Saturday, March 12, 2011
Sunday, February 21, 2010
Help Across The Pond
I am usually wary of sites that give information on pelvic pain and give instruction on strengthening the pelvic floor. The site is VERY clear about learning to relax completely before jumping into strengthening, and I LOVE the descriptions of the relaxation sequences. Sniff, Flop, Drop. Even I can remember that.
Thanks, Maeve Whelan, for coming up with this wonderful resources, for women all over the world!
Wednesday, February 10, 2010
- A Woman's Manual
By: Isa Herrara, MSPT, CSCS
This is a comprehensive manual for women who suffer pelvic pain and are seeking control of their condition and their lives. Ms Herrera has tackled a daunting task, filling her book with information, resources and techniques to benefit women with a wide range of pelvic pain conditions. This is the book that I felt needed to be written, and if someone else hadn't step up I would have eventually made a feeble attempt to do it. Thank Isa, for saving me, and the world from my trying to write this. She gives detailed explanations of the anatomy involved, how pelvic pain coincides and contributes to pain in other regions of the body, and how postural habits and activity influence pelvic pain. She then goes into very detailed explanations of self-examination and self treatment. Her program includes exercise, stretching, self-massage, diet, posture, heat and cold therapies and stress control. I am especially impressed with the description of internal massage and stretching for the pelvic floor, a very difficult activity to teach in this format. I have always felt more comfortable with the results of direct, individual demonstration and training, whether teaching self-massage or teaching a partner. Whenever I have tried to create a written instruction tool, the performance by the reader has been variable. Isa's instructions seem sound. It is difficult to assess, if you already know how to do a technique, reading it is a reminder, and of course it makes sense. I would like to see how the application from an untrained reader would be. My guess is that most people with a little trial and error will figure it out quickly enough.
It is suggested at the beginning of the book that the reader go through the entire text before implementing any of the techniques. I highly recommend this, as it is a lot to absorb, and some of the important elements, such as moving slowly, listening to your body, achieving relaxation before strengthening, etc. are reinforced throughout the text, and may be missed with a hurried, "jump in with both feet" approach. The beginning chapters of the book, where she discusses anatomy and conditions are a little top-heavy academically. The use of technical terms in language and description may be difficult for the general population, but there is a comprehensive glossary, and anatomical terms have illustrations that go along with them. In my experience, women that suffer with pelvic pain are the amongst the most knowledgeable population seeking health care. They often have to do their own research, and familiarize themselves with the lingo. This book is a little heavy, but worth the effort.
I feel that this is a "must" read for health care professionals working in this field, especially those that have patients that are isolated from access to caregivers and must perform a large portion of their treatment themselves. It is a manual that I wish had been available when I was actively treating patients, especially when I would get people that were coming into town for a couple of days and wanted a "training" session, because there was no one in their area. On that note - the author consistently mentions the need for a "team approach" to care. This book will best serve those that have access to knowledgeable health care professionals, who can help them tailor the activities in the book to their specific needs. I would love to see this book presented as a work book, with the goals, self assessments and a companion DVD.
And now, because it can't all be glowing, there are a few things that I would have liked to see a little different. Ms. Herrera tells how she uses a "mind-body-spirit" approach in treatment. Early in the book she mentions the 1st chakra and its relation to the pelvic floor. It was mentioned in passing which can be slightly problematic. Those familiar and comfortable with energy healing techniques may be disappointed in having a mention without substance to follow up. Those that consider "Eastern" concepts to be snake-oil, or worse, EViel, will be put off, for no reason. Lastly, as detailed as the book is about everything else - there is not an in-depth explanation, so the curious and uneducated are left hanging.
Ms. Herrera gives resources to follow-up on many conditions, and she hit most of the major ones, but were some that were missed, and the miss was obvious enough that there almost has to be some underlying motivation. The ICN was mentioned no fewer than 3 times. The ICA was not mentioned at all. For those unfamiliar with these two groups, the ICN is a public, for profit site, full of information about interstitial cystitis. It is an amazing site, with chat forums, information, resources, I recommend it to people all the time, and the founder, Jill Osbourne, has done so much to help advance the cause of pelvic pain research and help that she is one of my heros. The ICA is a non-profit site, covering much the same mission, they have individual patient advocates available to help you walk through the incomprehensible maze of early diagnosis, they put out a beautiful patient oriented magazine 4 times a year,and they work very hard at bringing information to the medical community, and to patients. I am not involved in the politics surrounding these organizations, I do know that there are some differences in style and delivery of information between the two. I am a little disappointed that a book designed to help women, a book that outlines almost every possible treatment option with a "pick and choose what works for you" premise, would not mention another option in resource information.
All in all, a good read. Just be prepared to learn something. Don't think of this as a "book" to "read" but a manual to guide. And don't give up on finding a health-care specialist to help.
addendum - Isa just sent me this link - it is an online resource kit companion for the book. All of the forms in the book for tracking and managing your pelvic health can be found in pdf format here.
Thursday, April 09, 2009
She is a certified sex therapist here in the Tampa bay area, I specifically referenced her in the last post, because she has a wonderful program for adolescent girls and their Mom's. Call or email her with specific questions. She is the Bomb!
A Difficult age
The prevalence of dypareunia (pain with intercourse) in adult women is reported to be between 12-20%. With vulvar pain being the most common site reported. Prior to this, younger populations have not been studied in large scale. First - do we really want to look at how young our kids are being sexually active? From a medical/research/cultural aspect - of course we do. As a Mom, I'm sort of hoping celibacy will catch on, and my daughter and I can have this conversation right before she gets married, at 30, with her PhD. in hand.
Even worse - do we want to think about painful sexual dysfunction in the very young? As I have treated my share of very young girls (15-19yrs) with severe vulvodynia, I applaud the authors for looking at this very difficult subject. The results show that 20% of sexually active girls, aged 12-19yrs old reported pain with intercourse. Of those that reported chronic problems, 67% had significant pain with initial tampon use. There is a 4-fold increase in the prevalence of chronic dyspareunia with girls that have pain at initial tampon use. These same girls had difficulty with all non-sexual forms of penetration, pelvic exams, tampon insertion, etc.
We can not exactly extrapolate the results. We do not have long-term studies showing that this 20% will be the same 12-20% that carry dyspareunia into their adult lives, but the data is compelling. When I first started taking courses on pelvic pain, vulvodynia and sexual dysfunction, one of my instructors talked about the importance of educating girls before their first sexual experience. Teaching them to be aware of the pelvic floor, staying relaxed, and being in control of the situation. At that time she quoted a study (don't remember from who or where) that showed a higher percentage of chronic dyspareunia in women that had pain at first attempt at intercourse. This new study shows that it may start earlier. If our girls have pain with initial tampon use, or with pelvic exams - then we may have a warning sign of potential dyspareunia, and the education process can begin earlier, before it becomes a huge problem in the life of a young adult.
I hope that all girls are having an initial gynecological visit before engaging in sexual activity. And, I hope that doctors, and parents, are using this visit as an opportunity to educate the girls about sexual health. I know that girls get sex-ed in school, but the programs are highly political, and many schools are corralled into "abstinence only" programs. With more and more girls being sexually active at younger ages, abstinence only programs fall far short of giving our kids the education they need to cope with the problems that they may face.
I have always felt that "an educated girl is a safe girl." If the schools aren't giving our kids complete and accurate information, it is our job as parents to pick up the ball and run with it. If the parent does not feel equiped to handle it, then consult with a professional. I have a dear friend here in Tampa, that happens to be a certified sex therapist, who offers "Mom and Daughter" classes on sexuality. She says the moms often learn as much, if not more than the daughters.
So, talk it up!
Sunday, February 15, 2009
Retention, Infection, Prevention
My daily work setting has changed. I am still in my office for a very limited number of patients each week, taking ONLY pelvic pain and TMJ patients, but the majority of my day is now seeing homebound patients through a Home Health Agency. It is different. Challenging. But different.
This population has a real, constant concern about urinary tract infections (UTI's). Chronic UTI's make you feel awful, subdue the immune system, are painful and frustrating, and for a lot of people cause incontinence. The intense urgency felt with a UTI, combined with the physical debility of these people, can make every hurried trip to the bathroom a potential disaster. An accidental leak can be humiliating, not to mention difficult to clean up, if you are alone. Being in wet clothing can cause skin break down or irritation. The frequent trips to the bathroom also increase the person's risk for falling. Another sad fact is that incontinence is the number one reason that elderly people end up in assisted living facilities. It is often just too much for the patient and family to deal with.
Why so many UTI's? Retention is often a factor. For the purpose of this post, I want to sort of reframe the word "retention". Usually when a medical person says "retention" we all think "complete loss of the ability to void." Potentially life threatening stuff. Here, I will use retention as the "loss of the ability to void completely." When you do not empty the bladder with each void, you end up with a residual volume of old urine sitting in your bladder. Anyone that has ever emptied a potty chair or urinal knows how quickly urine can become nasty. Imagine that just hanging out in your bladder, growing bacteria and disease - ugh, right?
So - the best way to prevent infection is to make sure the bladder empties. For the next several tips, the person taking charge of the situation must have fairly normal mental capacity, so if the patient is in early or middle stages of dementia (Altzheimer type illnesses) these tips will require supervision.
- Check the meds. Many medication used for "mood elevation" list retention as a potential side effect. Even if the person is not suffering that particular side effect, none of these tips will cause problems, and you may be able to prevent future UTI's.
- Do NOT strain to urinate, I cannot emphasize this enough. Not only is it bad for the pelvic floor (which I post about alot), the val salva (straining) maneuver can cause a person to pass out - especially if there are heart, blood pressure, or respiratory problems.
- Try to "double void." After urinating, stand up. Wait for a few seconds, then sit back down and relax. Not a great idea if balance is an issue, but good for people that are stable on their feet.
- "Passive void" After urinating, apply pressure to the bladder, by pushing in and down just above the pubic bone with your hands. When you are pushing as deeply as possible, lean forward over you hand, and relax your lower body. The official instructions for this kind of void has patients pushing in with their thumbs; most of my patients have arthritic hands or are simply not strong enough. I usually have them place their hands over the top of each other, or use their fist to push in. This does not work well for people with active UTI's, pressure over the bladder is painful. Wait until the infection is gone before beginning this.
- Relaxing the pelvic floor. A small step stool placed under the feet while sitting on the toilet is an excellent way to relax the pelvic floor. This will make voids and bowell elimination easier (a full bowell puts pressure on the bladder - very uncomfortable for a UTI patient). This is especially helpful if the patient has a raised toilet seat to help them get up and down easily. Big WARNING: Small movable stools are hazards for people that are unstable (balance), have reduced mental capacity, or are generally very weak. If any of these apply to the patient involved, the care giver MUST supervise trips to the bathroom, so that the stool is removed and safely out of the way before the person tries to get up, and when maneuvering to sit down.
I hope some of these tips help. If you have additional information - please feel free to post a comment!
Friday, January 16, 2009
- - - James Dickey
Sex is a complex issue for all couples. Having a chronic pelvic pain condition intensifies the complexity, and often limits the pleasurable aspect. Face it; much of our identity is wrapped up in sex. Who we are as women (or men), who we are as a couple, or as an individual, all of these have our sexuality as part of the question.
I have posted about the importance of communication, and I strongly recommend seeing a certified sex therapist to help with the process. And, before you start with "my partner is very understanding, we really don't have sex, but we are OK with that as a couple." REALLY think about that. Are you OK with it because you have accepted that this is the way it is - and you love each other, so you'll "get through?" Do you ignore it so it is a "non issue?" Just because you don't address a problem, doesn't mean it isn't there. Just think about the possibility of improving intimacy. This certainly doesn't require a sex therapist, but if it is an uncomfortable subject for you and your partner, think of the therapist as a guide.
Read the post "Sex, Lies, and Dyspar . . . who?" post for some tips and guidelines for what to do pre and post coitus to limit pain, and improve function.
For a lot of people this information is not enough. If vaginal intercourse is extremely painful, there are options. Rectal intercourse is a little much for some people to get their heads around. If it is not too "out there" for you, discuss it with your partner - they may not be as oppossed as you fear. As a warning thought, if your pain is from the pelvic floor muscles, especially tightness or spasm, this option is not going to be less painful. Be very careful when experimenting with new sexual concepts, both of your physical well being, and of your psychological limits. Change takes time.
If you are way outside of your box, allow for awkwardness (and fear), and be very gentle with both yourself and your partner. Allow a lot of emotional space. Set up guidelines early. Always, always, always have a way out. You and your partner both need to be very comfortable with saying "no" or "stop." No questions asked. It doesn't matter if the block is physical, emotional or psychological, in an intimate situation, all limits must be honored. Again - a certified sex therapist will help with working through the psycholgical and emotional blocks that come up.
There are also ways to mimic intercourse. Well lubricated inner thighs can be a sexually satisfying alternative to vaginal intercourse. And, before you do the "what's in it for the woman?" question, realize that sexual pleasure is more global for women than it is for men. We really are wired for sex, personally I think more so than men. Genital stimulation is not the biggest part of sexual arousal, or even orgasm, for most women. Intimacy, closeness, passion, all the sounds and sensations surrounding sex. For us it is a"whole body" process, and eliminating the worry and pain of trying for "penetration" can be surprisingly satisfying for both partners.
Oral sex is an option for some. Many vestibulitis and vulvodynia sufferers cannot stand the stimulation of oral sex. Again, proceed with caution. Fellatio (oral intercourse with the male recipient) can be a problem for the woman because of positioning issues. Most of the positioning options add a lot of abdominal pressure, which can increase bladder pain. Play with positions, and until you are very comfortable, don't make orgasm a goal. I also treat people with jaw, neck and headache issues, so if you are prone to these conditions, be VERY careful with oral intercourse.
Please add comments if you have postioning advice, or pre-post coitus tips.
Wednesday, January 07, 2009
- 1st grade potty humor
The under wear question is huge with the vulvodynia/vestibulitis/urethritis population. Everyone has an opinion, and, as usual, the answer is a very individual choice.
We were all told by our mothers (well, maybe just me) that white cotton, loose fitting, full coverage underwear is the best for our "girl parts." Granny underwear. And all of us, as soon as we had any choice in the matter, began exercising our individuality in panties. Victoria Secret is a modern girl's best friend. But wait - there is deep, good truth in the advice given to us about white cotton.
Dyes can be very irritating to the external genitalia. Unnatural fibres, and some natural ones (silk and wool) can irritate skin and mucous membranes. Cotton seems to really be the best option for most people. Even the cotton panel - the underwear industry's feeble attempt to combine beauty with health - doesn't quite cut it, unless the whole garment is made from some breathable cloth. I have talked to a few (OK, one) people (person?) that feels most comfortable with spandex - I do not suffer from any of these conditions, and spandex underwear will absolutely irritate the tissues around my vagina. It is a very individual choice, but cotton really is best for MOST people.
What about style? The industry has truly changed over the years, bikini briefs, french cut, thong (oh - I will get back to these), classic "granny," I'm sure they have a real name - but I've never met anyone that calls it any different. My new favorite is the boy-cut. These have the comfort of a brief, but without the elastic at the legs. Tight fitting elastic around the legs can disrupt blood, nerve and lymph supply to the region - not enough to cause permanent damage, but if the area is already sensitive and irritated, there is no point in pushing it.
It is much easier these days to find pretty, sexy underwear with less irritating qualities. The severity of your symptoms may dictate your choices from day to day, so if symptoms fluctuate, or if you are not that severe, you may have more options. Lacy pretty fabrics are still OK, as long as they are breathable fabrics, and are combined with a white cotton panel. Look for styles that are not binding around the legs, and if you are prone to bladder pain, look for styles with the waist cut either below, or well above the bladder.
Now it is time for me to get on my soap box and rant about thong underwear. This style was virtually unheard of until the late '80's, except with male strippers. When they first hit the scene, it was an instant "no panty line" success. Everyone I knew that tried them hated it, but wore them anyway, because fashion is such a callous dictator. Remember, this was the era of spandex leggings, wide belts and BIG hair. Today they are so common that many of my patients and younger relatives can't even imagine wearing anything different. Convincing people to give up thong underwear often feels like a culture war (I'm showing my age - it may even be a generation gap). But, it is a HEALTH issue.
Our rectum and vagina are seperate openings for very good reasons. The bacteria that lives in our large bowell is essential for breaking down waste at the end of digestion. There are also yeast in the bowell, and they live in a delicate balance with the bacterias. None of these things belong in the vagina. The vagina is a particularly friendly environment for yeast to grow and flourish. Anyone that suffers chronic vulvar pain knows how bad yeast infections can be, how they can make things worse, or even be the precipitating factor in a flare. Thong underwear can create a miniature superhighway for migrating yeast. Direct route from the rectum to the vagina. Not a good thing, and completely avoidable.
Remember, you always have choices, and the more educated you are about potential consequences, the better your choices can be. If you are getting ready for prom or some other special occasion, and want to wear a super tight, sexy skirt, or some flowing clingy material - by all means, where the thong. Be sensible, wear it for the evening, and go back to cotton whities for a few days after.
Share your stories (and opinions).
Saturday, December 13, 2008
Pardox - or conundrum?
It is a riddle wrapped in a mystery inside an enigma: but perhaps there is a key.
I recently recieved an email from someone with a question about paradoxical contractions of the pelvic floor. I'd like to apologize to the person that sent the email. I inadvertantly erased the email while I mused about my reply - so hopefully she will read this (sorry ;-l).
A parodoxical contraction of the pelvic floor happens when the muscles react inappropriately to normal signals from the brain, or reflexively, from the spinal cord. For instance: during normal bowell movement, the anal sphincter relaxes and is stretched as the stool moves through the opening, when it passes, the sphincter contracts quickly and strongly, ending the movement. What happens if the sphincter does not relax? or if it contracts in the middle of the movement? or if relaxation starts to occur, then spasm, then relaxation, then spasm? or if the normal contraction that occurs at the end of the movement is instead painful and unrelenting like a cramp?
These contractions are "paradoxical." They can interfere with urination, bowell movements and normal sexual function. They can be painful, or just annoying. These contractions are one of many forms of pelvic floor dysfunction, and often one of the more difficult to treat.
When I first started treating pelvic pain, I was emphatic that EVERYONE needed biofeedback (surface EMG). Over the years, I have found that with a little coaching, most people can learn to sense the difference between relaxation and contraction, even without biofeedback. However, people suffering with severe paradoxical contraction seem to respond best to biofeedback training. Often these people feel like things are relaxed, but in reality the contractions may be getting stronger and stronger. Having visual and audial cues to help sense what the muscles are actually doing is beneficial.
As with most pelvic floor dysfunctions that result in pain, it is very important to get the muscles to relax. I have many posts on this: heat, ice, a warm bath, gentle stretching, massage, meditation, whatever it takes. When relaxation is established, it then becomes the goal to relax during challenging situations (bowell movements, urination, sex).
Everyone is an individual. Treating paradoxical contractions require diligent effort, patience, creativity and time. In my opinion, it also requires an experienced biofeedback therapist.
If you can add suggestions for things that may help, please do.
Thursday, December 04, 2008
Thursday, October 09, 2008
- Lewis Carroll
Jaw pain. Head ache. Toothache (but wait, the dentist said my teeth are fine). Clicking in the jaw. Yawning hurts. Chewing is Exhausting (or painful). Can’t open my mouth. Can’t close my mouth. Numbness in head or face. No pain. Weird noises. Jaw locks. Talking hurts my head. I wake up with headaches. Resting helps. I grind my teeth. I don’t grind my teeth. I clench my jaws. My ears hurt. My ears are “stuffy,” Flying gives me a head-ache. My neck hurts. My shoulders hurt. I get migraines. I don’t get head-aches.
What is going on here? The list of symptoms looks like a mixed bag of unrelated, even contradictory sensations. But, for people suffering with TMD, or TMJ syndromes, this list will look really familiar.
The TMJ (tempormandibular joint) is the joint that attaches your lower jaw to your head. Like the joints that connect your spine, the two sides work in tandem. Damage to one side, will cause dysfunction in the other. And the most debilitating symptoms may show up in the side with the least damage. The muscular attachments, nerve pathways and patterns of use are a complicated system that delivers a wide range of symptoms if things go awry. Most confusing is that the symptoms listed above may all be present in the same person at different times. This makes it very difficult to diagnose, and treat. There are as many treatment options available as there are symptoms, and the results vary just as widely.
The TMJ association has a new forum for patients that I found to be very interesting. This site is a wonderful place to share information and learn about TMJ dysfunction. The Forum is running a couple of polls on “what has helped you the least?” and “what has helped you the most?” At last count physical therapy was least helpful for 11.1% of those reporting, and most helpful for 33% of those reporting. Interesting. Unfortunately with many of the conditions I treat, nothing works for everyone. On the reverse, something works for everyone. People with chronic pain conditions have to be constantly on the watch for something that will work for them. I would also like to add that some things will work, even if they didn’t work the first time.
For someone in constant, everyday, debilitating agony, I am probably not the best front line of treatment. Having a team of good, supportive doctors on board is essential. Sometimes drug therapy is essential to help with the intense pain while we work on the mechanical imbalances that cause the problem. Having good, compassionate dental or orthodontal care is important. Be warned that some studies have shown bite therapy to be causative, not curative for TMJ. Other studies have shown that it is the best treatment. I have had many patients whose first symptoms came after orhtodontal or dental work to correct a bite, or repair teeth. I have had patients that swear their orthodontist cured them. Jaw surgery is another question mark for cure. I treat a lot of post-surgical patients. Many of them consider the implants to be a miracle cure. Many of them show up in my office 3-5 years later in the same (or worse) pain than they started with. At least the surgical interventions have improved over the years, 15 years ago some of the common practices bordered on barbaric. Be very cautious before undertaking a treatment plan that is very expensive, and irreversible.
As for physical therapy being least helpful (it pains me that we don’t help everybody – but I get it), it is also one of the least invasive. My practice focuses on improving musculoskeletal function, which means a lot of postural retraining, manual therapy and modalities to reduce muscular tensions, and a home program of stretching and strengthening to improve mechanics of the spine, jaw, and upper extremities. Even if it doesn’t help the TMJ, the program will prevent other postural problems in the future.
Please feel free to add a comment, tell us your story, or let us know what was most helpful for you!
Monday, September 29, 2008
Keepin' it on the down low
Down training: Using biofeedback as a tool to relax, rather than strengthen, the pelvic floor muscles
Anyway - I hope this clarifies things for some people, and please - ask questions! If I don't know the answer, I will try to research it, or throw out an opinion, or maybe add a different perspective to the subject.
Friday, September 19, 2008
She has a fabulous physical therapist and a fantastic doctor, and she uses them as constant resources. She also has a section on her blog dedicated to finding and posting information on good providers. So - if you have a doctor or PT or anyone else that has helped you immensely, let her know, she is compiling a list.
Wednesday, September 17, 2008
There are two kinds of light - the glow that illumines, and the glare that obscures.
I have spent the past several months researching everything I can find on “Low Level Laser Therapy” or “Cold Laser.”
The amount of information is vast, the quality is confusing, conflicting and difficult to sort through. I managed to talk a few reps into letting me play with demo models, and I sorted through enough information to justify purchasing a machine. So now my task is to try to make sense of all of the information available, and squeeze it into a nutshell that is easier to handle. I am NOT an expert, and my experience is limited. (That was my disclaimer). I hope this helps, but if you decide to seek light therapy for any condition, please discuss it thoroughly with your health professionals.
First – it is perfectly safe. The machines on the market available to clinicians will not burn you. We are all familiar with the concept of surgical lasers, and have seen
The treatment has been approved by the FDA for temporary relief of minor muscle aches, joint pain and stiffness, relaxation of muscle spasm and increasing local blood flow.
At this point, I know of no insurance companies that will pay for cold laser treatment. Part of this is secondary to the type and quality of research available. There are foreign studies that are better, mostly Russian, but they are not the studies that insurance companies look at. I reviewed the abstracts on many of the studies cited by some of the insurance companies, and I understand the justification for denial. Even those reviews admitted that “further study” is warranted. They are not ruling out the possibility of payment, they just want tightly controlled, well-designed studies. And here-in lies the problem. Most of the studies available in the
Does it work? We all know the benefits of sunlight. We know that light can be extremely powerful. We know that even tiny laser pointers can span great distances through air, glass, and some plastics. If you hold a flashlight to your hand in a dark room, you see the dense silhouette of bone surrounded by eerie red as the light penetrates your blood vessels. Better yet, put the flashlight in your mouth and puff up your cheeks – sorry, inner child moment. Light can penetrate, and these lasers are fairly powerful.
But how does it work? The theory is that laser therapy increases your metabolic process by exciting the mitochondria. Uh-oh, 8th grade biology flashback! Mitochondria is the powerhouse of your cells, they produce energy for your cells, and keep everything running. They love light. In fact, it is partially the mitochondrial response that makes sunlight so good for you. It also increases protein synthesis, promotes efficiency at the cell membrane to normalize pressure, and improve exchange of nutrients and wastes. All of this activity on the cellular level is supposed to decrease swelling, inflammation and pain, promote healing and generally make things work better.
But – does it really work? Well, I have only been using the machine for a couple of months, and, again, I am not an expert. The results have been strong enough for me to purchase one. I am still playing with protocols and parameters. Some of my patients have had truly phenomenal results. I am hoping that those that did not have such positive results will benefit from my increased proficiency. When a treatment effects the cellular metabolism, there is risk of temporarily increasing symptoms, especially in the chronic pain population. I tend to error on the very conservative side of caution. My patients that did not get better, also experienced no increase in symptoms. As I get more comfortable with the therapy, I will probably treat (slightly) more aggressively.
Thursday, July 17, 2008
Treating the whole enchilada
Here is an excerpt of her story:
So what can you do?
- Always – communication is key. Unfortunately for the women in this example, the PT wasn’t listening enough to take her pain seriously. Remember that YOU are the expert about your body, especially when your condition is outside the expertise of your caretakers.
- Having someone trained in pelvic floor work is optimal. Most of us that do this did not start out as pelvic pain specialists. We have widely diverse backgrounds, having done some other type of physical therapy in “a former life.” I did Sports and Orthopedics for years, and am still very comfortable treating orthopedic injuries.
- Many places throughout the country are developing “Women’s Health” programs. If there is a clinic with a program in your area, start there. Chances are you won’t be seeing the pelvic pain PT, but at least there is one handy for your therapist to talk to, and get feed-back from
- Bring literature about your condition. There is no guarantee that they will read it, and they certainly won’t have time right then, but any chance to educate even one more health care provider will help increase awareness.
Thursday, July 10, 2008
New Friends, New Resources
One, a new Vulvodynia Blog, is a great informative site from Poland, written to bring awareness of this devastating condition to the people and powers of Eastern Europe. Conversations with Mikolaj (the creator/moderator) have shown me that awareness over there is about where it was in this country 15 or 20 years ago. It is not diagnosed, rarely (and almost always inappropriately) treated, and the women are given no resources or validation of the physical nature of their illness. The link I put up is for the automatic english translation. It is a little awkward, and some words don't translate at all, but very informative. Please check it out, and if you are aware of good resources, particularly materials that offer instruction for self-treatment, please let them know.
Two - The Vagina Dialogues. OK - you gotta love the name, and Abigail Steidley has a lot of great information. I actually got the link for her site from the Polish blog, (thanks Mikolaj) I often discuss how chronic pain issues effect mental and emotional health, and I am a huge advocate of counseling. Chronic pain does not come with an instruction manual, and while you are busy navigating the turbulent waters of life, illness, and an impersonal medical system, some sort of mental support and help in dealing with all of it is really important. Abigail has taken her training as a life coach and directed it to a population that needs coaches. And cheerleaders! She works with people suffering from IC, vulvodynia, dyspareunia and other painful pelvis syndromes.
Please visit these sites, and let me know if they help!
Wednesday, June 18, 2008
Doors Close, Doors Open
Francie (my office manager, confidante, friend, and best reality check) has been very supportive - at least after the initial shock in which I was afraid I was losing my best friend along with my business.
My patients. Especially those that have dealt with the moving process while my office is torn down and scattered into boxes and the constant interruptions of people showing up in the middle of sessions to haul away equipment. Of course the factor of me wandering around looking for things that are vital for treatment has increased 1000%.
My family - I keep telling my husband and daughter that I will be a normal person in July - I really don't think they believe me.
Friends, Neighbors, & Colleagues. Pretty much everyone that has listened to the rambling, convoluted story after the innocent: "how's business?"
Anyway - on to OPEN doors. I have found a very small room for rent in a renovated bungalow close to my home. I share waiting room and restroom space with a massage therapist, a school psychologist, a mental health counselor and a MD/Acupuncturist. The business is changing; I am no longer billing insurance, but I will provide documentation for people to submit their own. It's just me! So. . . the phone ringer will be off, and I will return calls at the end of the day. (813) 237-0777. I am trying to go completely paperless (we'll see how that goes), and I will only be in the office part time (Mon/Wed/Fri mornings and Tue/Thu afternoons). I am keeping the same email and web site, so www.SlaintePT.com will live on in cyperspace. In fact, by next week, my husband should have all of the "new patient forms" available for down load on the site. (YAY - go Mike)
This scenario will give me more balance in my life, so I can really stay centered on things that need my focus: My patients & My family
Wish me luck!
Tuesday, April 22, 2008
Being in it, Staying fit
LOVED IT!!!! Without reservation. All of my concerns about "pilates" were addressed, with clear instruction and proper caution. The DVD warns you when there is an activity that may be inappropriate for someone experiencing a symptom flare, and lets you skip to the next activity. EVERY activity that my overprotective mind was about to question was accompanied by a "please skip ahead" comment. One bit of caution: if you are at all questioning your ability to engage in an exercise program, please skip these items. They don't seem that strenuous while they are happening, but they can be problematic, so please, heed the warning!
Plus, Jenny Buttaccio (the creator, developer, genius behind this project), is a phenomenal person. I was so excited about the concept, I asked if she would consent to telling her story for us. She is an IC patient, and understands what happens to a busy life that gets railroaded by this horrible illness. She is truly an inspiration, and here is her story:
Molly: I remember seeing somewhere that you are an IC patient?
Jenny: I AM an IC patient. My IC symptoms began almost immediately
following a laporoscopy to remove an ovarian cyst in December of
2005. At times, the pain had almost been intolerable and I had began
to feel as though I was loosing my mind. I was fortunate to be
located in a city where doctors are familiar with IC, so I was able
to get diagnosed in about 6 months rather than average which usually
takes a number of years. At that time, my treatments were aimed at
trying to get me through the crisis, control frequency, decrease
pain, etc. I had just gotten engaged one week before my surgery, so
my initial battle with IC could not have been more UNTIMELY! By the
time I had gotten any treatment at all, I had lost weight, I wasn't
sleeping at all during the night and my hair was falling out! That's
why I say my initial treatments were aimed at trying to get me
through the crisis, I had a wedding to be at, MY WEDDING, in
Minnesota in November 2006 and I was in no condition to go anywhere!
Although most of the crisis is over, I am still trying to find the
right "blend" of treatments that will help my symptoms to be under
Can you tell me a little about your personal journey with IC?
Jenny: Truthfully, IC is difficult. I suppose there could be other
potentially worse things in life, but IC is still difficult. I
believe IC poses a different level of difficulty. It's a discreet,
prolonged and confusing sort of experience. Quickly, you are forced
to become a different person. Suddenly and without your consent, you
are no longer capable of doing the things you usually do. Because
you don't know what is happening with your own body, it can be
difficult to communicate with those around you how you are truly
feeling. All you know is that you don't look sick, yet feel
incredibly bad. You feel as though your life is slipping away and
sometimes, you're not sure how much further down you can slip. In
the beginning, IC is a puzzling roller coaster ride.
I don't mean to paint the picture quite so grim, but things just
began to happen to my body and I had no control over it. I began to
have intense lower abdominal pain and pressure. Sometimes, the pain
was so severe that it was difficult for me to walk up and down three
flights of stairs to my apartment. I constantly had to urinate 20-30
times a day. There were days that I could literally sit on the
toilet (sorry for the visual) for 20 minutes just constantly going to
the bathroom. It was as if every drop of liquid in my body had to
make sure it found it's way out. I began struggling to work. My
social life took a dramatic turn. I could no longer spend time with
my friends. I loved to travel and had just been to
before I developed IC. Traveling was certainly out of the question.
Honestly, I didn't even want to leave my house. I just kept forcing
myself out of bed each day to go to work. I am an occupational
therapist and I am certain there were days that I felt worse than my
patients. Really, no one had a clue about what was going on with me
because...I looked so "normal."
Once I was actually diagnosed with IC, I began constantly researching
treatments from a variety of approaches. I would spend hours and
hours on the internet searching for what else I may be able to try.
Over the course of 2 years, I have tried many many different sorts of
things. I have only found some minor symptom relief in a handful of
things. Although my symptoms have improved somewhat since the initial
diagnosis, I am still working with my doctors to find something that
will really cause a breakthrough in my IC symptoms.
Was there ever a time that you felt you couldn't exercise, or
wouldn't be able to again?
Jenny: This may sound strange but, no. Not really. Exercise to me has
always been as routine as brushing my teeth. Call me crazy but I
actually love to do it and my body craves a certain level of
activity. At a very young age I began swimming, then running track
and eventually getting involved in gymnastics for 10 years. As an
occupational therapist, I am constantly looking at ways that I can
modify skills, tasks and daily activities to promote a person's
ability to be more independent. My skills as an OT suddenly became
very useful to me when faced with my own chronic health issues. I
knew my ability to participate in exercise had changed, but I
believed I could use my skills as an OT and my fitness background as
a certified pilates instructor to modify some of my favorite
exercises and make them more suitable for me. Keep in mind I was
also heavily motivated by the fact that I was getting married. I was
determined to still look my best on that day! I did ALOT of
research, tried many different pieces of equipment and a lot of crazy
exercises to develop a program that was comfortable and effective. I
liked the exercises I had put together so much that I just kept
working out by myself in my own home.
What was the inspiration for creating this video?
Jenny: I began reading a lot of the IC forums and listening to other people in my life that had various forms of pelvic pain disorders talk about
how they found it so difficult to exercise. Many of the forums
discussed the types of exercises that people with pelvic pain issues
shouldn't do, but there was a lack of resources available about what
people could do. I wanted REAL exercise, exercise that could
actually help tone my muscles, help someone else loose weight and
perhaps even make me sweat a little bit (just a little bit). One day
I had been expressing my frustration to my husband about the lack of
resources and he suggested to me, "Why don't you make a video? Put
your ideas out there for other people who are searching for safe
exercise options." I had the very fortunate advantage of having my
husband, Tom, be a filmmaker/video producer. After talking with some
friends, fellow pelvic pain sufferers and a few specialists, I
decided I would create New Dawn Pilates: a pilates-inspired workout
adapted for people with pelvic pain. I wanted to inspire people to
not give up on having an active life and educate people that with
careful instruction and special modification even pilates could be
permissible among pelvic pain sufferers. Hence, New Dawn Pilates was
Why "New Dawn?" What does it mean for you?
Jenny: I can't take 100% credit for New Dawn. That was actually my
husband's idea after throwing around multiple other titles. I had been driving to one of my patient's houses when I received his phone
call. "I've got it!" He said, "How about New Dawn Pilates."
Immediately, I loved it. See for me personally, my battle with IC
has been about rediscovering who I am now that my life is not going
the way I originally thought it would. There is such a large
emotional component that goes along with dealing with a pelvic pain
disorder. The challenge I think is this, to find some contentment
even in the most difficult of times. For me, the concept of New Dawn
represents the anticipation that a new day will arise in my life
where I am not always sleep deprived and in pain, perhaps joy will
come in the morning and the sun WILL shine again. It's really about
restoring hope to a community of people that often feel as though no
Monday, March 03, 2008
Sunday, February 17, 2008
V is for Victory!
Vulvodynia, Vulvar Vestibulitis, Vulvar Dysesthesia, Vaginitis, Vaginismus, Vestibulodynia. It reads like a list of alien invaders, and for women afflicted with these conditions, it feels like it. These are words that show up as a diagnosis or diagnostic criteria with nearly 15% of all gynecological visits in the
Let’s break down the laborious terminology here.
· Vulva- (or vulvo-): is a root word that means “external female genitalia,” which includes the inner and outer labia (lips) the clitoris, vaginal and urethral opening, and that little fold of skin-like connective tissue around the opening (the vestibule).
· Vestibul- : see above
· -dynia: pain (vuvlodynia – pain in vulva; vestibulodynia – pain in vestibule)
· -itis; inflammation – typically characterized by: redness; pain (often burning); maybe swelling; and tenderness to touch
· -mus: tightness or spasm
· Dysesthesia – (dys- impaired function; -esthesia: sensation) in this context, the sensory input from the vaginal area to the brain does not match the stimulus. Typically in painful conditions it means the nerve endings are hypersensitive, light touch should not cause searing pain, but for those with dysesthesia, it does.
Basically what we have here is a collection of symptoms that often serve as a diagnosis when no one can figure out WHY the symptoms have appeared. There are a lot of theories as to why this happens to so many women (some studies show as many as 50% of women will have these symptoms in their life-time), and there is constantly new research getting us closer and closer to the cause.
Here are some of the things we know (or suspect) that may predispose a women to having these problems:
· Genetics – a grant has recently been awarded to allow researchers to explore a link with certain genes that may cause an increase in the proliferation of nerve cells and irritant cells in the vulvar area, and genes that effect protein synthesis in these areas.
· Mast cell proliferation – these are the irritant cells mentioned above. Everybody has them, they are largely responsible for that histamine response you get from allergies, but for some reason they seem to be overly abundant in certain areas in certain people. They have proven that there is a hyperactive mast cell response in the bladder lining of interstitial cystitis (IC) sufferers.
· Chronic yeast infections – the constant irritation can cause the nerves to become hyper-sensitive, causing pain and irritation, even after the yeast is long gone. And please remember that thong underwear can carry yeast and other bacteria from anus to vagina very easily.
· Lichen planus, HPV, various bacterial and viral conditions.
· Contact dermatitis – This happens when a product irritates the area, and the nerves remain sensitized even after the irritant is gone. Soaps, perfumes, toilet paper, dyes in clothing can all be irritating. Here’s the kicker: many of the products we use to relieve vaginal itching or burning are hugely implicated in contact dermatitis. Anti-yeast creams are the biggest culprits, and so are anti-itch creams. Even prescription ones are considered to be causative factors. The safest way to handle a yeast infection is to get it cultured before taking ANYTHING, use the most appropriate treatment as recommended – but only once! If you are very sure it is yeast, and you use an over the counter medication, if it doesn’t work be sure your doctor knows what you tried, and the experts recommend that you not use a prescription cream if the over the counter doesn’t work, you are better off to use an oral medication.
· Pelvic Floor Dysfunction – O.K.; if you read this blog even occasionally, you knew I was getting to this. Pressure on the nerves from tight muscles can irritate the already hypersensitive nerves. Trigger points within the muscles can set up pain patterns that mimic vulvodynia pain when the muscle is stretched or tightened. Guarding (tightening up the muscle in anticipation of pain) can lead to vaginismus.
So what do you do? FIRST – go to a doctor! The most important thing is to rule out conditions that can be treated medically. If all the cultures come back negative, it is time to start working on the symptoms.
As a physical therapist, I help you try to eliminate pain. We use biofeedback and visualization techniques to teach you to relax that pelvic floor, and take the pressure off the nerves. We work manually (internally and externally) to eliminate trigger points and to improve the muscular balance around the pelvis. We use electrical modalities including therapeutic ultrasound, and electrical stimulation to help relieve pain. We educate you about avoiding irritants (diet, chemical, mechanical). Once the pain level is controlled, we teach you how to stay pain free, or manage flares as they arise.
A side note on my own personal treatment philosophy: The most effective way to deal with pelvic floor muscle tightness is to work internally on trigger points and muscle spasms. Many of my vulvar pain patients cannot handle vaginal work, and are so uncomfortable with rectal palpation that the costs out-weigh the benefits. With these women, I use as many indirect techniques as possible until we have achieved a comfort level with internal work. With manual therapy, you may experience some extra soreness the next day – but several days (or even two) of agony is too much, and not (in my mind) effective. It is imperative that you talk with your physical therapist during your treatment, don’t undergo weeks of “torture” because you think it might help. If you don’t tell your PT how painful it is, she will assume everything is just dandy. Chances are if she is aware of the problems you are having, she will be able to modify the treatments.
All of this is in cooperation with your medical team. There are medical interventions to help relax the muscles and control the nerve pain, and depending on the acuity of your condition, sometimes the medical interventions are what make it possible for me to do my job.