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.
Showing posts with label vulvodynia. Show all posts
Showing posts with label vulvodynia. Show all posts
Friday, April 29, 2011
Monday, April 25, 2011
Part V: Nutritionist & Turning Point
On my first visit to the pelvic health center they suggested that, in addition to going to treatments at their facility, I see a nutritionist and a psychologist. They explained their center uses an holistic approach to healing. After I got past the "so you think I'm fat and crazy" reaction (sorry, but this is really how I felt at first), I realized that it couldn't hurt for me to follow their advice. It could even be a good thing.
I have lost 14 pounds since February, 8, 2011. That's 14 pounds in 11 weeks! What's even better is that I have not been on a diet of deprivation (i.e., starvation), nor have I had to go hungry or eat just small bits of "rabbit food" (i.e., tiny salads). I am eating as much food as I want (without overeating), and I am still losing weight. The trick is that I have changed what I eat.
As I mentioned in a previous post, PCOS and Pre-Diabetes, I was diagnosed with insulin resistance in January as a result of my PCOS. I started taking a medication called metformin to help with the condition, but I did not really see any results after a month.
Even before my first appointment with the nutritionist, I started a new diet program in February (they actually call it a "lifestyle change") through my work. The basic concepts I took away from the program were to:
I saw my nutritionist a couple weeks after I started the above program. He agreed that I should not be eating any sugar. He also strongly believed that many of my problems were rooted in gluten sensitivity. Though skeptical at first, I embarked on a gluten-free and casein-free diet. (See my post Gluten-Free Me?! And Casein, Too? to read about the start of my gluten-free diet.) In my second appointment with the nutritionist, he gave me a personalized diet and supplement plan.
The main points I've taken away from my nutritionist's plan for me are:
Embarking on this "extreme diet" has been easier than I anticipated. Don't get me wrong, it's been challenging and sometimes maddening; but it's been worth it. I think I was just so desperate to start feeling better and so tired of being sick and tired for so long, that I was ready and willing to make such a big life change. It took me about 8 weeks before I started to feel a big difference, and now that I am seeing so much improvement, I don't want to stop. I see the light at the end of the tunnel. For the first time in a long time, I am starting to believe that I will get better.
Interestingly, because my genetic test showed that I had two copies of a gluten sensitivity gene, it meant that both my parents gave me the gene. I told my parents about my results, and they decided to go gluten-free, too. Incidentally, they are feeling better on a gluten-free diet.
I can't say that my healthier eating habits have directly helped my vulvodynia, but they have certainly helped so many other aspects of my health. I'm amazed.
I have lost 14 pounds since February, 8, 2011. That's 14 pounds in 11 weeks! What's even better is that I have not been on a diet of deprivation (i.e., starvation), nor have I had to go hungry or eat just small bits of "rabbit food" (i.e., tiny salads). I am eating as much food as I want (without overeating), and I am still losing weight. The trick is that I have changed what I eat.
As I mentioned in a previous post, PCOS and Pre-Diabetes, I was diagnosed with insulin resistance in January as a result of my PCOS. I started taking a medication called metformin to help with the condition, but I did not really see any results after a month.
Even before my first appointment with the nutritionist, I started a new diet program in February (they actually call it a "lifestyle change") through my work. The basic concepts I took away from the program were to:
- cut sugar intake -- no sugar in the first few weeks of the program, then in moderation after that; when having anything with sugar, it must be with a meal that includes protein (this helps the blood sugar and insulin levels from spiking)
- eat protein at every meal -- protein will keep you from feeling hungry for longer periods of time
- keep the size of your stomach in mind -- while the program did not focus on portion control, it explained that the human stomach is naturally about the size of a loosely held fist; somehow knowing my stomach really isn't that large keeps me from eating too much
- eat more slowly -- eating slowly will naturally cause you to eat less because your brain will feel satisfied sooner
- stop eating when satisfied -- which is before you have overeaten
I saw my nutritionist a couple weeks after I started the above program. He agreed that I should not be eating any sugar. He also strongly believed that many of my problems were rooted in gluten sensitivity. Though skeptical at first, I embarked on a gluten-free and casein-free diet. (See my post Gluten-Free Me?! And Casein, Too? to read about the start of my gluten-free diet.) In my second appointment with the nutritionist, he gave me a personalized diet and supplement plan.
The main points I've taken away from my nutritionist's plan for me are:
- No gluten
- No casein (milk-derived products, including butter, creamy dressings and sauces, etc.)
- No sugar -- in addition to the obvious, this includes fruit drinks, fruit jams/jellies/preserves, and random food items with sugar added (reading food labels is more important than it used to be); I am allowed to have dessert about half a dozen times per year on very special occasions (such as my birthday, my husband's birthday, and special holidays)
- Eat more veggies and less fruit -- fruit contains so much sugar that it can act like a dessert and spike sugar and insulin levels; if I eat fruit, it is always as part of a meal along with a protein and healthy oil
- Eat the three macronutrients at every meal or snack -- protein, healthy oil high in omega-3's (like olive, almond, or avocado), and a complex carbohydrate (like spinach, other veggies, beans, etc.)
- Take supplements -- he gave me a pretty extensive list, but the most significant change was to take huge amounts of pharmacy-grade omega-3 fish oil (interestingly, I was already taking most of the supplements the nutritionist recommended; I will list my current supplements in a future post)
Embarking on this "extreme diet" has been easier than I anticipated. Don't get me wrong, it's been challenging and sometimes maddening; but it's been worth it. I think I was just so desperate to start feeling better and so tired of being sick and tired for so long, that I was ready and willing to make such a big life change. It took me about 8 weeks before I started to feel a big difference, and now that I am seeing so much improvement, I don't want to stop. I see the light at the end of the tunnel. For the first time in a long time, I am starting to believe that I will get better.
Interestingly, because my genetic test showed that I had two copies of a gluten sensitivity gene, it meant that both my parents gave me the gene. I told my parents about my results, and they decided to go gluten-free, too. Incidentally, they are feeling better on a gluten-free diet.
I can't say that my healthier eating habits have directly helped my vulvodynia, but they have certainly helped so many other aspects of my health. I'm amazed.
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.
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:
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!
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:
- Purchase a particular relaxation CD. The particular CD's they recommend help women relax every part of their bodies, including pelvic floor muscles.
- 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.
- Make an appointment with a particular nutritionist with the hope that I would adopt a diet that could help my prediabetes and IBS symptoms
- Make an appointment with a particular psychologist to deal with all the emotional issues surrounding my health.
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!
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:
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.
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:
- Lidocaine to numb the pain with the hope that I would be able to tolerate sex.
- Physical therapy.
- Surgery to remove the inflamed areas.
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.
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.
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