I was a chronic pelvic pain patient who wrote about my health struggles for 7 years. After successful treatment and returning to school, I am about to become a women's health physical therapist. Some estimate 5% of women as well as millions of men will experience pelvic pain in their lifetime, yet they are under-researched, misdiagnosed, and misunderstood. In the midst of rapidly evolving medical discoveries and technology, priority needs to be given to pelvic pain.
of their freedom.
How do they learn it?
They fall, and falling,
they are given wings."
-Rumi (translated by Coleman Barks)
Wednesday, July 15, 2009
Monday, July 13, 2009
Beginning of PT, tape, and core stabilization
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
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
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
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
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!
Wednesday, April 1, 2009
Surgery is set
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.
Sunday, March 29, 2009
Hip Surgeons
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.
Friday, March 20, 2009
The Seach for Hip Surgeons
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.
Tuesday, March 3, 2009
Cortisone Injection
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!