"Birds make great sky-circles
of their freedom.
How do they learn it?
They fall, and falling,
they are given wings."

-Rumi (translated by Coleman Barks)

Monday, August 24, 2009

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.

Wednesday, August 5, 2009

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."

Wednesday, July 29, 2009

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.

Thursday, July 23, 2009

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.

Wednesday, July 15, 2009

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.

Monday, July 13, 2009

Beginning of PT, tape, and core stabilization

I apologize for the influx of posts all of a sudden- but I figured this information was pretty relevant, so bear with me. It's been especially great being in contact with so many of you who are going through almost the exact same thing as me. It's comforting just waking up in the morning and knowing I'm not doing this alone.

Today I started my PT with Stacey in NYC (again, doing this once a week and going to regular PT three times a week.) Again, we worked on release, as well as sitting correctly. I really have to focus on things as small as sitting. Number one- no crossing my legs. Number two- I have to focus on moving my pelvis down, and not crunching it up. To help with all of this, I got taped up today, which you can see above. Just imagine the tape running down even lower. It's very tight and really restricts my movement. It forces me to sit up correctly, as well as keep my pelvis pointed downward. I'm going to try and get taped up everytime I go to PT, so hopefully wearing it 4 times a week will help.

After all of this, I now have 3 core stabilization exercises to work on. They are a bit difficult to write out so if you would like to know more, just leave a comment and I'll do my best to explain.

Of Lidocaine patches, PT, and mountains

I just wanted to take a moment and really commend The Hospital for Special Surgery in NYC. These people really know how to run their hospital. I can get in touch with my surgeon at any time, can get prescriptions, notes, etc. They are fast, efficient, and just really on top of their game.

Stacey recommended I start using Lidocaine patches, so sitting can be less painful. I just got the prescription filled and have worn them twice. You can wear up to three patches on the area for 12 hours on and then 12 hours off. So far I think they do work and provide some relief. I'm using two right now and have cut each in half to cover more area. I'm riding on the train today to do PT, so we'll see how well they work then.

I also am able to start the elliptical and stair master at my regular PT now. Going on the stair master last week gave me such motivation. If I closed my eyes, I could have imagined I was just hiking up a mountain and everything was fine again. I've been talking to some people recently and have discovered why I love mountains so much. They are a huge undertaking, an intense physical challenge, however there's a very straight forward way of overcoming this challenge. Sure you can go off the trail and use advanced mountaineering skills, but when it comes down to it, you know you just have to climb up and make it to the top. And there's no better feeling once you summit and have accomplished the long hours of climbing. And there's no better feeling once you have returned down the mountain and stare up at the physical representation of your efforts, standing tall and still right in front of you. I've had to deal with so many of my own physical challenges in the past few years, and there hasn't been a clear way to overcome them- I can't see the way up, which is why I get so frustrated. This is the first time in a long time I think the fog is finally lifting and I'm beginning to see the trail.

Wednesday, July 8, 2009

7 weeks post-surgery

This past Monday I spent all day in the New York finding out some new information. First I went to see Dr. Coleman, my hip surgeon. This is now 7 weeks post surgery, and he wanted to check in on how I was doing. The good news is he's very pleased with my progress. All my hard work seems to be paying off. I'm doing very well and he gave me permission to start hitting tennis balls again. I can't serve, but I can hit groundstrokes and volley. And then in a month I'll be able to start running. So it looks like I'll be able to play in the fall- I'm only going to play doubles, but that's fine with me. At least my life is getting some semblance of normalcy. I'm also allowed to start the elliptical as cardio now, so I can get off the bike. I'm not sure if the bike was making things worse for me, but I know it wasn't the best.

Sitting has become very difficult the past couple of weeks. It's been very painful and has moved to my buttock region, so right on the bones I sit on. I was pretty upset about the increase in pain, but after seeing Stacey, I feel much more relieved. Right after Dr. Coleman, I went to see her and she did an exterior, vaginal, and anal examination to see if I felt any different. She also made a great point that even though my pain has gotten worse, it has also moved right after surgery, which means the hip does have a strong connection to my pain. Now that I'm starting back from step 1, I just have to rebuild and retrain my muscles so that I can finally release my pelvic floor. This will apparently take up to a year, but I just have to be patient. I don't care if it takes a year, as long as I know this is what I have to do, that's fine. I just need a clear-cut path set before me.

The great news is when Stacey did the vaginal examination, it felt so much different. There was a little pain upon penetration, but compared to what it used to feel like, it was incredible! I had tensed up and was preparing myself for the worst, but it didn't happen. She also did a lot of work releasing my posterior muscles, because that's where all my pain seems to stem from now. And again, these muscles wrap around and reach the front of your pelvis, which is why I'm also having vaginal pain at the bottom of my vulva. The anal examination and release was pretty difficult to tolerate. It's definitely more painful, but it got better as the muscles were released. But that's definitely where my biggest problems are right now.

After that we worked on some core stablization exercises. My biggest problem is I've been working very hard at physical therapy for my hip. In doing this, I've been training the wrong way. When I lift weights or do cardio, I tighten my pelvic floor instead of my abs. At this point my pelvis floor is constantly tightened and does all the work for me, which is why I'm having such problems sitting. So we're trying to retrain my ab muscles to do all the work. Stacey says my abs are not as strong as they should be because they haven't been doing the work. We tried doing very basic exercises, which I'm having lots of problems doing, because my pelvic floor is just used to being so tight all the time.

When I had gone in for my appointment, I had told Stacey that my pain level was about an 8 sitting, and after the hour was up, I was around a 1 or 2 sitting. It was wonderful. It lasted a significant about of time too. The train ride home was a lot easier. These past two days I have seemed to return to my original pain levels, but at least I'm taking steps in the right direction. I'm going to start going to NY for PT once a week to work on this, as well as my regular PT three times a week for my hip. It's going to be hectic, but so worth it in the end.

As always, let me know if you have any questions. And for my friends also going through post-surgery recovery right now, keep on fighting!

Monday, June 8, 2009

Physical Therapy

I apologize for the lack of updating- I've been quite busy recently with work and physical therapy. So I'll quickly catch you up. I was on my couch, not really able to move much for two weeks. By the middle of that second week, I could climb stairs pretty well with my crutches and slept in my own bed. My stitches were removed which relieved a lot of the pain and tension on my hip. I was prescribed pain killers, but stopped taking them after the first few days because I could handle the pain and discomfort I was in. I did continue to take the anti-inflammatory medication for a week and half until the swelling went down. I finally started physical therapy at the end of May and am currently going three times a week at Pinnacle Physical Therapy in Lawrenceville. It's very convenient because it is ten minutes away from school. I am also very impressed with them. My PT is committed to work me hard and try and reach our goal of getting me ready for the fall tennis season. I understand I will not be playing singles, but I really hope to be able to play doubles and then recover for the spring season.

At this point I am able to ride a bike and then do various other exercises to increase the strength, flexibility, and mobility of my hip. Even better, I stay after my hour of therapy to do extra work and work with my PT to increase my upper body strength and my abs. Since it is very frustrating to be so limited in my lower body, it's nice to go all out and push myself on my upper body. This way I use that determination to strengthen my arms and not make my hip worse. I still have to be very cautious in everything I do so I do not re-tear it and start back from step one.

I was on crutches for three weeks, and then used a cane, and finally am walking with my two legs as of this past Friday. Although it's very frustrating that I cannot run or even walk on a treadmill, I'm finding other ways to keep active and get in shape. This is the schedule I have set up for myself that coincides with my work schedule. I go to physical therapy three times a week. I do my physical therapy exercises every day. I go to the gym at school three times a week and swim laps in the pool three to four times a week. I do this by putting this foam buoy between my legs, so I am solely using my arms and abs to swim. I also have water exercises I can do, such as walking forwards, backwards, and doing leg raises, using the water as resistance.

Every one keeps asking me if I have noticed any changes in my vaginal pain level or if sitting has gotten easier. Unfortunately, I do not have good news yet. In fact, I've noticed my pain level has gone up a bit. However, I have also been told not to lose hope because results aren't going to come overnight. Most see them anywhere from three months to a year post surgery. I'll be interested to see how my appointments go in the beginning of July. I go into the city for a follow-up with my surgeon, as well as a check-up with Stacey to see if things have improved. So right now I am not dwelling on any pain I may be feeling. I am just doing my best at physical therapy and trying to recuperate. Let me know if there are any questions.

Friday, May 15, 2009

Surgery

I have been asked by a few people to go into detail about my surgery, so this post is for them. This past Tuesday I went into the city for arthroscopic hip surgery. I was beyond impressed with The Hospital for Special Surgery. They did not keep me waiting once I arrived with my parents. They had a physical therapist meet me and go over how to walk on my crutches after surgery. Then, I filled out some paperwork and they brought me back to get started for the surgery. We had to do a urine test and then I went into my own room to get changed into their hospital gown and cap. While this was all going on, countless people kept coming in my room and introducing themselves to me. I met with my anesthesiologist who explained everything they would be doing. I also met with his assistant who asked if I would participate in a drug study for nausea medication. It seems like 50% of hip patients get severe nausea post-surgery, so I would be taking anti-nausea medication for two days afterwords to see if it made a difference.

My parents were allowed into the room, so we all stayed together before I had to go into surgery. One nurse came to ask about my entire medical history, another one came to put the IV in. Dr. Coleman also came in to answer any last minute questions. Then before I knew it, it was time to go. I walked myself to the operating room and laid down on the table. My anesthesiologist was there and proceeded to give me medicine through the IV so that I would sleep. When I was asleep, I was then picked up and given a spinal injection to numb me from the waist down. Dr. Coleman then made three incisions in my left hip and went to work.

After I fell asleep on the table, the next thing I remember was waking up in the recovery room. Apparently I had already talked to Dr. Coleman and a lot of nurses, but I don't remember those interactions. I woke up in a lot of pain, so I was given a lot of medicine. I actually had no signs of headaches or nausea, and just had to wait for my parents to fill my prescriptions. Because of all the pain medication, everything else is a little fuzzy. Somehow I ended up in a wheelchair and was brought down to the ground level and put in my car.

The interesting part about this surgery was the size of my tear. Dr. Coleman said it was the largest labral tear he has ever seen- and he's done quite a number of hip surgeries. He told my parents it was no wonder I was having such pain sitting and he was impressed I was playing tennis competitively for so long. Because it was much bigger than expected, the pain is worse and my recovery time is much longer. However, I think it's great news. I really think everything is inter-connected and I'm finally on the road to recovery.

I've spent the past two days on my couch. As the days go on, it gets easier and easier. The first day my mom had to push my leg so I could get up to go to the bathroom. Now I still need help getting up, but I can move my leg on my own. The first day it also felt like an axe was stuck in my side. Now the pain is slowly going away. I should be on crutches for 2-3 weeks. I'm getting my stitches out next week and should be starting physical therapy shortly after. I'm eager to start recuperating. I must admit, I'm already getting tired of the couch. I don't do well sitting in one place. Let me know if there's any questions I can answer!