Secondary Vaginismus Failed treatments

I am 27 years old, and have been a vaginismus sufferer for over 4 years now. For almost 6 years, I was capable of having “normal”, enjoyable, pain free sex, which makes me a secondary vaginismus patient.

The pain started a couple of months after I had met and started dating my current boyfriend in early 2010. At first, it wasn’t a big deal. I thought that maybe I had an internal tear somewhere in my vagina, and it would heal. We continued to have sex without issue for another month or so, but when it was not getting better I decided to see a gynecologist. I have always had regular check-ups with my PCP, and internal exams and pap smears every year with no issue. I decided to visit a gynecologist since they are more specialized and I figured they would have more knowledge on the pain I was experiencing during sex (unfortunately, I was wrong). I had a pap smear which came back as positive for a typical, mild form of HPV. I went back in for a biopsy (which was uncomfortable not only because it was a biopsy but because the insertion and dilation of the speculum hurt) to determine that it was indeed HPV, and told to visit again in 6 months for another pap smear, as the body usually fights off this type of HPV all on its own. I specifically asked if the HPV could be what was causing the pain during sex, and was told that it could be, since there were lesions in my vagina, etc. My boyfriend stuck by me through this whole thing, and we were both hopeful that once the HPV cleared up, we would be back to a pain free sex life. 6 months went by, sex continued to hurt, and I was convinced that the HPV was not getting better. My follow-up pap smear came back clear and I was told the HPV was gone. I told the doctor that I was told in my previous appointment that HPV could be the reason behind the painful sex, so it doesn’t make sense if the HPV is gone and the pain is still there. He said “Oh, no, the HPV wouldn’t have been the cause of that.” (Then why was I told otherwise?) “But, why does sex still hurt?” I asked. I can’t remember exactly what I was told, because the answer was such a cop-out. I know it involved something along the lines of “just try to relax” and/or “don’t tense your muscles.” At this point, I was still new to the whole thing, so I figured okay, well, if the doctor said so, the pain will go away on its own.

If there is one thing that I learned about vaginismus is that it is truly a journey - it is not a sprintMy boyfriend and I continued to have sex, but the pain was starting to increase. We were very slowly and gradually, without really realizing it, not having sex as much. A little under a year after my first visit with the gynecologist, I went back to my PCP for my yearly exam. I told her about the pain, the HPV, the failed gynecologist help, and asked for her opinion. She told me the term for it: dyspareunia (painful sex). She sent me to get an ultrasound to see if I had endometriosis (the lining of the uterus growing outside the uterus). As I waited for the ultrasound appointment, I was hopeful that maybe I had found an answer. The ultrasound came and went, and my doctor’s nurse called me with the results. “You don’t have endometriosis, but you have a lesion on your ureter that we are sending you to a specialist to have checked out.” I was so confused. I asked, “If I don’t have endometriosis, then why does sex hurt and what can I do to alleviate that . . . and what the heck is a ureter and what does having a lesion on it even mean?” The nurse gave me the same run-around of relaxing and not tensing muscles during sex, told me that a ureter is the tube that connects your kidneys to your bladder, and in response to my last question, “That is what we are sending you to the specialist to find out.” Freaked out, I Googled “lesion on ureter” and I am sure you can all imagine what popped up: every worst case scenario. I felt scared and alone. I told my boyfriend and my best friend what was going on, but that was it.

The dyspareunia / painful sex took a back burner as I went to appointments with a urologist and was scheduled for surgery to remove the lesion/polyp/growth (which was actually in my bladder, not on my ureter as the nurse above had told me). At this point, I informed my mother of what was going on. Telling her that sex hurt was pretty awkward (it’s not that she condoned that behavior, just that it wasn’t something we talked about as mother and daughter), but she was very supportive about all of it and was anxious for my surgery. Surgery was fine and quite noninvasive thanks to modern technology. The following day, my urologist called to tell me the results: the tumor that was removed ended up being a form of low-grade bladder cancer, but it was noninvasive and the only treatment needed was surgery to remove it, which we had already done. I met with the urologist again to ask all of my questions, with my mother on speakerphone since I lived out-of-state at the time. I was fine, “in remission” and no intensive treatments were needed. The urologist did not have concern of the cancer coming back, especially with my age, overall good health, and the low-grade noninvasive-ness of it. It was odd to begin with that I even had this form of cancer, she said. I think everyone in my life that knew about my cancer was more scared than I was. I never truly felt the terror of having cancer, and feel selfish calling myself a “survivor” because I never even fought a battle. My cancer story was easy, while so many others’ are incredibly difficult, life altering or even life taking. I know I was and am lucky, and I try not to forget that! I started to receive the regular recommended check-ups every 3 months, and now every 6 months, and things have been clear and good since!

During this whole whirlwind, which probably took about 2 months, I had asked my urologist if the bladder tumor had anything to do with my pain during sex. She said it was unlikely due to the small size, location, etc. of it, but I still had some hope, since I had no other culprit to place the blame on. The first time my boyfriend and I had sex after the surgery, it still hurt. I remember I cried either during or right afterwards because I was so disappointed (this was the first of many times I would cry after sex). My poor boyfriend. He just wanted me to feel better, he didn’t want to hurt me, and he never faltered in making sure he showed me he was still madly in love with me. Again, I was and am lucky, and I try not to forget that! Having sex once every 2 weeks was becoming pretty common for us, and sadly, afterwards, I started to think, “Okay, I made it. I don’t have to do it again for a while.”

When I look back on it all, I wonder why I went for months and months between failed attempts at help and answers without seeking any additional help. I feel like that was stupid and lazy of me. But I know that my fellow vaginismus sufferers (and conquerors!) know exactly why. It is the same reason I am sure many of you waited stagnantly for quite some time. I was exhausted, not physically, but mentally and emotionally exhausted, of no answers, of being told to just relax, to not tense up, to try copious amounts of foreplay and lubricants. I just wanted to be “NORMAL” and express my love to my boyfriend in the most intense way possible. But I couldn’t, and we had fallen into a rut that I never understood possible until I was right in the middle of it. The sex in our relationship had become so painful and awkward that we rarely participated in other forms of physical intimacy. But we were still then and now very affectionate in other ways; we still kiss, hold hands, cuddle, say “I love you” and find little ways to show our love for one another.

Almost 2 years ago, we moved back to my hometown across the country (which is another sign of full commitment and affection on my boyfriend’s part, as he uprooted the only life he’d known in the state we were living in). About 1.5 years ago (early 2013) I found a team of 3 doctors (a gynecologist, urologist and physical therapist) who had worked with patients like me and had success, and the most promising part for me was that one of those doctors suffered from vaginismus and now she is fine, thanks to dilators and lidocaine gel! At this point, my boyfriend and I had drifted into having sex maybe once a month, and it slowly kept decreasing (now, it has been several months since we last had sex). During my first appointment with my new doctors, I almost cried because I was so relieved to finally find not just 1 doctor but 3 doctors who seemed to actually care and UNDERSTAND. This is the first time I had heard the word “vaginismus”, and they used it a lot. “Classic vaginismus” is something I heard come from their mouths on more than 1 occasion. I had many appointments with them during a 6 month period, and we tried a lot of different treatments, with little success. I tried 2 different types of vaginal valium, lidocaine gel, dilators with lidocaine, dilators with lubricant, another form of vaginal muscle relaxer, biofeedback with and without dilators, physical therapy . . . and still there was not a moment of “wow, this seems to REALLY be working!” Still, I kept trying, and my doctors kept diligently working with me. I eventually found out that my insurance did not cover nearly as much as I first thought, and I then had to pay a large unexpected amount and discontinue appointments until I got better insurance. I continued with my dilators at home, but was discouraged by the pain. I am able to get dilators in, but it is painful, and it feels as if my muscles are trying to crush the dilator, which adds another degree of pain. A family emergency happened last December (2013) that was sort of “the final straw on the camel’s back” to cause me to completely fall out of schedule with my dilators.

A few more months passed and I decided to go visit my team of doctors again, this past March (2014), as I needed to get more structure and guidance on how to fix this issue. I worked with the doctors’ office to meet primarily with only 1 doctor, but the other 2 would come in for a few minutes to touch base. I did this to avoid having to pay a $50 copay for each doctor. When I got to the office for my appointment, I was hopeful for more motivation and support and even more hopeful for some other form of treatment. But as the appointment unfolded, something just didn’t feel right. I had to wait for a long time to see the doctor, and we went over my previous treatment and what wasn’t working, etc. I know she and the other doctors were genuinely trying to “cure” me. They’d even mentioned Botox a few times but told me the expense was high and we would try other options first. But sitting in this appointment, I just felt like I was wasting my time, almost. These doctors that I had put so much faith in before, I just felt like I had hit the end of the line with them and their treatment options. Only 1 of my other doctors ended up coming into the room to see me; the other one never showed up. I know there are a lot of different reasons for doctors being busy, etc. I know they have hundreds of different patients and cannot give me their 100% attention, and I appreciate all these doctors tried to do for me, but I just felt disconnected from them now. I left the appointment with instructions to continue with my dilators again and use a ton of lidocaine gel. I would also start to take a low dose Amitriptyline which was created as an antidepressant but has better results as a mind-block type agent for pelvic floor pain. I would be called to schedule an appointment with a doctor in their practice who would give me a nerve block that would last for around 12 hours and I was to dilate “like crazy” during that time. Then, a few weeks after that, I would meet with the doctors again. As soon as I left the office, I had pretty much made up my mind that I was never going back, and not going to take the Amitriptyline or do the nerve block. I was going to start fresh, somehow.

VaginismusMD.comAfter talking to my boyfriend about it all, we decided I would reach out to his aunt, who just recently came into our lives and is a gynecologist. An absolute blessing, she was the missing link. She was undeniably supportive and asked what I have tried and what has failed. She told me about and told me to check it out and let her know what I thought. She urged me at the very least to have a consultation with Dr. Pacik and to have my boyfriend be in attendance. She told me that she has seen the procedure being done and seen wonderful results in her patients. And the best part, Dr. Pacik was local! I live 40 minutes and work 5 minutes from his office! It just seemed like a sign. I asked my boyfriend’s aunt if she had any experience with Amitriptyline and nerve blocks as treatment. She said she hasn’t seen much success with the Amitriptyline and the nerve blocks alone, and that Dr. Pacik’s treatment is more of a “cure” rather than just “managing” with medications and follow-up appointments. I perused the website for a week or so, my excitement mounting, then made a phone call for a consultation. I was asked to read Dr. Pacik’s book first, with my boyfriend, and then I would have a phone consult with Dr. Pacik. Right from that first phone call, and I cannot remember who it was I spoke to, I knew this was going to be different. Very different. And in an incredible way.

Vaginismus Treatment book by Dr. Peter Pacik

When Sex Seems Impossible: Stories of Vaginismus and How You Can Achieve Intimacy by Peter T. Pacik, MD, FACS

The book was amazing. I loved that there were patient testimonies and success stories. I love that Dr. Pacik backed up all of his information and let you see it from every angle. I love that I didn’t feel so isolated anymore. But most of all, I love that it 100% convinced my boyfriend that this treatment was exactly what we needed. He was open to learning about it, but unsure of the whole “Botox thing”. By the time he finished the book, he was on board and ready to go, and he said he learned a lot about what I have been going through. We both talked to Dr. Pacik on the phone for about an hour in April (2014), and Dr. Pacik was so kind, patient and informative. I had a list of questions that he took the time to answer, and made sure we both understood the procedure and felt comfortable. When we hung up, I was so excited! A couple of days later, I made the earliest appointment available, in August, but was put on a waiting list for any sooner dates that may open. I got all my new patient paperwork and previous doctors’ treatment history to Dr. Pacik’s office and am currently in Step One with Diane, the billing specialist, to see if she can get me any reimbursement through my insurance (Dr. Pacik does not contract with my particular insurance and I have no out-of-network benefits). We are hopeful that since he is the only doctor who is FDA approved to administer this treatment, that I will get some reimbursement. Even if I don’t get any reimbursement, my boyfriend and I are prepared to pay the full cost. It just seems SO worth it.

I just received a phone call the other day offering me a new opening for a date in June (next month!) and I gladly took it. I am so, so excited to start this treatment and I hope that my boyfriend and I connect with a couple of other women and their partners who have the treatment at the same time as me. I am already absolutely floored by the amount of attention I received from Dr. Pacik and his staff, before even paying a dime! I can tell that Dr. Pacik knows his patients come to him after trying so many failed treatments, and all hope is lost. He does not exploit that at all though, which is rare in the medical community these days. He truly, honestly cares and wants to make this affordable and successful for each and every one of his patients. He makes sure his patients are informed, with all of the information he offers on the website, in his book and during consultation. He offers us a place to finally feel “normal” and I know he truly wants to hear about our journeys before, during and after his treatment. I feel so lucky to have been connected with him and this treatment, and I look forward to sharing my journey with all of you, and wish us all the best of success!