Sunday, March 27, 2011

Part IV: Physical Therapy for Vulvodynia, Continued

I probably should have explained why I was so prolific earlier this month. I had a week off from work, which is why I was able to write daily. Now that I'm back at work, I don't have nearly as much mental or physical to write. I'm also coming off a crash from about a week ago. I'm fighting a sore throat, low grade fever, and extra weak muscles. Bleh.

Disclaimer/Warning: This post contains a frank discussion about specific female organs and 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.

I go to physical therapy about two to four times a month -- which amounts to once a week to every other week. The entire staff at the pelvic health center is made up of women, so I feel comfortable going. My physical therapy utilizes a combination of biofeedback, physical therapy, and relaxation techniques. I'm sure there's much more involved, but this is the only way I know how to explain it. I see two different people at the pelvic health center -- a biofeedback specialist and a licensed physical therapist. I meet with the biofeedback specialist more often than the physical therapist.

I am not a doctor or researcher, so I do not entirely understand the mechanisms of biofeedback. I am going to explain my therapy the way I see it. I apologize in advance if anything I say turns out to be incorrect. Here are some articles about biofeedback for vulvodynia that include history and research.

The biofeedback specialist inserts a probe into my vagina, which measures the activity of my pelvic floor muscles. I am able to see my muscle activity charted in the form of a continuous line graph on a computer screen. The specialist walks me through a series of kegel exercises (usually used to help people with urinary incontinence), which allows me to view my muscle activity on the screen. I can "see" the contraction and relaxation of my pelvic floor muscles.

I am supposed to focus on how I feel when my muscles are relaxed and work on keeping them that way all the time. After the kegel exercises, the biofeedback specialist will often play a relaxation CD so that I can focus on relaxing my entire body including the pelvic floor muscles (which, if you'll recall, I was constantly contracting). Between the relaxation CD and watching my muscle activity on the computer screen, I am somehow able to make my pelvic floor muscles relax even more. It's pretty amazing.

The physical therapist focuses on my whole body. She makes sure my pelvic floor muscles, head, neck, back, and legs are all aligned and working properly. If there is tension in a particular area she will massage the area and/or give me specific stretches or exercises to do. When she works on my pelvic floor muscles, she inserts a gloved finger into my vagina to massage and stretch the muscle walls. The procedure is uncomfortable because of the stretching. There is some pain involved, but the therapist is careful to use less pressure if I can't tolerate it.

In addition to the biofeedback and physical therapy, I also have a set of vaginal dilators that I use at home. They come in sizes XS, S, M, and L. The idea is to start at the smallest and work up to the largest as I am able. When I first start a new size, it can be very uncomfortable and involve some minor pain; however, as I have progressed in biofeedback and physical therapy, I have been able to do better with the dilators.

I have been in therapy for about two months and have made significant progress. During my last period, I was able to use the largest tampons without pain. While this is something many women take for granted, I consider it a major milestone.

In my last post about vulvodynia, I'll write about the nutritionist and psychologist the pelvic health center recommended for me.

Sunday, March 20, 2011

Part III: Physical Therapy for Vulvodynia - 1st Visit

Disclaimer/Warning: This post contains a frank discussion about specific female organs and 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.

As I mentioned in  Part II: Vulvodynia Treatment Options, I found the idea of physical therapy for my vagina quite odd. I'd heard of going to physical therapy for nearly every other part of the body, but for a vagina? Seriously?!

My wonderful gynecologist talked about physical therapy in a very matter-of-fact way. She explained that what I had was a medical issue that needed to be resolve in a medical way. Though an obvious explanation, it helped me to hear it come from a doctor because I'd spent years emotionally beating myself up over this. The doctor then went on to tell me that she had another patient who had not been able to have sex with her husband of 10 years whom she'd referred to the physical therapy place who was now pregnant.

I started to have a little hope.

I scheduled an appointment for my physical therapy with the pelvic health center my doctor recommended. I had no idea what to expect, but my imagination ran wild. I imagined everything from medieval torture devices to kinky sex toys. Fortunately, my treatment turned out to be something closer to the middle. Their entire practice is devoted to helping women improve or entirely overcome various types of pelvic issues -- from incontinence to vulvodynia, and they treat every patient with understanding and dignity.

My first visit involved a long medical history form and interview with the center's director. She explained the center's holistic approach to therapy. She said that they see many women like me and are usually very successful in treating my particular condition. The director mentioned the same patient my gynecologist had told me about before -- the women who had not been able to have sex with her husband of 10 years who was now pregnant (the woman, not the husband).

I felt encouraged.

Many women that come to the practice are out of balance in some way -- whether nutritionally, hormonally, physically, psychologically, or all of the above -- and they like patients to address all their issues. Interestingly, no one in the practice was surprised to see my long list of health problems. I can only assume that quite a few people with multiple chronic illnesses are patients here.

After I finished meeting with the director, I met with one of the physical therapists for my initial evaluation. I felt a lot of apprehension at this point because I knew this was the time I would have to drop my pants. Evaluation involved (painfully) inserting a narrow probe that would measure my pelvic floor muscle activity and sticking what looked like EKG electrodes to my stomach to measure my abdominal muscles.

Turned out that I was constantly contracting my pelvic floor muscles, which meant nothing was getting in there very easily. The physical therapist was pretty shocked at how strongly my muscles were contracted; she said it was one of the worst she'd seen. She also said they'd been able to help women with as serious a problem as I had.

I started to have a little more hope.

After the initial measurements were done, the therapist recommended I do four things:
  1. Purchase a particular relaxation CD. The particular CD's they recommend help women relax every part of their bodies, including pelvic floor muscles.
  2. Purchase a particular set of medical vaginal dilators. The kind the center recommends are primarily used in hospitals for women who have had cervical cancer.
  3. Make an appointment with a particular nutritionist with the hope that I would adopt a diet that could help my prediabetes and IBS symptoms
  4. Make an appointment with a particular psychologist to deal with all the emotional issues surrounding my health.
At first I was mildly offended they thought I needed a nutritionist and psychologist because I thought I was already a pretty healthy eater and was dealing pretty well with my issues, thank you very much. However, I had already decided I was going to follow their program because of all their experience, so I made the appointments. I'm glad I did. I'll talk about the nutritionist and psychologist in a future post.

I knew that going through this process would be a financial investment (i.e., expensive), but my husband and I decided that we would go for it and would put everything on our credit card if we had to. Amazingly, my medical insurance covers most of the costs of my treatment.

Well, it turns out that explaining everything has taken much longer than I anticipated, so I will have to do a Part IV (and maybe Part V) to talk about subsequent appointments. Until then, think good thoughts!

Saturday, March 19, 2011

No More Cheese or Yogurt!

I know I promised to talk about my vulvodynia treatment in this post, but something came up that I wanted to write about. As I mentioned earlier this week, I'm working on cutting not only gluten from my diet but also milk products because of a possible casein (milk protein) intolerance. I already know that I have lactose (milk sugar) intolerance.

For over a month, the only milk products I had were what little milk product might be in fake butter, certain potato chips (sour cream and onion flavor), and salad dressings (usually Caesar). It's important to note that I did not have the above products very often.

Well, the last couple of days I had some serious milk products...and I'm paying the price.

Two nights ago, my husband and I had a lovely homemade dinner of tilapia, asparagus, and baked potato. In the past we have substituted plain yogurt for sour cream because we thought yogurt to be healthier than sour cream. That night was no different. We put plain yogurt on our potatoes. A couple hours after dinner, I had stomach pains and diarrhea. However, I did not connect the yogurt to the stomach problems until the next evening.

Last night we went to a Mexican restaurant for dinner and ordered queso (cheese dip) for our chips. Big mistake. I felt fine all through dinner, but I started to feel nauseated on the drive home. By the time we got home (about two hours after having the queso), my stomach was bothering me even more. Sure enough. Diarrhea. About 10 minutes later, I vomited from the nausea.

If I had not had a problem the night before, I might have blamed food poisoning on my stomach issue after the Mexican restaurant. However, because of the timing of things, I was pretty convinced that my problem was yogurt and cheese. So convinced, in fact, that I ate my leftovers (minus the cheese) for lunch about six hours ago and feel fine.

New Note (5/1/11): I found out today that some restaurants use queso that includes gluten. No wonder I had such a violent reaction. My body was reacting to gluten, casein, and lactose!

In addition to the gastrointestinal issues last night and the night before, my eczema has flared up quite a bit. I even developed a new area of rash just under my right ear. Hmmm...sounds like an allergic reaction to me.

I can't remember if I included links to the differences between lactose intolerance and casein intolerance in my gluten post, but eczema or skin rashes are common symptoms of casein intolerance. Diarrhea can be a symptom of both lactose and casein intolerance.

I am officially cutting out cheese and yogurt now. Before, I was generally avoiding it but not actively cutting it out of my diet. I don't know if that last sentence made any sense, but I'm leaving it in anyway! :)

Friday, March 18, 2011

Part II: Vulvodynia Treatment Options

Disclaimer/Warning: This post contains a frank discussion about specific female organs and 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.

For the sake of simplicity, I will often refer to my pain problems as vulvodynia rather than listing the exact problem.

As I mentioned in my last post, I was diagnosed a little over a year ago with vulvodynia. I told my gynecologist that I wanted to be able to enjoy sex with my husband and have children sooner than later (I'm in my 30's). My gynecologist suggested three options for my problem:
  1. Lidocaine to numb the pain with the hope that I would be able to tolerate sex.
  2. Physical therapy.
  3. Surgery to remove the inflamed areas.
I immediately ruled out surgery because (a) the idea of any kind of surgery to cut out parts of my vagina sounded horrible and (b) my body has a habit of not healing very well anyway. I thought physical therapy seemed weird, so I nixed that idea, too.

I decided to go with the simplest plan -- lidocaine.

I tried the lidocaine a few times, but it didn't work for me. It seemed to irritate my already sensitive skin, and the vaginismus (involuntary muscle spasm) was just too strong.

Around the time I got diagnosed with vulvodynia, I was MISdiagnosed with epilepsy. Being able to enjoy sex with my husband suddenly became a low priority again compared to dealing with my new, more serious diagnosis. As you may already know, the epilepsy fiasco lasted for nearly a year before learning that I don't actually have epilepsy. If you are new to my blog, you can read my entries from 2010 to learn more about the misdiagnosis.

Once the epilepsy issue was behind me, I started to focus on other issues that had taken a backseat. A few months ago, I saw my gynecologist for my annual exam and told her that the lidocaine was not helpful. She suggested physical therapy as my next option and surgery as a last resort. I decided to go with physical therapy.

Even though going to physical therapy to fix my vagina sounded ridiculous, I had reached the point that I was willing to try it. My husband and I want children, and I'd like to try the old fashioned way before using any other (often expensive) methods to get pregnant. Of course, our having children also depends on my getting healthy enough to care for any, but I'm trying to be an optimist.

My next post will discuss what physical therapy for vulvodynia involves and how I am doing now.

Thursday, March 17, 2011

Part I: The Pains of Vulvodynia

Disclaimer/Warning: This post contains a frank discussion about specific female organs and 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.

Another problem that many women with ME/CFS have is vulvodynia -- or chronic vulvar pain (i.e., pain in the female nether regions). Not surprisingly, I have this condition.

First, some definitions from MedlinePlus, Mayo Clinic, and the University of Iowa. I picked these particular websites and definitions because they made things easy to understand. The terms I am defining are conditions I have, according to my gynecologist and the pelvic health center I visit for treatment.

Vulvodynia (vŭl′vō-din′ē-ă): chronic vulvar pain.

Vaginismus (ˌvædʒɪˈnɪzməs, -ˈnɪsməs): an involuntary spasm of the muscles surrounding the vagina. The spasms close the vagina.

Dyspareunia (ˌdis-pə-ˈrü-nē-ə, -nyə): painful intercourse.

Vulvar Vestibulitis (ves-tib′yū-lī′tis): a condition which causes redness and pain of the vestibule; an inflammation of this skin and the mucous secreting glands found in the skin.

I was diagnosed with all of these conditions by my gynecologist a little over a year ago, but it is only recently that I decided to really focus on these issues.

In hindsight, I have had vulvodynia and vaginismus as long as I can remember. As a teen, I could not use tampons because of the pain, and my annual gynecological exams have always been excruciating. I have had dyspareunia since becoming sexually active, and I only learned of my vulvar vestibulitis when my gynecologist observed inflammation and redness of unknown origin.

My husband and I have been married for almost six years, but we have pretty much not been able to have sex successfully. (My definition of successful sex would be sex that I enjoy with full penetration without any pain.)

This issue is chock-full of spin-off issues. As you might imagine, the emotional toll is quite immense, as self-esteem, intimacy, and relationship issues flow abundantly. Of course, the physical toll is not a piece of cake either. The pain could be so terrible that it felt as though someone was pouring boiling water into my vagina while stabbing me with a serrated knife in the same place. I apologize for the graphic description, but I feel it is important for me to educate people who do not understand how debilitating this condition can be.

One of the main reasons I went so long without addressing my pain problems was because I was wrapped up with the rest of my health. In the grand scheme of things, being able to have sex seemed lower on the list compared to all my other chronic health problems that reared their ugly heads on a daily basis.

The other reason things went on so long is because my previous gynecologist did not believe I had a real problem. I told her of my issues on every visit, but she just kept telling me to "go more slowly," "use more lubrication," and "stretch it out." She blamed my problems on my lack of sexual experience. I believed her, so I kept making an effort. Eventually, the pain became excruciating. Little did I know that forcing it made things worse. 

I have to take a moment to mention what a wonderful husband I have. I suspect that there are not many young marriages that would survive chronic illness and little sex.

Fortunately for me, my previous gynecologist retired, and I got one who is very knowledgeable about pelvic pain. When I told my new gynecologist about my problems just over a year ago, she immediately diagnosed me and assured me that it was not my fault. She told me that I had a real medical condition and that it was not a matter of simply using more lubrication or "stretching it out." Imagine my relief to know it wasn't all in my head. (This situation reminded me of my CFS diagnosis.)

In my next post, I'll discuss the treatment options my gynecologist offered to me.

Wednesday, March 16, 2011

Gluten-Free Me?! And Casein, Too?

Yet another issue that people with ME/CFS often battle is irritable bowel syndrome (IBS). I certainly have digestive issues. I've been diagnosed with IBS and acid reflux; I also have a range of nutritional deficiencies (vitamin D, iron, B2, CoQ10, glutathione) that I treat by taking supplements.

I alluded in a previous post that I am currently on an "extreme diet." I'm in the process of going gluten-free. For a cereal, bread, cracker, pasta, and dessert lover like me, going gluten-free is extreme.

Not long after I cut sugar from my diet, my physical therapist (I'll explain why I have a physical therapist in a future post) recommended that I see a nutritionist. The nutritionist the therapist recommended thought I had quite a few gluten intolerance symptoms. I told him that I had already been tested for celiac disease because my old gastroenterologist also thought I had celiac symptoms. In the absence of a positive celiac disease blood test, my gastroenterologist had diagnosed me with IBS.

The nutritionist was still convinced that I had a gluten sensitivity because of all my symptoms, so he suggested I go on a gluten-free diet. He said I could also get a genetic test done if I wanted, though he was pretty convinced it would come back positive for gluten sensitivity. After my epilepsy experience, I'm not inclined to believe what so-called experts tell me just because it seems to make sense. I decided to get the test.

I had the test done, and it took about three weeks to get the results. According to the results, I carry a duplicate set of genes that predispose me to gluten sensitivity. The company emphasizes that carrying a gluten sensitivity gene does not mean that a person will definitely develop gluten sensitivity or celiac; however, it does mean the person has tendencies toward those conditions.

The test was relatively inexpensive for a genetic test ($149 plus shipping, as of Feb 2011). The reason the company is able to provide lower costs is because they cut out the middleman. Patients order the test directly from the company (no doctor's orders needed), collect the genetic material (cheek swabs or stool collection) themselves, and mail it back to the company. They also do not accept insurance; however, they do provide a form that patients can submit to insurance companies. I submitted a claim to my insurance company, and they counted the payment toward my out-of-network deductible.

To be honest, I still hold a little bit of skepticism because this company's techniques are questioned by some "experts" in conventional medicine. Yet, if I'd listened to all the conventional medicine "experts" I've seen over the years, I might still be bedridden from my ME/CFS as I was eight years ago. I credit a combination of conventional medicine, alternative medicine, and thinking outside the box with getting me to where I am today -- a fairly high functioning person with ME/CFS. I digress.

The nutritionist also said that going on a gluten-free diet helps a lot of people feel better even if they are not technically gluten-intolerant or gluten-sensitive. I actually started on my gluten-free diet before getting my test results, so it has been a few weeks. I figured I had nothing to lose. If I felt better, it really didn't matter what the results said. If there was no change in how I felt, I could go back to my gluten ways.

I am not yet 100% gluten free, but I have cut out cereal, bread, crackers, pasta, and anything else that is an obvious offender. I have not yet cut out foods with hidden gluten (e.g., certain sauces, dressings, and soups), but that will be my next step. Since I am making a life-long change, I am doing it in phases so that I can be as compliant as possible.

I must admit that I seem to be feeling somewhat better, though I'm told it can takes months of being 100% gluten free before a person notices any major results. As an added bonus, cutting the heavy-hitter gluten products (a.k.a. big-time carbs) in addition to sugars has helped me to lose a total of 10 pounds in about five weeks with diet alone (i.e., no exercise).

Based on my symptoms, the nutritionist also thinks I have a milk protein intolerance -- more specifically a casein intolerance. I have stopped drinking milk (I would occasionally add milk to cereal or oatmeal even though I am lactose intolerant!), eating yogurt, and having cheese as a snack. I am not casein free yet because I still eat creamy dressings and other products with milk-proteins, but cutting out the biggest offenders seems to be helping. At some point, I plan to get tested for casein intolerance. I'm the kind of person that needs multiple sources of evidence before I buy into something.

As I mentioned before, I am making changes to my diet in phases so that I have time to adjust before the next big elimination. Wish me luck!

Oh, if you're wondering what company I used, it was EnteroLab. I have no connection to this lab, so I don't know if they ship internationally.

P.S. I just found this online discussion about EnteroLab and the validity of their results. It convinced me even more to keep up my gluten-free endeavor.

Tuesday, March 15, 2011

Helping Others

Disasters like the one in Japan remind me that I am fortunate to have a food, water, and shelter. No matter how challenging things get for me, I am still in a position to help others. Because I am not able to volunteer or give blood, I donate money. Even $10 can make a difference.

Here are some organizations that help people in need (the US organizations have international counterparts):

American Red Cross:
Doctors Without Borders:
Oxfam America:

In addition to helping people in Japan, these organizations are working on relief efforts in North Africa and the Middle East, Haiti, and other projects throughout the world. If you prefer to help those in need in your own country, there are plenty of local charities that accept donations.
Before you donate any money, make sure you are donating to a legitimate organization. Please do your homework. Watch out for fake charities. Here's an article that gives advice about making donations: "Donate to Japan tsunami victims, not scammers: How to avoid frauds set up to snare charitable dollars aimed at Japan." Even though the article is directed at Japan programs, the information can apply to any charity.

Monday, March 14, 2011

PCOS and Pre-Diabetes

After more than one blood test result came back with high cortisol levels months after I'd stopped taking steroids (to treat my allergic reaction to an epilepsy medication), I decided to see an endocrinologist. I still had some Cushing's syndrome-like symptoms -- particularly excessive weight gain in my stomach area -- so I wanted to find out if I had some sort of underlying endocrine problem.

I saw an endocrinologist in January. She took my meidcal history and ordered a full blood work-up and 24 hour urine collection. I was surprised by the results.

My cortisol levels were completely normal. However, based on my Hemoglobin A1C result of 6.4 (standard range is 4.0 - 5.6; higher than 6.5 means diabetes), the endocrinologist diagnosed me with prediabetes. She said is was a result of my Polycystic Ovary Syndrome. Additionally, my maternal grandmother developed Type 2 diabetes, so there is also a genetic component at play.

The reason this particular diagnosis took me by surprise is because I've had my glucose levels tested before, but the levels have always been normal (in the 80's).

It is well documented that prednisone raises blood sugar levels. I believe that the high levels of steroids I took for so long triggered my insulin resistence. The doctor put me on metformin, a diabetes medication which is also commonly prescribed for people with PCOS.

About a month after I started taking metformin, I had not lost any weight (something I was hoping for). I decided I needed to take more "drastic" actions, so I cut out sugar from my diet. I stopped eating sweetened food and drinks -- that is, desserts, sweetened snacks, sodas, and other drinks with sugar added (like sport drinks).

I really wanted to lose the extra weight I had gained over the past year. The first couple of weeks were hard, but I'm pretty much used to it now. I think what made the diet easier to stick with was that I did not cut out any other foods.

What's amazing is that just by cutting out all sugar products, I lost 4 pounds in the first week.

Since then, I've lost another 6 pounds (that makes a total of 10 pounds so far!). However, I've made a more serious diet change. I'll talk about my new extreme diet in a future post.

Note added at 3:15pm on March 14: It's interesting how many women with ME/CFS have PCOS or other female issues. I wonder what the connection is...

Sunday, March 13, 2011

A Recap of 2010

So much has happened in 2011 that I wish I'd been blogging this whole time. Better late than never, I suppose!

First, a recap.

If you read my blog last year, you may remember that I started the year on short term disability as a result of complications from a lumbar puncture. While I was on short term disability, I was MISdiagnosed with epilepsy and was put on a series of anticonvulsant drugs that did a number on my body.

In addition to weight gain, hair loss, extreme weakness, tremors, mood changes, headaches, nausea, dizziness, and other truly unpleasant symptoms, in May I experienced anaphylaxis due to one of the medications and ended up being rushed by ambulance to an emergency room. I thought I might die. I was administered high doses of epinephrine, antihistamines, and steroids. That event began my second period of short term disability in 2010.

Because of the insanely high amounts of steroids that had to be pumped into my system to counteract my body's immune system reaction, I suffered from Cushing's syndrome symptoms. I suffered from high cortisol levels and had awful weight gain particularly around my middle (I looked a few months pregnant), face, back, neck, and clavicle area. My body was a mess, yet I was put on another anticonvulsant for my MISdiagnosed epilepsy.

I spent much of the rest of 2010 struggling with my Cushing's syndrome symptoms while on anticonvulsants. I became so weak that I felt I'd had a major setback in my ME/CFS. My life was miserable. Due to my worsening health, I was forced to change jobs because my job at the time was becoming too physically demanding.

I'm sure I'm leaving things out, but I can honestly say that 2010 was one of my most challenging years ever.

I don't mean to end this post on such a downer, but I wanted to recap before I wrote about what has happened since. I will post again this week.