Awaiting January 20th.

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• January 11, 2014 at 4:01 pm #9089
  zenely

  Participant

  Hi Everyone,

  I’ve had this condition for five years now and have been very silent about it to other people. The only people who have known have been my husband and my parents. I just recently got married this past September to the guy I’ve dated for nearly six years. A couple days before my wedding I confided into my best friend about what’s been going on. They have all been very supportive, but I’m just not an open book so writing even this is difficult. I think it’s difficult to talk about when at times you yourself don’t even understand why. Also, I’m a believer in keeping the personal topic of sex between you and your significant other and not flaunting such things openly. But then this happened.

  My story begins with starting college and falling in love with a boy. Up until that point and with past relationships I was contemplating whether I would wait until marriage to have sex or if once I found the right guy I would just let it happen. Then I met my husband and six months into our relationship all those thoughts started fighting each other. Needless to say, the latter won out. It was worth it for me and everything was fine for our first year of sexual activity. Then, at one of my checkups, the doctor told me my periods were too irregular and should be regulated with birth control. Young and not knowing any better and thinking they were pretty wonky myself, I agreed (plus double win for birth control’s actual purpose and actual knowing when said period would happen). That’s where things went bad.

  They put me on microgestin(sp?) which made me have my period every two weeks.. so they switched me to Ocella. That’s when the pain with intercourse started. They told me to wait it out three months and that it was just a symptom that needed to work itself out. It didn’t. I saw my first OBGYN and he told me I had Vestibulitis, gave me a steroid cream and switched my birth control to Sprintec. Didn’t work. He then told me my only option was surgery. That terrified me. I researched on my own, stopped taking birth control in hopes it’d get out of my system and I’d be better, and subsequently saw at least 4 different OBGYN’s over the next five years, being re-diagnosed between vestibulitis, vulvodynia, vaginismus, undergoing numerous treatments that even I have lost track of. Everything from steroids, estrogen cream, hormone therapy, gabapentin and other pills, physical therapy, dilation, and everything they could throw at me aside from surgery. None of it worked. I had times where I just gave up for a couple months. Needless to say it’s been a very frustrating ordeal and financially devastating as well.

  My current OBGYN finally ran out of options and told me there was nothing more he could do for me. I continued to do my own research; every year new things would pop up online and that’s how I eventually stumbled upon Dr. Pacik’s treatment. It has been the only treatment that has truly made since to me and I feel like this could be my cure. It’s honestly my final hope as of right now. I had discussed with my current OBGYN the concept of botox injections and he thought it sounded plausible even though he hadn’t heard of it being used to treat this condition before but was not comfortable doing it himself. I got in touch with Dr. Pacik’s office, talked to him and members of his staff and after discussing it with my husband and figuring out how to pay for it, we made the appointment. January 20th.

  My husband has been there from the beginning and it’s been tough on him as well, but our relationship has reached a strength where we’re certain we could make it through anything. I want to be able to consummate our marriage. I want to be able to have a family. One of the hardest things going through this is the thought that I’ll never be able to have kids and be a mother. This is such a tough thing to go through and knowing that there’s women out there that have had this for much longer than I have (which seems impossible and unreal) just makes it more difficult.

  I think I’ve gone through every emotion possible to a human being because of this. I’m looking forward to the 20th and even though I’m nervous, I’m also oddly confident that this will work and everything will be worth it. I’ve read through others’ posts and so far the confidence is staying, so we shall see.

  January 11, 2014 at 6:41 pm #12360
  Doodles

  Participant

  Hi, Zenely! I just joined this evening. I haven’t even posted my introduction yet, but I saw yours and just wanted to thank you for sharing your personal journey. There was a lot that resonated. I tend to be on the shy side myself and have been a little hesitant and nervous about writing something. Your willingness to open up has inspired me to do the same. I am really excited for you that your appointment is right around the corner. I agree with you: the posts on the forum are great and have made me feel pretty optimistic (for the 1st time in 20 years) that this pathway might actually work. Good luck!!!

  P.S. I live in Manchester and will probably add something to the Jan/Feb 2014 posting to offer some restaurant recs.

  January 12, 2014 at 12:26 am #12361
  zenely

  Participant

  Hi Doodles! After I wrote that post a lot of the fear of revealing “the deep dark secret” went away and once I saw someone had replied to it, the rest of the cloud went away, so thank you! I hope you find the courage to write your own story on here as well.

  January 12, 2014 at 11:20 am #12362
  Nakitalab

  Participant

  Hi Zenely, Thank you for sharing your story. I am so sorry for all the pain you have been going through. I am 53 years old and suffered with Vaginismus all of my teenage/adult married (31+ years) life until I had the procedure October 2012. Like you, I too had every treatment under the sun with no success. What a blessing it was when I stumbled across Dr. Pacik’s website and this Forum. You couldn’t find a more empathetic, understanding team who truly understands Vaginismus and all the mental and physical struggles that we women are/have gone through. I’m so excited for your upcoming procedure. Please know that we are all here for you to share your ups, your downs, your anxieties, questions and successes!

  January 12, 2014 at 8:06 pm #12366
  Heather34

  Participant

  Hi Zenely. Welcome to the Forum and thank you for your post. I am so, so sorry for your struggles with vaginismus and I am so very happy that you have found this Forum and Dr. Pacik and that you will be treated coming up next Monday. This is beyond wonderful and will be so life-changing for both you and your husband. I suffered with primary vaginismus for several years and, like you wrote in your post, had such a hard time being open about this with others. The only people who knew were my husband for obvious reasons and the doctors and clinicians that we visited. I also tried just so many treatments, including buying dilators and trying to insert them on my own to no avail (couldn’t even insert a q-tip) and pelvic floor PT. I failed at PT because I couldn’t relax enough to insert anything and every single time I tried, it still felt like I was hitting a wall and it would not budge. I found out about Dr. Pacik from a post in a yahoo forum on vaginismus and thought why not give it a try. I had my procedure in June of 2011 and was able to make love to my husband for the first time on July 4, 2011 (best 4th of July ever)!!!! I believe what made this treatment work for me when the other ones didn’t were so many things – waking up from the procedure with the dilator already in place; practicing with the dilators for 2 days in NH; comprehensive counseling in NH; very important post-procedure follow-up and communication with Dr. Pacik; and knowing and really feeling how much Dr. Pacik and all of the staff care about you and your success and how much they know about the condition itself. Also, after receiving the Botox injections, the resistance/”hitting a wall” feeling that my husband and I had always felt when we tried to insert both dilators and him was now gone and we were able to do both. I am so, so very happy that you have found this treatment and I know it will go GREAT for you and, as I wrote above, be very, very life-changing. Please know that we are all here for you throughout your journey of overcoming and this WILL happen! Sending hugs and positive thoughts your way!!!!

  January 12, 2014 at 8:07 pm #12367
  Heather34

  Participant

  Hi Doodles. Welcome to the Forum and thank you for your post. I am so glad you have found Dr. Pacik and this Forum and please know that we are all here to support you. I live in Boston so we are technically neighbors or at least live relatively close. My husband and I frequent AHL games in Manchester and love seeing the Monarchs up there. I am so happy to read “the posts on the forum are great and have made me feel pretty optimistic (for the 1st time in 20 years) that this pathway might actually work.” This is so wonderful and please do have this hope. I suffered with primary vaginismus for as long as I can remember – all of my 20s and into my early 30s which included my entire 11-year relationship/5-year marriage. I didn’t learn about Dr. Pacik until 2009 and then didn’t receive treatment until June of 2011. We tried close to everything prior to this (i.e. dilating on my own to no avail, pelvic floor PT, etc.) and nothing worked. The combination of so many different factors (i.e. waking up with dilator in place; dilator training; sex counseling; amazing and lengthy follow-up period; and the care, support, and knowledge from Dr. Pacik and all of his staff) made this work when everything else failed for us and we were able to make love for the very first time on July 4, 2011. Another thing that truly helped me to overcome is the blocked/hitting a wall feeling that always made even inserting a q-tip entirely impossible went away following receiving the Botox injections. With this, my hubby and I noticed that without the usual resistance, we could insert the dilators of varying sizes as well as him and also pain-free. I, again, am so very happy that you have found Dr. Pacik, this treatment, and the Forum and please know you have all of our support!!!!

  January 14, 2014 at 1:02 pm #12377
  Heather34

  Participant

  Hi Doodles. In a prior thread about visiting Manchester, the following exchange took place:

  Becca:
  I have to say, I am SO EXCITED to eat at the Mr. Mac’s Macaroni and Cheese. One of my coworkers when on a trip to the area last year and posted a picture of the restaurant and I was so jealous (mac and cheese is my favorite food ever), but I never imagined I would be making a trip to that area anytime soon – little did I know! 🙂

  I’m also wondering how much free time did you have on the 2-3 days when you were having your procedure/dilating/counseling at the clinic?

  Heather:
  OMG! What a great place. I just read a Yelp review of it:

  “Super duper awesome. This is definitely a mac ‘n’ cheese lover’s heaven.
  With so many different varieties to choose from (not to mention you can “build your own” dish) I had a tough time deciding. I finally went for the Lobstah Mac, and my husband opted for the Cajun Mac. Seating is open, and one of the staff brings your order to your table. Food came out in about 5 minutes.
  Both were excellent – mine was chock full of lobster meat and gooey, melty cheese, and my husband’s (also super cheesy) had a nice spicy heat to it. You can tell the cheese is a higher quality. Yum yum.
  Choosing size can be tricky. I should have listened to the other reviewers who said the Small is plenty. It is! They have example pans behind the counter that illustrate the diameter, but appear to be very shallow (this is where we were misled). So we went with the Medium. The actual pans are deeper, meaning much more macaroni goodness than expected. We could only eat half, but the plus side is we got to enjoy our meals again as leftovers (never a bad thing!).
  Something I thought was pretty cool and forward-thinking was that they had the styrofoam containers right out on a counter, along with napkins, plastic forks, basically everything you need to take home your leftovers. They also offer take-and-bake meals to cook at home.”

  Concerning the timing, on day 1 – procedure day, my hubby and I were in the clinic from early morning (7-8ish) through early afternoon (1-2ish). We then left the clinic and I had the purple (medium sized) silicone dilator in place. This did not hurt but just felt strange on our hour drive home. I felt better sitting on the right side of my butt and reclining the seat in my car. Then, on day 2, I was up there from around the same time (7-8ish) through early afternoon (1-2ish). On day 2, I practiced with all of the dilators and we had comprehensive counseling with Dr. P and Ellen about all aspects of vaginismus, dilating, anxiety, tips for transitioning, life after vaginismus, and so many more topics. It was such a great experience and I found it to be so important in my journey of overcoming. I remember actually taking notes and using these tips when I got home and was dilating on my own and then in transitioning with my husband. I did not return to the office on day 3 nor did my roommate. Some patients do decide to return on the morning of day 3 for additional support with the dilators and this is really decided on a case by case basis and whether Dr. Pacik and Ellen and the staff think it would be beneficial. Hope this helps and I now want to try Mr. Mac’s so bad the next time we are in Manchester. We actually go up there off and on for AHL hockey games and I told my husband that we will have to try this place as we both LOVE mac and cheese and it just sounds so good!!!!

  Doodles, have you tried Mr. Mac’s in Manchester? We are heading up there in February to meet up with friends and see the Monarchs and this sounds like such a great place to all try together. Also, as we live very close to one another, I wanted to let you know that I would definitely be available to meet you for coffee and talk if you ever wanted to do this together (we could exchange e-mails through Janet Pacik). As I wrote to you above, I suffered with primary vaginismus all of my 20s and into my early 30s before being cured in June of 2011.

  Sending hugs to you and Zenely both!!!

  January 19, 2014 at 12:32 am #12400
  zenely

  Participant

  Thanks Heather and Nakita! Sorry for the late response, my week has been pretty crazy. I’m getting more nervous as the days count down, but we fly out tomorrow! That Mr. Mac’s sounds amazing. Mac and Cheese was always one of my comfort foods. Hopefully we’ll have a chance to try it while we’re over there.

  January 19, 2014 at 10:12 pm #12405
  Heather34

  Participant

  Hi Zenely. I wanted to let you know that I am thinking and praying for you and I know everything will go very, very well tomorrow! You are in excellent care with Dr. Pacik, Janet Pacik, Ellen, Cynthia, and all of the amazing staff! Sending huge hugs!!!!

  January 20, 2014 at 10:23 pm #12412
  zenely

  Participant

  Thanks Heather! I think it went smoothly. I’ve started another thread detailing my day in hopes it might help others: http://www.vaginismusmd.com/vaginismus-md-forum/?mingleforumaction=viewtopic&t=766 All the posts I read prior to my treatment were just introductions, when they were finally able to have pain-free sex, and then whenever someone got pregnant/had a baby. Those posts are great and definitely reassuring, but there isn’t anything to actually detail all the work and struggles that could happen post-treatment. I would have liked to read those day by day posts just to ease my mind and know it’s normal to feel this or experience that. Let others know they aren’t alone in whatever aspect they’re currently dealing with or might deal with in the future. For some reason I just have the need to share even though I’m not very open about it usually.

  January 21, 2014 at 3:10 pm #12416
  Heather34

  Participant

  Huge, huge CONGRATS on having your procedure Zenely!!!! I think your day-by-day journal idea is excellent and it will help many to be more prepared post-procedure. :):):)