Explaining your condition to a gynocologist

[Chocolate]

Hello everyone,
I was diagnosed with vaginismus shortly after getting married. A hymenotomy was performed, and after the incision healed, I started dilating. Fast forward almost 5 years and I am lucky if I can get even the smallest one in without pain (which, techinically, is an improvement – I couldn’t stand a Q-tip before) and a lot of patience. So yeah. The dilating. Not too successful with that. In fact, I now have pain and tightening down there if I KISS my husband for any prolonged period of time. Yes, my vaginismus is affecting even that (does anyone else have that problem?).

A few weeks ago I went to the ER with severe lower abdominal pain. The problem was deemed a gastrointestinal one, but after inconclusive tests I was told to get to my primary gyno to be checked out. Primary gyno? I don’t have one of those. I don’t want one of those. Nevertheless, I have made an appointment with one of the top gynos in the state. I dread this appointment. I fear I will spend more time explaining the complicating factors of vaginismus and how I cannot have a pelvic exam, intravag ultrasound, or any other pokey, proddy thing they want to do to me unless I am under general anesthesia, and less time working on finding out what has been causing the pain that sent me to the ER.

Are there any good, to-the-point articles that I can print out and bring to my consult? I actually like the Wikipedia article, but if the gyno brushes off my vaginismus I feel he would just laugh off a Wiki article. I find a lot of the verbiage in other writeups to be too . . . I dunno . . . mild? Many of them don’t seem to speak to the dangers of forcing penetration on a woman with vaginismus and how it worsens the conditon. I am not going to lay on the exam table, feet in the stirrups, tears in my eyes, shaking uncontrollably ever again. Seriously, if he tells me to take some Valium, I’ll probably just walk out of the office. I have already been the victim of uneducated, insensitive medical professionals and don’t need to relive the bad experiences that so many of us can attest to.

[elaine0086]

Hi Chocolate,
I am so sorry that you are having such struggles and are going through this. One thing I want to mention is that this forum has been such an amazing blessing to me. Being able to talk to others who truly understand where you are coming from and that also really do care about you is such an incredible support system. I have never been to a gyno before knowing in my head that it was not going to go over well and I am just now coming to terms with Vaginismus but I do know your frustration, embarrassment, and concern on how people are going to react. If he does not understand or try and understand the condition then you need to just walk out of the office door. We know what we can handle and what we cant. What Ive learned through this forum and Dr. Pacik is you have to push a little pass your comfort zone to be able to move forward but you can do damage moving too fast.
Have you thought about going to Manchester for treatment? Im going in June and am excited to be able to move on with my life and start to really live but I have been on a roller coaster ride of emotions lately. We are all here for you and I wish you luck!!!

[Chocolate]

When I was diagnosed, I had the benefit of an awesome primary care doctor who understood immediately what the problem was. However, it was not his specialty, so he referred me to other doctors, calling ahead for me, and letting them know that I could not have any pelvic exam, etc while in a wakeful state. Well, apparently, every gyn thinks they are “The One” who will get that speculum in you, come heck or high water (but not sedation, never sedation . . . ). Needless to say, my primary doctor found out what happened, and was not happy with them. This time, he called a gyn surgeon, someone who is used to working on sedated patients (lol). The surgeon was very understanding, knew my diagnosis and agreed to sedate me and do a pelvic exam and pap, and look around to make sure there were no other physiological problems causing/exaserbating the spasms. If the hymen was too expansive or thick, he would perform a hymenotomy. While I was under, he discovered he could only fit one finger “down there”, so the surgery was performed. Knowing what I know now, I wonder if I was having the spasms regardless of the sedation, and that’s why I appeared so “small”. Anyways, the surgery is what is.

As far as going to Manchester, yes, I have considered it. I first discovered Dr Pacik and the Botox procedure while looking up treatment options online. At the time, Dr Pacik was conducting the study. I contacted the office to see if I could be a part of it, but it was already full. I just could not afford the full out of pocket cost. I contacted my insurance to see if any part was covered (and I had very, very good insurance) and of course it wasn’t. So I kind of just gave up. I had a new home we were fixing up, and a new mortgage to pay, and stuff going on here and there and it just wasn’t going to work. So I just filled my life with busy, awesome stuff . I figured that other people deal with awful things that I could never imagine dealing with their whole lives, and this would be my personal awful thing that I would just grin and bear.

I also have what I call the “Swimming pool effect”. When we were kids, summer would arrive, it got hot, we were miserable. Then the parents got a pool. Not just some little kiddie pool! A real pool, big enough to swim in and float in and play with pool noodles in! Hallelujah, right? Well, it would hit 90 degrees or so, the pool would be sittin’ there lookin’ good . . . . and I hardly ever went in it. I would look at it, think, “it’s there if I need it, and that makes me feel better already.”

I get miserable, think about my condition, then I realize that Dr. Pacik’s office is two measly hours away by car. “Good” I say to myself, “it’s there if I need it. Wow. I feel better already.” and then I go back to my little life. There’s probably some sort of a term for that behavior – avoidance, maybe? But anyways, yeah. I could leave my house now and be in Manchester in time for supper. In fact, I drive right through NH several times a year.

[Heather34]

Hi Chocolate. Like Elaine said, I want you to know that we are all here for you. I suffered with vaginismus for my entire relationship (11 years) and was cured following receiving Dr. P’s procedure in June 2011. While having vaginismus, one of the most difficult aspects for me was visiting the gynecologist. I absolutely dreaded it and tried to “will” myself to get through the exams. I kept scheduling them and thinking – maybe this time will be different if I just relax a little more. But, unfortunately, it never was. I even had a surgeon tell me the same thing – why don’t you just let me try to examine you? Like he was the one who it would work for. I know firsthand how frustrating this can be.

Here are a few tips that I believe I would’ve found useful in the past:

1) One of our forum members, Vashalla, mentioned this in a prior post. If I currently had vaginismus and scheduled my first gynecological exam, I would call the Doctor’s office in advance of my appointment and ask if they have ever treated any patients with vaginismus. If I was too nervous doing this, I would ask for their fax number and fax over a note to the doctor about my vaginismus condition in advance of the appointment.

2) One thing that I would’ve loved is a script to actually bring with me to the doctor’s office that talks about vaginismus. I get extremely nervous around doctors in general and often forget what I had planned to say and this was a hundred thousand times worse with ob/gyn doctors. Having a script would’ve helped me so much then.

See this thread for script samples: http://www.vaginismusmd.com/vaginismus-md-forum/?mingleforumaction=viewtopic&t=577

3) I love what Nakitalab wrote about using an inflatable speculum in the past. This, too, may be extremely helpful for you to read: http://www.vaginismusmd.com/vaginismus-md-forum/?mingleforumaction=viewtopic&t=571.0#postid-2747

4) Finally, I live one hour South of Manchester in Boston. One gynecologist that I’ve had a wonderfully positive experience with is Dr. Nina Carroll in JP.

Please, again, know that we are all here for you and I look forward to reading more of your posts.

[Chocolate]

Thank you for recommending the script examples. Many of them seem to be intended for women who are still trying to be diagnosed with vaginismus, which has already been established in my case, but they are helpful nonetheless.

The inflatable speculum looks like it would be a great idea if my spasms were not so severe. At home, I can get the smallest dialator in after several minutes, only if I’m lying on my back, and only . . . I dunno how to describe this . . . on certain days. Some days, nothing will go down there. The muscles just stay on lockdown and refuse to budge. I mentioned having spasms while kissing – probably this happens at the point when I am supposed to be getting “turned on”. I have tried Kegels when this happens. I can do Kegels at any other time, but not during those spasms. It’s like when your hand falls asleep and you try to move it. You can almost feel the message being sent by your brain, but it hits a roadblock before making it to the final destination. Anyways, I doubt I could bear a Q-tip if I was in a doc’s office, just because of the clinical setting and bad experiences.

Yeah, gotta love those docs that think they will be victorious in “conquering you”. Or “it will be so quick, and then it will be over!” they say. Awwright!!! I’ll only have the sensation of a chainsaw cutting me straight up though the center of my body for 10 seconds. Life is goood!! Not!

My husband can’t get in there – what makes them think they’ll actually get a hunk of cold surgical steel in there?

[Heather34]

I felt so, so similar Chocolate. Despite how much my husband and I tried, we could never ever move past this “wall” of resistance. In fact, pre-procedure, I could never even move past it to insert a q-tip let alone a dilator or speculum. It was frustrating to say the least. One of the best aspects that I noticed following the procedure is that this wall that had always been there dissipated which allowed the use of the dilators as well as intercourse for the first time ever. There is also another thread that talks about a patient’s similar experiences of breaking down the wall of resistance: http://www.vaginismusmd.com/vaginismus-md-forum/?mingleforumaction=viewtopic&t=229 Please know that I along with the other members of the Forum are all here to support you. Hugs!!!

[Janet Pacik]

Hi Chocolate, Just wanted you to know that I can send you some information on the Botox Treatment Program which would include a patient information form and a questionnaire. With this information, Dr. Pacik would be able to evaluate your level of vaginismus and he could also arrange a conversation with you via telephone or skype. Let me know if you would like to receive information from us. We are here for you.

[Chocolate]

I’m alive! Sorry for slacking with my correspondence here . . . My gyn appt went much better than I thought it would. When I told the nurse of my condition, she made sure to let me know that they would not subject me to a pelvic exam. Anyone reading this knows what a relief that was to hear! From my conversation with her, it appears I am the only patient with severe vaginismus currently being seen at the practice. However, the Dr. informed me he had dealt with severe cases in the past. He was able to determine that my ER troubles were most likely not gyn related and that my ovaries/uterus are in good shape *without* having to do a pelvic exam. Phew! He did the touch test for vulvodynia also, which was tough for me. I can’t believe how tensed up I was down there. He had specifically told me “I promise not to stick anything in there”, and I knew he meant it. I told myself that this time I would be different and will myself to relax, since I knew there would be no penetration, but . . ugh. My legs were flinching so bad and I couldn’t control them. Even my stomach muscles seemed to tighten right up. It was aggravating to not be able to control the shaking. But nothing actually hurt – which was good. So no vulvodynia, which I was pretty sure I didn’t have anyways.

Janet, I would like the info on the Botox Treatment Program. I would also like Diane Tremblay’s (sp?) info. My new gyn is unfamiliar with Dr. Pacik’s program but says he will help in any way he can if I decide to go that route. 🙂

[Janet Pacik]

Hi Chocolate, I will send you a separate email right now with the information on Dr. Pacik’s program. If you doctor would like to speak to Dr Pacik, I know he would be more than happy to speak to him. It is so important to education the physicians out there who are trying to help vaginismus patients. I also wanted to mention that Diane Tremblay has had great success in getting a very good reimbursement for our patients with insurance. I will include Diane’s information in the email. I am very happy that your visit went well and that your doctor was open to learning about the Botox treatment program.

[Nakitalab]

Hi Chocolate, I’m so glad that you are getting more information on Dr. Pacik and his procedure. I had level 5 Vaginismus for over 34 years and had tried everything under the sun. I couldn’t believe it when I stumbled across Dr. Pacik’s website and the Forum. Couldn’t believe how many other women suffered with the same thing that I had as I truly thought I was the only person in the world. For the first time, I felt there was actual hope for me. As the time got closer for me to go back to NH I had these feelings of doubt, that I wouldn’t be able to have the treatment because of my fear and/or that it wouldn’t work for me. I’m so happy to say that it did work for me and as it can for you too! I so hope that it works out for you to talk with Dr. Pacik about his program and you can have the procedure. Diane was extremely helpful in getting our insurance company to help pay for some of the costs. In the beginning they said they wouldn’t pay for any of it but Diane worked her magic and was able to get them to reimburse us for a small portion. Please know that I am here for you and so excited that you are getting more information on Dr. Pacik and his procedure. Please don’t feel that Vaginismus is your cross to bear for the rest of your life because I promise you, you can be free of it and if you feel inclined you can use your experiences and journey to help someone else. Looking forward to reading your posts. :0)

[Dr. Pacik]

Hi Chocolate

You raised a number of points in this very valuable exchange of information. You and the others reading this should understand the role of hymenectomy. The main problem with vaginismus is spasm of the vaginal entry muscle. Therefore the treatment needs to address this spasm which is Botox, dilators and post procedure counseling, or dilators alone with counseling in less severe cases. Though the hymen may be a problem, and sometimes I find the need to release the hymen (fairly rare), hymenectomy in of itself will not cure vaginismus. Feeling your muscles going into spasm when kissing confirms your diagnosis of vaginal spasm. This is much like suddenly getting a “Charlie horse” when other muscles in the body go into spasm. “Hitting a wall” is also a very common complaint. All this speaks to muscle spasm and therefore the diagnosis of vaginismus. The inability to have a GYN exam further confirms the diagnosis. A doctor who is able to insert only one finger (or usually no finger when the muscle looks and feels like a tightly closed fist) could be an indication of a tight hymen, but when combined with the proper history, the diagnosis should be muscular spasm rather than the need for a hymenectomy. (A recent patient had both a hymenectomy and an episiotomy (cutting into the vagina) which is sometimes done during childbirth to widen the canal). Of course none of this helps because the diagnosis of spasm was missed. When women are anesthetized to have a GYN exam, the spasm disappears and they are told “everything is normal” which doesn’t help anything other than creating more confusion. I would love to hear from some of the others further discussing these points.

We routinely send brochures to any patient requesting them to give to their doctors and I often speak to other doctors to help them understand. The treatment needs to include the psychologic manifestations in that it is not so easy to overcome the fear and anxiety of penetration in patients with severe vaginismus. This is why Botox alone does not cure the problem because vaginismus women need much more than just injections. I hope this helps. I would be happy to review your questionnaires and discuss my thoughts with you.

[Chocolate]

I had the sinking feeling when the hymenotomy was performed that it really wasn’t going to work. I couldn’t see how pulling back a thin piece of tissue would remove the “bone on bone” pain I was having. It felt like the vaginal entrance was constructed of poured concrete. But, the surgeon was so kind to me, and so much more respectful than some others had been. I really wanted to be his patient. He never even suggested trying an internal exam while I was awake. He made sure there were no metal instruments in the room, and when he had me on the table to have a look at the “outside”, he kept his hands in the air or on my knees so I could see them at all times. In spite of his understanding nature, I just don’t think he realized how bad my situation was. He mentioned briefly that I might need to use some dilators after the surgery, and suggested the ones from vaginismus.com (which, by the way, when smothered in lube, still have roughly the same glide-ability of the fabric rollers I use to get cat hair off my couch). I think he had only dealt with less severe forms, and that he thought I needed the “door” to be opened a little wider, do a few stretches and “Voila!” Patient cured!

Um, I have never tried to dilate with a fabric roller, in case anyone was wondering.

[Heather34]

Hi Chocolate. In a blog in which Dr. Pacik discusses the spastic muscles, it provides an excellent explanation of how this program works to help patients overcome level 5 vaginismus and this is how it worked for me.

He begins by writing:
“In filling out their questionnaires, a surprisingly large number of patients use the terminology that attempting intercourse is like “hitting a brick wall’! This “brick wall” represents spasm of the entry muscle of the bulbocavernosum. It is much like making a tightly closed fist and attempting to push the opposite index finger into this tightly constricted muscle mass. Not possible. Neither is penile penetration. For severe cases of vaginismus, NO PENETRATION IS POSSIBLE!”

This is exactly how it felt every single time I tried to insert anything in the past (i.e. intercourse, speculum for ob/gyn exam, plastic dilators, and even a q-tip).

Next, he writes:
“The reflex of vaginismus: It is likely that the spasm of the vaginal muscles, especially the entry muscle, the bulbocavernosum, represents a reflex. The brain appears to perceive that penetration will be painful, and the vagina responds (protective reflex) with spasm which is equivalent to the body protecting itself by saying “no entry”.
Phobic avoidance: The reaction to penetration in vaginismus patients is much like any phobia. For the person afraid of heights, you have to practically drag them to high points, there is so much fear and anxiety. The heart races, they break into a sweat, they begin shaking uncontrollably and are sure they will faint. These same responses take place in vaginismus patients faced with penile penetration. This is the bodies way of avoiding a perceived threat.”

He goes on to describe progressive dilation under anesthesia:
“Following the Botox injections, which are done under anesthesia, the vagina is then progressively dilated using a series of larger dilators to stretch the vagina. This is left in place and the patient wakes up with usually the largest dilator. As the Botox becomes effective during the next 2-7 days, the stretching becomes easier because of the dilators.”

I know that I’ve written about this extensively but this was seriously the turning point for me in overcoming vaginismus. When I woke up with the largest dilator in place, I knew that something was able to be inside of me pain-free and it worked to change my whole mentality.

He next describes stretching of the tight muscles:
“As patients begin stretching these tight muscles they begin to understand that dilation is not the end of the world and in fact becomes easier with time. Sooner or later they make the next leap of faith having intercourse and even GYN exams.”

This, again, happened for me following the procedure. I was able to practice taking the dilators out and re-inserting them and each time, felt more and more comfortable and confident with this. Again, once I woke up with the dilator in place and knew that it had worked and I was able to re-insert it pain-free, I knew that anything would be possible. We made the transition to intercourse within 1 week. Thereafter, I had my first successful ob/gyn examination.

Dr. Pacik finally describes the home stretch:
“Now the brain realizes it has nothing to be afraid of and this protective reflex begins to disappear. Long after the Botox has worn off, the body appears to understand it no longer needs to protect itself against the perceived pain of penetration and the protective reflex appears to disappear.”

This is exactly what happened for me. Once I woke up with the dilator in place and practiced taking it out and reinserting it, my way of thinking changed from the fear/pain response to “this works and does not cause any pain.” The same thing occurred with both intercourse and ob/gyn exams.

I had very severe Pacik/level 5 vaginismus and could never insert a thing without this fear/excruciating pain response. Today, I am able to have pain-free gynecological exams/tests and my husband and I are enjoying a pain-free and wonderful sex life, all something I never could’ve even dreamed of prior to this procedure.

Please know that I am here for you 100% and always will be. Sending Hugs!!!

[Chocolate]

Thank you everyone for your support. 🙂 I did speak with Dr Pacik on Tuesday via phone call. My husband and I decided that we really wanted to have the procedure done as soon as possible. I was able to open a CareCredit account for almost the full amount of the procedure and on very short notice, schedule my procedure for June 24th – one week from Monday! Ugh! Too exciting! This next week is going to drag by, I know it! 🙂

[Nakitalab]

I am so excited for you Chocolate!!!! That is wonderful news!! You couldn’t be in better hands. So very happy for you!