23 and vaginismus.

• Author
  Posts
• November 8, 2014 at 1:47 am #9296
  cfaye

  Participant

  I hate vaginismus. I cry every night because I can’t have sex.

  I can’t afford the surgery and I’m so frustrated because I am too scared to get a boyfriend because of this AWFUL condition.

  I could always insert tampons fine. I hate this so much. Please help me. I told my dad I need something done with my pelvic floor in New Hampshire and he asked “why can’t it be done here?” I’m not going to tell my dad that I need my vagina fixed. It’s too embarrassing.

  I’m so sorry. This is all over the place and I would have left a better, well thought out forum post but I’m crying as I type this.

  I hate dilators, I wake up and it hurts leaving it in.

  I want to crowd source funding but I don’t want to put a picture of myself on it.

  It’s not fair.

  November 8, 2014 at 3:54 pm #13509
  23years

  Participant

  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

  November 8, 2014 at 11:53 pm #13515
  cfaye

  Participant

  Thanks for the reply.

  I am in Canada and our government (universal) health insurance wont cover it because it’s out of country… and it’s too much paper work to even get it considered. I want to get a loan, but I can’t find any medical financing places that offer out of country elective surgeries over here.

  I went to a gynecologist and she diagnosed me with vaginismus, and I kind of figured that’s what it was before when I tried to have sex and get pap tests and failed. I thought it was just because I had a “small” vagina. She discharged me when I went to school, so I haven’t had “treatment” (which was barely anything to begin with) since then. I went to another OBGYN and he said something like Dr. Pacik’s procedure could potentially make it worse (somehow I doubt that), and I was annoyed because he said to use the dilators. I do. I have them. But this one size right now stings to sleep with it in and I can’t sit down properly.

  I want this procedure so badly but since no one knows what it’s like; it’s harder to get any positive support…even from my mum. And often times when I bring it up, I start crying and she gets mad at me. I keep telling her it’s not fair, but she doesn’t think it’s a priority because she says sex “is nothing special.” I usually get really mad at this point and say “well at least your vagina WORKS and can have sex.” I would rather kill myself then not be able to have this treated. I never go out to meet people or hang out with my guy friends because I don’t want anything to happen.

  I think about it on a nightly basis and how I don’t know how long it will take to have this procedure. I want it done within the next year, and I know it will improve how I feel after I get treated.

  I just wish I could do it right now.

  November 9, 2014 at 7:30 pm #13516
  Heather34

  Participant

  Hi cfaye. I am so, so very sorry you are currently going through this. Please know I am here for you and am sending you all my support. I thought and thought about further ways to talk to your mom and dad and put together a couple of letters that may help. I hope they help you so much.

  Letter to Mother
  

  Dear Mom:

  I want to share the following letter with you regarding personal things that I am currently going through. It is written from a person who has shared a similar experience and also includes testimonial from a mother:

  Heather’s Letter:

  Hi there. My name is Heather. I am writing to you to describe the condition of vaginismus and my own personal story in overcoming it. I suffered from primary vaginismus until the age of 34 (all through my 20s) and was cured in June of 2011 within 1 week of having Dr. Peter Pacik’s Botox Treatment Program in Manchester, NH. What is so difficult to understand for family members of women with vaginismus is just how hard it is to discuss openly. I have never been able to tell any of my family members even after being cured and I applaud your daughter for her bravery in doing just that. Here is my own personal story in overcoming vaginismus: I am currently 37 years old and happily married to a wonderful man. We’ve been together for 14 years total, including 8 years of marriage. For 11 years of our relationship, we were unable to have intercourse as I suffered from primary vaginismus. I was unable to tolerate any form of penetration (even a q-tip) due to the excruciating pain that it caused. I visited a gynecologist in 2008 and was diagnosed with vulvodynia / vaginismus. Thereafter, I tried several different treatments, including pelvic floor physical therapy and trying to insert dilators on my own while completing the work book from vaginismus.com. Both of these methods failed to work as I couldn’t relax enough to insert anything and, again, felt a significant amount of pain/burning sensation and a wall of resistance whenever I would try. This was incredibly frustrating for both my husband and I to experience. Furthermore, throughout the many years that I suffered with vaginismus, I was never able to have a pelvic examination by a gynecologist due to the aforementioned described pain/burning/resistance that occurred with each attempt. Vaginismus is a serious medical condition that prevented me from having even the most basic exam when it was medically necessary to do so. In May of 2011, my husband and I were researching vaginismus and found the website of Dr. Peter Pacik who was located in the state of NH. We thoroughly read his book and knew that we had finally found a doctor that both understood the condition of vaginismus and truly cared so much about his patients. We ended up meeting Dr. Pacik and I received his treatment in 2011. Within 1 week of this, my husband and I were able to have pain-free intercourse and since this time, I have never experienced any pain at all with any form of insertion. Furthermore, and so importantly, I am now able to successfully have gynecological exams and tests. My own personal story is a testament to how I overcame my 11 year struggle with severe pain in the form of vaginismus. I whole-heartedly know that if I hadn’t received this treatment, I would continue to suffer from vaginismus today. In closing, I want to reiterate to you how important this procedure was for me. I suffered for so many years of my life in silence with vaginismus and your daughter has suffered as well as it is such a difficult thing to discuss. I am entirely confident that this procedure is the only thing that could’ve ever cured my vaginismus and now we have a truly wonderful life and marriage free of this horrible condition.

  Mother’s Posts:

  11/25/13: “I am the Mom of a 19 year old daughter who is going to be treated by Dr. Pacik in December, 2013. She has been with the same young man for going on 4 years and has struggled with Vaginismus and related pain since age 17. She has tried numerous traditional treatments and therapies since that time with no success. As a parent, it is heart breaking to learn that your child struggles with any medical condition. Especially a condition that is shrouded in silence and so damaging to women and their partners’ self-esteem and healthy relationships. Both my husband and I are proud (and relieved) that our daughter had the courage to reach out for help. I am honored that she trusts me enough to be open and include me in her journey. I know how difficult it was for her and may be for many young women visiting this site today. Questions and stigmas abound: • I’m too young … • What’s wrong with me … • I can’t talk to anyone about this … • I’m not married … • I’m single … • What will my parents think of me ??? • How can I possibly follow a treatment plan when I am in college or high school ? • I’m struggling with depression and anxiety … The list goes on. I was shocked and saddened to read on Dr. Pacik’s and other sites about women who have suffered for years with no relief. Why is it that in a day and age when we are bombarded with Viagra and male enhancement information, that so little is said about female sexual dysfunction? I am sure that any of the women on this forum will tell you “do not wait!!!” You are stronger than you think and your family will want you whole and well too. We hope that our daughter will be a Dr. Pacik success story and will overcome this condition early in life before further negative impact sets in. Her – and your – sexual identity is a key part of a healthy adult life, self image, current and future relationships and your ability to be a mother one day. To Dr. Pacik and his team – I am so glad that our research led us to you. I can’t put into words how much I pray and hope that you can help our daughter be whole.”

  12/2/13: “So, how to talk to your Mom and Dad? Remember first and foremost two things: 1. This is a medical condition 2. Your parents LOVE you and want you whole and well You don’t have to be best friends with your parents to ask for help. I am a big believer in writing a letter to address difficult topics and then talking it through. I think heather’s suggestions of starting with a note and perhaps dr. pacik’s book are good ones. I believe you will find your parents more understanding and supportive than you think. They will NOT want you to suffer for years with a condition that effects your adult well being. Don’t be embarrassed. Seek help. As parents our goal is to raise children to be happy, healthy productive adults. They won’t want this to stand in your way anymore than we did. In fact, it is heart wrenching. Our involvement with our daughter’s treatment has been more of a process vs. one big dramatic disclosure. When younger, sHe had a lot of trouble with irregular periods. We have a pelvic health specialist gynecology practice near our home and she was treated there when she was 15 and 16. She has also had the same boyfriend since that time. She was very open the first two years of their relationship that she was not ready for sex. When she turned 17 things changed and my husband and I assumed that they were now sexually active. It was a short time thereafter that she asked to return to the doctor that treated her at the pelvic health center because she had questions. That was the beginning of her two year journey to dr. Pacik. Shortly after after visiting the doctor she told me that she was experiencing a lot of pain and that sex and vaginal exams were difficult or impossible. She shared that the doctor had diagnosed her with vulvar vestibulitis. Over the next almost two years she was prescribed topical and oral medications, physical therapy, etc. with no real progress. We also saw a cumulative effect on her confidence and mental well being. Her relationship went through some ups and downs. She was depressed and frustrated and we were concerned about the side effects of the medication she was being prescribed to treat her pain. Our daughter is a very private person and would not speak about her progress or lack thereof that often. Time passed quickly but it was clear that the current course of treatment wasn’t working. I found dr. Pacik researching on the Internet. The more I read, the more his treatment approach seemed like the answer and exactly what we hoped for. We contacted the office, My daughter filled out the forms and spoke to dr. Pacik and the date was set. You may hear a lot of things from you doctor(s) and parents: This will resolve itself in 2-3 months (the specialist) Maybe you are just not ready (dad) It will get better – it isn’t comfortable in the beginning (mom) Use lubricant … Use a different lubricant Try this topical medication … Now this one … Now that one Try antidepressants, neurological medications (lots of side effects) Physical therapy and so on No loving parent will want you caught up in this cycle. We want our daughter happy, healthy and cured – period. This is a medical issue and though it obviously involves sexuality it is not just about sex. We trust her choices and she has a strong moral compass. We are proud of her in every way now and always. If Dr. pacik’s program seems right for you, reach out. I believe your parents, like us will be relieved that you did and will support your treatment 100%. Good luck and if I can help or you want to talk to an understanding parent let me know.”

  12/17/13: “Today marks one week since my 19 year old daughter’s procedure with Dr. Pacik and his wonderful team. It is difficult to put into words but what a life affirming experience it was and continues to be! I am writing this update in the same thread as “Reaching Out to Young Women” so you can get a sense of what it is like to be accompanied by a parent vs. a spouse or significant other. Others have written at length about the actual procedure itself. Suffice it to say that my daughter (K) was treated with compassion, respect and dignity. By her choice, I was by K’s side throughout the pre-surgery exam, surgery, recovery and counseling/follow-up. In retrospect she realizes that what her imagination conjured up in anticipation, as is often the case in life, was much worse than reality. Dr. Pacik talked her through each phase of the process, helped ease her fears and administered medication when warranted. Once under anesthesia K has no recollection at all of her experience. She, like the other 250+ of Dr. Pacik’s patients, woke up with a #6 blue dilator in place. This is when the real healing began. The curtains were drawn back and we were introduced to a young married couple who struggled with vaginismus since their wedding night almost two years ago. We also were joined by a recovered vaginismus sufferer who was observing that day and collaborating with Dr. Pacik. Be sure to check out her blog http://www.myvaginsmustory.com. After a brief awkward moment or two, over the course of the next day and a half stories, laughter, frustrations and fears were shared. It was very helpful to K to hear from others who have the same condition. Both K and the other young woman treated were able to proceed immediately to #5 and #6 dilators the next day with minimal discomfort. In fact, K had very little discomfort after the procedure at all – just taking some Advil on day 1. Yay! She continues to make good progress and we are very hopeful that she will join Dr. Pacik’s success stories. For young women reading, I want to assure you that Dr. Pacik and his team checked with K every step of the way about her desires and whether or not she wanted me present for each step. I, of course, also told K that I would leave with zero hard feelings whenever she asked. This was her treatment and her recovery. I am honored that she chose to include me and know that we will remember the experience always. Although recovery from vaginismus is a journey and K has not arrived at the end point yet, she already seems so much lighter … as if a huge burden is lifting. I want to thank every member of Dr. Pacik’s team for the wonderful care they provided. You have my commitment that I will continue to advocate for increased awareness and understanding of vaginismus. It is time for the shroud of silence to be lifted. K is hopefully one of the lucky ones who will find resolution early in her adulthood. So many others are not so fortunate. This is a real tragedy when effective treatment is available. Once again, we cannot thank you enough.”
  Love,
  [cfaye]

  Letter to Father

  Dear Dad:

  I want to share the following letter with you regarding personal things that I am currently going through. It is written from a person who has shared a similar experience and also includes testimonial from a father:

  Heather’s Letter:

  Hi there. My name is Heather. I am writing to you to describe the condition of vaginismus and my own personal story in overcoming it. I suffered from primary vaginismus until the age of 34 (all through my 20s) and was cured in June of 2011 within 1 week of having Dr. Peter Pacik’s Botox Treatment Program in Manchester, NH. What is so difficult to understand for family members of women with vaginismus is just how hard it is to discuss openly. I have never been able to tell any of my family members even after being cured and I applaud your daughter for her bravery in doing just that. Here is my own personal story in overcoming vaginismus: I am currently 37 years old and happily married to a wonderful man. We’ve been together for 14 years total, including 8 years of marriage. For 11 years of our relationship, we were unable to have intercourse as I suffered from primary vaginismus. I was unable to tolerate any form of penetration (even a q-tip) due to the excruciating pain that it caused. I visited a gynecologist in 2008 and was diagnosed with vulvodynia / vaginismus. Thereafter, I tried several different treatments, including pelvic floor physical therapy and trying to insert dilators on my own while completing the work book from vaginismus.com. Both of these methods failed to work as I couldn’t relax enough to insert anything and, again, felt a significant amount of pain/burning sensation and a wall of resistance whenever I would try. This was incredibly frustrating for both my husband and I to experience. Furthermore, throughout the many years that I suffered with vaginismus, I was never able to have a pelvic examination by a gynecologist due to the aforementioned described pain/burning/resistance that occurred with each attempt. Vaginismus is a serious medical condition that prevented me from having even the most basic exam when it was medically necessary to do so. In May of 2011, my husband and I were researching vaginismus and found the website of Dr. Peter Pacik who was located in the state of NH. We thoroughly read his book and knew that we had finally found a doctor that both understood the condition of vaginismus and truly cared so much about his patients. We ended up meeting Dr. Pacik and I received his treatment in 2011. Within 1 week of this, my husband and I were able to have pain-free intercourse and since this time, I have never experienced any pain at all with any form of insertion. Furthermore, and so importantly, I am now able to successfully have gynecological exams and tests. My own personal story is a testament to how I overcame my 11 year struggle with severe pain in the form of vaginismus. I whole-heartedly know that if I hadn’t received this treatment, I would continue to suffer from vaginismus today. In closing, I want to reiterate to you how important this procedure was for me. I suffered for so many years of my life in silence with vaginismus and your daughter has suffered as well as it is such a difficult thing to discuss. I am entirely confident that this procedure is the only thing that could’ve ever cured my vaginismus and now we have a truly wonderful life and marriage free of this horrible condition.

  Father’s Post:
  
  “THE THINGS A FATHER WILL DO FOR THEIR CHILDREN My dear daughter had a problem , but it was a secret for years, she complained that she couldn’t use a Tampon, and everyone else could. What was wrong with me??? We took her to a world renowned Gyn, who performed a Hymenectomy and told her she was fine. She was told ” go get some help, see a Psychiatrist”!! We did and no results! She found a Psychologist who helped her somewhat , but not enough! My daughter decided to research her issues and found Vaginismus. She found her problem and opened up to me wife and I. We found Dr Peter Pacik and after multiple conversations and consults with my wife and I , and then with my daughter separately, off we were. I am in medicine as well, and in 30 years I have never met a man with the qualities Dr Pacik exhibited. He spoke to my daughter privately and in our presence , and I was asked to be present in the OR for support and to become educated on her problem. During the procedure , he explained every step to my daughter and educated me on what a burden she carried. Step by step my daughter was reassured “SHE WAS NORMAL”, normal anatomy, normal feelings and a very spastic vaginal muscle. He informed me of each injection of long acting lidocaine, the amount and location of Botox ( Dr. Pacik is the only physician with FDA approval for the use of Botox in treatment of Vaginismus). A dialator was placed from smallest to largest based on resistance! PROCEDURE COMPLETE! My daughter was taken to recovery where her care was just as exceptional. Upon awakening, her education and treatment continued. The counselor (Dr Pacik), began working with his patient, reassuring her of how well she did and how well she would continue to do. The discussions were intense and extremely detailed. THE THINGS A FATHER WILL DO FOR HIS DAUGHTER! Once we got beyond the snickers and jokes (mostly mine), I realized my daughter had a glow and or sparkle in her eye, I had not seen in a long time! I could see it was her self esteem and her self worth . After multiple self treatments with different dialators, my daughter knew she was like everyone else, she just needed that little extra intervention. I am a very sensitive man, sensitive to all people and their plights, however, my sensitivity reached new levels seeing my daughter’s eyes, her smile and her ability to open up to me , her father! My baby has a boyfriend who I give an abundance of credit to! Most boys would run, run to the next one, he understands and continues to show his support. I cant wait to meet him!! I have never seen a physician exhibit so much passion, warmth, understanding for his patients. His need to succeed , not for himself but for the young woman he sees is evident in the amount of time he spends, failure is not an option. Vaginismus, a term I have never heard, Ob/Gyn physicians so aware most are not, most do not know who treats Vaginismus. Vaginismus, as big as Erectile Dysfunction, and no one knows… WE MUST GET THE WORD OUT, ITS NOT JUST A DAUGHTER BUT SOMEONE’S MOTHER, OR GRANDMOTHER! THESE WOMEN DESERVE A CHANCE AS WELL Thank you Dr Pacik, and your amazing staff!!!!”

  Love,
  [cfaye]

  I hope these will help so much. Please, please know you have my support always!!!!

  November 10, 2014 at 12:40 am #13524
  cfaye

  Participant

  Thanks for that, but I’m not going to go down that route.

  I applied for an all-purpose loan through my bank. I may get shot if I am approved, but I don’t care. I’m getting this procedure done ASAP.

  November 12, 2014 at 12:49 pm #13526
  23years

  Participant

  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

  January 21, 2015 at 7:49 pm #13614
  cfaye

  Participant

  I had my procedure done on Jan 14 and it went swimmingly.

  Unfortunately for the daily log bit, my Microsoft word hates me and I am logging with pen and paper until I can type it up and send it along to Dr. Pacik.

  I also started my period right after the procedure (about two days after) so that slowed down the dilation process a bit for me because I didn’t like how it felt. But I am so glad to have had this treatment!!!!!!

  January 23, 2015 at 9:45 pm #13615
  ceegee

  Participant

  Wow congrats. Where in Canada are you? I’m in Toronto, and I also need this procedure done ASAP. How did the loan stuff work out? I’m concerned about the financial aspect.

  Do you actually mind if I send you a msg privately somewhere? You can find me on twitter @courtgilmour, or facebook.com/minxc

  January 25, 2015 at 7:24 am #13616
  Dr. Pacik

  Participant

  cfaye-It was a pleasure meeting you and working with you. Don’t worry about the daily log just send me a summary every so often. The daily log is mostly for you to help understand your progress and what needs to be done. With the progress you made during treatment I have little doubt you will achieve your goals. My best!

  February 1, 2015 at 2:18 pm #13622
  cfaye

  Participant

  CeeGee – I had a family member pay for it instead of getting a loan under my name. My dad paid, but he also did not want to have to discuss vaginas either. It’s always a good way to scare a dad! To answer you question, I am in Ontario also.

  And Dr. Pacik – thanks. I never really was a good student when it came to written homework. It is being done and I can comfortably wear #5 (glass) without it giving me the pain like the silicon one did before I had the procedure. I love the glass ones and the silicon ones are only used if I am dilating during a shower.

  February 2, 2015 at 8:50 am #13623
  Dr. Pacik

  Participant

  cfaye-You are a champion. Comfortable with the large #5 dilator after only two weeks is fabulous progress. Congratulations!
  It is smart to use the silicone dilators while showering.

  February 2, 2015 at 4:22 pm #13625
  cfaye

  Participant

  I don’t have anxiety, and the pain is mostly related to the burning of the muscles from stretching anyway. Usually during the initial insertion period I pull it out quickly because it takes me by surprise, but the second insertion is always fine and then I waddle around like a penguin for a few minutes until it situates itself.

  February 27, 2015 at 11:34 pm #13664
  cfaye

  Participant

  Things are going very well. I can use the biggest dilator with no issues. When I use #4 for the overnight, I often forget I have it in!

  February 28, 2015 at 6:55 am #13665
  Dr. Pacik

  Participant

  Fabulous. You are doing very well. If it is easier for you to communicate via the Forum you can certainly post your questions and thoughts here. This way others will better understand the post treatment course. Just indicate the length of time since your treatment. I am very happy for you.

  March 10, 2015 at 9:48 pm #13672
  cfaye

  Participant

  I went to my family doctor to renew my birth control pills the other day. That was fine, but they wanted to do a revamp of my history so I got the usual run down of questions, etc. My mum booked the appointment, and one of the things they would normally do is a pap-test, but because guidelines change here so often, one of the things that wasn’t required for me was a test. Now, I told the doctor what I had done, so I requested a speculum test, as I went prepared with a dilator. This [resident] doctor didn’t seem to know what vaginismus was, let alone how to pronounce it, so I probably came across really grumpy to her when I was having it done. (Makes me want to become an OBGYN)

  I took the dilator out right before we did the speculum test, but I had a full blown panic attack right before she tried to insert it. I instantly had a flashback from the previous two failed attempts, and that is what scared me. I also think because they are shaped differently than the dilators is another reason I was freaked out. The only time I’ve ever had a speculum used on me was when Dr. Pacik was performing my procedure.

  The speculum test turned out to be fine in the end, because I didn’t feel it go in.

  I am not the least bit pleased about how ignorant some people can be when it comes to this condition. So upsetting.