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Bitesize, I had irritation deeper in, after insertion a few times. It seemed that I was spreading the lube around on the larger dilators too equally. It ended up being a better idea to leave proportionally more lube at the tip of the dilator. I don’t think the lube was making it all the way to the end of “the tunnel” if I didn’t leave a liberal amount on the tip. After changing my lube distribution habits (lol), the deeper irritation no longer is a problem. I occasionally have a problem with exterior irritation (blah), and interior ache/pains (bleh) though.

Kudos on being able to make progress while using Ky Jelly! I was not able to dilate well with it. It seemed too thin when I applied it, and if I could get the dilator in, it was though the KY turned to rubber cement inside of me. Right now I use Sliquid Sassy. Very thick; I can glob a big ol’ blob of it on a dilator and don’t have to worry about it dripping off before I can get it in.

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I know going forward that this time of year will represent a kind of “anniversary” for me. 🙂 Hubby and I had intercourse for the first time ever on July 2nd, 8 days after my procedure. It was totally pain-free and certainly lifted the great burden we had been carrying for so long. 🙂 <3

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The problem with an awareness ribbon: people will ask you what it is for. Lol. So awareness ribbons will only be suitable for ladies who are ready to discuss this with all family members, friends, co-workers, and complete strangers who are in line with them at the post office. Or, worn by folks in the healthcare realm, who may or may not have the condition, but still want to raise awareness.

As it is right now, I only have material enough to make roughly 70 little ribbons. I have contacted the etsy supplier I bought the ribbon from, to see if there is the possibility that they will get more in. They are all out right now. 🙁

But bracelets – those can definitely be worn in a more discrete way. Especially if the embossing/printing on the bracelet is carefully worded. It could be a source of comfort to the wearer without putting them in the spotlight. http://www.amazingwristbands.com/Standard-Wristbands I played with this bracelet designer thingie for a while. I chose segmented color, and clicked on the “create custom color” link below the drop down box (once the little window opens, it’s easier if you select the standard color tab instead of the all colors tab). I chose true red, true pink, white, true red, true pink, white so the bracelet has six segments of color. You can also change the font type and color ( I thought “Loved Boy” was cute, but I didn’t really look at too many of the font choices). Anyways, I liked this because the bracelet example changes as you make different choices. It was fun to play with.

As far as marketing – that is so not my specialty – is there a marketing expert in the house? Lol.

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Well – you sort of beat me to the topic. 🙂 I guess I will post it here instead of starting a new thread. I have been trying to design an awareness ribbon for vaginismus/vulvodynia for a couple weeks. Everyone else gets a ribbon! We don’t even necessarily get a doctor who understands our condition, much less a ribbon. So we need a ribbon ’cause it’s only right, I say. 🙂 I wanted a color that wasn’t used (impossible) – or a color combo that is not used (better chance of uniqueness). I decided to try red-pink-white horizontal striped ribbon (think of the patriotic red-white-blue that you sometimes see for 9/11 remembrance) and found out you can’t just buy a red/pink/white grosgrain ribbon. Bummer. But I found some ribbon that contained that exact color sequence – I just had to trim out the rest. So I trimmed. Then, I made the ribbon loop like normal awareness ribbons do, but I left one tail longer than the other, cut it at a sharp angle, and then sliced in between the three stripes, so they separated from each other. So on one “tail” of the ribbon, the stripes are separated. I wanted something to symbolize isolation and felt that was it.
Obviously, the work it takes makes me wonder if it was worth it, what with all the trimming – and I also had to treat it with clear nail polish to keep it from unravelling – but I really do like the design. I have a pic – a very lousy one, I might add – but I guess I can’t post pix here? Maybe I will make it my avatar.

So anyways, yeah, not sure what I am trying to say, BUT – if we are discussing colors, it’s worth noting that no condition/cause has adopted the red-pink-white scheme. I’ve checked lol. It does appear with some of these custom silicone bracelet makers that you can choose to make a bracelet with three colors of your choice.

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Resting at home and progressing w/ the dilators. 🙂 I was able to get Mr Blue in 1 day post procedure – wasn’t the most enjoyable experience, but I did it! It does a lot for the psyche when you can accomplish something like that before the botox has really had time to work. 🙂
I’ve got to say, I really love these glass ones!
Anyone out there, “lurking”, (you know who you are!) I highly recommend seeking treatment from Dr Pacik if you have vaginismus. You are in good hands with the good doctor and his staff. 🙂

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Thank you Heather. Packing today and leaving early AM tomorrow! 🙂 I will try to post updates as I am able. 🙂

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I wonder what prompted this topic? 😉
I have not yet had the procedure (few more days!) so I can’t call myself a veteran, but I did just have the call with Dr Pacik last week. One of the questions I asked him was how long I would have to be in Manchester. I had read conflicting accounts – some two days, some three. Dr. Pacik explained the difference, saying that both reports were correct. Depending on the severity of the vaginismus, especially anxiety level, Dr Pacik may have you stay the third day, to make sure you are comfortable with dilating and to make sure you “own” the dilation process. He also further explained that some patients simply choose to stay the third day because of the good energy between patients. This makes so much sense. So many ladies have felt so isolated because of their condition and are happy to spend another day with women who have “been there”. 🙂

I also asked another question that I am sure is a frequent one. What if I get/have my period on the day of the procedure? Dr. Pacik explained that it does happen, and while annoying and messy, the procedure can still be performed. Stress and anxiety levels can cause some ladies to start their periods much earlier than expected – so even if you don’t expect your monthly friend, be prepared for her in case she decides to pay a visit. 🙂

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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! 🙂

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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.

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This is going to sound terrible . . . but I don’t really have any close friends. Lol – it’s not as bad as it sounds, I assure you. I have lots of friendly aquaintances – no one close enough to talk about this kind of thing with, though. My husband knows about my condition because he’s got no choice. 😀 My mother knows because she was the first person I called after I got home from my stupid honeymoon. My father knows because he’s married to my mother – lol. My mother is the only one I can really talk to in any depth about it. My husband forgets conversations 5 minutes after they take place. There’s nothing quite like speaking in depth about a painful and emotionally draining subject only to discover the person you were talking to was NOT listening.

I know a lot of well meaning people who have unquenchable pride issues and think that rudeness while despensing “advice” is perfectly acceptable. I don’t think they are mean spirited – but it seems in the formative years no parent or authority figure ever pulled them aside and told them what they should and shouldn’t be saying. Their mouth has no filter. Any resistance from me would be countered with an accusation that I am being unreasonable. I do not dare to tell them because one ignorant word out of them, and . . . I dunno. I ‘d lose it on them. Not in a sad crying way. But in an angry blood boiling way.

When I was talking to folks at work, I did mention it vaguely a few times. I had been taking time out of work to see different docs and such regarding a previous ER visit. Some ladies I work fairly closely with asked me if I would know anything after my next doctor’s visit. I told them probably not – because my next visit is a gyn visit, and “I have a condition that affect the muscles in the pelvic region and makes exams pretty much impossible”. They were good natured about it and cracked a few jokes about visiting the gyn being bad enough. The conversation changed course after that. I do wonder if they thought to themselves later, “If she can’t have an exam, then can she . . . . y’know . . . . . . ???”

I think I would probably be more open to talking about my problem after it was resolved. Not sure why, but I do feel that way.

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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. 🙂

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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?

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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.

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