Getting the Word Out

Home Forums Vaginismus Support Group Vaginismus Advocacy Getting the Word Out

Viewing 15 posts - 16 through 30 (of 33 total)
  • Author
    Posts
  • #11872
    rachel
    Participant

    Thanks so much Heather! I have added them to my list! My brother has given me some ideas on how to run the workshop-exciting! I am thinking of introducing them to 4 different case studies of women in groups and each group will get to meet with each lady at each table. They will then have questions to work through as a group and will get to figure out what level they are on the lamont, what referals are available, what websites they can point women towards etc..

    I also want a “not what to say list” and a “to say list”! I was also thinking about some role playing for them too. One can take on the role of having to be the woman atteding the clinic and the other one can be the professional dealing with the situation.

    My brother also suggested a q and a session but from a secret annoymous box so that they can ask any questions they want about the subject without feeling embarrassed. I will do a short talk on vaginismus with statistics and defintion etc.. first and then I am putting them into full on the job action-best way for them to learn I think!

    I also heard back from the Calgary women’s resource centre and they have some women with vaginismus there too, so they are planning on getting me to talk to their nurses too! It’s kinda scary but I know it has to be done!

    I will make sure that I include your topic. Maybe I could make one of the case studies your story??? I obviously would protect your confidentiality, but what do you think? I could then get them discussing how they would manage you if you had come to their office with your complaints.

    #11890
    Nakitalab
    Participant

    Rachel, what an awesome advocate you are for all of us! Thank you so much for putting on the workshop and good luck!!

    #11896
    Olivia
    Participant

    First off- Rachel your workshop sounds like it will be educational and a great way to spread the word about vaginismus.

    I have recently been watching Bethenny Frankel’s new talk show Bethenny. Her site allows for viewers to share stories about different topics:

    http://www.bethenny.com/be-on-the-show/959/

    I know other talk shows have touched on vaginismus lightly but I think this would be something Bethenny would like to hear about. If a lot of the women who read and participate on this blog submit their stories maybe we could have another outlet to spread the word about vaginismus and Dr Pacik.

    #11898
    mmHeather34
    Moderator
    Quote:
    Quote from rachel on September 12, 2013, 09:40
    I will make sure that I include your topic. Maybe I could make one of the case studies your story??? I obviously would protect your confidentiality, but what do you think? I could then get them discussing how they would manage you if you had come to their office with your complaints.

    This sounds great Rachel. I think what you are doing is so, so wonderful. I think another thing that I would try to somehow teach the nurses and doctors includes:

    1) Please don’t tell us to “just relax”. I was told to do this so many times and it was physically and mentally impossible for me to do with vaginismus. In advance of my appointments, I would tell myself over and over that this time would be different and I would try to force myself to relax. I then got to the appointment and practically had a panic attack just being in the office. Then, when I had to actually change and they attempted the exam, it was a disaster. Everything that I had told myself during the day of how I would “just relax” was flushed and I literally felt like I was going to die and any touch at all caused excruciating pain and level 10++++ anxiety with tears and actually lifting my body off of the exam table. Please try somehow to explain to these doctors that although patients with vaginismus may try so hard to just relax and really, really want to, the scenario that I just described is often what happens during any exam attempts.

    #11899
    mmHeather34
    Moderator
    Quote:
    Quote from Olivia on September 17, 2013, 23:53

    I have recently been watching Bethenny Frankel’s new talk show Bethenny. Her site allows for viewers to share stories about different topics:

    http://www.bethenny.com/be-on-the-show/959/

    I know other talk shows have touched on vaginismus lightly but I think this would be something Bethenny would like to hear about. If a lot of the women who read and participate on this blog submit their stories maybe we could have another outlet to spread the word about vaginismus and Dr Pacik.

    This is an excellent idea Olivia. I will definitely submit my story to Bethenny and believe this is another excellent avenue of spreading the word about vaginismus.

    #11907
    rachel
    Participant

    Hi Olivia,
    Thanks for this link, I will be sure to look into this. I will be sure to talk about the things they should not say-like have a glass a wine and just relax! Hopefully it will go well! I hope to try and write up a report of how it went afterwards. Maybe we could have a place where we can put the workshop templates and then anyone who wants to talk to professionals can use them.

    #11932
    mmHeather34
    Moderator
    Quote:
    Quote from rachel on September 12, 2013, 09:40

    My brother also suggested a q and a session but from a secret annoymous box so that they can ask any questions they want about the subject without feeling embarrassed.

    This is a great idea Rachel. Some nurses and/or doctors may feel less than knowledgeable about the subject matter as it is not taught in medical school and the anonymity would allow them to really ask any question at all about vaginismus that they would not normally want to voice allowed.

    How is the presentation/workshop coming along for 11/1????

    #11935
    rachel
    Participant

    Slowly!lol I have had to make up case studies from scratch, as sadly, no one from the two forums I have been on has come forward and given me permission to use their story. In fact, I have barely had anyone contact me which I find a little disheartening, because nothing is going to change if we don’t speak out.

    I have just about wrote 4 case studies-each based on a different type of vaginismus-situational, primary and secondary. I have also contacted a few transgender people after gender reassignment as I wondered if any of them suffered with vaginismus post surgery!

    Tommorow I will work on a do and don’t list andsome material for discussion and maybe some role play to. I feel quite overwhelmed with it to be honest. I have so much other stuff going on right now-adoption-writing-health….you know how it is! But, I will get there. I guess I can only do so much on my own. Hopefully my imagination and my own personal story will carry me through….

    #11936
    mmHeather34
    Moderator

    Hi Rachel. I found an excellent resource article written by Dr. Pacik – http://www.plasticsurgerypa.com/organization-lectures-ssss/

    I had the honor of being invited to teach a continuing education course on vaginismus at their Eastern Regional Meeting, June 5-7, 2009. The 1-1/2 hour course was an excellent blend of therapists interested in learning about the cure of vaginismus using Botox and dilators. Two hour continuing education courses were presented at the 2010 annual Las Vegas meeting and the 2011 annual Houston meetings titled “An Overview of Vaginismus: Etiology, Diagnosis, and Treatment with Botox and Dilators under Anesthesia: Physicians and Sexological Clinicians Working Together for Healing” I was impressed by the large turnout for these educational sessions, and pleased that more and more heath care professionals want to learn about vaginismus. The audiance was very engaged, and each of the two-hour sessions went by very quickly.

    The abstract that the attendees recieved was as follows:

    “Vaginismus is an involuntary, uncontrollable contraction of the pelvic floor muscles surrounding the vagina occurring when any penetration is attempted, even a finger or tampon, causing severe pain, burning, and fear. Vaginismus, the main cause of unconsummated relationships, impairs or prevents gynecological examination and has serious personal and social implications for the sufferer. This condition is under-reported; its extent is unknown, but it is far more common than previously believed, now thought to afflict one to six percent of women worldwide. These women, often maintaining a wall of silence and isolation, are in desperate need of treatment. Because many physicians and clinicians are misinformed or unfamiliar with the symptoms, causes, and scope of sexual pain, sufferers of vaginismus who do seek help are often misdiagnosed and inappropriately treated.

    The syllabus included:
    1. Clarification of painful intercourse from dyspareunia to vaginismus, and the effects of these on the lives of individuals and couples, will be presented.
    2. Lamont’s classification of vaginismus, a system identifying severity levels of the condition and impacting determination of treatment, will be reviewed.
    3. Issues discussed will include medical conditions: possible causes that may need ruling out; updating terminology: clarifying a plethora of misconceptions, terms used, and differences among similar conditions, including vulvodynia and vaginismus; reasons for failure, despite often prolonged use, of conservative treatments; description of minimal penetration intercourse, a strategy which allows some patients to transition from dilators to intercourse without fear; and pelvic floor anatomy with illustrations, terminology, and conceptual understanding of the underlying anatomical problems.
    4. Treatments to be discussed include emerging researched approaches using Botox and vaginal dilation under anesthesia, combined with post-procedure care and counseling. A review of case histories with audience participation will elucidate types of counseling needed for this population both before and after treatment. Over 90% of women treated with Botox and dilation were able to achieve pain-free intercourse within two weeks to three months and required no further treatment. Prior conservative treatment received, some for as long twenty years, had failed. In addition to medical treatment, most patients benefit from clinical sex counseling for quality of life, mental health, relationship issues, and to support a comfortable transition from dilators to intercourse. Among the 10% of women who do not transition to intercourse easily, most are successful with dilators, but concomitant relationship and sexuality issues require additional sex therapy.”

    I give you my full permission to use my story as one of your case studies. I suffered with primary vaginismus for as long as I can remember. I was never able to insert a tampon and tried numerous times while in high school. I then went off to college and began my first committed and long-term relationship. We tried several times to have intercourse and it was absolutely impossible. It even hurt terribly bad when he tried to insert a finger and was impossible. We were both in our early 20s and he broke up with me because of our inability to have sex. Thereafter, I met my husband when I was 24 years old. I fell so in love with him and thought that sex would now somehow magically work because of my intense feelings. It didn’t. We tried and tried and every time, he said it felt like he was hitting a wall and I felt this terrible pain, burning, resistance feeling. Also, my body would physically withdraw from any touch at all in the area because I learned to associate it with terrible pain. I tried many times to sabotage the relationship and to push my husband away, but he didn’t move even an inch and was truly my one and only support and my rock while enduring this time. I reiterate that he was my one and only support during this because I lied to all of my close friends and family or simply did not tell them what we were going through. I wanted to be similar to all of my friends who spoke of their great sexual relationships with their boyfriends/husbands while the whole time suffering in silence with this huge problem. We were intimate in other ways (i.e. kissing, touch, oral sex, etc.) but I often felt like a failure because I wanted so badly to be able to have actual intercourse. For many years, I ignored and put off this problem. To this day, I don’t know why I put it off for so long, but at the time, I truly believed that it would somehow just go away on it’s own and the next time would be different. The next time was never different despite my preparation (i.e. booking a romantic getaway, wearing a sexy costume, etc.). It always caused excruciating pain with any touch and sex was simply impossible. I finally took the step to visit a gynecologist at the age of 29. While my husband wanted to support me and go with me, I didn’t want him to and wanted to simply visit the doctor and fix “my” problem and then everything would be fine. I went to the appointment alone, telling absolutely nobody about it, and it was one of the worst experiences I’ve ever had. I researched the symptoms I had on-line, including excruciating and burning pain with ANY attempt at penetration (i.e. tampons, fingers, penis) as well as the feeling like every time I tried to insert anything (even a q-tip), I couldn’t get past the wall of resistance and nothing would go in. I had no pain whatsoever with touch on the outside area of my vagina and also while wearing tight clothing. After researching the symptoms that I both did and did not have, I determined that I had vaginismus. I printed out my symptoms described and an abbreviated handout about vaginismus. When I got to the gynecologist’s office, I was incredibly nervous (i.e. sweating, feeling like I was going to pass out, rapid heartbeat, etc.) just while sitting in the waiting room. This was the first time that I had ever experienced anxiety/panic simply from visiting a doctor and it felt horrible and frightening. I then went into the exam room and undressed, while still feeling all of the physical anxiety symptoms described but now intensified to the highest degree. When the doctor came in and we met for the first time, she asked me what I had been experiencing. It was incredibly difficult for me to explain to her my symptoms of vaginismus while being so nervous, so this is why I had written them out in advance. I gave her a copy of my symptoms and how they correspond to a diagnosis of vaginismus and also provided her with the abbreviated handout on vaginismus. She didn’t read any of what I had written nor the information about vaginismus and just placed the papers to the side. She then asked me to try to relax and she would do the exam. I could not relax at all and when she got even close to touching the outside area (skin), I almost jumped off of the table and felt a sharp, stinging, burning, excruciating pain. She was very frustrated and said, “I’m not even near your vagina and you can’t even relax.” She tried the exam again and I had the same reaction, except I was crying at this point. She told me to get dressed and we would speak in her office. I was so embarrased and just felt so humiliated at that moment. I got dressed and went into her office, trying very, very hard to not cry. There, she told me that I had vulvodynia and she would not see me again nor ever try to perform an examination until I visited a sex therapist that she recommended. She said she believed that I had some serious issues that needed to be sorted out there and, only after receiving this treatment, would she be able to examine me. I left this appointment feeling so ashamed, embarrased, and humiliated. I never returned to see her again nor did I visit her recommended sex therapist. I continued on-line research about vaginismus and ordered dilators and a workbook. I completed every step of this workbook and tried every single night to insert the q-tip, the smallest type of tampon, and the smallest dilator and nothing would go in without the same burning/stinging pain and the feeling like I was hitting a wall. I then tried pelvic floor physical therapy but I could not make any progress with stretch and dilation because I couldn’t insert anything. This was an epic fail and I gave up hope that I would ever find a cure. I felt several emotions during this time as did my husband. He was constantly supportive and my rock but I felt like the condition was really hard on our entire relationship/marriage. The years passed and I became concerned with age as we both wanted to start a family together. This prompted me to continue researching vaginismus on-line and through yahoo forums. In May of 2011, I was fortunate enough to see a new post from one of these Forum members about Dr. Pacik and his comprehensive treatment program, which included Botox injections which progressive dilation as well as counseling. Finding this treatment provided both my husband and I with a hope that we hadn’t had in so long that we could finally put this behind us and this would work. I underwent the procedure in June 2011 at the age of 34 with my husband right by my side. Concerning the emotional aspects of this treatment program and vaginismus as a whole, Dr. Pacik and his staff treated us like no clinician ever had and we could feel in our heart and know that they cared so much. I experienced a tremendous amount of anxiety pre-procedure and this was addressed in consultation as well as office communication. I even remember bringing my handouts about vaginismus to our consult and Dr. Pacik taking the time to read what I had written and to also listen to my story and then thoroughly explain vaginismus and the procedure. I asked so many questions and they had so much patience and, again, really cared. My anxiety was further addressed on the day of the procedure as I was able to receive a tremendous amount of support from Dr. Pacik and the staff prior to the procedure. I was also given IV Verced prior to going into the procedure room and this worked magnificantly to relax me. All of my physical symptoms of anxiety that I had experienced during my first terrible visit to a gynecologist weren’t there and I felt relaxed, supported, and ready to face vaginismus head on. I had the procedure and remember waking up with the largest dilator inside of me. This was the first time in my life that something was inside of me. My husband and I were both in absolute shock but so happy. I felt like I wasn’t broken and it really felt surreal that a large sized dilator was inside of me when I wasn’t able to insert a q-tip for so many years. I then relaxed in the recovery room with heated blankets and my husband sitting right by my side and holding my hand. I then practiced removing this dilator and re-inserting it. It was liberally coated with lidocaine/surgilube and the resistance feeling that I had always had (i.e. the brick wall) wasn’t there. I could now insert, remove, and reinsert these dilators. I then slept with the medium sized dilator in the evening of day 1. This did not cause physical pain but I simply felt strange at times because something was inside of me and a little uncomfortable/sore at times. I found that taking a Tylenol PM helped me a lot this night. On day 2, I returned to the office and practiced, again, inserting, removing, and reinserting the 3 medium to largest sized dilators. Also, on day 2, Dr. Pacik and Ellen provided us with comprehensive counseling regarding tips for transitioning to intercourse and building our intimacy within our marriage post-vaginismus. I recall returning home and practicing very hard with the dilators. I dilated for 2 hours per day and every other night and sent Dr. Pacik and his staff daily dilation logs which also addressed any issues that I had post-procedure with discomfort as well as anxiety. Thereafter, on July 4, 2011, seven days post-procedure, I dilated for 2 hours with the largest blue dilator and my husband and I decided to try intercourse. We both decided that there was no pressure if it didn’t work. We were intimate with the dilators and he removed the largest blue dilator and gently inserted himself in. It went right in with NO resistance and we even tried thrusting. WE DID IT AND FINALLY ACHIEVED INTERCOURSE!!!!!! Thereafter, it took us 3-6 months until we got into a rhythym and discovered how to turn robotic and just-happy-to-be-working intercourse into pleasurable love-making. This step also required post-procedure follow-up and communication with the office which helped greatly. Today, I am 100% cured from my struggles with vaginismus and believe in my heart that this never would’ve been possible without a physician and staff who truly cared and all of the important elements of the treatment program.

    #12420
    vgfears
    Participant

    Hi Heather is there another seminar or workshop
    coming up in the near future?
    Thanks.

    #12443
    mmHeather34
    Moderator

    Hi vg. This is an excellent question. I researched both “seminars for vaginismus 2014” and “workshops for vaginismus 2014” and found the below 3 upcoming events.

    http://www.fastereft.com/events_details?ee=7
    Healing Your Sexual Self Seminar for Practitioners – Las Vegas
    March 18 – March 23, 2014

    http://www.fastereft.com/events_details?ee=21
    Healing Your Sexual Self Seminar – Las Vegas
    March 20 – March 23, 2014

    Annual Scientific Meeting 2014
    21st March 2014
    HOLD THE DATE!
    The Annual Scientific Meeting of the IPM 2014 will be held on 21st – 23rd March 2014.
    Subject: “The IPM – Future Directions”
    Venue:
    The Belmont Hotel
    De Montford Street
    Leicester, LE1 7GR

    In addition to these listed events, I hope and pray that there will be many more on the topic of vaginismus in 2014.

    In 2013, one Forum member, Rachel, both drafted and conducted a training program for clinicians all about vaginismus.
    http://www.vaginismusmd.com/vaginismus-md-forum/?mingleforumaction=viewtopic&t=668

    In addition to this, in 2012 and 2013, Dr. P posted regarding presenting at 2 workshops/seminars concerning vaginismus:

    2013 annual meeting of the American Urogynecologic Society, Las Vegas, NV
    http://www.vaginismusmd.com/vaginismus-md-forum/?mingleforumaction=viewtopic&t=685

    ISSM Meeting and Future Conferences on Sexual Pain Disorders Chicago 2012
    http://www.vaginismusmd.com/vaginismus-md-forum/?mingleforumaction=viewtopic&t=290

    #12592
    Becca
    Participant

    First of all, gotta say I LOVE Diana’s suggestion of donating “When Sex Seems Impossible” to the local libraries…. I will have to get on that one. 🙂

    Also, very cool Rachel about the workshop you were doing! That is amazing that you were speaking out on behalf of all of us. 🙂 I wish I could’ve given you my story! Although I’m still newly treated (11 days pp) I’m hoping mine will have the same happy ending as most of Dr. P’s other patients. 🙂

    My mind has been racing just trying to think of ways I can be an advocate for others like me and get the word out on this lonely condition. I have been contemplating going public with my own story – to start, just in my own circle of reach (FB, family/friends, etc) but am not ready yet to do that. I want to wait until after we achieve intercourse. 🙂 But I am just amazed at the lack of good information available. I have been google searching “vaginismus” and trying to find everywhere I can to educate and advocate. 🙂 I found one blog of a woman who diagnosed herself with vaginismus and then said she cured herself using this special type of vibrator and that was all the information she had. She didn’t offer anything about any other types of treatment – nothing. Just use this vibrator and it would fix everyone. I wrote a long (nice) comment trying to educate, but am not sure yet if she approved it to be posted. It just makes me fired up. Coming from someone who has truly suffered and tried every treatment I could find available to myself, it makes me upset when I hear someone spouting off such poor information. 🙁

    Also, one question I have too – for women that have gone public with their condition – did you have spouses or significant others and how did they feel about going public? My husband and I are feeling quite different about it. He is naturally very shy and reserved anyways, so I can understand that he feels awkward and private about it. But for me, I just feel like I owe it to these other women to be an advocate and speak up for those who don’t yet have a voice. I just remember how I felt for so many years – lonely, depressed, angry, frustrated, alone, confused and most of all like a failure as a woman and a wife — and I don’t want ANYONE else to have to feel that way, ever, not even for a minute. I want them to know they are not alone and this is something that is OKAY to talk about. Society makes us feel like we should be ashamed or embarrassed – but this is not our fault. This is not something we brought on ourselves and we should not have to suffer silently. Obviously I am hesitant to go public when my husband is so uncomfortable with it, but at the same time I cannot deny what I know in my heart, that I need to be a voice. I would love to know how others have handled this situation. 🙂

    #12593
    Dr. Pacik
    Participant

    The amazing thing that happens when you go public is how suddenly many others come out of the woodwork and speak about their own sexual pain. As for husbands this is something that needs to be discussed. “Going Public” generally refers to telling friends and family to start with, then expanding to social media, magazines, radio talk shows, TV (The Doctors, Dr. Oz) if comfortable. The comfort zone changes as you progress and become more confident. All of this is very important. I am always in a state of shock that 150 years after this condition was named by Dr. Sims, vaginismus is still not taught in medical school, residency programs and almost never discussed during advanced meetings. Yet erectile dysfunction is all over the place and no longer a big deal. Go figure that out (other than the profits that big Pharma makes).

    This is an important post. Everyone needs to figure out their own comfort zone. For the ladies who have spoken to others about vaginismus, what has your experience been?

    #13968
    mmHeather34
    Moderator

    I absolutely love this thread and believe it is so important to continue to advocate and spread the word about vaginismus and the Botox treatment program. This program was the cure that my husband and I searched so long for and now are able to make love and now have a beautiful baby boy. I want everyone out there to not only learn about the condition of vaginismus but that this treatment option exists. Please see the thread: Introducing Maze Women’s Sexual Health: http://www.vaginismusmd.com/support/vaginismus-md-forum/?mingleforumaction=viewtopic&t=1073. In it, Dr. Pacik writes:

    “I am delighted that women struggling with vaginismus will be able to continue their care with a group that both understands and treats vaginismus in a caring competent way. We are all aware of the generalized lack of training in medical school and during residency training regarding vaginismus and the condescending remarks that unknowing clinicians make. You will never hear the words “Just relax” from MAZE because they are fully in tune with the many difficulties that arise from this condition. Maze spent two days training with me and brought along two of their most difficult patients both of whom were able to achieve intercourse. Following this we collaborated frequently on difficult patients and wrote a clinical published paper together. I visited their facility and was impressed by the services they offer and their very caring attitude. They have treated some of my international patients who were unable to get their Visas before my retirement. We collaborate on a regular basis as new challenges arise. I am also delighted that the website will continue and that the Forum will continue to be a sounding board for questions dealing with vaginismus. It has always been my intention that women with vaginismus need to have a sounding board where they are able to continue to get information about vaginismus. Heather, our moderator, has agreed to continue her support of the Forum by answering questions and providing links to informative articles. I will continue to make myself available for issues that arise. It is my every intention to continue advocating for women struggling with vaginismus. I have written a number of scientific papers about vaginismus and was recently requested to write the chapter on sexual pain in a new book to be published for gynecologists. My goal is the broader dissemination of information that will allow clinicians to have a better understanding of this problem and appropriate treatment. It has been my honor to take care of the courageous champions, my “dilating divas”! I am so pleased that the torch has been passed and that women will continue to be able to receive very competent and caring assistance in overcoming the many challenges that face women with vaginismus. I wish for every woman struggling with sexual pain to have the support and treatment that will allow them to be whole again.”

    Lets do everything that we can do to continue to spread the word about this treatment program. I welcome your comments and thoughts here.

    #18783
    Anonymous
    Inactive

    We also wish that we could get the word out better. Every woman who walks into our center with vaginismus thinks that she is the only one or thinks she is crazy. Often we get approached by TV shows or reporters who want to do a story on vaginismus and then we try reaching out to patients who have successfully been treated. Women do not want to go public. On the one hand, I totally get it, on the other I find it so frustrating because the more this subject is not taboo, the more normalized it can become, the easier it will be for womeen to seek treatement.

Viewing 15 posts - 16 through 30 (of 33 total)
  • You must be logged in to reply to this topic.