dealing with pain and dysfunction

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.


Special Accomodations to Fully Participate…

I’m working on filling out all the paperwork for my internship program in NYC this summer, and there are an awful lot of health questions. Le sigh. There are about 28 people in the program with me (but we all work at different agencies), and we are all supposed to live in doubles. There is one grad student in the program who had a single. Then me and my cyborg-vag biofeedback-ing self came along and stole her single room so I could do physical therapy twice a day. I decided whether or not insurance covers my equipment, I’m going to be dropping the cash to get it, because I am so over this chronic pain thing. But I feel like a jerk for taking that poor woman’s room. I don’t know how old she is, but I’m sure she will not be amused by having to live with someone my age.

As far as other health issues go (now that I have a reader or two, I can apologize for getting off track), my doctors think I have gastrointestinal lupus. What the hell? Who gets lupus? Bah. I’ve been constantly nauseous for two months now, and I’m still having loads of tests done next week.

More on topic, I’ve been spotting this week, a full week before my period. I’m on the pill (until I get an IUD, yay!), and I have been for five years, (so spotting and irregularity, which never ever ever happens, so matter how sick/stressed I am) means something else bad is going on. I have to get a pelvic exam on Tuesday, which is terrifying. As you may be able to tell from previous posts, I have some serious pent-up gyno hate. That + nausea + PMS = unhappy girl on Tuesday. I am really not interested in having someone poke and prod and internally bruise me. Ugh, I am always sore for days after an exam. At least I got a really adorable cloth pad at, so I won’t have to have anything else invading me for the week. I’ll miss my cup though. It’s strange how an exam hurts but inserting a cup is totally fine–I guess it has something to do with being in control.

AimeeLynn (Because I’m not Competent with the Internets)

I just got the comment you left on my blog, and the pain you described sounds very familiar—a lot like the pain I experience.  I’ll tell you about what my issues are, and maybe you’ll get something out of it, I hope.

I am able to use tampons, though now I’ve switched to a diva cup (which has helped immensely, as I was allergic to commercial pads and tampons).  The cup insertion is just fine, and I am able to insert fingers or other objects okay as long as I do it carefully.  There is one spot on my left side about two inches in that hurts like crazy though, and because of that spot, I am unable to have intercourse and pelvic exams are awful.  My pelvic pain specialist determined that this was because I have little control of my PC muscles (pubococcygeal muscles, the ones you use to do Kegels) and that lack of control causes spasms when the muscles are touched in certain ways.  To remedy this, I have to do pelvic floor physical therapy.  I am supposed to go twice a week, though if you read my letter to the insurance company, you’ll know that it’s not working out.  At physical therapy, I am hooked up to a biofeedback machine by two sensors (like the sticky things they put on your chest during an EKG, if you’ve had one of those) and the machine monitors the electrical signals generated by my muscles.  There is also computer software that reads the signals and creates a real time line graph to show me what happens when I contract or relax the muscles.  The graph assigns a number to the amount of electricity—a “normal” person at rest would be about a one or two; when I am at rest, the graph shows about a 19 or 20.  Since I am so tense, it makes sex impossible (this is vaginismus, even though I am able to comfortably use a cup).  The point of physical therapy is to gain an awareness of what my muscles feel like and to learn how to relax them.  The few sessions I went to were extremely helpful, and I hope that I am able to continue (if my insurance will cover a biofeedback machine).  My specialist also prescribed a lidocaine/aspirin cream that has been somewhat effective, as long as I use it daily, no exceptions.  The problem with that is that the cream burns very badly, so it’s not exactly something that’s easy to incorporate into a daily routine.  I think that it works because the lidocaine forces the muscles to relax, and over time, I get used to it.

Anyway, that’s my story, and I hope that some of it is helpful.  Your pain does sound remarkably like mine, so definitely bring it up to a (competent and caring) doctor.  I wish you luck, and if you have any questions for me at all—I’m not shy, as you can tell—don’t hesitate to ask.

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!



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.