Levator-Hater (a long one)

Some of you know this and some of you don't, but as of today I have officially been dealing with intense, chronic pelvic pain for exactly one year. It's a hell of an anniversary. Sometimes my life is halted by the pain - it literally stops me in my tracks - and sometimes it is mild, but it is always there. It's a pain that is hard to describe...a nagging, aching, gnawing pain that 80% of the time is dull, yet strong, and 20% of the time is extremely sharp. It is exacerbated by sitting, driving, laying down (the list goes on), and started on my right side but quickly spread to my left side.

Two months after it began I was able to see my doctor about it, and she thought perhaps it was endometriosis, so she put me on a new BC pill but nothing changed. I started doing a lot of research on endometriosis and drastically changed my diet and lifestyle. However, the pain always returned. We changed the pill again and still nothing, so after I moved back to Dallas and after my insurance kicked in, I saw her again and she referred me to a specialist who was so booked that they couldn't fit me in for another month. I was excited to see a great specialist, but was also terrified that she would find nothing unusual and tell me she had no idea what it was. You see, I had been dealing with the pain for so long that occasionally it seemed like it was "in my head." At times the pain was so penetrating that it sort of radiated to my lower back and my upper inner thigh. But I learned to cope with the lower levels of pain to the point where it felt normal...like my tolerance of pain increased and I wasn't as aware of it as I was when it began, and it had to be at higher registers to grab my attention. Eventually I felt it invading my life and almost changing me into a different person. I was fatigued from this pain that just wore me down, and I was constantly fighting off irritability and exhaustion. The happy, fun-loving, optimistic person I used to be was fading and I became moody, impatient, pessimistic, and it was all starting to seem hopeless. My life became consumed by pain. There was never an escape because even sleep hadn't been restful in months because the pain never stopped, not even at night. And I was constantly trying to put up a happy front to everyone around me (which was exhausting and frustrating in itself). At work I would go to the bathroom and cry on the bad days, just wishing I could call in sick every time I felt pain this intense but knew that I couldn't because then I would never be at work. So I felt I would just go mad if this doctor didn't know what it was...that was my biggest fear.

September 24th at 7:00am, I left my building and biked to Baylor for my 7:30 appointment. I didn't have time to be nervous because, well, I was half asleep, and also because I was the first appointment of the day so there was no patient backup yet. The doctor took my blood pressure (which surprisingly enough was 90/65), weight, height, etc., and then I went into her office and started telling her everything from the beginning. At times I got really choked up and my voice was quite shaky but thank goodness I held it together and didn't actually shed any tears. (My family doctor has seen me cry at least twice about this and I always feel stupid and silly but I suppose it's normal for emotions to run high when talking about chronic pain that has effected your life in as many ways as it has mine.) After the consultation she did the exam, and without hesitation, told me the news I had waited 10 months to hear...I do not have endometriosis. I have Levator Ani Spasms (also called Levator Spasms or Levator Syndrome), which is a type of Pelvic Floor Dysfunction, or PFD. There is no known cause, but it can be triggered by stress, sex, injury, sitting for long periods of time, even something as simple as a routine pelvic exam. Basically, the levator ani muscle in the pelvic floor spasms out of control, causing pain. In a "normal" person, this muscle would spasm 0-5 times/minute; anything higher than 5 can cause pain. Someone with Levator Syndrome can have it spasm 10-20 times/minute. There is no "cure," but there are several treatment options, but unfortunately no controlled clinical trials have been done on the success rates of these treatments. They include electronic stimulation (coupled with biofeedback), sitz baths, massage, muscle relaxants, physical therapy, and sometimes Botox injections. It seems the most important thing is to try and figure out what exacerbates it and triggers it and to deal with the root of the problem, and not try to cover it up temporarily, such as with Botox or constant muscle relaxers. My doctor told me to start coming in once a week for 6 weeks for electrical stimulation/biofeedback, and prescribed Flexeril for my pain (which I take at night to help me sleep but it's so strong that I rarely take it during the day; even 1/2 dose makes me pass out at work).

Two weeks later I arrived for my first appointment. It involves probes (yes, that's plural, and yes, they go where you think they go), which send info back to a computer that the patient cannot see (it is important that the patient learn to feel and control the pain and not know by watching the screen when the pain is the worst). First the resting levels are checked - an average of spasms/minute before the treatment starts. The first week it was 16/minute. I asked if this was high in patients she sees with this disorder, and she looked at me and very seriously said "it's high." Next is a series of muscle contractions similar to Kegals, and then it ends with the actual electronic stimulation, which is an electrical current sent to the muscles in very rapid succession causing them to contract over and over with the purpose of wearing out the muscle so it relaxes. Then she printed out a sheet for me to take home with directions on watching what I eat to see if there was any correlation between diet and pain, and told me to do a certain amount of muscle contraction exercises/day. That week I felt a little better, and I went in to my appointment to find out that my beginning level was 11 spasms/minute - good news! Unfortunately, the week after that I had quite a bit of severe pain on Saturday and Sunday. I knew I was not stressed those days, and I followed the directions for trying to relax the muscles, but it didn't work. The Monday after all the pain my average resting rate was 18/minute. Bad. So, after talking more to my nurse who does the treatments (we'll call her Amy) about how for years my hips have hurt after I wake up in the morning, she said she would talk to the doctor about my trying physical therapy to see if something physiological about my body was also contributing to the pain. (My doctor works closely with two physical therapists in Dallas who specialize in pelvic pain.) So I made an appointment for this past Monday the 29th with the physical therapist in Carrollton for 2:30pm, after my morning doctor apt. That week the pain was also fairly bad, and that Monday (the 29th) my resting rate was 21/minute (ouch!). Amy said to see what the physical therapist said that afternoon. She was really nice with a thick Russian accent and again, I started from the beginning and told her the whole story. Then she explained more about Levator Syndrome and how she treats it, and then had me lay down on the table and she measured my flexibility, strength, and looked at the symmetry of my hips and legs. She basically told me that I am extremely flexible, but that my inner thighs are quite weak, and that my left hip bone was 1" higher than my right. She reiterated that this is not a bone problem but a musculature problem. My right leg is much stronger and more flexible than my left, and this unevenness is causing my hip bone to rotate down and forward on the right side. Then she did some manual massage, and put me on their electronic stimulation machine in combination with moist heat (yes, I used the word moist, one of my least favorite words ever). She scheduled me for 3X/week for at least the next two weeks. After my session yesterday and today, for about 2 or 3 hours after treatment I felt *almost* normal! The pain returned but she assures me that someone my age should be able to concur this, and that it won't be a quick fix. 4 copays a week are really hurting, but not as much as the pain, so thank goodness for insurance. I have learned exercises and other things I can do at home and at work to try and mimic some of the things I do in PT. This upcoming Monday is my 5th electrical stim/biofeedback apt with Amy, followed by a consult with the doctor, so I will find out if my resting rates are lower. Updates to follow....

It took me a while to gather as much info on it as I have, because even in the age of the internet, there is very little information online about this. I have just kept asking questions until I finally have my brain wrapped around it. Some pages quote that this affects 6% of the population, but my physical therapist says that is misleading because many many people are either misdiagnosed or never seek help. I couldn't understand how a muscle could spasm and I didn't actually feel the individual spasms, just the pain they caused. She compared it to the heart and lung muscles, and how they contract and expand all day and you aren't really aware of it. I also didn't see how spasms could cause this degree of pain, and she said to think of it like ab crunches. If you did 15 crunches/minute all day long that muscle would really burn and hurt, and that's what I am feeling but it has been continuous for a year. The pelvic floor muscles are kind of woven like a basket, and are suspended like a hammock. The "ends" of the hammock are attached to the lower abs, pelvis, and other places. Since my pelvis is rotated, it is pulling and stretching some of these muscles taut, which makes the spasms worse.

When she told me that I was very flexible, I asked if this is a bad thing, because I always thought it was good to be flexible. She said flexibility is good, but is bad when combined with weak support muscles. This causes the hip bone to wiggle around more on the hip socket, wearing out the cartilage faster, and that if I don't correct this in the next 5 years, I may end up like my mother who is getting a hip replaced this December and is only in her mid 50's (weight training in PT and the gym is helping me with this; specifically working on my hip socket).

I found out that taking ballet for 10 years basically "trained" these muscles to contract more than they should. In ballet, your core and lower abs are always pulled up and in, while your rear is contracted and pulled down. This constant posture pulls the pelvic floor up (since the pelvic floor muscles are attached to the lower abs) and trains it to be tight. PT is helping me to loosen the pelvic floor so it will relax back into place.

If you have a tendency to be able to hold your bladder for a long time, don't. I always thought I was rather gifted to be able to go sooooo long without going, and that it came in quite handy at work since we are so slammed that I sometimes don't have time to go for 4 hours at a time. When you have an urge to go and contract those muscles until the urge goes away, your body still needs to go, and you train those muscles to constantly contract and be tight which is baaaaad. I have orders so go every 2 hours whether I feel like I need to or not.

Many of us sit for long periods of time at work. Try and get up and walk around every 2 hours or so. Or do some squats at your desk to stretch out those muscles.

I was given a list of foods to help me to regulate my body...acidic foods, alkaline foods, foods with fiber, etc. Learned that caffeine will actually help relax my pelvic floor (coffee, tea, yay!), but everything in moderation, of course.


So, I am finally on my way back to normalcy. The pain has not gotten better yet, but just that hour or two after PT when the pain is lowest is like a little miracle; a glimpse into a pain-free life. I feel lucky and blessed to have wonderful doctors who correctly diagnosed this within a year of the onset of pain, as I have read about people who went 5, 10, 15 years living with this pain and were misdiagnosed or not properly treated. I find myself fascinated by what I've learned and am still learning, and am reminded of the mind/body connection and how everything we do and every muscle in our bodies is connected to other muscles and effects many things we never think about until we feel pain from something that tells us to stop. r e l a x. listen. Pay very close attention to your body and what it is telling you about your life, lifestyle, career, relationships, and diet.