Whelmed

I had one of those days where I was just overwhelmed with information and thoughts and could not wait to get back and home and get them on paper. Well in this case, virtual paper...

I think big steps have been taken when women started blogging about vulvar vestibulitis because it is such a taboo subject. There are countless women afraid to speak out or even discuss it with their friends and family. It is much more difficult to have a support system and vent about your frustrations. Although this is a big step towards awareness and social acceptability, there's still many topics that are not discussed.

One of these is sex and sexuality- something I have really glossed over until now. If society thinks talking about your vagina is taboo, talking about sex is certainly worse. But at this point, I cannot be silent about it anymore.

I think one of my biggest issues is that having vulvar vestibulitis is so commonly linked as a sexual disorder, when that isn't the case at all. It's sexualized because it deals with the vagina. However, that doesn't mean it has no affect on my sexual life. After a discussion in class about sexuality today, I started thinking more about things I have tried to just push aside and forget. That's not healthy- these are issues I have to deal with.

I have not had sex (in the terms of sexual intercourse) for almost two and a half years now with my ex-boyfriend. I have only been with that one person, and the last time we had sex was when I realized there was something wrong with my body and my journey began. Since that point, a lot has changed. I have not been able to keep a stable relationship since, and the main issue is because of having VVS. There are a good number guys who listen to me explain my story and then run away. There are guys who simply don't want to deal with it. And then there are guys who do seem to understand, but it still doesn't work because I feel an enormous amount of pressure to not only get better, but almost make up for the lack of intercourse with other things. Sometimes this pressure is self-imposed, but my general experience has been that there are very few men out there who can handle this situation, which is very frustrating for me.

I have loved being single these past years, but only to a point. Everything goes well until they either find out or I tell them about my health issues. Once that information is out, it becomes the elephant in the room. But I'm deviating slightly from my main agenda.

I think one of the hardest things I face other than the physical pain and constant doctor appointments is the fact that I no longer feel like a sexual being. I understand that sex isn't just about intercourse, but it is just very difficult to take it out altogether. And I'm not trying to paint the male population as immature, sex-driven assholes- it's more of a critique of society and its standards.

We had another discussion in class about what identity you feel encompasses you the most- whether it be race, class, sexuality, or gender. A lot of people talked about being a woman or being a student... I sat there silent because at this point I identify most with having vvs and constantly being sick. My health is currently defining me, and that's something I can't really escape. I can try to push it to the back of my mind and focus on other things, but it doesn't change the fact that when I wake up in the morning and when I go to bed at night and when I am just thinking to myself, it constantly overwhelms my mind. Like I said in my previous post, I have such a huge support system that I am eternally thankful for. Right now I just wish I could reclaim my sexuality and have that back in my life. I don't need a relationship or someone to take care of me. I guess I just want to be wanted and have it be completely okay that there's only so much I can do when it comes to physical activity. And also have it be okay that just because I can't have intercourse doesn't mean I'm going to do everything else to make up for it. I hate that pressure.

Hopefully some of you can relate to this and hopefully offer some more thoughts or advice or stories. From all of your emails, I know it's a huge issue we face daily and too be quite honest, I'm tired of not talking about it.

Competition and awareness

Before I talk about some exciting news- I want to do some quick updates. Things seem to be going smoothly. I'm still going to physical therapy once a week in New York and it gets easier every time I go. I really do think within this next year I am finally going to be rid of this. I have started using dilators every night and while using them I do hip stretches and exercises. Hopefully this will help increase blood flow and make my skin healthier.

As you can see there are some new changes to this website. First of all, I made a motivational playlist for your listening pleasure while you are reading. These songs have gotten me through many tough times and I hope they help you in some way.

Also, to the right you can see that I just entered into Wellsphere's HealthBlogger competition. I've decided to enter in hopes of providing more awareness about vulvar vestibulitis and vulvodynia. I've read too many personal emails from women who are too scared or embarrassed to talk about their problems and don't know where else to turn. I've been to too many doctors who either do not even know what my condition is or give incorrect medical advice. Change must happen. So I'm hoping to do well in this competition in order to educate even more people about what we have to go through every day. Please click the vote button on the right side, and submit your votes on Wellsphere. We can do this!

Finally (sorry to overwhelm you), I sent out the following message to a few of my friends. This letter also has a lot to do with all of my readers, who have been there for me numerous times. I'm reposting it to thank you all, and to also encourage you to send a similar message to your own support systems. Too often people don't realize the difference they make in your life until it's too late.

Dear friends old and new,

I'm currently writing this in my notebook as I ride the train into New York. I watched something this morning that has overwhelmed me with gratitude and inspired me to reach out to each of you. I am facing my share of struggles, but they have not and will not break me. This is only because I have the strongest support system one could hope for. Each of you has made an impact on my life. Each of you has lessened my pain in some way, whether big or small.

A mass message may seem silly, but I felt compelled to offer my thanks. We might not be that close and we might not still be in touch, but I have memories with each of you that make up the person I am today. Many of you do not realize the difference you have made in my life. Things as small as listening to my fears and complaints, driving me to doctor appointments, making me smile and making me laugh, encouraging me, dancing with me, holding me, helping me catch up with my work, and many many others. The little things matter. And they have been my best medicine over the past two years.

As I sit here today, I am more at peace than I have ever been. And it's because I know what ever mountain lies in my path ahead, I don't have to climb it alone. I wish I could give back to each of you the strength you have given me. I am so grateful. Thank you.

Have a great day and don't forget to vote!

Bump in the road

Again, I am sorry about the lack of updates. Things have been pretty crazy recently. While I was dealing with the increased pain in my hip, I also got sick. It is a very long story that's not relevant to this site, but the short version is I went on antibiotics for tonsillitis, and then 5 days later had to go to the emergency room because they swelled up more, hurt a lot, and I was having difficulty breathing. Turns out they were starting to close my air passageway. I spent a week at home on steroids and a stronger antibiotic. Finally I am off medication and can put it behind me. The good news is I was forced to take a week off from life and spent the time with my family, sleeping on our couch downstairs. It also taught me the importance of not running myself down. I have a lot on my plate at school and it piles up. It literally took two doctors and an ER visit to force me to stop and relax.

The funny part of this story is that the steroids I was on for the tonsillitis have helped my hip calm down even more. I also felt that the week off from all my obligations has made me a lot healthier. Now the problem is I'm trying to catch up on everything that I missed. And, I will be getting my tonsils out in November, which is a surgery that I need to be home for two whole weeks. Luckily my professors are very understanding, I just need to make it through this year so I can graduate.

As far as my progress is going- I went to physical therapy last week and the difference in results was incredible. I'm having a much easier time sitting, and this time when I got my period, I didn't have any of the usual painful symptoms that escalate everything. There has been definite improvement. Now I am allowed to go back on the elliptical about three times a week, slowly, for about 15 minutes. I am also supposed to start up the dilators again, starting from the smallest size, and doing my hip stretches while using them. This I will start in a few days once I feel completely recovered.

Other than that, life in general has been pretty great. I feel like I'm on an upward swing. I'm also trying to appreciate every moment. If you want an inspirational song- check out Terra Naomi's, "Say it's Possible." It's good stuff. More exciting is I have emailed her and she is now coming to school to perform a benefit concert on November 2nd!

More Obstacles

It's been a rough couple of days. I went to PT again this Monday in NY. We did some extensive work on everything, including my hip. Stacey told me I might feel very sore later on because my muscles were worked very hard.

During my night class I started to get a shooting pain coming from my hip. It was too much to bear so I caught the eye of my teacher and left the room. She shortly followed and we came up with a plan. First I called my PT to make sure this was not abnormal. Turns out the sharp pain was still due to the physical therapy in the morning. So we got me downstairs into an office and for the rest of class I was able to ice my hip and take 4 advil which brought significant relief.

I'm so grateful for everyone who helped me yesterday, specifically my teacher for being understanding and helpful. And also to one of my friends who stayed with me for hours, brought me dinner, and got me back to my room. I'm so tired of getting help, but it's a relief to know that I have friends who are always ready to offer it.

I've been trying to take it very easy since yesterday. I only sit when I'm in class, and try to keep my hip straight. I'm also going to my athletic trainer at school every morning to get ice and stim, as well as ultrasound, and then to get my lower back taped like I showed in earlier posts. I think these treatments are working and helping to calm down the inflamation. I still feel a soreness today, but at least the direct pain is gone.

I'm also still having some burning and discomfort while sitting, but only after longer periods of time. I have a three hour class that is a bit of a chore to get through, but at least it's interesting. I definitely see some improvement from last week though. I just have to be patient.

The silver lining in all of this is that what changed recently was that my hip got very inflamed and started to hurt, which was a catalyst to all my other problems. This shows the direct correlation between my hip and pelvic/sitting pain. So, I'm becoming more and more convinced that once my hip is healed completely and as long as I keep working hard at physical therapy, I can put this whole experience behind me. Hope everyone is doing well.

Taking a step back

I apologize again for not updating- it's been a crazy couple of weeks. The biggest news is that after this past weekend, I am unable to play tennis anymore this season. My hip could not take three days in a row and is inflamed and very irritated right now. I'm pretty upset because I worked so hard this past summer to be able to play and compete at regionals, and now I have to stop one week shy of my goal. But, I guess there's always next season. And I know there's more to life than college tennis.

Due to the inflamed hip I have experienced an escalation in all my other issues. I'm having difficulty sitting, as well as sharp vaginal and rectal pains. Although it's hard to deal with it, it's a little comforting to see the connection between my hip and my pain. I still think I'm on the right track. I also haven't been able to get up to New York, so I'm sure that contributed.

Thankfully, I was able to see Stacey today and she released me rectally. I felt some immediate relief, but everything is still very tight and painful. I'm seeing her again Monday, so I just have to be patient and work through this low.

So the new plan is to give my hip a break for a month. I obviously pushed it too hard, so as hard as it will be, I will rest it. No tennis, no dancing, no climbing, no running. I can still work out, but only my core and my upper body. It's very hard for me to sit and do nothing- I'd much rather take a proactive role when it comes to physical therapy. But it seems like this is what I need right now. I'll have to settle for reading climbing books and daydreaming about mountains.

Estrogen compound/More appts

Things have been very hectic the past few weeks. Summer came to a close and I launched headfirst into my jobs, school, and tennis. There are a couple things to report. First, I was contacted by Wellsphere to be a featured healthblogger. I'm pretty excited for the opportunity and ask you to check out their website and their community for any health questions or issues you might be having. I'm also happy to report that after visiting my surgeon last week that I was given the green light. He was very impressed with my recovery. While I'm not at 100%, I can be active again without being afraid of re-tearing my hip. I am still going to physical therapy three times a week and now will be playing tennis around 4-5 times a week and going to the gym twice a week. Although I have the green light, I am still being cautious about my activities. If at any point my hip hurts, I will stop, and if it's sore the next day, I know to take it down a notch.

I'm very proud that I have gotten to this point. Now that I can go back to tennis and dancing and rock climbing, I feel a lot more like myself. I feel like everything is coming back together.

As far as other things, I'm feeling pretty good. Again, it was the time in my cycle so I experienced increased pain levels and had problems sitting. But I'm continuing to see improvements. After my last exam we noticed my skin is very thing towards the very bottom of the vulva. So I'm going to make an appointment back with Dr. Nyirjesy in Philadelphia so I can get an estrogen/testosterone cream compounded, test my hormone levels, and get a liquid lidocaine to use for my dilator exercises. I'll try to see him by the end of September and hopefully get my skin back to a healthy level. I think using that along with the continued physical therapy will put me on a good track. I know it might take a year, but I don't mind waiting as long as I continue to see progress.

Progress

It's amazing what can happen in a week. I've been taking antibiodics and they have done their job. I feel so much better- back to where I was last Wednesday. The tissue also looks much better. I got the results back from my culture and it turns out it was positive for yeast. So to be on the safe side I am going back on Friday to get another culture and make sure it has completely gone away. I don't want anymore setbacks.

Physical therapy went really well today. Sitting has been difficult, but it just feels like my muscles are so incredibly tense and tight. And when we do vaginal and rectal release, I do notice a huge difference week to week, and especially since before my hip surgery. So I think we're finally getting somewhere and I'll just continue to be patient. My hip is still very weak, but I am trying my best to get better before the fall tennis season so I can play doubles.

Right now I have 4 or 5 stretches that I have to start doing twice a day. I'm also going back to using the dilators and have stretches to do while I'm using them every other day.

Also, if you don't know already, this Friday night there is a primetime special about vulvodynia. I have no idea what they are going to talk about, but I'm sure it will be interesting. One of the physical therapists talking is from Beyond Basics in NYC where I go every week. I've pasted the information below.

"For those interested in learning more about vulvodynia and sexual pain, 20/20 will be airing a segment at 10 p.m. EST, Aug. 7

ABC News' Chief Medical Editor, Dr. Timothy Johnson, will discuss the diagnosis and treatment of sexual pain disorders and vulvodynia with Andrew Goldstein, MD, and Amy Stein, MPT. Dr. Goldstein is the director for the Center for Vulvovaginal Disorders in Washington, DC, and New York City. Ms. Stein, is a New York-based physical therapist, who specializes in the treatment of pelvic and urogynecological pain disorders.

The segment will also feature the stories of two women with sexual pain, as well as an interview with Christin Veasley, NVA's associate executive director, and her husband Melvin. We have worked closely with the National Vulvodynia Association and they are a wonderful organization.

For more, visit http://abcnews.go.com/2020/
or visit: http://www.tvguide.com/Listings/default.aspx."

Infection

Today was not a good day. I have been in a lot of pain recently, especially sitting. But that increase was due to having and getting over my period. However, I've had itching and burning as of late last night. This morning I was fairly certain I had an infection- I had a lot of vaginal pain that I don't normally have, and siting was almost unbearable. I went into NY for PT as per usual, but ended up taking a bus back to my house to go to the gynecologist.

I was already in a bad mood at the gynecologist because frankly, I have enough vagina issues to handle right now. The over-peppy receptionist and nurse almost set me over the edge. I had a new gynecologist since I was rushed in, so she knew nothing about me. Not really in the mood to give her my whole history, I just told her what I had and could she please use the smallest size and be careful? She replied by asking what they put me on for vvs. I just looked at her blankly. Does she really think there's a magic pill out there that we can all take? Great- why don't you just prescribe me that now and I can stop wasting my time at all these different specialists. She was so oblivious to everything, so I just told her I've gone through a lot of different things and left it at that. It's so frustrating when gynecologists aren't even informed. I was pretty upset after she left the room and needed a couple of minutes to pull myself together.

It looks like I have a bacterial infection. Joy. I'm on two medications for the next week and a half and should be better by then. This is highly inconvenient because I can't have surgery while I'm on antibiodics, so I'll have to push back my toe surgery. I also can't have alcohol, and boy would I like a drink right now.

I'm just so sick of it. A whole day spent running around to doctors. And more pain for me to put up with. I'm just going to play the life's not fair card tonight and then take it on tomorrow.

Update

Everything seems to be going well with my recovery. I go to physical therapy right by school three times a week and go into NY to see Stacey once a week. Both of my physical therapists are communicating together to come up with a good plan for me. I have laid off working on my hip right now and have been spending a lot of time on core stabilization. This way I won't tighten my pelvic floor when working out.

I still do cardio- so I go on the stair master for 15 minutes and then the treadmill. Sometimes I also do the elliptical at school. I can only walk on the treadmill, but I make sure to make it difficult for myself. I generally walk a mile after the stair master, doing each lap at 4.1, 4.2, 4.3, and finally 4.4 which brings me to about a 14:15 mile. I also do another mile at the end of my workout. This way I still feel like I'm doing something. At this point I'm dying to go back to hiking, rock climbing, and dancing, but I know it's too soon. And the last thing I want is to make it worse and have to repeat this long process.

I also think my sitting pain has gotten better- I'm slowly seeing results. Right now I'm in a lot of pain, but I think it's just because it's almost my time of the month. I'm also pretty sore today after manual therapy. We are still noticing a huge difference in my side- my right tissue is so much better than my left. So this is pretty promising. My left hip was operated on and is still in the recovering stage.

In other news, it looks like I'm also going to be in a case study of about 10 participants who have had labral tears in their hip related to pelvic pain. There's a conference on Vulvovaginal Pain in the fall, and the hope is to present these findings then. I'm so thrilled that this information is finally getting out there. So many gynecologists and surgeons and specialists just look at the specific area that is in pain and refuse to acknowledge the rest of your body. I might not have had a noticeable pain in my hip for years, so I am so glad it was caught now. Research is so important because there are still many questions left unanswered.

Email

A lot of people have been reaching out to me recently, and I realized that I didn't have an email on this site for anyone to get in contact with me. If you ever need to talk to someone or have questions, please contact me at tamravv@gmail.com and I will get back to you as soon as possible.