dealing with pain and dysfunction


Category Archive

The following is a list of all entries from the Emotional Treatment category.

NYC Therapy

On Friday I saw Dr. Barbara Bartlik at Weill Cornell Psychiatry.  She specializes in anxiety/depression, relationships, and vulvodynia.  Although she’s a psychiatrist, she has also done research on vulvodynia and pelvic pain.  We had a really great conversation, and she gave me more recommendations for dealing with anxiety and pelvic pain than all the other doctors I have seen–some of which I hadn’t heard of.

– Theanine

– Valerian Root

– Pycnogonol, 75 mg twice/day

– Arginine, 3 g/day

– Olive oil as lubricant (for use with dilators or partner)

– Caprillic acid

– Uva urso (bearberry)

– Low sugar diet (as recommended by Dr. Deborah Metzger of California)

– Digestive enzymes and probiotics (Culturelle was recommended brand)

She also wrote me a prescription for a set of dilators and recommended a physical therapist at Weill Cornell.  Her name is Alyssa Padiail, and I’ll be calling tomorrow to set up an appointment so I can figure out how to best use my biofeedback machine.  My other prescription was for Viagra, strangely enough.  By increasing circulation to the pelvis, dilator and biofeedback therapy will be more effective and sex less painful (at least that’s the hope).  The arginine supplements work with Viagra to strengthen the effect.

Overall, I liked Dr. Bartlik much better than the Cornell campus sex therapist, and already have a second appointment set up with her in two weeks.  She had not heard of the low-oxalate diet, so vulvar vestibulitis patients may want to find a different therapist who is more familiar with VV treatments.

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A Change.

My mother let me charge the biofeedback machine to her card. (!) And now I’m waiting for it to arrive in the mail, hopefully before I leave for NYC for the summer. I can’t wait for it to get here! I’m a bit scared for the whole process though. I bought the probe instead of the wires and those sticky EKG pads to save some money, and I really hope that the probe isn’t too uncomfortable. Eek, it’s making me nervous. But at least I won’t have to deal with ripping those electrodes off. Nothing like killing the newfound relaxation by tearing adhesive off your crotch, eh?

I also found a therapist in the city that has experience with women’s sexual health, couple’s therapy, AND mood disorders… plus, she’s through Weill-Cornell, so go big red or something school-spirity. I also found a medical acupuncturist at vulvodyniasupport.com, and his office also does yoga and other mind-body relaxation. I just hope I have enough time to go. So I’m feeling pretty good about things for a change. Hopefully six months+ of biofeedback and a whole lot of therapy will be just what I need.


Time for a Bake Sale?

I got a call from my pelvic floor physical therapist today.  She submitted everything to the insurance company, so now I sit and wait.  I’m not very optimistic that they’ll cover a biofeedback machine though, and my PT ran through the costs with me just so I would know what I have to look forward to.

Unit (Pathway MR-10 single channel sEMG) —- $625

Lead Wire ——————————————— $56

Adapter ———————————————– $49

100 Electrodes (one per session) —————– $98

Vaginal Probe —————————————- $37

TOTAL ———————————————— $867 + tax

Now, I could forgo the lead wire and adapters and just use the probe, for a total of $713.  I’m afraid of doing that though, since I haven’t tried the probe before, and if it’s too big or uncomfortable, well… that’s just one more reason for me to hate doing therapy.  It’s already time consuming and awkward.

In any event, I don’t have $867 or $713 right now, since I’ll be living in Manhattan for two weeks before I get my first paycheck (at a whopping $8/hour at 30 hrs/week, I’ll really be livin it up).  Oh, dear.  There are so many people at this school that are here just for funsies because they have money.  Maybe one of them will give me a loan instead of buying another pair of sunglasses?  Yeah, probably not.  Who wants to buy some cookies?

The PT is calling me back tomorrow about a payment plan, which should hopefully make this all more doable.  I could even pay for maybe 1/3 of the total without freaking out too much about my near-empty bank account.

I really need to find a sex therapist that I get along with.  I finally sucked up my pride an got a psych eval, and unsurprisingly, I am clinically depressed and have generalized anxiety disorder.  I haven’t allowed myself to break down about it yet (but I guess that’s part of the same skill set that’s allowed me to hide the depression for so many years).  I’m curious as to how much of that depression can be traced back to these feelings of worthlessness that I get from not being able to have a full physical relationship.  Help?


Day of Needles.

Thankfully, I tested negative for lupus.  On the other hand, that meant a whole lot more tests to deal with (again).  I had to get a CAT scan on Friday, and they didn’t tell me that I would need an IV.  I don’t know what the deal is with IV’s, but they make me absolutely hysterical.  So I started my day flailing and shrieking at a nurse for doing her job–I swear I’m not crazy, it just hurts like hell and makes me freak out for some reason.  Then I had to get blood drawn to test for a bunch more crazy diseases, but since I’ve had so much blood drawn recently, all my good veins were bruised up.  So they used a vein in the side of my arm.  Okay, I will never let anyone do that again.  It SUCKED, and saying that those veins are “a little sensitive” is in the running for understatement of the year, right up there with “so, you feel a little nauseous?”  And then I went to my first acupuncture appointment, which was another 14 needles.  The first treatment was great, and the needling sensation isn’t at all what I had expected.  It’s just a bit of pressure and some tingling.  I have two more appointments this week, and I’m hoping to talk to my acupuncturist about the pelvic pain, as well.  It worked fabulously for the nausea and dizziness, so I think it’d be a good option for trying to deal with vulvodynia, as well.  She gave me an herbal supplement to take, and I think I’m liking this Traditional Chinese Medicine approach much more than the Western approach that has done exactly nothing for me.

And after all that, my gastroenterologist thinks that the (TWO MONTHS OF) nausea and stomach pain are from stress and anxiety.  I was trying so hard not to cry/laugh in his face, but he gave me this talk about how this diagnosis is one of exclusion, we have to rule out everything else that could be causing it, and there’s just this class of stomach pain that they call “dyspepsia” so it has a name.  OMG, sound familiar?  Vulvodynia is a diagnosis of exclusion, you don’t have a yeast infection, you don’t have BV, you don’t have ANYTHING, so we’ll just call it “pain in the vulva” so it has a name.  So there’s one more health problem caused by stress and anxiety.  I’m seeing another therapist on campus, and I have an appointment with a psychiatrist coming up soon so we can talk about anti-anxiety medication.  I resisted being medicated for anxiety for years, but really, if it’s manifesting as debilitating physical problems, I’m going to do whatever I have to in order to fix it.  Even if it means drugging myself.


Letter to the Insurance Folks.

Wow, two updates in one day. Kickass.

So, I’ve had quite the adventure trying to get a biofeedback machine covered by my insurance. With pelvic floor dysfunction, there’s not much I can do other than biofeedback, but it’s still considered an “alternative treatment”.

…Even though it’s the only one. I will never understand how these people think. I spent some time with my mother over spring break, and we put together a letter that outlined the previous care I had received for my vulvodynia. My mother hadn’t even heard of most of the doctors on there, and had no idea what I had been through to get a diagnosis. It was great to be able to talk to her about it. Anyway, here’s the letter. Most of the doctors I have seen are not on there, as many of them were incredibly repetitive (and a few of them I just plain forgot, seeing as how once they got out “it’s all in your he–” I was dressed and out the door).

Dear _______,

Per your attached request, the purpose of this communication is to provide additional information about previous treatments and physician visits for my daughter, Lindsey ______________. This is regarding her recurring pelvic pain issues, which have thus far not been successfully addressed or resolved by various doctors.

Roberta Frost (?), Planned Parenthood, ___________, MI. Ms. Frost (?), as a Planned Parenthood practitioner, was unable to prescribe a tricyclic antidepressant, and therefore recommended Lindsey see a gynecologist in a private practice. (See below regarding additional information about tricyclic antidepressants.)

Dawn Applegate, DayOne, ___________, MI. Dr. Applegate did not prescribe anything and told Lindsey “the pain was all in her head.” This was clearly ineffective, although it is noted that Lindsey was also seeing a therapist at the time. The therapist has made no mention of the pain being in Lindsey’s head.

Rose Lovio, DayOne, _____________, MI. Dr. Lovio did not prescribe anything and told Lindsey “the pain was all in her head.” This was clearly ineffective, although it is noted that Lindsey was also seeing a therapist at the time. The therapist has made no mention of the pain being in Lindsey’s head.

Nadine Weisser, ____________, MI. Dr. Weisser did not prescribe anything and told Lindsey “the pain was all in her head.” This was clearly ineffective, although it is noted that Lindsey was also seeing a therapist at the time. The therapist has made no mention of the pain being in Lindsey’s head.

Dr. Roxanne Cornelius, Pro-Med Physicians Family Practice, ___________, MI. Dr. Cornelius recommended that Lindsey “live her life at the foot of the cross” and not engage in sexual activity or any other activity that could cause pain (bikeriding, walking long distances, sitting for long periods of time). Please note Dr. Cornelius is no longer employed by Pro-Med.

Dr. Laura Kooy, Pro-Med Physicians Family Practice, ___________, MI. Dr. Kooy ordered both abdominal and vaginal ultrasounds because she believed that the pain could be caused by a retroverted uterus. This was incorrect.

Rachel Yankama, _____________, MI. Dr. Yankama prescribed estrogen cream, which was ineffective in alleviating pelvic pain. This was followed by 2% Lidocaine topical cream, which was also ineffective. This was followed by Elavil, a tricyclic antidepressant, which is used to treat overactive nerves in the pelvic region. This was ineffective and made Lindsey overly tired while not addressing the pain.

Kenneth Levey, New York Pelvic Pain, NYU. Dr. Levey, a trained specialist in pelvic plain, has diagnosed Lindsey with vulvodynia. Please note that vulvodynia is a real and common condition. A Harvard prevalence study shows that as many six million American women suffer from this condition. Almost 60% of patients report visiting three or more health care providers to obtain a diagnosis and 40% remain undiagnosed [Harlow BL, Stewart EG, Journal of the American Medical Women’s Association, 2003 Spring 58(2):82-88]. The National Institutes of Health recently launched the first ever national vulvodynia awareness campaign in order to educate health care providers about the condition so that other women can be more readily diagnosed and properly treated for this condition. Dr. Levey ordered pelvic floor physical therapy twice weekly (see below for additional information). Dr. Levey also prescribed a combination topical cream of aspirin and lidocaine which has been minimally effective.

Christine Feely, Cayuga Medical Physical Therapy. Ms. Feely is the only pelvic floor physical therapist in the Ithaca area where Lindsey resides. As such, Ms. Feely’s calendar is extremely booked and does not offer available appointments at times Lindsey is not attending classes. As prescribed, Lindsey is supposed to attend physical therapy twice weekly. Unfortunately, Lindsey does not have transportation and has to take a cab to and from the appointments, which is both costly and time consuming. Moreover, her schedule prevents her from being able to attend appointments.

We are requesting that NGS reimburse us for the purchase of a home use biofeedback machine and accompanying software. Ms. Feely will provide additional information about these products. It is believed that the cost of this equipment would be offset within less than one year of attending physical therapy sessions on a twice weekly basis as prescribed.

Please do not hesitate to call if you have any questions or you would like additional information, please contact Lindsey ___________ directly at ___________. Thanks!

Sincerely,

————————

Here’s to hoping this works.


Sex Therapist Redux

I got a voicemail yesterday from the sex therapist I saw in March.  She was calling to see if I’d like to make another appointment, which was a nice gesture.  Not exactly the kind of thing I want a nice, recorded reminder of though.  I’ve been neglecting those “emotional strides” that I promised myself I’d make, just because I’ve been dealing with that OTHER chronic pain issue that my stomach has goin’ on.  I’ve been dealing with gastroenterologists for a bit, which is a nice change of pace from the gynecologists.  I haven’t been up to going to therapy (or much of anything else, for that matter), unfortunately.

I did start back up with the topical medication that Dr. Levey prescribed last summer.  It’s a creme of lidocaine, aspirin, and one other thing–the label ripped when it was shipped from an NYC pharmacy.  It was minimally effective when I used it for a couple months last fall, but I stopped because it was such a burning, stinging, sticky, mint-scented mess that I got fed up with it.  I made myself a little sign that says ‘take the time’ mostly because I am bored and sick at home, but also because I had bright blue paper and needed a reminder to myself that it’s really worthwhile to put up with the burning.  And damn, does it burn.  I’m going to use it for a month and then test out it’s efficacy this time–no sex for a month shouldn’t be hard when I’m nauseated and my vag is minty and stinging, I think.


First Session.

I had an appointment with the campus sexual health therapist today. It wasn’t anything like what I had expected–but I’m not sure what that was. I guess all I was looking for was someone to acknowledge that I’m not crazy and that vulvodynia is really real and really something that real people really have. For real. I have so internalized that message that it’s “all in my head,” after all, doctors are supposed to be very smart and trustworthy, so it’s been very difficult for me to come to terms with this disorder as a real physical condition that afflicts other people too.

I didn’t get any admission that there are people at Cornell that have the same problem (you know, what with patient confidentiality and all that business), but it was good to talk to someone. She turned it mostly toward relationship issues, rather than the self-consciousness I was hoping to address. I’m not very forward with therapists. In any event, there’s a lot I need to say to the person I am dating–I’m going to try to leave him as a person out of this account as much as possible, as he does not yet know it exists. Also, I may eventually put up links in places where real life people could find them, and whoever knows me also knows him. Anyway. There’s quite a bit to be worked out. Most of the relationship advice was pretty commonsense, but thinking that I should start a conversation about my pain and how we should deal with it together and actually doing that are two completely different things. It was great to actually say some of these things out loud–like what boundaries should be set, physically and emotionally. I’m worried that when it comes down to it, I’ll continue to go about business as usual instead of actually trying to start that conversation. We’ll see.

The good part about talking to a sex therapist as opposed to a regular therapist is that the talk of intercourse vs. oral and orgasms and what hurts, exactly is very frank. I also have anxiety/depression issues, but have never been able to find one therapist who’s prepared or who I’m comfortable enough with to bring up all of these issues with. I’m not particularly over the moon for this particular sex therapist, but I feel like I could begin to connect the anxiety to the pain.

For now, I’m going to make more appointments “as needed,” seeing as how I don’t exactly have a ton of free time for my mental health. Which is a problem in and of itself.