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.

Bump in the road

The past couple of days haven't been too great. I guess it started Saturday when I noticed a little blood after I did my physical therapy exercises. It was nothing drastic, but the past few days I've also experienced heightened pain levels and can't put the dilators in. I went to physical therapy today and apparently there's many possible reason why I've backtracked.

The blood is one of two things- I either have a small tear or I inserted the dilator a little too far, which instigated that reaction. But, it's not a big deal and happens to a lot of women.

The elevated pain levels could be due to:
-stress (finals week)
-working out (have been going to the gym every day to get back in shape for tennis/climbing)
-Estrace (just started it 2 weeks ago)
-my time in the cycle (it's about halfway between my periods and this is the time my muscles could be very tight)

So no one knows which one of these or which combination is responsible for my problems. I also may have a yeast infection, but my therapist told me to just keep an eye on it now and wait to see if it gets worse. I've been taken off the dilators until finals are over, but I'm still on the Estrace.

It's frustrating to have made so much progress and almost feel like I'm back to step 1. And if this is due to high levels of stress and working out, then what am I supposed to do? Being active and stressed is just a part of my life, of most people's lives.

But I'm not getting upset yet, I think it's just a bump in the road, and hopefully a week from now, I'll be back on track.

Progress!

I've been to physical therapy twice since my last update and a lot more has happened. I found out the extreme pain I got right around my period occurs because my muscles contract (which usually causes cramping.) Although I don't personally contract hard enough to feel bad cramps, even the slightest contraction is causing my pelvic floor to spasm and clench even tighter. Interestingly, this is also why many women with vvs (self included) have yet to have an orgasm because our muscles tighten up (like they're supposed to), but they don't know how to let go and we can't experience that release.

That session was pretty painful externally and internally. But, I was still given the small dilator and told to do the XS for 10 minutes and the small for another 10 minutes after that. I've gotten much better at relaxing and it no longer hurts to insert.

Tonight the therapy was so significantly less! I was still hooked up to the machine to watch my levels, which is still very interesting to watch. I was doing so well and my therapist said I'm doing "Fantastic." So fantastic that she asked if I wanted to skip a size (small plus) and move right to medium. I seized the day and said of course, so now I'm collecting dilators left and right. They aren't cheap either- $25 each!! I have no clue what I'm going to do when I'm done with them...

So, in short, I'm moving up, and seem to be making sweet, sweet, progress :-) I hope it keeps up!

Ouch

I've had a pretty sharp stabbing pain since Saturday night, which has increased while sitting. For the life of me, I couldn't understand why this was happening. I thought I was making progress and haven't had that type of pain in a long time. Well turns out I got my period Sunday morning. I don't understand why I experience such elevated levels of pain right before I menstruate, especially if the cause is more muscular then hormonal. Will ask this when I go to physical therapy tomorrow.

A Good Wednesday

I came back from physical therapy smiling today, almost the opposite reaction from last week. Today we hooked me up to the biofeedback machine in order to show me how my pelvic muscles contract. It was very interesting to see. My last experience with the machine was awful- I had to insert an extremely large sensor, but this time I had tiny senors put on externally below my vulva.

At rest, my pelvic muscles were pretty calm, at a steady 2 or 3. They would randomly spasm like I had seen before and jump to 20 or 30 and then back down again. I was told to keep looking at the machine while I went through therapy to get a better feeling of when my pelvic floor contracts.

The external therapy was significantly less painful! My right side was very easy to endure, and my left side was much worse, but still better from the last time. Stacey said I wasn't kicking her as much which was a great sign. When it was time for the internal exam, something interesting happened. Stacey was just putting on new gloves and getting lubricant, and my levels on the computer screen jumped from 3 to off the charts beyond 50! My brain anticipated the pain to be so great, my pelvic muscles contracted before they were even touched. Slowly, I tried to calm down and relax. We did the breathing exercises I went over last post and then she had me push my muscles out which can be best described as trying to let out gas. While doing that, it is much easier and much less painful to insert her finger or my dilator at home. My new homework is to insert Excalibur for ten minutes, remove it by pushing it with my muscles, and then re-inserting it for another ten minutes.

Just by beginning to learn how to relax, I feel like I've already made progress. I know this won't be an easy fix, but I finally feel hopeful again. I can't wait until Winter Break when I can go twice a week. As hard as it is to commute into the city and go through the therapy, I'm being proactive. I can do this.

I'm still sore after therapy, but it's not such a sharp pain. It's not a very significant change, but I'm going to celebrate about any slight change. On another note, Stacey wants me to start seeing a psychologist. She says she recommends this to all her patients to help them go through the process. I've never seen one before, but she's been right about everything so far, so I'm going to do what she tells me. I was wondering if anyone had experience with this and could offer recommendations?

New York 2

Despite my lack of a creative title, Wednesday was my second physical therapy session in NYC. A couple things I want to point out (in list form):

-This time I really worked on being less stressed by getting plenty of sleep, listening to good music while I got ready, and giving myself ample time to get to the train station. It was a much better experience and I think relaxing is more effective than some think.

-We did the same therapy, but surprisingly, I was in more pain on my right side this time. Stacey thinks it's because she spent so much time on my left side last visit. So now we're trying to accommodate both sides.

-The worst place for me seems to be the tissue right underneath my leg. I don't have a good medical explanation, but I would describe it as the part of the butt cheek that connects closest to the vagina. That's always the part where I am most sore and where I begin to tear during therapy.

-We spent more time working on breathing. A good exercise is to lie flat on your bed. Take a deep breath in, and then as you exhale, tighten up your pelvic muscles. Release them as you breath in again. This is the opposite of what we normally do, so at first it's like patting your stomach and rubbing your head. But your pelvic floor does naturally release when you inhale, which is pretty interesting.

-I was given exercises to do after this session, which I am going to continue to refer to as my "vagina homework." I now have an extra small dilator that is a weird hybrid between a candlestick and tampon. I have given it two sweet names to try and lighten the situation- Everest and Excalibur. I feel like a human name would be weird; at least I can get in the mindset of overcoming these two inanimate things. I have to use insert Everest once a day and lie on my back for 20-30 minutes. The point is to try and get my muscles to relax because they are tightening up now even before something comes close to touching them. I see it as the same idea as being ticklish. You don't even have to tickle the person for them to squirm.

-The only thing that really makes me bitter is the lubricant I had to buy from the physical therapy office. It's so cleverly called "Slippery Stuff"- bonus points to whatever genius came up with that name. On the very front of the tube, it says "Heightens the pleasure of loving intimacy. Silky, safe, and long-lasting." Then on the back is says, "Slippery Stuff enhances the pleasure of human contact." I have used it three times now and I think I'm going to complain and send it back because I certainly haven't experienced any pleasure with it. It must be a faulty tube.

-I was in a private blues lesson on Thursday and found out my pelvic muscles and frame naturally sink back (most women tend to lean forwards.) This has caused me to by hyper-sensitive in my lower back. There's a couple of yoga positions I can do to work on relaxing my lower back. It seems like dancing can also work as physical therapy. In that case, I'm going to work on calling my insurance company and having them cover private lessons and dance exchanges.

Physical Therapy in New York

Yesterday was my first physical therapy appointment with Stacey Futterman in NYC. I came out torn between emotions, which always seems to be the case.

My first mistake was creating a stressful day. I was rushing to catch my train, rushing to walk to my appointment, and rushing back to catch an early train. I also had a lot of work due that I was constantly thinking about. After speaking with Stacey, I realize even more the importance of avoiding stress any way I can. It seems that my pain gets worse with stress and creates another obstacle I have to work through. I'm going to try my best from now on to give myself plenty of time to get to the train, get my work done in advance, and give myself time after my appointment to come back and lie down. This is easier said then done when you're an active college student.

I got a good feeling right away from Stacey. I didn't feel bitter towards her like my gynecologist, (probably because I knew she was an expert in the field.) She was friendly, but not overly friendly, open, and most importantly made me feel comfortable. She very obviously knew what she was doing and earned my trust quickly, which is not easy to do.

We had to do an initial evaluation even though I had done one in San Francisco. At this point I'm pretty good at repeating the entire story in under 5 minutes. After that, she left the room and I was told to undress from the waist down. Now, I've been told this many times, and each time I'm always confused with what to do with my shoes. If I had sneakers on, I would take them off and just wear my socks. But I wore cute ruby flats to therapy and didn't want to have my bare feet out. One, I'm sure they would smell pretty bad and two, I felt I could play a trick with them on. Almost like if you glanced me over quickly you'd see my shirt and shoes and just assume I was wearing pants. Don't ask me why I became so self-conscious over my feet. I'm curious to know what Stacey thought when she came back in and saw me lying on the table, wearing my red flats...

She did a therapy session that was very similar to Liz's in San Francisco. We began with working the connective tissue above the vagina and in both my legs. Again, the left side is significantly worse than the right. The difference in pain level is very noticeable- I was having a hard time dealing with the pain on the left, but the right was a little more bearable. I almost miss the days of a ten second steroid injection. Dealing with therapy for an hour is extremely difficult for me. This is why I think it's so important for me to destress as much as possible before I get there.

Stacey ended with an internal exam and internal therapy. This was the worst part, pain-wise. She taught me a breathing exercise and a better way to sit as well, which I will go into more detail next time. She also recommended I go back on the Estrace cream. I had been applying it twice a day, but stopped when I left for Tanzania and haven't gone back on it because I wanted to see what treatments were working. So, I'm going to make an appointment back in Philly to get another presciption. Stacey also recommended getting an MRI of my left hip in the future.

After the hour, I made appointments once a week until my break, when I need to come in twice a week. Stacey said I have a lot of work to do and she would like me in twice a week when I can. She didn't tell me the time frame we're working with because everyone heals differently. Howeer, she did say generally, a year is the most it would take. I'm crossing my fingers.

It's nice to be back in a routine again. I have that same satisfaction that I am actively doing something to get better, which is a great feeling. And I'm very confident that this treatment is going to work. Everytime I notice the significant pain on my left side, I really believe this is a tissue, muscle, and nerve problem. I wish I didn't have to treck to the city once or twice a week, but I'll do whatever it takes. I'm very sore today after the therapy yesterday, and it's a little frustrating to deal with. It's very hard to sit today, so I try to stand as much as possible and leave classes to go to the bathroom whenever I can. It's just a very long and daunting road ahead, but I'm going to push through the pain and work as hard as I can to be pain free by Thanksgiving of next year. I can do it.