Surgery is set

Today I went into NYC yet again to meet with Dr. Coleman, my hip surgeon. It was a very long day- 8 hours in all, so I'm so thankful my mom came with me this time. Dr. Coleman was very friendly and informative. We looked at my MRI's and x-rays. So again, I do have a significant labral tear that needs to be fixed. It's been there for a couple of years, but the speculation is it was small and has gotten significantly worse the past year. It has occurred because my femoral head is in the socket, but angled slightly forward, causing me to walk with a foot inversion. It also then causes the head to scrape against the tissue, creating the tear. I also have an eroded pubic bone that has been apparently since my early teens. And that has very likely caused scar tissue to form around my pelvis region.

So, after being examined and going over a lot of information, we scheduled a hip arthroscopy for May 12th. I'm getting it right after my tennis season ends. It's a one day procedure and I'll be on crutches for a week and then I start physical therapy twice a week. I'm also not allowed to do physical activity for around 3 to 3 and a half months. So that means no running, no tennis, no water skiing, no paragliding, no rock climbing, no hiking, no dancing this summer and possibly part of next semester. It's upsetting, but at least I'm finally getting answers. Dr. Coleman has operated on 6 or 7 patients with vulvar vestibulitis in the past, and the surgery has caused most of them to be completely better. He is a hesitant to make any promises, especially since my cortizone injection didn't provide me with any vaginal pain relief. However, some of his patients also didn't get relief from the injections, but the surgery still eliminated all of their pain.

I spoke with my mom on the train ride home, and here are our best speculations. I think the hip arthroscopy is going to fix my problems with sitting down, and all the pain coming from my rear end. However, I think I still might have the sharp localized pain in my vulva, which I think is being caused by the scar tissue from my pubic bone. Dr. Coleman recommended ANOTHER doctor that I should see that specialized in the pubic bone. He's going to inform him of my case and see what he says. We're not entirely sure how you fix a pubic bone, so I'm interested to see what my options are. As nice as it would be to have this arthroscopy fix both of my problems, I might have two different issues to deal with.

So that's it for now. Now that the date is set, I am going to cross my fingers and hope this is the answer I've been waiting for.

Hip Surgeons

A couple of people have asked me to post the hip surgeons I had looked into. The three listed below all work at The Hospital for Special Surgery and are supposed to be at the top of their fields.

Dr. Brian Kelly
Dr. Struan Coleman
Dr. Friedrich Boettner

I will be seeing Dr. Coleman this Wednesday in NYC- he was the only one who took my insurance. I am interested to see what he says and will update when I get back.

The Seach for Hip Surgeons

It's been awhile since my cortisone injection, and while I have noticed some improvement in the pain of my left hip, I still have vulvar pain and great difficulty sitting down for long periods of time. My frustrations have been building up and so I called Dr. Cooke and obtained three hip surgeon referrals. Of course, none of them accept my insurance, but they specialize in youth and sports related hip tears, so we will probably go out of network. They are all from the Hospital for Special Surgery and apparently that is the place to go.

I haven't made an appointment yet, but I'm sure today I will have to figure out if I'm waiting until May for the end of the tennis season, or if I want the surgery sooner than that. While I'm making big decisions, I found the following information on one of the doctor's websites which just made my eyes light up. It sounds just like me!

3. How does a labral tear present?

Labral tears most commonly result in "groin" pain. Most patients describe the pain as a sharp pain that is very deep. It tends to hurt more with increased activity, and is very easy to reproduce with high degrees of flexion and internal rotation of the hip joint. Prolonged periods of sitting will result in pain for patients with a condition known as femoroacetabular impingement.

Oftentimes, patients do not complain of a constant pain in the joint, but rather one that comes and goes without warning. Pain is usually located in the anterior region of the hip (groin area).

Less commonly, patients present with posterior (buttock area) or lateral (outside of the hip) pain.

Some complain of pain that wakes them up at night, or pain referred down the leg. These two symptoms tend to be more common in those with arthritis of the hip.

4. Why is it painful?

Patients with labral tear complain of hip pain because the labrum has nerve endings that can stimulate pain fibers, causing pain sensation in the hip region.

Cortisone Injection

I apologize for not writing this sooner, but things have gotten hectic at school recently. Last Monday I went in for my cortisone injection. I should have been a little more prepared. I had expected to attend classes that same day, but my doctor wanted me to lie down and stay still for 1-2 days so the medication would work effectively. Monday and Tuesday just happen to be my busiest days of classes, but thankfully my professors are very understanding. I made sure to just lie down both days in order to recover.

Once I got into the office, there was some paperwork to fill out, and then I had to change in the lovely paper gown. They took me into a room with a couple of screen and an x-ray. There were three people there plus me. First they had me lie down and then talked me through the procedure. What happened is Dr. Cooke marked the spot on my hip he was going to inject. It was very high up, right below where my underwear sits. He then took a very large needle and inserted an anesthetic into the area. I'm not going to lie- this was pretty painful. It takes awhile for the needle to get into the proper location and the anesthetic hurts a lot once it is released.

After that, Dr. Cooke injected dye into the area to make sure he would put the cortisone in the proper place. My big mistake was watching him to do all of this on the screens in the room. I do not recommend watching. He had to inject the dye twice til he got the proper area, and then he injected the cortisone. I guess the worst part of the whole thing was that it took about 15 minutes, so it was a long, uncomfortable and painful time. And when it was over, I sat up and the room went black, so I had to lie there for awhile. My face had gone pale white and my blood pressure dropped, so I guess that had a lot to do with watching.

After all this was over, I had to lie down in another room for 30-45 minutes until my blood pressure was better and the color had returned to my face. I brought my doubles partner to the appointment because they didn't want me to drive back.

Like I said, I proceeded to rest for 2 days, and then I went back to tennis practice. I had a sharp pain for 2 or 3 days which I used ice to help numb. You are not supposed to take motrin or any other anti-inflammatory medications when you have just received a cortisone injection.

My pain has gone now, but I still have a dull ache that I feel now and then. I felt it this morning during a tennis match, but it wasn't unbearable. I'm supposed to tell by now if it has worked, but I'm unsure. I don't feel as much pain, but it's hard to tell. I'm going to need surgery to repair this tear; I'm just trying to see if I can play this season and wait until May to have it. I've played for 3 years on a bad hip, so I don't think 2 more months will do me more harm and my doctor agrees. I'm going back to him soon though to discuss other options.

Someone asked a question about my physical therapy. Once I found out about the tear in my hip, I have stopped going to therapy. I can't balance school and tennis and seeing 3 different doctors. So, I'm focusing on my hip right now, but I still work with my dilators at night.

I think that's all for now. I'm trying to get a hold of my MRI images so I can get some photos up here. I'm really intrigued about how many people with vulvar vestibulitis have hip problems. Everyone I have talked to seems to think my tear and is the reason for all my pain. I hope they are right!

Big News!

I apologize for the lack of update- but wanted to wait until I had some results back before I spilled all the information. Recently I've been following the lead on my left hip and went to go see Dr. Cooke from the Hospital of Special Surgery about it. He did x-rays and a thorough exam last week and discovered that my pubic bone is eroded in the x-ray, which means the tissue around it might be inflamed. He also thought a had a labial tear in my left hip because of my pain and lack of movement.

So following this lead, I went yesterday into NYC to go get an MRI done at the Hospital for Special Surgery. I must say, although it was an 8 hour ordeal to actually get to the city and back, I was very impressed with the Hospital and everyone working there. My actual MRI took about 2 hours- they did a long series of my left hip and then a series of my pelvis.

Today Dr. Cooke called me to give me the verbal report of the MRI (pictures coming in tomorrow.) I do have chronic inflammation around my pelvic bone because it is eroded, however it's not currently inflamed. But it looks like it has been off and on for a long time. The big news is I do have a huge labial tear in my left hip, which extends anterior to posterior. My veins are also swollen on my left side.

I am probably one of the few people who are ecstatic to find out they have a huge tear in their hip. And my doctors believe that it is the cause of all my pain. So where do we go from here?

First of all, apparently I am still allowed to play tennis. I've been playing for this long on a bad hip, and I wouldn't be causing myself more harm. I am making an appointment to get a cortisone injection next week into the inflamed area of my hip. This might eliminate my pain and my body might repair itself. It's only a 15 minute procedure and I can be active within 2 days.

If that injection doesn't work, it seems like the next step is surgery- an arthroscopy that would repair the tear. This surgery has a recovery time of 6 weeks to 2 months, so I might wait to get it until after the tennis season is over (if I do need it.)

I am going to try and post pictures of my x-rays soon, as well as photos from my MRI if I can get access to them. And of course I will keep you updated about my injection next week. The good news is it can't be worse than the steroid injections I got into my vulva this past summer!

New Development

It seems like I have some pretty exciting news to report. However, I'm trying not to have expectations because I have gotten my hopes up so many times before. I went to physical therapy very early Friday morning and we talked about how difficult it has been for me to sit and the general increase in my pain levels. I also have been doing the hip exercises which are simply lifting my left hip in three different positions. Even though it is minimal movement, it hurts a lot, especially when compared to my right hip.

As we were talking, we decided it's time to get x-rays and an MRI of my hip to see if there's any possible problems. Stacey has had four patients with vestibulitis who all either had a tear in their hip muscle or their bone was scraping the nerve. As you can see by this picture, the hip is located right next to your pelvic floor, sit bones, and all the muscles that have been giving me difficulty. For the first time in my life I am hoping there is something wrong with me. If they do find something in my hip, it can be corrected by surgery. All four women who had hip problems do not see Stacey anymore. It took them awhile to get better, but they still got there. It would be so comforting to actually know an end was in sight. I wouldn't mind if someone told me the end was 5 years from now. At least I would know there was going to be an end.

Luckily, I don't have to go all the way to NY for my hip to be looked at. Unfortunately, the doctor can't fit me in until February 26th. I'm going to call every day hoping for a cancellation. Tennis season officially starts February 8th, so I would like some answers before we really get into the swing of things... no pun intended. My best case scenario would be finding something wrong with my hip, but still able to play this season, and worry about surgery the beginning of May. But, of course my health does come first, and if I have to sit out this season, so be it.

The good and the bad

A lot has happened since my last post, so forgive me as I just jump right into it.

I think mentally, I've been doing much better recently. Being back at school has a lot to do with it. I seem to do much better when I'm in a constant routine. I know I'll be in the same bed every night, I know what time to go to classes, to tennis, dancing, etc. Even though I'm the busiest I've ever been, it's relaxing to be in a set schedule.

That being said- being at school also brings a new set of challenges. I have two 3-hour classes, which make sitting difficult. This makes me so angry. I shouldn't have to worry about whether or not I can sit through class, I should just have to worry about the actual work I have to do. And this semester since I have 4 history classes, I'm averaging 800-1,000 pages a week. But it's something I enjoy- I just want to be able to concentrate on it.

Usually history class is a great opportunity to learn, think, and debate, and not have to think about my health. You would think vulvar vestibulitis and Women in 20th Century America would have nothing in common. However, last class we began talking about female hysteria, a common medical diagnosis 100 years ago. According to Wikipedia, "Women considered to be suffering from it exhibited a wide array of symptoms including faintness, nervousness, insomnia, fluid retention, heaviness in abdomen, muscle spasm, shortness of breath, irritability, loss of appetite for food or sex, and "a tendency to cause trouble". Obviously this "disease" is ridiculous, but for a long time women believed to be suffering from it would undergo a "pelvic massage or manual stimulation of the anterior wall of the vagina by the doctor until the patient experienced "hysterical paroxysm" (an orgasm.)

At this point everyone in class burst out laughing. Needless to say, I sat there upset and angry that #1- I had to listen to my professor talk about pelvic massage therapy during a history class and #2- everyone thought what I go through every week was so comical. Obviously it's not fair to be mad at the class because they don't know the circumstances, but I still find the whole ordeal ironic.

Everyone keeps asking me if I'm getting better because of physical therapy. I can't tell yet. I think I've been having more problems sitting lately, but I also just got my period and didn't have nearly as much pain the day before as I usually do. I also went and got examined by my specialist and was able to better tolerate the speculum.

There was an email recently sent out about another psychological study being done for vulvar vestibulitis patients. This one dealt with relationships and the difficulties of telling new interests about your condition. I can sympathize with the many women out there who have to go through that. I've been trying to date a lot recently- for many reasons. Sadly, I think one of them is that I miss human contact. Every week I get poked and prodded by my pt, and every night I have to poke and prod myself. My body has just become a giant medical land- it's not mine anymore. As much as dating is exciting and fun- maybe what I really want is someone to take care of me. I try so hard to be strong, but maybe I do want someone to lean on. I know I have my family and my friends for that, but maybe something else is missing. The problem is, I don't think I'm going to get it anytime soon. I don't know too many people who want to take on someone else's troubles, especially when they are extremely intricate. That's why I continue to just detach myself and try to not get involved. There's only so much rejection I can take.

As silly as it sounds, I wanted to thank you for listening. You, you mysterious readers from all over the world. I am not comfortable throwing all this information to just one friend. I don't think it's fair. I know it's a lot, which is why I'm so relieved once I submit this post into the internet abyss. Then I can finally clear my mind and relax.

Let's throw in two more doctors

Physical therapy again this morning. I've been feeling better then the past two weeks, but still having random spurts of pain and difficulty sitting.

We tested the strength of my hips today and found out some interesting things. Both my hips are strong from being an athlete, but my left hip is "half a grade" weaker than my right. The difference is very distinguishable. If you remember correctly, I was born with an inverted left femur, which we have always suspected has been part of the problem. So now I'm supposed to go get x-rays and see a hip doctor in Philly. Another doctor to add to the growing list. But I'm really excited to see what we find. Apparently the nerves around my hip might be inflamed which might be contributing to my pain.

Now that tennis is about to start, my PT also wants me to start seeing a deep tissue massage therapist to work on my entire body, but especially releasing my legs and butt. So I have to talk to my trainers at school to find someone locally, because there is no way I'm spending more time traveling far away. Commuting to New York is very hard, and I'm not even back at school yet.

Speaking of commuting, I have to go to see my specialist in Philly for a check up on Thursday and then back to physical therapy in New York on Friday. I'm a little upset my week got taken over by doctor appointments.

Other than that, no real news to report. A quick FYI- I just signed up to post applicable ads on this site in order to raise money for the National Vulvodynia Association. It won't generate a huge amount, but every little bit helps. I think research is so important. It's so frustrating to know exactly where my pain is- the exact muscles... and I still can't do anything about it. I want some real answers.

A rough two weeks

These past two weeks have been pretty rough. I've had major problems sitting, and feel a lot of pain in my butt muscles. I've been discovering a lot at physical therapy, so here's some things I've recently learned.

If you look towards the bottom of the image, you'll see a woman's pelvic floor muscles. They are shaped like a bowl and surround several organs. So, the muscles that are causing me pain right around my vagina also wrap around towards my backside. The past two weeks, I've noticed an increase of pain around my butt cheeks, especially where I sit, so we've been doing therapy on those muscles as well. Now, my PT will check my vaginal area, and then have me lie on my stomach and work my butt muscles. Then, she does what she calls "rectal release" where she stretches my muscles internally. It is amazing how tight they are. I still can't release them at all, they are still contracted all the time. I'm hoping once I learn how to let go of them, my pain will improve significantly.

Today's therapy was frustrating because I had retreated a bit. My muscles are still so tight- apparently a penny could bounce off them. I'm also red in the vaginal area and have a discharge. My physical therapist told me to go back to see my specialist in Philly to make sure everything is okay because I might have a yeast infection. Another appointment I have to make.

Commuting to New York is starting to get very difficult. I have to plan so much around it. And I was so frustrated after therapy this morning that I was on the verge of crying in the room. But I don't like people seeing me cry. So I waited until I got home. But right now I'm reading a book called Mountains Beyond Mountains. It's about an American doctor who is devoting his entire life to the people of Haiti to make sure they have proper healthcare. While I was sitting on the bus, reading about these people who have nothing, yet still hold a positive attitude, I couldn't help but change my own attitude. This morning I was so frustrated I was ready to completely break down. But there's no need. There are so many people in the world who are worse off than me, and I need to think about them when I'm upset, instead of those who are better off than me. I'm also lucky enough to have amazing people surrounding me always. They give me strength. If anyone is going through a rough time as well, I've also been listening to this song non-stop. It's beautiful and helps me through.
Orange Sky by Alexi Murdoch

A New Mountain

I had serious doubts today about climbing the seven summits. I don't know why the thought originally crossed my mind. I do love adventure and the idea does appeal to me- but it's a significant time and financial responsibility that I would be shouldering for the next ten years. Not to mention it's dangerous. I think climbing Kilimanjaro gave me a taste of what being invincible feels like. I loved standing on top, feeling like I could do anything. I want to feel invincible all the time because I want to feel like I can conquer my health. But now I'm afraid that I'm doing all of this to run away. If I keep busy and if I'm always planning something in the future, I'll never have to think in the present and face my current situation and the fact that I am afraid. I'm scared, I'm scared, I'm scared. I don't want to pretend to be strong anymore and I think climbing the 7 summits was my way of showing people how strong I was and that I was fine. I don't want to keep running away. How am I going to get better if I do? Doesn't everyone say you need to stand up and look fear in the face? I think I need to stop living in the future and come to truly accept my present. Shoving it aside hasn't helped.

So now I don't know what to do. I went to go talk to someone a couple days ago and they've really helped me think and shown me the power of mind over matter. I know that I'm so worried about all the strain and hardship I've put on other people. I can't stand to see them upset over me. I want to get better so badly so they can stop worrying about me. I am tired of being the person who needs help. I have always been the supportive person, and love giving people a hand when they are down. I don't want to be on the ground anymore.

So I don't know what the right thing to do is. The person I spoke with told me the power of saying no, even if it's to your best friends and even if it's to yourself. That's something I really need to work on. I really do need to learn how to relax and stop running around like crazy. I need to slow down, even if being busy is all I know how to do. I also need to know how to say no to myself. I've been so scared to say no about my summer and my goals, but maybe it's time to step back and just relax. I think I've made great progress already (my last physical therapy appointment went much better then last time) and I really am excited to see how the next months pan out. But there's so much work to be done. I think that's the real mountain I need to overcome and the real one I should be focusing on right now. My dad suggested a couple of days ago to perhaps stay and relax this summer. And I think it's time I finally listen to him. I don't know what I'd do without him and my mom and my entire family. I am so blessed to have them in my life, supporting me every step of the way. All I want to do is to be better so they don't have to worry about me anymore.

I know that this was a little over the place, but letting it out feels so good, so I can't help but post. I think I've had this horrible feeling in my stomach and now I feel like a big weight has been removed from it. There. It's out.