Friday, April 29, 2011

Part VI: Psychologist for Vulvodynia

Disclaimer/Warning: This post mentions specific sexual issues that some people may find too graphic, offensive, embarrassing, or personal. If you know me personally, you may feel awkward reading about these issues. Rest assured that if you are not embarrassed, I am not embarrassed. If you have any questions, feel free to ask.

This is my last post specifically dedicated to my struggles with vulvodynia and related issues. I hope that sharing my story has helped people better understand this rarely discussed disorder. To my sisters with vulvodynia, you are not alone!

Though I consider myself a well-adjusted person, I have seen my fair share of counselors and psychologists to help me through tough times. Whenever I saw someone in the past, it was because I sought that person out. My latest experience with a psychologist, however, was because the pelvic health center told me I should see one.

At first I thought they were implying that my vulvodynia was in my head (a knee-jerk reaction because I was once told by a terrible doctor to see a psychologist because there was no such thing as CFS...), but that is not what they meant. Their therapy focuses on the whole person, and working on the mind is merely one aspect.

I did not know what to expect from the psychologist they recommended. I needn't have worried, however, because the psychologist has been good for me. She's helped me deal with all kinds of emotions that surround vulvodynia, including guilt and shame. Turns out that not being able to have sex with one's husband produces all sorts of psychological issues. Go figure.

She's also helping me to deal with other issues related to my health, like dealing with chronic illness and coping with the horrible PTSD flashbacks I get every time I see and hear an ambulance ever since my anaphylactic reaction to a medication my old neurologist erroneously prescribed (long story, still too traumatized and angry to give all the details). Sorry about the run-on sentence just now.

Digging up all these emotional issues has been the epitome of "un-fun," but I think it is something I need to go through to be on my way to complete mental health.

Just as I haven't seen any direct improvements of the vulvodynia because of my nutrition change, I have not seen any direct improvements of the condition because of the psychologist. However, I suspect that my overall mental health is improving.


Joanne said...

An interesting and somewhat courageous post. This is something I have struggled with for some years although my ME/CFS turned out to be lyme Disease and on antibiotics I have made a significant recovery. Also this problem cleared up on antibiotics.
Now once more off antibiotics the Vulvodinia has yet again appeared ( It has each other time I stopped antibiotics too). I am trying to tell myself it is an inbalance and things will right themselves eventually but not really convincing myself here. I do remember listening to a presentation at the 2008 Lyme disease Action conference by Einsendle but sadly it was never downloaded to the website.Seems it is not an uncommon problem for patients with Lyme but then Lyme seems to get anywhere and everywhere causing inflammation whereever it goes.
Good luck finding some answers to the cause of yours.

alyson said...

Thank you for sharing your story, Joanne. It's amazing how many women have vulvodynia and other related problems. Unfortunately, it's just not talked about or researched enough. I wonder what the connection is between antibiotics and vulvodynia for you? Good luck to you, too.

jenji said...

Good Lordy!

Okay, now the similarities in our conditions are getting too weird.

Long story short, after a year of trying to diagnose my "down there" condition I was properly diagnosed (in fact I diagnosed myself and then found one of the very few specialists who deal with PNE a few hours from where I live, wherein he confirmed my suspicions after doing a very complete exam; his medical questionnaire was 15 pgs long) by the most wonderful pelvic specialist. I have pudendal nerve entrapment and neuropathy, not vulvodynia like my ex-gyno insisted. I have read of many other individuals with autoimmune conditions (especially cfids and lupus) who develop either the pudendal nerve issue, interstitial cystitis or vulvodynia. Far too many to be coincidence, as I think something is going awry with the CNS) There is a very specific approach to getting diagnosed properly. I went through Hell with ignorant gynecologists et al. trying to get help. I had a colorectal specialist who told me it was just hemorrhoid pain for three months and I endured ligation procedures for those 3 months, 6 to be exact, which if you have a pudendal nerve issue only exponentiates the pain by say 1000 percent; then, after I was out of hemorrhoids to band he insisted that I needed rectal surgery because I had a prolapsed rectum, which I was absolutely sure I did not, so I ditched his show. I kept telling him, can hemorrhoids hurt vaginally too and he'd say yes, and then I'd say well if this pain is what hemorrhoids feel like then they are highly underrated. I especially enjoyed the woman gyno who told me I had herpes, to accept and deal with it despite the fact that the blood results weren't back yet. I said, I don't have herpes, shouldn't we wait on the results and she insisted that I was in denial. Long story short, I do NOT have herpes, the test was "profoundly negative" so instead she gave me a sheet which detailed how to properly care for your vagina. Yes, for real. And no, I didn't get an apology. Ridiculous.

Her associate took a peek too and he insisted I had chronic yeast infections, which could be causing "the pain," which I knew was ridiculous bc I had never had a yeast infection in my life and I knew that there was no way that a yeast infection could cause such profound pain. He treated with Diflucan 3 different times and So, I finally insisted that they take a culture and sure enough despite having eyeballed my bits and proclaiming that I have a "wild yeast infection" the sample under the microscope was completely normal with no signs of yeast and in fact, "plenty of healthy bacteria." And so, I ditched his show as well after he threw a flyer about vulvodynia at me and then told me to "meditate the pain away." Yes, really.

Anyway, the pudendal nerve supplies function and sensation to the vagina, rectum, and bladder, as well as the bodily functions that apply to each.

So, just another thought on my part; sharing so as to possible cut down on the investigation time for another individual suffering with pain down south. You may already be aware of this condition, but if you aren't I would encourage you to read about it because once I found this site that described the condition I cried, as I realized I could have written the description myself and that I was indeed NOT crazy.

I take amitriptyline to calm nerve talk and I had a pudendal nerve block last December, which helped so much I can't even begin to describe the relief. Um, I could finally sit without wanting to shoot myself in the face from pain? yeah, that. I could um, wear jeans without pain? Yeah, that. There's no cure and surgery is still considered experimental and rarely solves the problem, so use of proper cushions, nerve chatter suppressors like Elavil/Cymbalta and nerve blocks are the current standard. There are only a handful of knowledgeable docs on this subject in the USA.

Check it out:


alyson said...

Hi jenji,

Thank you for sharing your experience and the info on PN. I certainly saw my own share of idiots before I found my current OB/GYN who told me about physical therapy for my pain. (I don't know if you saw those posts from March 2011.) One gynecologist told me to "stretch it out" and I'd be fine. Seriously?! Thankfully, the physical therapy my current gynecologist recommended has helped tremendously.

I am not quite pain-free yet, but the difference is amazing. Unfortunately, I have a history of weird reactions to different tricyclic antidepressants, so I generally avoid them. I haven't tried Cymbalta, though. If my pain doesn't continue to improve, I will definitely look into nerve blocks. Thanks for the info!

Anonymous said...

Hi Alyson!

I know that these posts are almost a year old now but I only just came across them now. I just want to say that I hope you continued to improve and that I hope you are now pain free!

My own problems started in March 2011 and I have also seen my fair share of doctors who told me that it was all in my head (my favorite bad comment so far was that sex is painful and I should just deal with it!). I can relate so much to the guilt and shame you described in your earlier posts! For me that was all compounded also by the doctors I have seen along the way and who have not taken me seriously!

Fortunately in Febuary this year I saw a gyno who diagnosed me with vulvodynia and recommended seeing a physiotherapist. It has been such a relief to get a diagnosis - finally it was no longer just in my head! I have also found that physiotherapy has helped me a lot and I have been wearing jeans for the first time in ages today. Unfortunately my vulval skin is still quite sensitive but I am hoping that things will settle down soon. How have you been getting on? I know it has been over a year since you started therapy so I would be really interested to hear how you are now!

Just in case you are interested, I have found the following website tremendously helpful and consoling!

Best wishes

alyson said...

Hi Robin! Thanks for visiting my blog and sharing your story. I can't say I'm shocked by the responses you received. One doctor told me to just to "stretch it out." Ugh.

I have been improving, but unfortunately I'm not pain free...yet. I do continue to have hope! I'm glad you've been able to find a doctor who took you seriously and a therapist that is helping. Thanks for the link. Best of luck!