Pelvic Pain around the Globe

In Uncategorizedby Stephanie Prendergast13 Comments

cool_globeAs I prepare to attend the First World Congress on Abdominal and Pelvic Pain this week, I am reminded that pelvic pain is a global issue that affects men and women the world over.

Truth be told, however, this reality is always on my mind. Weekly, we hear from men and women in other countries seeking advice for their pelvic pain. Just last week, we received an email from a male blog reader who lives in Eastern Europe and is struggling to find treatment for his pelvic pain. When I think of the challenges men in the United States face in their quest for diagnosis and treatment, I could not help but feel for this man.

All of this makes me excited to attend a global conference on pelvic pain!

Before I take off for Amsterdam, however, I wanted to repost a blog I wrote last year after a trip that drove home the need for a global abdominal and pelvic pain initiative.

I made the trip with an organization called GSEPS. “GSEPS” stands for the “Globel Society for Endometriosis, Pelvic Pain, and Surgeons,” and is the brainchild of Dr. Maurice Chung, a urogyn from Ohio. The mission of GSEPS is to bring skilled medical professionals from the U.S. to China in order to educate and train the Chinese medical community to identify and treat pelvic pain.  (Click here for more info about GSEPS.)

Dateline China: Spreading the Word about Pelvic Pain PT

China has a burgeoning population of 1.4 billion people. Estimates are that 1 million women and 500,000 men suffer with pelvic pain. So, if you’re one of those women or men with pelvic pain in China, how will you be treated? The answer: most likely, you won’t.

Similar to gynecologists in the U.S., circa 20 years ago (and many still to this day), gynecologists in China don’t recognize musculoskeletal dysfunction or even endometriosis as a source of pelvic pain. On top of that, there are no PT options for men and women in China with pelvic pain. None! Zero! I found this extremely troubling. It was so strange for me to be in a place where what I do and talk about and think about every day doesn’t exist, especially considering the desperate need for it.

However, thanks to GSEPS things are beginning to turn around in China. To date, the organization has taught a handful of doctors to administer pudendal nerve blocks, trigger point injections, as well as certain pharmaceutical treatments. But the fact remains that if you’re a man or woman with pelvic pain in China, the most likely scenario is that you won’t be treated for your pain.

On the trip, I was invited to give a series of lectures to audiences of physicians, in both Beijing and Xi’an (pronounced Shee-an). As the first PT invited to assist GSEPS on its mission I was tremendously honored. While most of you are familiar with Beijing, China’s capital city, most are probably not familiar with the city of Xi’an. With a population of 8 million, it’s one of the most populated areas in inland China.

Somehow, somewhere, between Beijing and Xi’an, it was decided that I would evaluate a patient in Xi’an, and that this evaluation would be presented as a live feed to the attendees in the lecture hall. My reaction: What?!

To say that I was unprepared for this evaluation is an understatement. But thinking back on it now, all the preparation in the world would not have prepared me for what was to come. The patient, a woman in her 50s, was a field worker, who had suffered a fall on her tailbone some years prior. She presented with extreme tailbone pain, anal pain, and vulvar pain.

After meeting the patient, myself and about two dozen of my colleagues were led into a hospital operating room where we were instructed to don scrubs. As I stood in an O.R. wearing scrubs, it hit me that the Chinese had a pretty skewed understanding of what it was that I did. Plus, I was disturbed that a patient was to have her pelvic floor evaluated and treated in front of an audience! But, surprisingly, it seemed that the patient wasn’t fazed by it. I didn’t sense any modesty or hesitation from her at all. This is when the differences between our culture and the Chinese culture really began to sink in.

To make matters even stranger, the patient’s arms were tied down and her legs were tied to stirrups. When she asked to use the restroom, she was told “no” because it would hold up the proceedings. That’s when all semblance of diplomacy left me, and I insisted that the patient not only be untied, but allowed to use the restroom!

When she returned, I began to examine her. Right off the bat, I noticed that she presented with a severe case of  lichen schlerosis, a skin disorder that affects the genitals causing blistering, redness and burning. In addition, her vulva and vagina appeared completely de-estrogenized meaning that low estrogen levels had resulted in redness, cracking, and dryness to the vulvar/vaginal area. The condition also can cause burning and pain. Either one of these conditions could cause a myofascial pelvic pain syndrome or be a source of pelvic pain in and of themselves. Together, they guarantee it. So before I had even gotten to examine the patient’s pelvic floor muscles, I had discovered two seriously under treated and pain-provoking issues.

It’s when I began the internal exam that I discovered a major cultural difference in doctor/patient relations in China. I was communicating with the patient with the help of Dr. Chung, who was acting as a translator. That’s when I learned that in China, voicing or showing that you are in pain in front of a doctor is considered a sign of disrespect. So even though I could tell which areas within her pelvic floor were painful to the touch, the patient would not let me know where her pain was or when it increased upon my palpation. I was incredibly disturbed by this because as anyone who has either had or administered pelvic pain PT knows, good communication between PT and patient is a must!

Despite the communication barrier, I uncovered trigger points in the patient’s obturator internus muscle, a good bit of pudendal nerve tenderness, and generalized pelvic floor tightness.

As you know if you’ve read our post about “good PT” external work is as important as internal work; however, I did not do any external work on this patient as it’s painful and is only beneficial when it’s done repeatedly over the long term. What I was able to do in the short time I had was to stretch out the patient’s pelvic floor muscles.

My treatment plan for this patient would include immediate treatment for her dermatological and hormonal issues. That alone would provide her with tremendous relief! From there I believe with weekly PT, she would likely have a good result. While the PT is of course not an option, sadly, I don’t believe the patient’s other issues will be treated either.

Here’s why: Chronic pain in general is under treated in China. And I realize how disingenuous it is to be up in arms about this because this is also very much the case in the U.S. Plus; our own medical system is rife with its own problems. But, unlike in the U.S., in China, especially in the least developed areas, the medical community is very much focused on survival versus the treatment of non-life threatening illnesses or pain.

I realize that up to this point, my report seems pretty dire. But, here’s the good news. GSEPS is a young organization, and already it has made some pretty major inroads on its mission in China. The goal of this trip was to increase awareness of pelvic pain diagnosis and treatment and to form relationships with the Chinese hospitals and medical schools. On all accounts: mission accomplished!

For my part, I gave three lectures in each of the cities we visited. My topics were “Physical Therapy Management of Myofascial Pelvic Pain,” “Physical Therapy Management of Pudendal Neuralgia,” and Interdisiciplinary Management of Chronic Pelvic Pain.” In Beijing, we presented this information to the OB/GYN department of the Peking Medical University Hospital and their entire medical school. In X’ian, we presented a joint conference with the Society for Laprascopic Surgery and the American Association for Gynecology and Laprascopic Surgery.

As you can imagine, included in my slide show was a no-holds barred look at pelvic pain physical therapy. The audience’s response was pretty priceless. From the gawking, it was clear that although they understood the concept of PT for pelvic pain, they were seeing a treatment method that they hadn’t even imagined existed.

I have to stress that there were many American doctors in the audience who shared this reaction. In fact, two general surgeons I spoke with from highly prestigious medical institutions in the U.S. readily admitted that they were completely unaware of pelvic pain.

What was so encouraging was that both the Chinese doctors and the American doctors were completely open to the information. In fact, I have been invited to speak at the Society for Laprascopic Surgeons’s conference in the U.S in 2013. I’m hoping the result will be fewer scheduled surgeries and more scheduled PT sessions!

In China, both the government and the physicians there seem committed to getting pelvic pain educational programs started. And one of the things I’ve learned about China is that the Chinese work fast. When they collectively decide to get something done, they get it done! One of the reasons for this is there’s much less red tape and bureaucracy there compared with the U.S.

The next phase of GSEPS’ mission is to get the PTs in China into the pelvic pain loop. To that end, Liz and I have invited the Chinese to attend our courses in the United States and GSEPS is expecting to sponsor hands-on seminars for PTs in China by 2014. From there it’s highly likely that the Chinese will begin taking steps to implement pelvic pain PT in PT schools there. Conversely, in the U.S., pelvic pain PT is NOT taught in PT school. And as far as I know, to date, there isn’t a major push in the works to change this.

Thank you for allowing me to share this amazing experience with you; now, I want to hear from you!

If you are not a U.S. citizen, what are the challenges you face finding appropriate diagnosis and treatment in your country? If you are a U.S. citizen, have you been able to find appropriate diagnosis and treatment for your pelvic pain?

All my best,

Stephanie

Comments

  1. Hi, Stephanie, I commented on your original post about your trip to China. I would say it is nice that you can see the different worlds by steping out. Your teams’ work benefits the U.S. citizens also to the people in other worlds.

    I live in Shanghai Zone,I have been advocating pelvic health education for about two years. As you know, in China, the medical system is differnt from that of the US., especially regard to PT and nurses. The need of pelvic rehabiation is really growing, now, many many hospitals (even in rural counties) are launching the program for pelvic rehab even if the skills and capabilities of nurses/PT are not enough.

    Capability and skill level of Doctors are very unbalanced in China. Hopitals in mega cities like Beijing and shanghai can have world-calss gynecologists while in the Tier3 cities, a lot of gynecologists are still behind of new technology and theory. They are those who are really in need of professional training.
    Hardware investiment is no problem here, we can be very fast to have those apparatus ready, however, the hospitals need to invest on software ( to build strong PT teams). It’s great that there is associations like GSEPS are building bridge in between China and the developed world.

    As to PT, few school established this subject, students are confused about their future (In china, to be a nurse is not a good career, to be a PT may be just so so as a career.) The have limited view about the application of physical therapy. But I think it will soon be changed because there is huge consumer needs here.

    While at current stage, unfortunately to some individualls, before the soft skill of nurses being upgraded, many of them are treated with incorrect mode. This is the issue I found. The rehabation center in hospitals can earn much money, consumers are trying and they have no choice other than the hospitals ( Doctors, nurses, PTs all are not allowed to practice personally). This is really at early start of the industry, there is try and wrong. Hope this will be shifted soon.

    I am managing some online communities for women to talk about pelvic floor problems, I know the difficulties of those people. Some college students found me and talked about PT with me, I always encourage them to better learn English and to explore knowledge and open the view and mind from online resources. For myself, besides reading few China textbooks, most of the learnings are from reading literatures in English, following PTs and medical persons in the U.S. UK and Australia, much learning is also from patients support groups which are really valuable (Thousands of consumers report back the effectiveness of their treatments everyday in the support groups, those information are great).

    Hope you have a good trip to Holland and welcome to China again.

    JOY

    1. Dear Joy, Stephanie and Liz,

      I am an American living abroad with Pudendal Neuralgia and we may need to move to Shanghai. (We are currently in HK)

      1) Are there any clinics/hospitals in Shanghai that are able to treat pelvic pain? If so, can you please share any contact information that you may have. Do they have a pelvic floor physical therapist?
      2) Do you recommend any pain specialist physicians in Shanghai?

      Thanks in advance your your help.

  2. Wow, you’ve been busy! I love reading about how you are spreading the word about the treatment of pelvic pain around the world. Thanks for sharing, and keep up the great work!

  3. Stephanie,

    That is an amazing adventure, thank you so much for sharing!

    I am a physio in Australia, and with China being so close, it’s unbelievable to hear not just the number of women and men most likely affected by pelvic pain, but the lack of help. And the story about your assessment for that woman in the ER, tied up. Oh my goodness!

    How fortunate for a small number of professionals, and soon the public, to hear what pelvic health physios can offer help with in China. Thank you for all your work.

    Cheers
    Lori Forner

  4. Wonderful blog Stephanie. Very daunting and confronting – especially with the language barriers and cultural differences. Keep up the fantastic work. #pelvicmafia

  5. Hi, Stephanie

    I don’t think the woman’s response represents Chinese consumers, with only one-time experience you can not judge that is the cultural difference between China and the US. The woman was recruited for your diagnosis, that was special case I think.

    1. Author

      That is such a great point Joy that, yes, definitely needs to made! Thank you so much for weighing in!

      All my best to you,
      Steph

  6. Hello, i am so happy to have found this website. I live in central America, El Salvador, i’ve suffered from pelvic pain since the birth by c-section of my daughter on May 2009, it was an emergency vertical c-section due to preeclampsia, hellp syndrome and placentae abruptio, i had internal hemorrhage and i was told the pain was normal after such a traumatic event, so i just tried to overcome the situation, then i got pregnant again and gave birth to my son on November 2010, thank god everything went okay and even though it was a scheduled c-section there were no complications. But then the pelvic pain increased and now i have hip pain, if i’ve had a busy day when i lay down the pain is almost unbearable, lower back pain is constantly there and sex is always painful, when my bladder is full hurts so much that i almost cry sometimes, i’m desperate, all i know is pain and i’m sick of it. Pain is part of my life now and no doctor here seems to know what to do. I just hope someday someone will raise awareness about pelvic pain here in my country. Because pelvic pain is real and it doesn’t just go away. God bless you for all the amazing things you’re doing, i wish you all the best. And if you can give me any advice anything, that may help me a little i will be forever thankful.

    1. Author

      Dear Claudia,

      I’m so sorry to hear about all that you are going through!

      Is there any way at all that you could travel to a good pelvic floor PT in the states? We see many many patients from out of the country. It is so wrong that folks like yourself have to travel to get the proper care, but while we have made advances, there’s just not enough medical providers who get pelvic pain or post-pregnancy pain. If you do consider traveling, let us know and we can help you figure out the closest “good” pelvic floor PT to you.

      All my best,
      Stephanie

  7. Thank you so much for taking the time to answer so soon. Unfortunally traveling to the states for treatment is not an option for me at this moment nor anytime soon. But believe when I say that as soon as i’m able to, I will do it, I will never give up. Thank you very much.

    1. Author

      Dear Claudia,

      You are so welcome. And yes, please never give up hope. When it is time for you to travel to the U.S., please get in touch. I am the current president of the International Pelvic Pain Society and have been an active member for 10 years so I am very familiar with all the top pelvic pain medical providers in the states and internationally, and would be happy to help you choose the best provider to maximize your visit to the U.S.

      All my very best,
      Stephanie

      1. Dear Stephanie,
        I am 31 year old woman from Bosnia and herzegovina. I hAve diagnosis of severe IC ( diagnosed in Wienna by prof.dr. Klaus Riedl). I have problems with bladder from 2007. After delivery my baby in july 2015, my problems with bladder just stopped- no crequency urgency and pain, only occasionally and lasts for few days. 6 months ago ( five months after delivery) I started to feel terrible pain in pelvis-around vagina, rectum, sitting bones. Can not define where the pain is, is it in bones, muscles or nerves or through vagina. Can not put tampon can not have sex. Pain is severe 8 to 10 every day and constant 24 hours a day! I startey to take tramadol since nothing else is not working. Pain is so severe that I can not function- it ruins my body. I sent several emails to doctor and clinics theough europe, got only few answers. I contActed dr. Keneth Peters fron royal oak Mitchigan- he thinks I have pelvis spasm. I would appreciate your help informing me is there any clinic in Europe dealing with thid condition? I need pelvis exemination and physitherapy or some threatments. I have dound clinic in netherland – f-act pelvic pain clinic and mrs. Maria ellitot in london. I have problems getting visa for Uk. If you can recommend Ny other clinic deom Europe I would be gratefull.

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