Re: Getting the Word Out

[Heather34]

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.