Growing up, as you already know, I had no treatment provided to me for my vulvodynia. I really doubt that at that time it was even recognized in the health field as a "real medical problem". Well times have changed and at the young age of 27, I am now being treated. I have already traveled a long road of "trials and failers" just in the past year that I was diagnosed. Maybe my treatment list would give another lady out there some ideas that may work for her.
Treatment For Vulvar Vestibulitis/Vulvodynia As Follows:
I started out on Estrogen Cream to thicken the skin. Did not help.
Then tried Lidocaine Cream (Low Level) to numb the pain. Did not help.
Then moved on to Lidocaine/Estradiol Cream, this cream actually was a compound cream and I think it did help. (It was either the cream or never having sex that took away the pain of sex ;) ) I have a small amount of vestibule pain, but not nearly as much.
Ice pack. Did not help and brrrrr...
Gene's Vitamin E lotion to soothe the pain. Did not help. (If interested in this, only $8 in Sam's Club)
Crisco, yep you read that right, Crisco. Did not help. This will form a thick barrier to help with irritation for some ladies.
Benadryl for the uncontrolled itch. Kinda helps by putting me to sleep. I have the cream and the pill. The pill knocks me out and the cream doesn't help that much.
Vibration Therapy. Yea you guessed it, therapy with a vibrator. I could sit there for hours doing this and all it does is makes me numb, a painful numb. Like everything down below is going crazy tingling numb and not a good tingle!! It is supposed to help fight back those nerve responses that are from my neuropathic pain. Did not help.
Deparon pill. Did not help. Made me crave sugar, 24/7.
Propanolol pill. This medicine does help to slow down my anxiety (heart rate) so hopefully it is helping to loosen my pelvic muscles in the process.
Heat from the hair dyer. Yes, I'm willing to try anything, which this does help some times.
My doctors have also put me on Ortho-Tricyclen Lo and I never take the blue pills. I try to skip all cycles due to the fact that they make life hell, I cannot insert a tampon and pads cling to your skin. All a bad combination for vestibultis.
Slippery Stuff lube. Did not work. Made me feel so weird inside but it is a water-based lubricant if anyone is interested.
Physical Therapy. It is a working process so I have high hopes for a positive outcome and my therapist is awesome!! Emily at CAWH in Raleigh, NC; she is amazing!!
I am now supposed to be on Lyrica but it's so expensive. I will update on this on a later date.
Just so we all know, my VVS has cleared up or so it seems. I do still have a little soreness but nothing like before. The doctors all agree that my skin looks very healthy, so that is wonderful! I still have the horrible itch (vulvodynia) that never disappears but my doctors believe that it is neuropathy pain that was brought on from the catheterization at a young age.
I still have a list of things I am still supposed to be using. A mini shower, a dilator kit, Mind and Body Workbook, medicine ball and I am sure there are a few more things that I have already forgotten.
So with all this being said, I have had to sit down today and come to terms with how much this is costing me and my family. My husband is already stressed about how we are going to keep affording all you see above, my sons schooling, food, electric, mortgage, etc. After tallying everything up, I fork out over $210 a month on my treatment. To some that may not be a lot, to us it's a fortune. I now have to decide which road to take. The road to healing, yet feeling like a test rat and maybe never coming out of this pain free or the road to dealing with it without treatment. I have been on this road of just dealing with it all my life so really is it going to change anything for me. I still suffer, I have zero improvement with the itch and we are broke. So my next decision will be to drop the curtains or keep the show going...
Tuesday, October 4, 2011
Wednesday, September 28, 2011
My Story - Part 4
I had to take a break after the last post. I'm back now and ready to tell you my final stage. The stage I am in now. I'm keeping my fingers crossed that this is my final stage so I can close this chapter and start fresh.
So a few years have passed now since my third trauma, 9 years to be exact. I am now married to a wonderful man and have two very beautiful children. My final part began after the birth of my daughter, my second child. My pregnancy went by just fine. I ended it the same as my first one, with preecalmpsia. She was born and she was healthy and that was all that mattered. At my six week checkup I had already informed my OBGYN that I was having EXTREME pain with sex and inserting tampons. Pain so bad that I was crying. During the check-up she asked if I had natural birth or a c-section. I had a c-section, but she swore that I looked as if I had just went through a natural delivery. Inside of me, I had a quarter-size blister, almost hole, that had formed and I was very inflammed. She started me on estrogen cream to thicken my internal skin. The estrogen did fix that spot inside of me after a couple weeks but I was still having intense pain if touched. My OBGYN then referred me out to UNC hospital to Dr. John Steege. I was then seen by him (which I highly recommended him to anyone suffering from vulvar vestibulitis in North Carolina) and he said that I had a mild form of vulvar vestibulitis. I was given a compound cream, Estridal and Lidocaine, and told to try Gene's Vitamin E lotion to relieve discomfort and start physical therapy. After a year of using the compound cream, physical therapy and MANY trials with relief care, my vestibulitis has improved. Well enough to not have to even use the cream anymore. What wonderful news!!! The pain with sex and tampons is gone, all better, the vestibulitis is GONE!!!
Well actually let's back-up...
I forgot to mention that during all this I started to develop that itch again. Yes, the itch has returned. The dreaded, life altering itch that controlled my younger days is back and stronger than before. What a disappointment. It took months before I finally was switched over to the Vulvar Pain Center at UNC, but it was well worth the wait. My first appointment was yesterday with Elisabeth Johnson... I truly believe that she is an angel. She is the first person that has dealt with me that understands me. She made me comfortable, she told me things about myself that I didn't even know and she has given me hope. She has told me what she expects of me and told me that she WILL make sure that I achieve all my goals that I had started and never was able to finish. She told me that I have to heal from this and everything else that has happened to me because, well, who else is going to teach my little girl how to be a strong, independent woman.
I now know that what I am dealing with is a nerve issue. Who would have guessed that a nerve could make you itch so bad. I cannot explain to you yet how it all works, I hope to be able to eventually; remember this is a journey and we are all learning together.
So a few years have passed now since my third trauma, 9 years to be exact. I am now married to a wonderful man and have two very beautiful children. My final part began after the birth of my daughter, my second child. My pregnancy went by just fine. I ended it the same as my first one, with preecalmpsia. She was born and she was healthy and that was all that mattered. At my six week checkup I had already informed my OBGYN that I was having EXTREME pain with sex and inserting tampons. Pain so bad that I was crying. During the check-up she asked if I had natural birth or a c-section. I had a c-section, but she swore that I looked as if I had just went through a natural delivery. Inside of me, I had a quarter-size blister, almost hole, that had formed and I was very inflammed. She started me on estrogen cream to thicken my internal skin. The estrogen did fix that spot inside of me after a couple weeks but I was still having intense pain if touched. My OBGYN then referred me out to UNC hospital to Dr. John Steege. I was then seen by him (which I highly recommended him to anyone suffering from vulvar vestibulitis in North Carolina) and he said that I had a mild form of vulvar vestibulitis. I was given a compound cream, Estridal and Lidocaine, and told to try Gene's Vitamin E lotion to relieve discomfort and start physical therapy. After a year of using the compound cream, physical therapy and MANY trials with relief care, my vestibulitis has improved. Well enough to not have to even use the cream anymore. What wonderful news!!! The pain with sex and tampons is gone, all better, the vestibulitis is GONE!!!
Well actually let's back-up...
I forgot to mention that during all this I started to develop that itch again. Yes, the itch has returned. The dreaded, life altering itch that controlled my younger days is back and stronger than before. What a disappointment. It took months before I finally was switched over to the Vulvar Pain Center at UNC, but it was well worth the wait. My first appointment was yesterday with Elisabeth Johnson... I truly believe that she is an angel. She is the first person that has dealt with me that understands me. She made me comfortable, she told me things about myself that I didn't even know and she has given me hope. She has told me what she expects of me and told me that she WILL make sure that I achieve all my goals that I had started and never was able to finish. She told me that I have to heal from this and everything else that has happened to me because, well, who else is going to teach my little girl how to be a strong, independent woman.
I now know that what I am dealing with is a nerve issue. Who would have guessed that a nerve could make you itch so bad. I cannot explain to you yet how it all works, I hope to be able to eventually; remember this is a journey and we are all learning together.
My Story - Part 3
As you may have already guessed, no I was not so lucky.
Growing up I dealt with many trips to the doctor with UTI's. (500 mg of Cipro twice a day for seven days. Diflucan to follow.) I could diagnose and medicate myself, I was able to at a young age. Did I always have UTI's?? Not sure if results always came back positive but regardless, my symptoms were treated with the above regimen. This is vulvodynia in a nut shell. Yes I did at some points have UTI's but not always. Just recently I was treated for a UTI that did not come back positive. Vulvodynia, for some women, feels like a horrible yeast infection, the worst you could imagine. So we have now covered my first two traumas in my life, the catheterization and growing up with an itch. Now on for my third trauma.
This trauma happened to me my first year of college. No, I do not want to talk about this, I never do. I avoid it at all cost. It lives in the back of my mind and I get so angry when my mind wants to pull it forward for me to deal with. I leave it locked up and say, "I will deal with it later." It's easier that way.
I was raped in college.
To me, that's enough said. Once again I have control taken away from me with my own body. Isn't it amazing how the actions of others can destroy the lives of individuals?? Not only does their actions play apart in your life but also in the lives of people around you. Maybe I will be ready to speak of this third trauma eventually, but not today.
My doctor told me something yesterday that others have said before, but it meant more coming from her. She said that I have a talent of leaving my body in situations I am not comfortable in. I can take myself away... go numb. She wants to put me back in my body. It's time for me to live inside my own body. She told me I need to know what "normal" feels like because I have not known that feeling for 23 years now. I was a little shocked to say the least, I feel normal...
Growing up I dealt with many trips to the doctor with UTI's. (500 mg of Cipro twice a day for seven days. Diflucan to follow.) I could diagnose and medicate myself, I was able to at a young age. Did I always have UTI's?? Not sure if results always came back positive but regardless, my symptoms were treated with the above regimen. This is vulvodynia in a nut shell. Yes I did at some points have UTI's but not always. Just recently I was treated for a UTI that did not come back positive. Vulvodynia, for some women, feels like a horrible yeast infection, the worst you could imagine. So we have now covered my first two traumas in my life, the catheterization and growing up with an itch. Now on for my third trauma.
This trauma happened to me my first year of college. No, I do not want to talk about this, I never do. I avoid it at all cost. It lives in the back of my mind and I get so angry when my mind wants to pull it forward for me to deal with. I leave it locked up and say, "I will deal with it later." It's easier that way.
I was raped in college.
To me, that's enough said. Once again I have control taken away from me with my own body. Isn't it amazing how the actions of others can destroy the lives of individuals?? Not only does their actions play apart in your life but also in the lives of people around you. Maybe I will be ready to speak of this third trauma eventually, but not today.
My doctor told me something yesterday that others have said before, but it meant more coming from her. She said that I have a talent of leaving my body in situations I am not comfortable in. I can take myself away... go numb. She wants to put me back in my body. It's time for me to live inside my own body. She told me I need to know what "normal" feels like because I have not known that feeling for 23 years now. I was a little shocked to say the least, I feel normal...
My Story - Part 2
Yes there is more to my story...
As you have read, I was traumatized due to a catheterization at a very young age. I think it scared me more that I had lost control and could not move or do anything about what was happening to me. The procedure was painful, but everyone in the room surrounding me and holding me down was worse. I was put on a medication called Bactrim and I took it for years, every day, until my body said, "No more!". I cannot tell you exactly when the itching started or the endless UTI's, but I know that I was very young. I clearly remember 3rd grade being the hardest year of my childhood. This is when my first round of vulvodynia started.
One cannot imagine an itch being debilitating, but I will be the first one to stand up and say, "YES IT CAN!!!" You get an itch on your arm or leg, you just itch it. There, all better. This is a different itch my friends. The more you itch the worse it gets. The only thing I can really compare it to is your crotch being on fire and that doesn't really do it any justice. The way I dealt and still deal with my volvudynia then and now is strange to me but not to my doctors or physical therapist. I sit on my ankles. Strange right?? Well what is weird to some is normal for others. This was and still is my cure all. The problem with this is that I'm stuck sitting on my ankles all day, no movement, just sitting there until it goes away. As a school-aged little girl, this was a problem. I had to move during the day. Bus rides to and from school were awful!! When the bus would go over bumps it would hurt so bad and make my flare-up so much worse. Walking the school to class, to lunch, gym, the library... horrible. Soccer practice... horrible. The vulvodynia wanted to control my everyday life but I just kept pushing through, every single day. I loved riding my bike which would shock a lot of women with this condition. Riding a bike usually makes it worse but it felt to me like sitting on my ankles. Wonderful!! Some mornings I would wake up and no pain, I would think, "Today is going to be a good day! Maybe the itch is gone forever." No such luck. It is odd though. One day the itch went from chronic to mild and I thought, "This is it. It's over. I'm free!!!" Would I be so lucky???
As you have read, I was traumatized due to a catheterization at a very young age. I think it scared me more that I had lost control and could not move or do anything about what was happening to me. The procedure was painful, but everyone in the room surrounding me and holding me down was worse. I was put on a medication called Bactrim and I took it for years, every day, until my body said, "No more!". I cannot tell you exactly when the itching started or the endless UTI's, but I know that I was very young. I clearly remember 3rd grade being the hardest year of my childhood. This is when my first round of vulvodynia started.
One cannot imagine an itch being debilitating, but I will be the first one to stand up and say, "YES IT CAN!!!" You get an itch on your arm or leg, you just itch it. There, all better. This is a different itch my friends. The more you itch the worse it gets. The only thing I can really compare it to is your crotch being on fire and that doesn't really do it any justice. The way I dealt and still deal with my volvudynia then and now is strange to me but not to my doctors or physical therapist. I sit on my ankles. Strange right?? Well what is weird to some is normal for others. This was and still is my cure all. The problem with this is that I'm stuck sitting on my ankles all day, no movement, just sitting there until it goes away. As a school-aged little girl, this was a problem. I had to move during the day. Bus rides to and from school were awful!! When the bus would go over bumps it would hurt so bad and make my flare-up so much worse. Walking the school to class, to lunch, gym, the library... horrible. Soccer practice... horrible. The vulvodynia wanted to control my everyday life but I just kept pushing through, every single day. I loved riding my bike which would shock a lot of women with this condition. Riding a bike usually makes it worse but it felt to me like sitting on my ankles. Wonderful!! Some mornings I would wake up and no pain, I would think, "Today is going to be a good day! Maybe the itch is gone forever." No such luck. It is odd though. One day the itch went from chronic to mild and I thought, "This is it. It's over. I'm free!!!" Would I be so lucky???
My Story - Part 1
We all have our own story; no two will ever be the same.
My story starts out at the age of 4 (or so I learned yesterday with my current doctor that this is when my story began). I was born with vesicoureteral reflux. Long story short, my bladder valve did not close properly due to the fact that it was under developed. That led to an in office catheterization, the void test. Still to this day, I sit here wondering why any doctor in their right mind would have a 4 year old in office, awake, having this procedure done. I remember the day like it was yesterday. Laying on the table, my dad in a chair beside the table, and the doctor and nurse ready to insert the tube inside of me. After inserting the first tube, I went crazy, to be expected. Most adults cannot stand a catheter being inserted in them, but I was only a child. I screamed and kicked and the doctor called for more nurses to come in and hold me down. They did as he told them, and each held an arm and leg. Just sit back and imagine this... you as a child and this happening to you. You have lost all control of your own body. This was the first time that I had control taken away from me. It's hard to take it all in even to this day. Moving along, I was then put in the hospital, put to sleep, and had the procedure. This is how it should have been to start with. No trauma, nothing scary, the hospital made it fun. I am sure you are thinking, "What parent would allow this??" Well, as any parent would, mine wanted me better. I am not sure that they even understood what was going to take place. I place no blame on them, I just wonder what that doctor was thinking. Fast-forwarding 23 years later, my doctor thinks that this in office procedure is when I had nerve damage from the catheter. This event changed the way I feel and see "normal".
My story starts out at the age of 4 (or so I learned yesterday with my current doctor that this is when my story began). I was born with vesicoureteral reflux. Long story short, my bladder valve did not close properly due to the fact that it was under developed. That led to an in office catheterization, the void test. Still to this day, I sit here wondering why any doctor in their right mind would have a 4 year old in office, awake, having this procedure done. I remember the day like it was yesterday. Laying on the table, my dad in a chair beside the table, and the doctor and nurse ready to insert the tube inside of me. After inserting the first tube, I went crazy, to be expected. Most adults cannot stand a catheter being inserted in them, but I was only a child. I screamed and kicked and the doctor called for more nurses to come in and hold me down. They did as he told them, and each held an arm and leg. Just sit back and imagine this... you as a child and this happening to you. You have lost all control of your own body. This was the first time that I had control taken away from me. It's hard to take it all in even to this day. Moving along, I was then put in the hospital, put to sleep, and had the procedure. This is how it should have been to start with. No trauma, nothing scary, the hospital made it fun. I am sure you are thinking, "What parent would allow this??" Well, as any parent would, mine wanted me better. I am not sure that they even understood what was going to take place. I place no blame on them, I just wonder what that doctor was thinking. Fast-forwarding 23 years later, my doctor thinks that this in office procedure is when I had nerve damage from the catheter. This event changed the way I feel and see "normal".
Allow Me Introduce You To...
Have you ever asked yourself, "Am I normal?" Have you ever thought, "Am I just broken?" Have you ever wondered, "Can I really be fixed?" These questions have ran through my mind almost everyday for the past 23 years. Yes there are days when these questions do not haunt my mind, but there are many more days when these thoughts come to life. To think that certain events/moments that happen in your life could change everything, would you erase those moments if you could?? Or do you REALLY think that these moments make you stronger?? I am here, putting everything out there, to share my journey. I welcome you on my own journey, a journey to find relief. Maybe we could help each other, life gives you endless opportunities. This is my story, my everyday journey of dealing with chronic pain. So let me start my journey with you by introducing you to a condition known as vulvodynia...
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