I just dont know what to do with myself

[lesoc]

(Appropriate for the title but it came to mind because I also love the White Stripes http://www.youtube.com/watch?v=Snyxh8PtYkQ)

I don’t post much on the forums because I am neither a former patient nor solidly prospective – it’s been a year now since my ‘second mom’ found this treatment from all her post-retirement TV viewing 🙂 At the time I had a year of school left but I figured with this second degree I’d make much better money than before… turns out much better = $1.50 more an hour. I had hoped to travel up to get the procedure done sometime this year, but it hasn’t quite worked out so well so far, obviously :-\

My primary care doctor said she would refer me to a doctor that does the same thing in our area – I know that not all drs are created equal, of course, but I thought I could at least speak with him and see how he approached it. Well, that never materialized, and instead I was referred to a different practice. I just met with her a week ago, taking off work an hour early for yet another medical appt. I was the last appt of the day at 3:30, but I wasn’t seen until past 4:30. Sitting in an exam room undressed for an hour does nothing to diminish anxiety, as some of you likely well know. Just as a side/background/etc. note, I have dealt with vaginismus for about 9 years now, having seen maybe 8-10 drs and been officially diagnosed only with VVS/vulvodynia until now, as I have noted in past posts.

She was quite nice and knowledgeable, and certainly by far the best experience I have had thus far, relatively speaking. Despite that, I guess for me it felt sort of like ‘too little, too late.’ The doctor said she would have to perform a pelvic exam, saying “Well some patients come in and go ‘You need to do a pelvic exam?!’ Uh yeah of course I do!” Which, yes, that seems logical ma’am, but most of us have wicked anxiety and do not want to be touched down there, so of course there’s panic when you drop a pelvic exam on us. My hands had marks from where my nails dug in and I had to use all I had to not cry or throw up.

She did confirm that I have spastic muscles, the ones on the sides of the vagina (i.e. 3 and 9 o’clock), and that I was very tight. Since the practice I was referred to is primarily urology, I asked if they treated many other patients like myself. She said there were plenty, and I clarified that I was asking if I was an outlier, meaning do they have patients specifically with vaginismus that they have treated successfully. She said I was not alone in this and that it wasn’t in my head, I wasn’t crazy – which, while always good to hear haha, I am WELL aware of. Perhaps if I had seen this dr, say, 3 or 4 or 5 years ago, I’d have been happier…

The end result was that she referred me to a physical therapy practice for biofeedback and pelvic floor PT (the latter of which I already tried, and my former PT was actually one of the therapists on the list she gave me, heh. As another aside, The practice that was highly recommended listed a website in the packet she gave me, when I got home, the URL gave me a 404 error – meaning, the URL points to something that doesn’t exist! I had to google the practice to find their actual website. Being in IT myself, I know websites often move, but they almost always at least redirect to the new one for awhile. I was rather put off that they couldn’t keep their info up to date.). She cautioned me that it wouldn’t be cured in one visit, and that we were looking for “improvement” and not necessarily a cure. She scheduled a follow-up appt for me… 6 months from now. “You’ll have a schedule with the physical therapy, so we’ll give you time to do that, and if in 6 months it’s not working or improving, we’ll look at other options.” And yes, I use quotation marks for exact (well, nearly) quotes. A follow-up in 6 months and if it’s not working by then… what?! And what precisely is “improvement”? Sex only hurts sometimes? Every other time? Every time but not as much? To me, there is not really room for middle ground here. Especially having read these forums and both of Dr. Pacik’s sites, I don’t think I can go for anything less than a true cure.

Although I would most definitely never question that the procedure is worth it, I guess I am scared because I’ve been pretty poor since college and I’m not really swimming in it now either. I just had to buy a ‘new’ car because mine kicked the bucket about a year sooner than I’d have liked. I also now have over $25k in student loans after my second trip to college. Work contributes nothing to the health insurance at my tier, so I opted out of the $450/month plan they have.

That being said, I am tired of being broken and sad. It has ruined countless relationships before and I do not wish the same fate for this one (he is very supportive but I don’t want to take it for granted). I would welcome any advice or kind words, as I have been very distressed this past week.

[arose]

Hi Lesoc,

thanks for sharing…

I understand what you mean about wanting to make sure the treatment is definately going to work… we too put it off for a year or so because of the costs involved (particularly so for us having to fly from the UK for it too) – in the end we were fortunately able to take out a loan to afford it, but it is a huge risk and commitment when you have little spare cash… I’ve struggled with the condition for over 5 years now, and a month after the procedure we were able for the first time to have intercourse! We still have some way to go to make it easier and more relaxed and enjoyable (we’ve only been able to do it in the last couple of weeks), but before it was completely impossible, so we have really gotten over the highest hurdle, and I have confidence that things will only now get easier, given time and practice. So I can’t guarantee that it will definately work for you, and for me at least it wasn’t an instant fix procudure, but Dr Pacik seems to suggest that the success rate is pretty solid as long as the patient is committed to the programme, and it has been the only treatment that has actually worked for us, so I have absolutely no regrets about it despite the financial costs. You may, however, want to consider when the right time is for you to go. It’s essential that you are able to dilate for two hours a day too, so obviously with it being such a financial commitment you want to ensure that you are able to commit emotionally and practically to ensure success.

Best of luck as you consider your options.

[Hansen09]

I know what you mean! I feel your frustration! I find that putting my frustrations on here make it easier for me. I instantly have replies of people who feel the exact same way. Only problem is that I have no money for this procedure and no one can really fix that. It honestly makes me mad that money is the only thing keeping me from fixing it. I don’t know where you live or how old you are but, if you are in the US and under the age of 26 (I think) you can get insurance through your parents(if that even helps). That is what I am having to do. Next step is to save up, get a loan, or ask the people close to you for the rest of the cost. After reading so many other peoples stories and seeing what some other women have had to go through…I felt that this was my best and only option to be free from Vaginismus. Just the thought of going to sleep and waking up with already overcoming one of my worst fears…priceless. Being able to have sex with my husband and children one day is worth every cent to me. It may take some time to get the money but….honestly I see no other option for myself. I hope others give you good advice so that you can have a little comfort in knowing that you are not the only one who feels this way. Who knows, maybe you might meet someone on here (maybe me) and end up having the same procedure date so that you can do a road trip up there together to save costs! There are so many possibilities! My best advice that I can personally give is to just keep flushing the negative thoughts away and keep telling yourself that with perseverance you can and WILL overcome this (that’s what I do)! Anyways, I hope that gives you some encouragement and that you will keep up the good fight 🙂

[rachel]

I hear you frustrations loud and clear. We were in debt when we found Dr Paciks treatment and it was a tough decision to make. However, we decided to combine the trip for treatment with a mini holiday and we decided that the treatment was more important than the debt. I am over 2 years post botox and I do not regret going for the treatment. I still am paying off debt, as it seems that society keeps us indebt one way or another. Many people opt to go for IVF treatment because it becomes their only option to have a baby of their own. They don’t want the high costs and debt, but they follow it through because they know some things in life are more important. However, I do think you maybe need to cost everything out for your trip and work on a debt plan now for paying if off when you return home. We live in Canada and at the end of the year we were able to get some of the money back on tax. If you live in some parts of the USA, it covers it on some insurance plans. Another plan would be a loan that you have to pay back. What do you do for a job? Is there any chance of overtime? Seriously…if you remain without treatment you will probably find that you will end up throwing money away at counsellors with no results…i went through that for years. I was 11 years living with vaginismus and I came to a point where I knew that I needed to take drastic action. When it starts to affect your mental health…trust me it is not fun. I could have lost everything if I hadn’t got cured.

Is there anyway you could fundraise the money for yourself?? Over here they have parties where they raise money for honeymoons…i guess you could tell people you are raising money for a gynecological procedure. Most people won’t enquire into what the procedure it is when you say gynecological. Just a thought. Maybe everyone on this website needs to club together and start some fundraiser activities. That way we could have a fund ready for people like yourself who are struggling.

Well, I hope you know that you are not alone and I hope our words have helped to raise your spirits a little. Please keep on fighting because it is worth it in the end!

[lesoc]

Unfortunately I turned 26 this year. At one time in the past my father offered to put me on his insurance again, and that was the last I heard of that. Another unfortunately, the people who I would consider telling and that would probably chip in some, are all not doing well financially themselves. My grandmother is stuck with my late uncle’s house that she can’t sell, and she is very ill. My mother just had surgeries herself, is on disability, was officially fired from her job, lost her home, and my MIL that found the treatment offered to pay for it… til she heard the cost, lol. She has her 90 yr old aunt living with her to help pay for stuff. My dad and my grandfather have plenty of money but they’re assholes 🙂 I don’t really have anyone else I’d feel comfortable telling, or asking for money, especially.

I just have wasted so much time and money on failed treatments, that I don’t feel comfortable with more prolonged uncertainty. I wish I’d saved the probably $2000+ I’ve spent in the past 5 or 6 years! I even had affordable insurance that covers the procedure, but lost it when I quit my job to go back to school. Just one of those things where you can’t do anything about it, but it still sucks. I have never expected any instant fixes, it’s fine if it takes time, but I’ve felt like a guinea pig for almost 9 years now. Or a human dartboard – throw a treatment at me and see what sticks! lol. For me, failure is not an option. I cannot and do not envision my life without overcoming this. So, there’s that 🙂 Thank you for your encouragement and support.

[lesoc]

Quote:

Quote from rachel on September 10, 2012, 16:27
I hear you frustrations loud and clear. We were in debt when we found Dr Paciks treatment and it was a tough decision to make. However, we decided to combine the trip for treatment with a mini holiday and we decided that the treatment was more important than the debt. I am over 2 years post botox and I do not regret going for the treatment. I still am paying off debt, as it seems that society keeps us indebt one way or another. Many people opt to go for IVF treatment because it becomes their only option to have a baby of their own. They don’t want the high costs and debt, but they follow it through because they know some things in life are more important. However, I do think you maybe need to cost everything out for your trip and work on a debt plan now for paying if off when you return home. We live in Canada and at the end of the year we were able to get some of the money back on tax. If you live in some parts of the USA, it covers it on some insurance plans. Another plan would be a loan that you have to pay back. What do you do for a job? Is there any chance of overtime? Seriously…if you remain without treatment you will probably find that you will end up throwing money away at counsellors with no results…i went through that for years. I was 11 years living with vaginismus and I came to a point where I knew that I needed to take drastic action. When it starts to affect your mental health…trust me it is not fun. I could have lost everything if I hadn’t got cured.

Is there anyway you could fundraise the money for yourself?? Over here they have parties where they raise money for honeymoons…i guess you could tell people you are raising money for a gynecological procedure. Most people won’t enquire into what the procedure it is when you say gynecological. Just a thought. Maybe everyone on this website needs to club together and start some fundraiser activities. That way we could have a fund ready for people like yourself who are struggling.

Yes I do have a number of friends in Canada so I have heard of those parties 🙂 I don’t live near my family or any of my old friends though. It’s about $500 for a plane from here to CA so I can’t see too many people showing up haha.

Overtime is an option, it’s a good idea (not trying to say it isn’t!) but part of the problem lately is my job. Since going full time, it has been the biggest source of stress in my life bar none. As in serious mental and physical health issues, and relationship issues. I try to put in extra hours when I feel up to it, but I truly need the time away. My only hope is that with our company’s growth I will get placed into a position that utilizes my strengths instead of aggravating my weaknesses. Despite my appearance I’m usually a pretty positive person but it’s been a bit rough this summer. Thank you again. The latest fad that I see on Facebook is my friends doing all these *runs* for things… I hate running but I hate vaginismus more. Maybe time to buy some running shoes!

[Heather34]

Hi Lesoc. You wrote “for me, failure is not an option…I cannot and do not envision my life without overcoming this.” You have come such a far way and overcome so, so much and you WILL overcome vaginismus! I’m sending you my best wishes for your procedure coming up on Tuesday. I know it is going to go so, so well and you are going to do wonderful!!!

[lesoc]

Thanks Heather, I am looking forward to it and I am glad the time has already gone so quickly 🙂 It will be a new beginning for everyone there and for this Election Day it’s time to vote vaginismus out of office for good!

[Nakitalab]

Hi Lesoc, I just wanted to let you know that I have been thinking of you and have been and will keep you in my prayers for your procedure next Tuesday. Dr. Pacik and his team are the kindest most compassionate medical professionals that I have ever come across and Ive been through many over the last 32+ years. They are truly a blessing to all of us who have suffered with vaginismus! And I’m with you…we need to spread the word and vote vaginismus out of office for good! :0)

[Diana]

Hi Lesoc. I just want to wish you the best of lucks on your procedure, you will soon find out that it will be one of the best decisions of your life! I think that we all, women with vaginismus, have been through so many obstacles that at the end of this journey, you will find yourself as a stronger woman, one that is capable to inspire and help others despite anything else that could be going on with our lives! Please keep us posted and don’t forget that we are here!

[lesoc]

Thanks a lot guys, it’s super close now and besides being excited I think I will most enjoy the *relief*–like I’ve been holding my breath for what, 8 or 9 years now, and I can finally exhale and be content. I should probably start packing my bike shorts! xD

[Nakitalab]

I wanted to let the women who are having their procedures tomorrow know that you are in my thoughts and prayers and that I’m here for you as you begin this wonderful new journey of healing!

[Nakitalab]

Hi lesoc, I just wanted you to know that I have been thinking of you and the other two gals alot this week and hope that you are doing well. Can’t wait to hear from you when you feel up to it!