Misinformation Vaginismus

Patients experience years of misinformation regarding vaginismus

One of the questions in the pre procedure vaginismus consultation form asks “describe how vaginismus has impacted your relationship”. I have gotten many heart wrenching comments. I also read stories of misinformation and too often a total lack of understanding of what vaginismus is. This lack of medical support impacts the patient. The trickledown effect is confusion, a feeling of inadequacy and disruption of the relationship.

The story below is from a 31-year-old European woman who has struggled with the severe form of vaginismus for 8 years. As a Pacik/Lamont level 5 primary vaginismus classification, she has attempted and failed numerous treatments including six years of Kegel exercises, four years of physical therapy which included dilator therapy and 2 weeks of biofeedback. She had 2 years of sex therapy, has always used lubricants and tried topical anesthetics. She was given a trial of anti-depressants, tried acupuncture, and endured two surgical hymenectomies. All to no avail. She writes how all this has impacted her relationship:

Desperate to find a solution

” At first, he used to think I secretly didn’t want him and my body was trying to signal that to me. Then he thought that I knew I didn’t want premarital sex, but I just wouldn’t be honest about it with him. Finally he realized that I have a serious problem and was serious about getting help for it. Then, he was wonderful and supportive. He even married me knowing that it may never get resolved! But the frustration I have experienced with trying to find a solution and the terrible experiences I have had with some doctors has caused me to be stressed about it a lot. Now, becoming intimate and wanting to feel desired is a sort of taboo discussion. He doesn’t want me to talk about it because it frustrates him. But when we don’t talk about it, we can never get anywhere. I am frustrated and just want this to be done with! I am really ready to find a solution.”

Forced penetration

“To give you an example of the terrible experiences with doctors: I went to a foreign country to see a specialist (that is where my parents live) and she asked me to insert a huge dilator. I told her that is the problem! If I could insert that dilator, I wouldn’t be in here right now. She said if I wouldn’t do it, she would! So I started crying and she started to shout at me saying that she doesn’t feel sorry for me, instead she feels sorry for my husband who has to put up with me and not having sex. I never went to see her again.

Since I moved to Sweden 3 years ago to be with my husband, it has been a nightmare trying to find someone who will even work with me. One ‘specialist’ stuck her finger in me during an examination which caused me to jump in fear and cry and she gave me this terrible look like I was crazy and turned to her colleague and said ‘you see? This is what we have to deal with’. Another said that it was because I had middle eastern roots, regardless of the fact that I am Canadian! The woman who tried acupuncture on me kept hitting my nerve which caused immense pain and for my hands to contract uncontrollably claiming that it was working. I have seen a lot of different doctors and ‘specialists’, but I don’t want to give up. I’ve heard so much about your treatment and every single person who has tried it has said that it saved their life and their marriage. My husband and I really want to start a family. I really hope you can help us!”

There is a cure for vaginismus

Women who have the severe form of vaginismus usually have spasm of the entry muscle. When examined in my operating room, the muscle is like a clenched fist that often will not allow the passage of even a finger. Any time a spastic muscle is forcefully stretched (anywhere in the body) it causes severe burning and excruciating pain. This type of forceful penetration only adds to the overwhelming fear and anxiety vaginismus patients have. At best a doctor can examine using a topical anesthetic and a very gentle approach, often combined with controlled sedation. In this fashion the exam will reveal which muscles are in spasm, so that the proper muscles can be identified for injection with Botox and local anesthesia. Once asleep under a light general anesthesia, it is then possible to progressively dilate the vagina to the largest dilators, allowing the patient to wake up in the recovery room with a large dilator in place. There are a great many patients who have the severe form of vaginismus where it is totally impossible to conduct a proper examination until they are sedated or under general anesthesia.

This patient was not only severely mistreated, but had to suffer verbal abuse in the process. She does not have the knowledge to understand this disservice, but instead takes it out on herself for her inadequacy and suffers further setbacks in her relationship. This story is so often repeated and is so unfortunate.

My mission

My mission is to advocate for women with vaginismus, to help educate and to allow women to understand that they do not need to suffer because of a condition they have no control over. Vaginismus is one of the easiest sexual pain disorders to treat and it is for this reason that we need to make this knowledge available to the public.

Postscript

Because of difficulties coming to the United States, she was counseled over the internet using Skype and daily emails. She was able to advance to the large dilators in eight days and achieved intercourse at two weeks.

We started working together on Christmas day 2011.

At three months she writes:

“Yesterday, I took a home pregnancy test… and it was POSITIVE!!!!!!!!! We are both so excited and shocked! I have to make an appointment with the doctor just to be sure, but we are really excited :)”

If you have any questions about our Botox treatment for vaginismus and progressive dilation under anesthesia, please contact Dr. Pacik’s office at 1-603-669-0290 or 1-800-640-0290 (US only) or via our contact us form.