith with training, will power, resolve, you will get there.

I’m sending positive thoughts in your direction.

Remember, us Women? We ROCK!!!

[23years]

Hugs!
Forever in my thoughts and heart
23 years

[23years]

Your story made me want to cry. This IS a lonely condition. But you found the right place. I had the Big V for 23 years. Just had the Botox in June 2014. Yes, it does work.

I’m sorry that your marriage has suffered and we all do. Our partners are powerless and of course cannot know how it feels. It breaks down your self esteem. I just wish not one more couple, not one more person, would have to deal with this condition. It’s NOT okay…

That being said, the treatment is not cost-prohibitive. Insurance companies are covering some of the costs. Women have traveled internationally to obtain treatment with Dr Pacik.

Keep talking this out and you will find a way….a way to overcome, like a lot of us here.

Hugs to you,
23 years

[23years]

First for Women
Family Circle
Prevention
Fitness (they claim their mission statement is to assist women in mind, body and spirit)
Good Housekeeping
Health

Just to name a few as you asked (smile)
Thoughts: get the writers guidelines for 3-4 magazines that may accept your article.
Send a query to the publisher (a letter) stating your article idea, how long you intend it to be, whether you will interview anyone, if there will be photos etc and then wait for them to reply and see what they say. Once they reply (you can wait awhile), you will see what they like or don’t about your idea and then you can send another query to several magazines refining your idea, etc and work out the details if your idea gets accepted.

If I had the time I would do this and also pick up a copy of each magazine I want to query to see the styles most prevelant in them.

Let me know if you need editing help! I am an amateur writer myself I just can’t devote any time to this at the moment for leg work but would be happy to be your proofreader and editor!!

Best of luck!! Great idea!
23 years

[23years]

I caught something you wrote and am on my phone so I won’t copy and paste but you stated you wore a dilator all night AND all day? Perhaps you are wearing them too long? I will let Dr Pacik comment and of course he is getting your logs. I would get sore in the early days and I used the cream Dr Pacik recommended. I also may have used the surgical lube a bit longer than recommended too. But I wonder if you are getting dry and therefore irritated from friction inside from moving or walking because you are wearing them too long?

I would double check with Dr Pacik but it sounds like stretching muscle and perhaps a little fatigued…

Wishing you lots of luck on your journey! You WILL overcome!!
My best
23 years

[23years]

I like the suggestion to keep the sexual part out and talk about the menses issues and GYN exam. That’s great. It would make it a lot less emotional, even if I had to discuss (which frankly I didn’t have to worry about as I care for my dad with dementia so no worries there). Although, he was saavy enough to ask me why in Gods name did I have to go to New Hampshire of all places to have “surgery” and wanted to know what hospital! I side stepped the answer but I just said I had a chronic pelvic pain disorder and that it was a study being done, etc. Luckily he probably lost me at “I” but in all seriousness, I have used the “chronic pelvic pain” disorder when explaining to irrelevant individuals and I don’t tend to get too many questions after that… I don’t really mention Botox because then might get the looks… I think most still see Botox as the “wrinkle reducer”.

I do like the talking about the condition from a functional perspective with parents on other life issues like menses or GYN exams. If a parent tends to be more religious or uptight or in denial then it allows them that “out”…

Thankfully I’m the type of mom that never wants my daughter to feel uncomfortable talking to me about her body. Yet, she’s only 7 so I will get back to you all later if that changes!

SMILE

[23years]

It’s been 23 years for me, post Botox, and I STILL CRY sometimes when talking about it….I’m going to be brutally honest. This condition punches you in the gut! And if its not enough that the condition punches you in the gut, most of us have been hypothetically punched over and over and over again by ignorant comments, statements, situations and medical authorities! It’s no wonder this condition is SO misunderstood.

On top of it, sad but true, women’s health care in the USA is sub-par at best. For example: a woman can walk into an ER, talk about neck pain, funny feigns in their head, strange sensations, say “something feels wrong”, and a slew of excuses may be made like “you just had a new baby, it’s your feeding position, maybe you have anxiety, etc. When really you are having a dissection of a major artery in your neck! OR, you could complain of severe stomach pain, nausea, etc FOR A YEAR with it getting worse and a doctor may look at you going “it’s anxiety, you are getting married”. Then your liver functions go wack and finally your diagnosed with gallbladder disease. Both true stories. I’ve seen this and more. The fact is, if you are a man, tests are run, etiology of problems are discovered.

If you are a woman, too often, you are over exaggerating, emotional, anxious and depressed. Well “DUH??” Who wouldn’t be depressed when they are having real medical issues that aren’t being treated? Being under treated? Being mistreated? Like what came first? It’s a vicious cycle and the world sadly is still run mostly by men (no offense Dr Pacik you know you rock)…but you also know there is an element of truth.

Call me jaded or call me cynical. But this has been my experience.

I guess in the end what I’m doing is validating all of you and sharing my open honest feedback.

This forum ROCKS because it allows each of us to be straightforward, get support, obtain medical expert guidance (yup that’s you Dr Pacik) and it is one of very few places each of us can feel safe. At least I do. I know spoken word never can replace face to face and can sometimes be misunderstood but at least we have one another and not misguided and misconceived persons.

Everyone on this forum deserves to be “whole” whatever that means for each of us. No one should have to deal with a life long complicated disorder of body/mind and I only say “mind” because there is a HUGE mind body connection. With every chronic condition.

Hugs to all~

[23years]

This has me baffled. I will be honest. And I don’t have any personal experience with what you describe “post procedure”. You say that just since the procedure you are clenching and tightening your muscles like all the time not just during dilation? This is extremely puzzling. This must be more psychological. So I think relaxation techniques are definitely needed here.

That being said, everything is easier said than done. So I would practice this in baby steps. Try hard to use visualization techniques like some of the advice from Heather. Make yourself tighten and relax your muscles at will and then release, until you have more control.

I think a lot of women, including myself, speak about libido and desire as to the aspects of “I haven’t caught up to where my body is physically” but I can only speak for myself. There is a HUGE psychological component to this disorder. However, that being said, ANY CHRONIC pain disorder or any chronic long term physical issue WILL result in a cycle that is hard to break. So even though there is a huge psychological component, no one should make the mistake of believing its “all in our heads”. Because it isn’t.

I hope you can begin working on these muscle clenching issues you are having slowly and that you start to see some progress. Keep us posted as to how you are doing.

Take care!

[23years]

This sounds so familiar. I was 23 when I was diagnosed. Tried the Oxalate diet too after mailing 24 hour urine to Denver to a biochemist who timed my Oxalate supplementation based upon my body’s creation of Oxalate. That didn’t work. Tried 10mg of Elavil and after six months, my pain was less but never gone. I still don’t wear jeans and sitting on couches, edge of chairs, used to hurt. I understand exactly what you mean!! But not anymore.

That was 23 years ago when my hell began! Back then I did not have an option! I only learned of Dr Pacik this year! And HE and his Botox IS the answer! I had my procedure June 30th and physically my body is better! I don’t get that burning uncomfortable feeling. I don’t have pain sitting. I can have pain free intercourse.

No longer should the “V” win. You are not powerless. There ARE answers. This is the solution.
Money is always an obstacle. It seems like a lot. I know. But people take loans out for cars, for homes, for recreational vehicles. We use credit cards for department stores. There is care credit, tax returns, private funds, credit cards, personal loans, etc etc. Where there is a will there is a way.

Your quality of life is dependent upon it. I know it seems insurmountable. But it’s not.

Please don’t give up. You deserve to be better and to overcome this awful condition!!

Hang in there and we are here for you!!

[23years]

The anesthesiologist that was in the treatment room with me during my June 30th procedure was wonderful with great bedside manner. Dr Pacik does nothing without talking to you EVERY step of the way. You don’t even know the moment you are out and it’s like blinking your eyes and its over. It’s that quick.

I was not afraid of needles or anesthesia before but I can tell you it’s one of the better experiences I’ve had!

[23years]

Don’t give up. We are here for you. Only you know your unique situation with your parents. I didn’t have a lot of support either. Your mothers comment about “not that special” is unfortunate. Try to understand that comment is coming from her own issues that have nothing to do with vaginismus. No matter what any of us personally feel psychologically, YOU have a RIGHT to feel “normal” (I hate that word as there is no such thing as normal) but you know what I mean. YOU have a right and a yearning to experience what everyone desires to experience without “the wall” literally and figuratively.

If I were independently wealthy I would pay for you. Because NO ONE should have to wonder, worry, wait or suffer with this condition. NO ONE.

Also just as an added note: my gynecologist of 23 years! He also had negative things to say about Dr Pacik and his treatment. Guess what? I went with my gut and my gut wasn’t wrong. Have faith and believe. Don’t let these “so called” experts of gynecology talk you out of it. You go for it! When you can.

We are here for you!
23 years

[23years]

I’m so sorry you are feeling this way. You are not alone and every single feeling I’ve had before. I was diagnosed at 23 and just had the surgery in June and I’m in my 40’s. I have spent WAY too long feeling those feelings. It’s not easy and yes it is embarrassing and unfair and you get sad and angry and depressed. We all do and have. Not many people truly understand but you have come to the right place. And Dr Pacik definitely understands as well as his staff.

I wish there was a way for everyone to get the treatment they needed without the expense. Care credit can help. Insurance companies are picking up some of the costs now. But it is an expense. If my daughter had a medical issue that was getting in the way of her quality of life, was making her sad or upset, I for sure would find a way to help her. When we have fear of shame and embarrassment, it can prevent us from opening up and sharing. Certainly I have no way of knowing your relationship with your dad but I think he would understand. I know it’s extremely difficult to talk to people about it. Dr P had to write a letter for me to even discuss with my clinicians. The day I was to go in and talk to my primary care MD, I was literally wanting to vomit. So I truly get it.

Maybe you could write your dad a letter or email or find a way to communicate what’s going on?
Again I’m sorry this is making you so sad. But we all get it here.

Things will be OK though — it will. You have found the right place and let me tell you for 100% certainty, it’s 1/2 the battle, just finding a solution. So don’t lose faith. Keep your chin up. And know we are all here for you~

23 years

[23years]

Ok. Phew! All this anticipation and nervous energy! Yup. We all get it. NORMAL!!

Dilating: you are going to be just fine. Dr P works with us. If we are doing well, we are set to go. If we are struggling, he gives us more one on one attention. He is never more than a phone call, email or Skype call away. No worries. Unlike other doctors, he cares and doesn’t ignore you or act disinterested if you are having difficulties. He works with you and responds to everyone on a very individual basis. You are going to be pleasantly surprised. Trust. Have faith.

My big (((hug))) and thoughts are with you! My procedure was June 30th and it didn’t take long for the transformation. It won’t for you either. But you have to go through it to believe it!!

You are going to rock this procedure!!

[23years]

Ok here I go “out on a limb”… Instead of the vag (that was a joke)..

I have gotten so good with the glass dilator #6 that I can insert it and “hold” it in there with thighs and God only knows whatever other muscles are there (well God…..and….Dr Pacik maybe ha ha!) long enough to go from bathroom to bed or up getting my seven year old something for the 50th time 30 minutes into dilating!

But on a kind of TMI funny note…

I was dilating an hour before anticipated “activity” and, while dilating, my hubby decides to put on this outrageously funny TV show. The kind that gets you roaring and feeling like you’ve just completed 100 sit-ups in 8.5 seconds?! And for the life of me it kept slipping out a bit and having to be repositioned. After about 20 minutes of this crazy shenanigans, I accidentally had a confused moment where I must have expelled air and it sounded like I had broken the glass dilator!! I went from laughing to horror! My mind raced with “How would I explain this to Dr Pacik in an email? To thoughts of “OMG! What if the “Venus Fly Trap” (aka, what I used to call my vagina) broke it and the big V was back?

Well obviously it was worry for naught and all was well in the Pacik Glass 6 department! Phew!

Now, THERE is a story from THIS dilating diva! Ha!

We ROCK!!

[23years]

Just curious

Did you smoke the plant or did you use Marinol, the pill form or synthetic version of this herb? It might make a difference to know this for some.

I’m no expert and certainly I’m more on par with you. I’ve never taken an illegal drug and drink very little. But I’m
curious to know if the synthetic version did this or the actual plant?

Whatever info you would feel safe sharing is welcomed

Thanks!

[Author]

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