Getting the Word Out

[Heather34]

Hi ladies. Once I had my procedure with Dr. Pacik and was finally able to make love to my husband, after so many years of waiting and failed treatments, I wanted to shout it from the rooftops – “I’m cured.” It was just one of the best feelings in my entire life, as I’m certain it was for so many of you. Since then, I’ve tried very hard to get the word out there about the condition of vaginismus itself and Dr. Pacik’s treatment. Thus far, I’ve thought of advocacy through radio program, magazines, newspapers, journals, and reputable television programs (i.e. CNN, The Doctors, etc.). Together, if we can all help even one women to find this cure, then it will be a very, very good thing. Can you think of any further ideas for advocacy to spread the word?

[Amanda Miller]

I have suffered with vaginismus all my life. I have tried everything from physical therapy with bio feedback to counciling. I have so many failed attempts that i had given up. But after doing research online I found Dr.Pacik. Everything I read was amazing, and I felt like I fit all of the problems. I contacted the office and felt so wonderful. Within a short time Dr.Pacik called me and went over everything and to discuss this. I felt like this was a decision that I was ready to make. So on Dec.12,2011 my husband and myself flew to NH and I had this procedure done with Dr.Pacik.. The staff and office was wonderful and I finally felt like I wasn’t an outcast. After returning home day 8 my husband and I were able to finally make love which was something that. Never thought was going to happen. I felt like I had finally achieved something that I had given up on. My life has changed forever and I owe it to Dr.pacik and his staff for it.. If you arr struggling with this, you are not alone. Speak up and don’t be afraid there are people out there to help you. 🙂

[Heather34]

This is a truly wonderful story and my sincere congratulations on your tremendous success. Its stories like yours that make me just want to tell every other women in the world who is struggling with this all about vaginismus and that there is a real treatment program out there that works. I entirely agree with you that Dr. P and every one of his staff members make you feel welcome and never ever treat you like an “outcast” or freak as so many other clinicians who don’t understand vaginismus do. I love your statement “If you are struggling with this, you are not alone … speak up and don’t be afraid … there are people out there to help you.” Vaginismus itself can make you feel so, so isolated and you really do suffer with this condition in silence, often hiding it from even your closest family and friends. It’s so, so important to know that you are not alone with this and there really are people out there who CARE and will help you to overcome.

[Xynabu]

This is wonderful. Iam a vaginismus sufferer who cannot dilate, and i discovered botox treament online, i’m now searching for where to get treated in my country using botox injection. I think the medical community are not spreading words on vaginismus. Even many doctors do not understand. Doctor Pacik is wonderful not only because he cure vaginismus but he also create awareness. I think other doctors in other parts of the world should follow his steps and start the botox treatment of vag. Those of us living far from US cannot attend Dr. Pacik clinic.

[Heather34]

@Xy, you wrote “Dr. P is wonderful not only because he cured vaginismus, but also creates awareness … I think other doctors in other parts of the world should follow his steps and start the botox treatment of vag.” I loved your post and couldn’t agree with you more. The more that we all can spread the word about the actual condition of vaginismus and that there is a treatment program that works so well (botox w/progressive dilation), the more likely doctors will finally listen, learn about the condition in-depth, take it seriously, and offer the botox treatment in their home country.

[Dr. Pacik]

Thanks Ladies for your kind remarks. It is my intention not to make too many comments. This is YOUR forum, and I want the forum to be among the women. I do hear many times from women who are unable to travel to my clinic and I think a few words may be of help. I find that if a woman is unable to tolerate intercourse but is able to tolerate some penetration, they may be candidates for a dilator program without the Botox. Most of the time a woman is given, or orders, a set of dilators with minimal to no instruction. Once I work with someone by Skype or phone it is actually not that difficult. I would still need a completed questionnaire which can be requested through my office. For those women who have severe vaginismus and a complete inability for any form of penetration (Lamont level 5 vaginismus) these are the women who do better with the full Botox program because they often will not progress with physical therapy, dilators, talk therapy, etc. Hope this helps. Dr. P

[Xynabu]

Thank you very much doctor. Iam one of those sufferers who cannot even insert her finger. I screamed and cried when penetration is attempted, even some doctors find my behaviour annoying an intolerable. My present doctor is the only one who insist on helping me overcome this…. because i live in a place where access to sexual therapy is very limited. I lead my doctor to your website and he’s now making research on that. Doctor i want to say that you are a solution to this problem ‘vaginismus’.

[Dr. Pacik]

The concern I have is that simply injecting Botox into the spastic muscles without the knowledgeable support of dilator instruction and post procedure counseling is a set up for failure. I have treated a number of women who had Botox without support, and failed, some who have had more than one series of injections. Fill out the Contact Us form at http://www.vaginismusmd.com/contact/ and request a patient information questionnaire for vaginismus, and I will see how I can help you once this is completed. Dr. P.

[Heather34]

@Xy, welcome to the forum. I really enjoy reading your posts. I’m sorry that you’ve had bad experiences with some of your doctors. It can be so frustrating and humiliating when the condition is not understood. Your present doctor sounds wonderful and I’m so glad that you’re receiving the help you deserve. I also found it very inspiring when you wrote “I lead my doctor to your website and he’s now researching.” This is an excellent idea to spread the word about vaginismus and to educate doctors from all around the world. I would encourage all women to do this. I have discussed Dr. P and the treatment with every doctor that I’ve seen post-procedure. With one particular doctor, we actually pulled up his website, discussed the type of dilators used, and she was very excited about learning more about the treatment program. Excellent post and great ideas to keep spreading the word! I look forward to reading your posts.

[Diana]

Hello! I will be donating the book ‘When sex seems impossible’ by Dr. Pacik to my local library this week. I have read it throughly and have access to it online if I need to review it once more. I found it very inspiring and educating! I will be sending the book along with an explanation on why it is being sent, I hope I can see it there next time I visit. I think that when it comes to vaginismus and spreading the word, there is no such thing as a small contribution. Maybe some other girls out there can do the same once they have read it and have benefit from it. Let’s share the good news, vaginismus has a cure!!

[Heather34]

Hi Diana! I LOVE the idea of donating Dr. P’s book to the local library. This will help so many and is just a wonderful idea for all of us to also do!!!

[Janet Pacik]

The Women’s Initiative in Sexual Health (or, WISH) Initiative is a campaign to raise public awareness about the importance of female sexual health. Over a decade of prevalence studies have consistently shown that approximately 40% of women suffer from some form of sexual dysfunction, which is actually a higher incidence than what is reported in men. Yet, even though more women suffer from sexual dysfunction, most women do not seek treatment for it, and when they do seek treatment, their options are more limited than what is available for men.

An important component of the WISH Initiative is the WISH Petition. This is a grass roots petition that highlights the importance of women’s sexual health being recognized and valued, and that there would be continued research on finding treatment solutions for women, just as there have been for men.

With an aggressive goal of reaching 1 Million signatures, we need everyone to take a moment to SIGN IT! Please visit “Your Voice Your Wish” <https://www.yourvoiceyourwish.com/&gt; and voice your support to this important cause today. This is an important health issue that can no longer be ignored!

Dr. Peter T. Pacik fully agrees with the content of the ISSWSH position paper and officially endorse this statement. We hope that all the current 300 plus members of the VaginismusMD Forum will visit this site and sign today. For more information, please visit the VaginismusMD Blog “Women’s Sexual Health” <http://www.vaginismusmd.com/womens-sexual-health/&gt;

[Heather34]

This is an excellent blog and I have just signed the WISH petition. Here are some of my notes that correlate to their mission statement. Very exciting!!!

The etiology of female sexual problems is often complex.

It may include sexual medicine issues related to biological etiologies including:
o neurologic,
o hormonal,
o vascular and
o anatomic components

as well as psychological issues related to:
o socio-cultural,
o emotional,
o cognitive and
o relationship concerns

We advocate the development of safe and effective treatments, both biological and psychosocial-cultural in nature, for women who are suffering from these conditions.

– women deserve to have a variety of treatment options (Sidebar: I 100% agree with this. Every single vaginismus patient is different. I tried several treatment options, including PT, and was not successful. However, I had complete and total success within 1 week following Dr. Pacik’s Botox procedure for vaginismus. This was my best treatment method and the only one that worked after 15 years of trying and failing at other treatments.)

and

– for their voices to be heard (Sidebar: I read this as the physician/clinician listening when a patient says something is not working. For example, I tried physical therapy in the past and was unable to move beyond my anxiety to insert anything. Rather than listening to me, the PT kept saying statements “well if you just relax” when this was not possible for me to do).

In light of this, we call upon all the stakeholders, including government regulators, to move the bar of available therapies forward.

– Sidebar: herein lies the area to develop. How does one move the bar of available therapies forward?

Take the first step and sign the WISH petition

My very favorite part of the WISH Initiative includes:

“The WISH Initiative strives to bring the conversation about women and sexual health from taboo to mainstream. The World Health Organization considers sexual health an important component of overall well-being, and women deserve that their sexual health be recognized, properly diagnosed and effectively treated. Women who suffer from these conditions should not feel embarrassed to discuss these concerns regarding their sexual health with their doctor. Suffering in silence is not the answer!”

How many of us suffered in silence with vaginismus? I certainly did for several years. I truly believe that this is a very important step in getting vaginismus on the map and finally having physicians and clinicians recognize that it is real and must be taken seriously. As always, I would welcome your comments and feedback and hope that, together, we can all work to move vaginismus into the mainstream.

[rachel]

Hello Everyone,
I have some great news. I have been asked to conduct a workshop for some nurses and doctors at a local Sexual Health clinic here in Calgary. This is not going to be an easy step to take, but I am looking forward to it. I wanted to share this because I was wondering if anyone else on this forum was from Calgary and would like to join me! It will be happening on November 1st from 1-3pm.

I would also like to ask all of you if there is anything in particular that you would like me to educate them about in particular. I want to be a voice for all of you to the professionals that I have a chance to talk with face to face, so please let me know. Even if you want me to share a particular story about how you have been treated when you have tried to access services for help. What would make things better for you? Please comment below and I will be sure to pass on your messages to the professioanls that have allowed me to talk to them about vaginismus.

[Heather34]

This is wonderful news Rachel!!!!!! You are an absolutely amazing and special person and what you are doing to further spread the word about this condition speaks volumes for your character. Simply amazing!!!! I have so many different topics I would love for you to share in your workshop. My first idea includes:

1) Educating about the important difference b/t vulvodynia and vaginismus. I self-diagnosed myself with vaginismus and knew that I had all of the symptoms. I printed a handout about vaginismus out and described my symptoms to my first ob/gyn doctor and everything that I showed her and what I described was dismissed. I reacted with feelings of pain with any touch of even the outside area and this was immediately diagnosed as vulvodynia. I had such a reaction due to the anxiety/fear/pain response that is vaginismus and I did not have vulvodynia. It would have been wonderful if she would’ve taken the time to listen to me or even read some of what I had written out which described my symptoms. I would love for you to educate these nurses/docs regarding just how anxious a patient with vaginismus can be at these appointments and the importance of listening, caring, and not immediately diagnosing them with vulvodynia.

I know I will think of many more ideas and will post these soon too. Ladies, what additional ideas do you have that Rachel could incorporate into her workshop to educate the nurses and doctors about vaginismus?