Thursday, February 27, 2014

EndoMarch Blog Week 7!!

It's only 2 weeks away!!
I'm excited and nervous. I'm excited to be going. Looking forward to meeting my endo sisters and being at the event. I'm nervous that illness might keep me from going, that it might cloud the day and make it where I cannot be fully present. That's the bad thing about a chronic illness/pain. You never know when it will be a good day or a bad day. You get to the point where you don't want to plan anything because prior events have been spoiled or thwarted by pain, heavy bleeding, nausea, bowel symptoms, or a myriad of symptoms.
I'd like to raise awareness close to home, but the going is tough! I've sent in a request to the local paper to do a story on endometriosis for March, provided them links to the latest information and about the EndoMarch (haven't heard back yet). I sent information about the EndoMarch to our Senators and my district's Congressman (heard back from the office of one of the Senators!- thanks Bob Corker!). I've been making awareness ribbons for my gyn's office personnel to wear during March and to have for other people to wear as well.
Hope to see you there!!!

Monday, February 17, 2014

Talking with your doctor link

Talking to your doctor can be intimidating. It's important to get the most out of your visits. Doctors are busy and have a vast array of patients to care for. Even with detailed notes in your chart, they may not remember your case history perfectly. Make it easy on them and you too. Here are some tips to help you prepare for your next doctor's visit from

"Before The Visit
Organize ahead of time Keep a list on the refrigerator, by your bedside, or in your purse. Jot notes about symptoms or questions as soon as they arise. A day or two before your visit organize your notes. Be as specific as possible. For "my arm hurts", you might describe the problems holding your arms up for hair drying, lifting children, or hanging laundry. Highlight the items that are particularly worrisome.
Identify goals for the visit What do you hope to accomplish with your doctor? A diagnosis? Referral to a specialist? Report new symptoms?
Prioritize your goals, listing your primary reason for this appointment first. How many problems should you talk about at a visit? Two to five, depending on the time allotted and the complexity of the problems.
Other notes to makeMake as many lists as you need to organize all the information and questions you need to communicate to your doctor:
  • Current medication list: including prescription, over-the-counter, herbal supplements, vitamins, topical medications, alternative medications and treatments; allergies and previous adverse reactions; prior medications and why they didn't work.
  • Problem list: a complete but concise summary of your medical history. Rank conditions in order of importance, with the most important first. Give dates, if possible. Example: Fibromyalgia - 1990, migraines - 1992, gall bladder removed - 1986.
  • Specialist list: summarize latest recommendations. Example: Gynecologist - August 2002 - hormone replacement started.
  • Recent tests: include dates and locations. Always ask for copies of your test results so you can have them for your own files.
  • Changes in symptoms since your last visit
  • Questions for today
  • Refills needed
  • Forms to be completed (with an SASE for return or sticky note with your telephone number)
Bring your lists! If you forget, ask the receptionist for paper and start writing while you wait. Keep copies of your problems and medication lists in your purse or car in case of emergency and update them regularly.

At The Doctors Office
Speak up: Being part of a team requires trust and clear, open communications. Be frank, even if it's embarrassing. Hand your doctor your lists, so he knows what you want to discuss today. Remember your goals for this visit. Voice your ideas. It is best to ask questions as soon as they arise.
Clarify: Use words such as "exactly" or "specifically". Ask: How will this help me? What will happen if I don't do this? When you say to increase activity, exactly what kind and how often? Does exercise mean weights or walking? What do you mean by "come back if not better"? When and how much better?
Negotiate: Request a cheaper drug or one with fewer side effects and less risk. Ask for an easier regimen or a less painful procedure. If a suggestion is unrealistic for you, say so - don't leave discouraged because you can't do it all. Doctors can simplify or adjust treatments so you can live with the recommendations. And remember: it's okay to think about your decision or change your mind. Never be pressured or scared into an action. Short of a life-threatening emergency, there is always time to think things through.

What can get in the way? Knowing the factors that impede effective communication is half the battle. Emotions, communication style, differing expectations, and lack of time all work against us. When emotions are high, logic is low. The shock of a new diagnosis, fear, embarrassment, resentment, intimidation, and forgetfulness (fibrofog) can all jumble our thoughts. With pain and fatigue, you might not be functioning at your highest level. If you find emotions interfering with your visit, honestly state how you feel. Naming the emotion takes some of the punch out of it. Ask for a moment to compose yourself, count to 10 and breathe slowly and deeply. Begin again if you are able or wait for another time. Consider also that a chronic illness frustrates doctors as well as patients. Although your doctor wants to help, he may feel there is little he can do for you.
Poor communication frequently results when we assume too much. Just as "straighten up your room" has both a parent and a teen interpretation, failure to clarify medical directions may result in differing expectations for you and your physician. For example, assuming your test results will be normal unless you are called could be a deadly mistake. Rather than assume, specify. Request a simpler explanation. If you learn best by seeing or reading rather than hearing information, ask your doctor to draw a diagram or give you a brochure. Ask him to slow down or confirm details. Repeat any instructions he gives you and write everything down or tape record it.

Streamlining your visit No doubt about it, time is a huge factor in poor communications for today's healthcare providers. In an ideal world, a doctor would have enough time to answer all questions clearly. Since this rarely happens, how can you use your time with your doctor wisely? Studies show that you have 23 seconds to speak before the doctor interrupts, so weed out the irrelevant details. For example, state, "I passed out last night. They took me to the emergency room." Stop right there! Don't add, "And it was really cold in the ER and the nurse looked at me like she'd never heard of fibromyalgia and…" Unless you have more symptoms to add, let your doctor ask you questions. Refer to the list of concerns you brought with you to make sure you have all of them covered.
If there is not enough time to cover everything, request handouts and brochures that will provide you with information. Then schedule another visit with more time to fully discuss your concerns.

Before you leave Ask the doctor for written instructions. Summarize and make sure to clarify anything you aren't familiar with. Don't leave without fully understanding your diagnosis and treatment. If the doctor has left the room, ask a nurse.

Outside The Office
I forgot to ask… Realistically speaking, questions come to mind outside of the office. If your problem is urgent, call the office right away. Otherwise, check first to see if your question can be answered in a brochure given to you by your doctor. Consult your pharmacist for medication questions. Are you tempted to ask your chat room support group for advice instead? The Internet is a great place for researching information to discuss with your doctor, but relying on online information for medical answers can be dangerous.
Communicating by telephone The office RN can handle most questions. Call early in the day, but be aware that your call may not be returned until the end of the day. It is helpful to compose a one sentence description of the problem, including symptoms and dates. Have medication bottles handy as well as your pharmacy phone number. Write down your questions and have a paper and pencil handy to record instructions. Inform the office if family members may receive information.
Communicating by e-mail The majority of families with computer access want to communicate with physicians via email. Physicians generally are less comfortable with that route. Both sides have concerns about confidentiality. Some benefits of email include: ending telephone tag, speed, cutting costs, more detailed medical records, fewer medical errors, and improved compliance. Risks include: privacy and security, as well as physician concerns of staff workload, reimbursement and malpractice liability. More importantly, access to care might be determined by computer literacy. At present, most doctors do not offer email communication, but it pays to ask.
Communicating by Fax Transmitting messages via Fax provides many of the same advantages as email. Access to a fax machine (or directly from your computer with PC-fax software, allows you to send detailed, accurate communications. Fax is an especially good method when you have multiple requests and is an excellent way to receive your lab results from the office. Bear in mind that confidentiality is an issue when using shared office equipment.
You have the right to remain silent - but don't! Communication is a two-way street and it starts with you. Speak up! You have the right to understand your diagnosis, your symptoms, tests, procedures and all the risks and options. Your doctor has the responsibility of treating you with respect, listening, addressing embarrassing questions, educating, informing and considering your opinions and concerns. You are responsible for coming to scheduled appointments, taking your medication as prescribed, reporting adverse effects, becoming knowledgeable about your disorders, informing your doctor about your symptoms, progress, questions and concerns. Communication is an especially important skill for fibromyalgia patients. Make every word count!

Pointers For Successful Communications
Pointer 1: Talking about pain Mention where, how much (use a scale of 1-10), what makes it better or worse, description (tingly, achy, knife-like), medications used and, most importantly, the impact on your daily functioning. Decide on your pain management goals. "I need better pain control" could mean completely pain-free (but possibly sleepy) or it could mean enough pain control to be able to play with your grandchildren, work 20 hours a week, or sleep comfortably. You and your doctor need to be working towards the same goals.
Pointer 2: Talking about tests Discuss the reason for the test (diagnosis? Change in treatment?), method, accuracy, preparation, pain involved, when to expect results and insurance coverage. Test results are written in medical-ese, language that can be misinterpreted by non-medical people and well-trained medically knowledgeable friends. Ask your doctor to explain the wording in simple terms. Do not settle for a glossing over such as "that's nothing to worry about."
Pointer 3: Talking about medication Know the medication's purpose, how to take it (with food, time of day, when to stop), adverse effects, interactions with other medications, when it should take effect, and cost. Make sure you can read the prescription: if you can't, the pharmacist might not be able to either. To minimize errors and complications, it's a good idea to have one doctor all of your prescriptions, even specialty medications.
Pointer 4: Talking about alternative/complementary therapies (ACTs) Present articles from reliable sources, discuss pros and cons, and determine compatibility with your medications. Understandably, doctors are hesitant to advocate ACTs without scientific testing. However, your doctor may agree to a trial if the treatment has not been shown to be harmful. Obtain a prescription or letter of medical necessity, if possible, because insurance companies sometimes covers alternative therapies.

...Depending on your level of pain, fatigue and brainfog on any given day, even very simple, explicit instructions can be mind-boggling and impossible to understand. There is a limit to how much time the doctor, nurses or other staff can spend with you go to over and over and over something. If you can't bring someone with you who can be your brain then bring a tape recorder and tape your session with the doctor and anyone else you ask for clarification on the instructions or information you were given.
If you are seeing different doctors, they all need to know about all of the prescription medications the other doctors have prescribed, as well as all of the over-the-counter, vitamins, minerals, herbs, alternative preparations, enzymes, aminos, pre- and probiotics you are taking. Many symptoms that may be ascribed to your illnesses may in fact be adverse interactions between the various drugs, supplements, herbs, etc. that you are ingesting every day.
Make and keep updated a master list of all the medications (prescription and OTC, topical and oral), vitamins, minerals, herbs, herbal teas, and other products you are ingesting. You will want this not only for your records but so that you can easily print it out and take it with you to each new doctor you are seeing. Give updated copies at least once a year to your regular physician, dentist and other healthcare providers.
Keep all your receipts for all of these medications and products, and copies of your notes on their use, especially when you've discussed them with your doctor. The receipts and notes will provide the back up when you claim them as medical deductions on your income tax as well as document the fact that you are "trying" to get better when you are hit with a social security or long-term disability review, an event that may happen once every three years or so until you reach retirement age."

Sunday, February 16, 2014

Pudendal Neuralgia & Vulvodynia

Pudendal Neuralgia:

What is it?

"Pudendal Neuralgia is a painful neuropathic condition that is caused by inflammation of the pudendal nerve."


"The main symptom of pudendal neuralgia (PN) and pudendal nerve entrapment (PNE) is pain in one or more of the areas innervated by the pudendal nerve or one of its branches. These areas include the rectum, anus, urethra, perineum, and genital area. In women this includes the clitoris, mons pubis, vulva, lower 1/3 of the vagina, and labia. In men this includes the penis and scrotum. But often pain is referred to nearby areas in the pelvis. The symptoms can start suddenly or develop slowly over time. Typically pain gets worse as the day progresses and is worse with sitting. The pain can be on one or both sides and in any of the areas innervated by the pudendal nerve, depending on which nerve fibers and which nerve branches are affected. The skin in these areas may be hypersensitive to touch or pressure (hyperesthesia or allodynia).
Possible symptoms include burning, numbness, increased sensitivity, electric shock or stabbing pain, knife-like or aching pain, feeling of a lump or foreign body in the vagina or rectum, twisting or pinching, abnormal temperature sensations, hot poker sensation, constipation, pain and straining with bowel movements, straining or burning when urinating, painful intercourse, and sexual dysfunction – persistent genital arousal disorder (genital arousal without desire) or the opposite problem - loss of sensation.
It is not uncommon for PN to be accompanied by musculoskeletal pain in other parts of the pelvis such as the sacroiliac joint, piriformis muscle, or coccyx. It is usually very difficult to distinguish between PN and pelvic floor dysfunction because they are frequently seen together. Some people refer to this condition as pelvic myoneuropathy which suggests both a neural and muscular component involving tense muscles in the pelvic floor.
Other Possible Symptoms
  • The chief symptom is pain in the area innervated by the pudendal nerves such that sitting becomes intolerable.
  • The pain may be lessened when sitting on a toilet seat or a doughnut pillow as this lessens the pressure on the pudendal nerve. Most people simply have to avoid sitting because it is impossible to find a cushion that relieves pain in all areas.
  • The pain is often not immediate but delayed and continuous and stays long after one has discontinued the activity that caused the pain (stop sitting, cycling, sex...).
  • Often the pain is lower in the morning upon awakening and increases throughout the day.
  • There may be extreme pain or tenderness along the course of the nerve when the nerve is pressed on via the vagina or rectum.
  • Pain in perineum.
  • Pain after orgasm.
  • Loss of sensation with difficulty achieving orgasm.
  • Strange feeling of uncomfortable arousal without sexual desire.
  • Intolerance to tight pants or elastic bands around the legs.
  • Friction and feeling of inflammation along the course of the nerve when walking for too long or running.
  • Constant pain even with standing or lying down.
  • Problem with urinary retention after urination. Need to push to empty bladder. Harder to detect the feeling of urine when passing through the urethra.
  • Urethral burning with or after urination
  • Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.
  • Urinary frequency.
  • Pain after bowel movement. Sometimes sufferers also report pain prior to and during the bowel movement.
  • Painful muscles spasms of the pelvic floor after bowel movement.
  • Constipation.
  • Sexual problems. Men complain of a diminution of sensations. Pain after ejaculation is common. For women pain during and after intercourse is often reported.
  • Scrotum/Testicular pain is possible. The testicle itself is innervated by another nerve however the difference in pain from scrotum/testicle can be hard to detect.
  • Buttock sciatica and everything that goes with it: numbness, coldness, sizzling sensation in legs, feet, or buttock. This is more often due to a reaction of the surrounding muscles to the pain in the pelvic region. It could also be from "cross talk" of the nerves.
  • Low back pain resulting from radiation of the pain.
  • The symptoms can be unilateral or bilateral. If the entrapment is only on one side, the pain can also be reflected to the other side.
  • Some people develop conditions such as complex regional pain syndrome and even post-traumatic stress disorder after prolonged or severe pain."
"The diagnosis is usually made based on the patient’s symptoms, history, and exclusion of other illnesses such as infection or tumor. While no test is 100% accurate some of the more commonly used tests are the pudendal nerve motor latency test (PNMLT), electromyography (EMG), diagnostic nerve blocks, 3T MRI using special software and settings, and magnetic resonance neurography (MRN). Pudendal neuropathy can occur in men or women although about 2/3 of patients are women. It is considered rare and many doctors are just now becoming aware of this illness. Sometimes it is referred to as cyclist’s syndrome, pudendal canal syndrome, or alcock’s syndrome. Pudendal neuropathy can have similar symptoms to another disease or be misdiagnosed as another disease. Those most often associated with or confused with PN are chronic non-bacterial prostatitis, levator ani syndrome, proctalgia fugax, interstitial cystitis, vulvodynia, vestibulitis, chronic pelvic pain syndrome, hemorrhoids, piriformis syndrome, coccydynia, ischial bursitis, idiopathic (of unknown cause) orchialgia, or idiopathic prostadynia.
"The final diagnosis of pudendal neuralgia is based on a person having several or all of these criteria:
  1. Typical PNE symptoms
  2. An abnormal electro physiological test
  3. A positive response to the nerve block
  4. A distinct abnormality on a 3T MRI or an MRN
  5. Pain elicited upon pressing along the course of the nerve
  6. Elimination of other diseases being the cause"
For more exact information (like what the physical exam should include, etc.) see:
"There are numerous possible causes for pudendal neuropathy. Some of the possible causes are an inflammatory or autoimmune illness, frequent infections, tension on the nerve, a nerve entrapment similar to carpel tunnel syndrome, or trauma to the nerve from an accident/fall, exercise, childbirth, prolonged sitting, or surgery. Sometimes there is no apparent explanation and some doctors have theorized that the problem can be hereditary due to a musculoskeletal predisposition. Occasionally the problem originates in the spine or sacral area rather then the peripheral pudendal nerve.
Pudendal neuralgia can be caused by inflammation of the nerve or by mechanical damage/trauma to the nerve. Sometimes the pain develops slowly and is almost imperceptible at first, sometimes preceded by paresthesia in the area innervated by the pudendal nerve. Paresthesia is a “pins and needles” sensation or a feeling of prickling, numbness, and tingling.
Many people however recall one event in particular as the beginning of their symptoms. Some recall the feeling of a lightning electrical shock after a bad move. Some people report their symptoms started after direct shock like a fall on the buttock or a car accident.  Others report pain after a sacral surgery such as a sacroiliac joint fusion resulting in a tilted pelvis or a pelvic surgery such as a sacrospinal fixation. Sometimes there is direct trauma to the nerve either from retractors or misplaced sutures. Pelvic surgery such as a hysterectomy may trigger pudendal neuralgia even though the nerve was not touched directly.  One theory is that the nerve can undergo a stretch injury if the body is in a certain position for a long period of time during surgery. Sometimes women develop pudendal nerve pain immediately following childbirth and while often this eventually subsides, for some women the pain does not go away. Women with severe endometriosis may develop scarring or inflammation if the endometriosis settles on the nerve. 
Prolonged sitting at work and frequent long drives are a common cause of compression to the nerve. Sports involving repetitive hip flexion like heavy weight lifting may cause enlarged or strained ligaments or enlarged muscles that impinge on the nerve. Some young athletes have been shown to have an elongated ischial spine, a bone that protrudes into the pelvis near the pudendal nerve. Cycling is a leading favorable risk factor for the development of the condition. In the sports medicine community it is sometimes called “cyclist syndrome”.
One hypothesis suggests that people who have PN were predisposed to have it and something occurred that triggered it. Other people who are predisposed may never develop the condition if they never engage in an activity or experience an incident that triggers it. For instance, someone who is predisposed to PN may take up weightlifting and consequently develop PN while another person who is predisposed but does not weight lift will not develop PN.
Tight muscles, tendons, or enlarged ligaments can lead to constant friction on the nerve or if the pelvis is out of alignment there may be undue pressure on the nerve. For some, the pudendal nerve can follow an irregular path or they may naturally have a tight space between the ligaments at the ischial spine or in the alcock’s canal. Some doctors have seen PN run in families, with several members in successive generations developing PN. Some people tend to form excessive scar tissue and this may lead to entrapment of the nerve. Certain autoimmune or inflammatory illnesses have been linked to pudendal neuralgia.
However, sometimes the cause remains unknown."


What Is It?
"Vulvodynia, simply put, is chronic vulvar pain without an identifiable cause. The location, constancy and severity of the pain vary among sufferers. Some women experience pain in only one area of the vulva, while others experience pain in multiple areas. The most commonly reported symptom is burning, but women’s descriptions of the pain vary. One woman reported her pain felt like “acid being poured on my skin,” while another described it as “constant knife-like pain.”
There are two main subtypes of vulvodynia, which sometimes co-exist:

Vulvar Vestibulitis Syndrome
(aka Provoked Vestibulodynia)

As shown in the diagram on the right, vulvar vestibulitis syndrome (VVS) is characterized by pain limited to the vestibule, the area surrounding the opening of the vagina. It occurs during or after pressure is applied to the vestibule, e.g., with sexual intercourse, tampon insertion, a gynecologic examination, prolonged sitting and/or wearing fitted pants.

VVS is further classified as Primary or Secondary. Women with Primary VVS have experienced vestibular pain since the first attempt at vaginal penetration. Women with Secondary VVS have experienced pain-free sexual intercourse prior to the development of pain.

Generalized Vulvodynia

For women with generalized vulvodynia (GV), pain occurs spontaneously and is relatively constant, but there can be some periods of symptom relief. Activities that apply pressure to the vulva, such as prolonged sitting or simply wearing pants, typically exacerbate symptoms.

Some women experience pain in a specific area, e.g., only in the left labia or near the clitoris, while others experience pain in multiple areas, e.g., in the labia, vestibule, and clitoris. In the latter group, pain may also occur in the perineum and inner thighs, as demonstrated in the diagram on the right.

Learn more by viewing NVA’s Online Teaching Program."
"Pain is the most notable symptom of vulvodynia, and can be characterized as a burning, stinging, irritation or sharp pain that occurs in the vulva, including the labia and entrance to the vagina. It may be constant, intermittent or happening only when the vulva is touched, but vulvodynia is usually defined as lasting for at least three months. The pain is usually found around the urethra and at the top of the legs and inner thighs, and it can be either intermittent or constant. Symptoms may occur in one place or the entire vulvar area.

The pain is usually described as a burning, stinging, itching, irritating or a raw feeling. Sexual intercourse, walking, sitting or exercising can make the pain worse. It can be present in the labia majora and/or labia minora. Sometimes it affects the clitoris, perineum, mons pubis and/or inner thighs. The pain may be constant or intermittent, and it is not necessarily initiated by touch or pressure to the vulva. The vulvar tissue may appear inflamed, but in most cases there are no visible findings. Vulvodynia usually starts suddenly and may last for months to years. Although it isn't life-threatening, the pain may make one cut back on some normal activities. It can also make one upset or depressed. It might even cause problems in one's relationship with spouse or partner, because it can make sexual intercourse painful."

"The best tool for making a diagnosis of vulvodynia is your ears — listen to what your patient is telling you! As part of the patient's medical history, make sure you note any association between the onset or exacerbation of symptoms and life changes/stressors, changes in medical status, surgeries, and hormonal changes, including childbirth, lactation, and menopause. Physical examination should include evaluation for infection, inflammatory process, and vulvar dystrophies.
Vulvodynia may present as generalized on the vulva or localized within the vestibule. Q-tip testing is very important in making the appropriate diagnosis of vulvodynia. Note if sensitivity is present on the vulva or within the vestibule at the Skene's and Bartholin glands. Use a 0- to 10-point rating scale, with 0 being no pain/symptoms and 10 being the worst level of pain/symptoms. If a diagnosis of vulvodynia is made, Q-tip testing is helpful as an objective measure of level of discomfort (and hopefully improvement) over time.
Vulvodynia is ultimately a diagnosis of exclusion after all other potential causes have been ruled out and symptoms have persisted for at least 6 months."
"The initial treatment for any woman presenting with vulvar symptoms is to institute vulvar skin-care guidelines. These are designed to remove any contact irritants to the vulva, such as scented soaps, detergents, hot water, shaving, and washcloths.

"Neuropathic pain medications are the mainstay of treatment for vulvodynia. These alter the perception of pain by blocking reuptake transmitters, norepinephrine, and serotonin.
My first-line therapy is normally the tricyclic antidepressants, including amitriptyline, nortriptyline, and desipramine. I use amitriptyline primarily, which has a 60% response rate. It is generic and readily available at minimal cost. Fatigue is the primary side effect at the low doses used for treatment. Most patients develop a tolerance for this over time.
My next line of treatment is the anticonvulsants. Gabapentin can be used individually or in combination with amitriptyline. More than 60% of patients have shown significant improvement when prescribed gabapentin. I have also used pregabalin, which has been associated with results similar to gabapentin.

"Infrequently, I use amitriptyline 2% with baclofen 2% as a topical treatment, but that preparation must be compounded and has greater costs. If the patient has concurrent depression, I will also use a selective serotonin–norepinephrine reuptake inhibitor, such as duloxetine. I avoid most topical medications because they serve as a contact irritant over time and offer little symptom resolution. I have commonly seen women being prescribed topical lidocaine. This can become a contact irritant with routine use, but it can provide emergency relief to break the pain cycle. 

"Many women with vulvodynia have increased resting tone, poor strength, and/or irritability of muscles. In those patients, biofeedback therapy can be very helpful. Biofeedback has a success rate of 60% to 80%. Physical therapy with a therapist trained in the pelvic-floor musculature can be very helpful, either alone or in conjunction with biofeedback. It is important not to start physical therapy or biofeedback until the vestibular Q-tip testing has improved (i.e., the gland scores have decreased). Starting these therapies too soon will likely inhibit results and give woman a sense of failure.         

"Since stress plays a role in vulvodynia, any stress-reduction technique, such as meditation and yoga, can be used. Some have found acupuncture helpful. Psychotherapy can be useful because this is a chronic-pain state and women often suffer with depression or relationship problems. It is especially important to let patients know that you understand their problem is a real and debilitating condition, not just "in their heads."

"The last option for women suffering from localized vulvodynia is vestibulectomy. This should be considered only after all other options have failed. "

One extra note:
"It is thought that there can be overlap between vulvodynia and IC. Studies suggest that the prevalence of concurrent IC and vulvodynia ranges from 12% to 68%. Both IC and vulvodynia are syndromes of the urogenital sinus, including pelvic-floor muscle dysfunction, inflammatory changes with activation of mast cells, increased angiogenesis, and neural hyperplasia."

Thursday, February 13, 2014

Endomarch Goals

The upcoming EndoMarch (March 13, 2014) has several specified goals. I'd like to focus on one of the goals.

As I am in the healthcare field and interested in research (see below for a full list of the EndoMarch's goals), I'd like to look at:  Medical and Nursing School Educational Institutes

"Even after numerous visits to their pediatricians, primary care physicians, gynecologists, school nurses, and emergency room practitioners, millions of women and girls with endometriosis, and chronic pelvic pain are still going undiagnosed for several years or are receiving grossly inadequate care. This is truly unconscionable and constitutes a national health crisis. Therefore, we would like to collaborate with our nation’s medical and nursing schools to launch endometriosis educational initiatives so that future physicians, nurses, nurse practitioners, and physician assistants can more readily recognize the symptoms of endometriosis and provide the appropriate care. We will also be reaching out to medical researchers to help us find cures and develop noninvasive tests for disorders that have been devastating millions of lives for thousands of years."

There is an enormous amount of material to cover in the medical profession and each disease can only be covered so thoroughly in the scholastic setting. I would like to make sure that endometriosis is one of the things covered, and, in the limited amount that it can be covered in medical schools, I would like to make sure that the information is the most current and up to date. Namely, I would like my health care professionals to know:
  • The full spectrum of symptoms of endometriosis. Many women have symptoms beyond "period pain" and their physicians should be aware of them and know to include asking about: bowel and bladder symptoms (if the patient has been diagnosed with "IBS" which could actually be a symptom of endometriosis), low back, sciatic or leg pain, pain with exam or sex, comorbidities such as migraines or allergies (especially if they worsen with menses), the inflammatory response of endo, infertility, etc
  • The latest theories of endometriosis pathophysiology. Sampson's theory of retrograde menstruation is not standing the test of time and many of factors such as genetic, immune, stem cells are coming to light. Studies on angiogenesis, specific cytokines, nerve development, prostaglandins are shedding new light on how endometriosis affects the body.
  • The gold standard of treatment and to not delay it. The gold standard of treatment is surgical excision of endometriosis by an expert (Endometriosis takes on many appearances, has been shown to be present in "normal" looking tissue, has many hiding places, and can involve delicate areas such as the ureters and bowel, all of which are best handled by someone well adept in the removal.) Many doctors will treat symptoms (often without the surgical diagnosis even) with hormonal therapies. These might alleviate symptoms for a while, but have not been shown to stop the progression of endometriosis (development of adhesions, continuing pain, etc). Over time, women might need stronger hormonal therapies to suppress symptoms; these stronger hormonal therapies carry increased risk for adverse side effects, some irreversible. As a woman's pain continues, it sets up a pattern for chronic pain which can be more difficult to treat the longer the nerves are exposed to the noxious stimuli of endometriosis.
  • The array of further problems produced by endometriosis and other conditions associated with it. After many years of pain, the pelvic muscles will often respond to the painful stimuli by becoming tightened and spasmodic (pelvic floor dysfunction). Interstitial cystitis is often associated with endometriosis.
I would like to see more continuing educational opportunities for health care professionals that contain correct and up to date information regarding endometriosis. It would be helpful if more health professionals aware of the impact of endometriosis.

I would like to see more physician's aware of and utilize adjunct therapies to help patients with comorbid conditions, such as pelvic floor disorder. Pelvic physical therapy would be one prime example. Encouraging a diet specifically to help endometriosis, exercise (such as yoga), and stress reduction management. The demand will in turn help to increase the supply.

It will not be possible for the above to be obtained without solid research. It is imperative to have larger based studies (and funding to support them). It would also be advantageous to have a definitive data pool for endometriosis- a pool that included only those truly diagnosed with endometriosis by surgical biopsy in order for the data to not be skewed. With hope, by bringing awareness to endometriosis and the impact it has on the lives it touches, it will in turn increase the demand for more and better research.

"Goals: Overview
• To unite women and their supporters to take a stand against endometriosis   
• To raise awareness about endometriosis and its effects on women and girls
• To educate and train members of the medical community, in order to promote early detection and improved treatment  
Effect Change
• To find a cure for endometriosis, and to develop non-invasive diagnostic tests
• To improve health screenings for endometriosis among girls and young women in public schools
• To work with our government and congress to allocate funding for endometriosis

Goals: Zoomed In

In addition to the broad goal of simply raising awareness, we will be seeking change in the following four (4) sectors:
1) Government-funded Health Organizations
We believe that it’s crucial to work with four U.S. governmental institutes in particular – The National Institutes of Health (NIH), Centers for Disease Control (CDC), the Department of Health and Human Services, and the office of the Surgeon General – to help bring attention and resources to the cause of endometriosis.  Regarding the NIH, for example, we believe it’s imperative that the separate group which is dedicated exclusively to Endometriosis, and Chronic Pelvic Pain in Women be made much more visible to the public. Diabetes and other conditions have their own NIH-funded national television and print awareness campaigns; we believe the millions of women and girls suffering from endometriosis deserve the same.
2) Department of Education, Education in Public Schools
We will be reaching out to the Department of Education to help us launch nationwide educational campaigns and health screening in public schools so that school nurses, counselors, and administrators can recognize and screen for endometriosis and other chronic pelvic pain conditions that afflict girls. Public schools already screen for a variety of health conditions, such as scoliosis and hearing and vision impairments; we believe pre-teen and teenage girls with endometriosis and related conditions, who are especially susceptible to misdiagnosis, deserve the same.
3) Medical and Nursing School Educational Institutes
Even after numerous visits to their pediatricians, primary care physicians, gynecologists, school nurses, and emergency room practitioners, millions of women and girls with endometriosis, and chronic pelvic pain are still going undiagnosed for several years or are receiving grossly inadequate care. This is truly unconscionable and constitutes a national health crisis. Therefore, we would like to collaborate with our nation’s medical and nursing schools to launch endometriosis educational initiatives so that future physicians, nurses, nurse practitioners, and physician assistants can more readily recognize the symptoms of endometriosis and provide the appropriate care. We will also be reaching out to medical researchers to help us find cures and develop noninvasive tests for disorders that have been devastating millions of lives for thousands of years.
4) Public Education
And, finally, we are organizing this worldwide awareness campaign in an effort to bring the plight of those with endometriosis to the attention of the media and general public. Media coverage about endometriosis, for example, is almost negligible. There have been many hour-long specials about obesity and diabetes featured on major television networks, or on the cover of national news magazines. However, we are still waiting for the same consideration to be given to the millions of people who have had their lives so profoundly impacted by one of the most painful and crippling disorders ever catalogued in the history of humankind. We will also be reaching out to private foundations to consider supporting researchers so that a cure can be found and noninvasive screening tests can be developed."

Sunday, February 9, 2014

Boosting Your Health with exercise and music!

Another good reason to listen to your favorite tunes while exercising- exercising lowers inflammation and listening to music can lower your cortisol and boost your immunity! :)

"•People who listened to music had an increase in their levels of Immunoglobulin A (IgA), a type of antibody that is present at mucosal surfaces (digestive tract, lungs, etc.) and helps to prevent infections.
•Music listeners had higher numbers of an immune cell type called "natural killer cells," whose job it is to attack bacteria, infected cells, and cancerous cells.
•Listening to music reduced levels of cortisol in the body. Cortisol is a stress hormone that has many physiological effects, one of which has a role in promoting obesity." 

"The results: Regardless of BMI or weight, study participants who completed 2.5 hours of moderate exercise each week—about 20 minutes a day—lowered their markers of inflammation by at least 12%, Hamer says. Furthermore, those who began exercising midway through the study also significantly lowered their levels of inflammation, meaning it’s never too late to benefit from exercise, he says. So how does exercise cut inflammation? Your blood contains a type of protein molecule called “cytokine.” When you exercise, your adipose and muscle tissue release big bursts of cytokines into your blood stream, which Hamer says is likely the cause of the inflammation drop. To reduce inflammation, try to get at least 30 minutes of moderate exercise a day, five days a week, Hamer advises. Almost any type of workout that raises your heart rate counts, he says, such as brisk walking, playing tennis, mowing the lawn, or even gardening."

Saturday, February 8, 2014

Noxious Noci's

What am I talking about? Nociceptors, which are the nerves that send pain signals from a distal site to the brain, and the stuff that sets them off (noxious stimuli). First, let's look at what nociceptive pain is:

"Nociceptive pain is caused when special nerve endings—called nociceptors—are irritated. Nociceptive pain is the type of pain you feel when you burn yourself, twist your ankle, or stub your toe. It is a dull or sharp aching pain, and it can be mild to severe. This type of pain can usually be controlled. Nociceptive pain can be a temporary condition, such as when you have a sprained ankle, but it can also be a chronic condition. Cancer pain and arthritis pain are common types of chronic nociceptive pain. Nociceptive pain usually responds well to pain medications, anti-inflammatory agents, or other drug therapies. It usually does not respond well to neurostimulation."
"Tissue damage or injury initiates signals that are transferred through peripheral nerves to the brain via the spinal cord. Pain signals are modulated throughout the pathways. This is how we become aware that something is hurting."
"Acute or nociceptive pain is part of a rapid warning relay instructing the motor neurons of the central nervous system to minimize detected physical harm. It is mediated by nocicepters, on A-δ and C fibers. These nociceptors are free nerve endings that terminate just below the skin, in tendons, joints, and in body organs. They serve to detect cutaneous pain, somatic pain and visceral pain. Nociception can be associated with nerve damage caused by trauma, diseases such as diabetes, shingles, irritable bowel syndrome, late-stage cancer or the toxic effects of chemotherapy. It typically responds well to treatment with opioids and NSAIDs. One of the challenges for researchers and clinicians alike is that chronic pain may involve a mix of both inflammatory and neuropathic components. In inflammatory nocicpetive pain, inflammation may cause damage to the neurons and produce neuropathic pain. Likewise, neuronal injury may cause an inflammatory reaction (neurogenic inflammation) that contributes to inflammatory pain."
[For your own FYI, when you're trying to distinguish the type of pain:
"Neuropathic pain is caused by a malfunction of the nervous system due to an injury or an illness. Neuropathic pain can be a sharp, intense, shocking, or shooting pain. It is also very stubborn in that it does not usually respond as well as nociceptive pain to standard pain therapies, such as over-the-counter pain medications (for example, aspirin or ibuprofen) and prescription pain medications. Unlike nociceptive pain, neuropathic pain can often be managed by neurostimulation." ]

"Noxious stimuli and responses
There are three categories of noxious stimuli:
  • mechanical (pressure, swelling, abscess, incision, tumour growth);
  • thermal (burn, scald);
  • chemical (excitatory neurotransmitter, toxic substance, ischaemia, infection).
The cause of stimulation may be internal, such as pressure exerted by a tumour or external, for example, a burn. This noxious stimulation causes a release of chemical mediators from the damaged cells including:
  • prostaglandin;
  • bradykinin;
  • serotonin;
  • substance P;
  • potassium;
  • histamine.
These chemical mediators activate and/or sensitise the nociceptors to the noxious stimuli."

"Endometriotic implants cause a local inflammatory reaction which irritates nerve endings and sends noxious stimuli along the nerve pathways to the spinal cord and into the central nervous system (CNS) where they are interpreted as burning, dull, achy sensations or as sharp, stabbing, or crampy pains. The local inflammatory reaction is mediated by the increased production of substances, such as a variety of cytokines and prostaglandins, originating from the endometriotic implants and cells of the immune system. These substances also stimulate development of scarring and nodules around the endometriotic implants which may compress peripheral nerves compounding pain symptoms with signs of peripheral neuropathy. Pain symptoms are usually elicited when the nodules are compressed during pelvic examination or sexual intercourse. Endometriotic (chocolate) cysts may compress on other pelvic organs, causing pain and pressure during urination or bowel movements. If there is bleeding from the endometriotic lesions, as it frequently happens during the menstrual period, a woman may notice blood in the urine or stools or in secretions from other organs affected by endometriosis, e.g. blood in the sputum with endometriosis of the lungs. Because of increased systemic cytokine and prostaglandin production by the circulating immune cells, some women with endometriosis may experience generalized symptoms such as low-grade fever; crampy, generalized aches and pains; and nausea, vomiting, and diarrhea usually around the time of the menstrual period."

The main event of this feature:

Primary Afferent Nociceptors and Visceral Pain
Victor Chaban
Charles R. Drew University of Medicine and Science and University of California, Los Angeles, USA

“Several lines of evidence indicated that there is a close relationship between nerve fiber density and endometriosis-associated pain. There is a significant increase in nerve fiber density in women with endometriosis who reported pelvic pain, suggesting these nerve fibers may play an important role in the mechanisms of pain generation.
One such mechanism may be the convergence of nociceptive stimuli and estrogen input on the primary afferent neurons which innervate viscera. Based on our results, it is likely that estrogen receptors (ERs) expressed in primary afferent neurons modulate nociceptive signaling. Our recent data suggest that estrogen acting on primary afferent nociceptors modulates the response to proand anti-nociceptive signals associated with the clinical presentation of functional disorders such as endometriosis.
The mechanism of endometriosis-induced nociceptive signaling is poorly understood and in some cases pain can be exacerbated by co-morbidity with other chronic pelvic pain syndromes such as irritable bowel syndrome, painful bladder syndrome, vulvodynia and fibromyalgia. It has also been shown that ectopic implants develop sensory nerve supply both in women and in animal models of endometriosis. Sensory input arriving from the visceral organ to the spinal cord divergences at the level of primary sensory neurons which further transmit considerable information from periphery to the central nervous system.
Several researchers have investigated the presence of nerve fibers in endometriotic lesions in both human and animal study. Using different types of specific immunohistochemical neuronal markers such as substance P (SP) and calcitonin gene related peptide (CGRP) sensory nerve fibers markers) in human peritoneal endometriotic lesions from women with visually and biopsy proven endometriosis, investigators have demonstrated multiple, small unmyelinated nerve fibers are present in peritoneal endometriotic lesions, and these peritoneal endometriotic lesions contain both Aδ and C nerve fibers. Accumulating evidence has shown these nerve fibers may play a critical role in pain production in patients with endometriosis, and a close histological relationship has been identified between these nerve fibers and endometriosis associated pain. Tulandi et al. (2001) reported that the distance between endometriotic glands and nerve fibers in endometriotic lesions from women with pain was closer than in women with no pain.
Endometriosis is an inflammatory disease, which is known to contain proinflammatory cytokines, prostaglandins, and other neuroactive agents that could readily activate the CGRP- and SP-positive C-fiber nociceptive afferents found in the endometriotic lesions. When these sensory nerve fibers are stimulated by inflammatory substances, neurotransmitters such as SP, CGRP can be secreted from sensory nerve endings. SP and CGRP can contribute to the inflammatory response by causing vasodilation, plasma extravasation and cellular infiltration by interacting with endothelial cells, arterioles, mast cells, neutrophils and immune cells. SP can also act on mast cells in the vicinity of sensory nerve endings to evoke de-granulation and the release of TNF-􀇂, histamine, prostaglandin D2 (PGD2) and leukotriene, providing a positive feedback. CGRP has a wide range of biological activities, including sensory transmission, regulation of glandular secretion, and inhibiting SP degradation by a specific endopeptidase to enhance SP release, thereby amplifying the effects.
Based on our preliminary results, it is likely that estrogen receptors (ERs) expressed in primary afferent neurons modulate chemical signaling associated with nociception. Nociception is a balance of pro- and anti-nociceptive inputs that is subject to regulation depending on the normal state of the organism. Sensitization of primary afferent neurons to stimulation may play a role in the enhanced perception of visceral sensation and pain. Chest pain from coronary heart disease, endometriosis, acute and recurrent/chronic pelvic pain in women or abdominal are all visceral pain sensations that may result in part from sensitization (Berkley et al. 2001; Mayer et al. 2001). Mechanisms of peripheral sensitization may involve increased transduction that is secondary to repeated stimulation or an increase in the excitability of the afferent nerves by molecules that decrease the excitation threshold (Zimmermann 2001).
These findings suggest that E2 may modulate sensory input at the primary afferent level. E2 can alter gene transcription, resulting in pro-nociceptive (reducing 􀇃-endorphin expression) or anti-nociceptive (increasing enkephalin expression) changes of endogenous opioid peptides , opioid receptors (Micevych and Sinchak 2001) and, by increasing levels of CCK, an anti-nociceptive and anti-opioid molecule (Micevych et al. 2002).
Our data support the idea that E2 modulates nociceptive responses in pelvic pain syndromes such as endometriosis, however, whether E2 is pro- or anti-nociceptive remains unresolved….Our data clearly showed the new role of nociceptors in pathophysiological aspects of chronic pelvic pain and potential way of designing future therapies.”

"Neurotrophins (NTs), a family of neuronal growth factors, are overexpressed in endometriosis and encompass NGF, BDNF and NT-3 and NT-4/5. NT receptors, TrkA and p75NTR, and NT receptor-interacting proteins, MAGE and NDN, were also expressed. NTs and their receptors play a role in the development and maintenance of neural tissues in non-neuronal cell types such as endometriosis. Nerve fibers contain unmyelinated sensory C, myelinated sensory Adelta and adrenergic nerve fibers that innervate abnormal cell growths. An increased release of proinflammatory cytokines from endometriotic lesions is responsible for the excessive sensory innervation and development of chronic pelvic pain. The preponderance of the inflammatory milieu and subsequent hyperinnervation might be involved in the pathophysiology of pain generation in women with endometriosis."

"Calcium-binding proteins seem to be increased in endometriosis-associated nerve fibres and might play an important role in the chronic inflammatory condition and the pain pathogenesis of endometriosis.";jsessionid=A4A598F96BBAA715C3121D4E3C8056D0.f02t02?deniedAccessCustomisedMessage=&userIsAuthenticated=false

"While increased levels of leptin have been reported in patients with endometriosis, their contribution to endometriosis pain has not been explored. Using a rodent model of endometriosis we provide evidence for an estrogen-dependent contribution of leptin in endometriosis-induced pain....This sensitivity to leptin is dependent on estrogen levels."

"The exact aetiology of endometriosis is still not clear although a role for inflammation is increasingly accepted. We therefore investigated the inflammatory activity of eutopic tissue and that of the matching ectopic lesions from different locations by measuring the genetic expression of inflammatory chemokines and cytokines. The gene expression in matching eutopic and ectopic tissue was compared, as was the gene expression in lesions from different locations. A significantly higher mRNA expression of the chemokines ENA-78 and RANTES and the cytokines IL-6 and TNFα was observed in endometriotic lesions of the rectovaginal septum (RVS) compared to that of matching eutopic tissue. Comparisons across lesion locations showed a significantly higher expression of IL-6 and TNFα in the RVS compared to lesions from either the ovaries or the peritoneum. These results show that the production of some inflammatory chemokines and cytokines is significantly increased in the ectopic endometrial tissue compared to matching eutopic tissue. Furthermore, IL-6 and TNFα are produced in significantly higher quantities in RVS lesions compared to other lesions."


We have talked before about the research into the connection between migraines and endo (  ,   , Below is an article about the latest investigations into the cause of migraine pain and symptoms. Notice any similarities about  the neurons and neuro chemicals?

"Based on research, the best understanding we now have is that migraine arises from abnormally excitable neurons in the brain and trigeminal nerve. What causes the neurons to be abnormally excitable? Various things can do this, including low magnesium, abnormal calcium channels on the surface of the neuron, mitochondrial abnormalities, or other inherited brain chemical abnormalities. The newest things in the migraine story are the glia—the support cells in the brain—which also appear to have a role in transmitting pain, perhaps more so in chronic headache, although their story is still being determined....While there is still some controversy over the "vascular" part of migraine, the situation was recently summed up by Dr. Andrew Charles, UCLA migraine researcher. Dr. Charles indicated that while it is clear that vascular changes occur in migraine, it does not mean migraine is triggered by vascular processes, and that the dilation of blood vessels is neither necessary nor sufficient for causing migraine pain.

"According to existing trigeminovascular theory, once the messages come from the activated cells in the trigeminal nucleus in the brainstem, and travel to the trigeminal nerves that go to the dural blood vessels on the brain's surface, it causes dilation. However, the trigeminal activation also causes the release of brain chemicals called neuropeptides (substance P, CGRP or calcitonin gene-related peptide, neurokinin A, 5HT or serotonin, and noradrenalin).

"The release of these chemicals causes inflammation, and what is called peripheral sensitization. This is most likely what results in the throbbing pain most people experience. As the attack progresses, something can occur called central sensitization. When this occurs, it causes what is known as cutaneous allodynia. This means that things that are usually just a normal touch are now felt as painful. Many headache patients with allodynia cannot continue to wear earrings, necklaces or neckties, or their glasses. Some find that they cannot lie down on the side of the head pain, or report that "even their hair hurts." Up to 80% of migraine sufferers are affected by some degree of cutaneous allodynia, and it generally occurs in the late stages of a migraine attack when the pain is severe. This is why it is important to treat early when the pain is mild or moderate.

"When central sensitization becomes advanced, it can involve areas beyond the head, and simple touch on the arms or shoulder can be perceived as painful. For example, I am aware of one migraine sufferer who is bothered by the seams in her clothing during such an attack. At this stage of the migraine, migraine-specific medication is less likely to be helpful, and studies have shown that while they will reduce the pain and relieve the throbbing, they cannot abort the attack, and allodynic pain remains as well as other migraine symptoms. In late-stage migraine, other medications may be necessary in order to end the attack." 

Wednesday, February 5, 2014

Specific cytokines involved in endo

"The researchers found a distinctive profile of cytokine activity associated with certain symptoms, specifically ovarian and rectovaginal lesions. This pattern, which included 13 cytokines, was also negatively correlated with patient fertility. Many of the inflammatory compounds that make up the newly discovered signature have previously been implicated in endometriosis. One of the key regulators of this signature that the researchers identified is c-Jun, a protein that drives inflammation. This molecule has been linked to endometriosis before, and a drug that inhibits c-Jun is now in clinical trials to treat the disease. The researchers also found that many of the molecules that make up their signature are secreted by macrophages, a type of immune cell that acts as a sentinel — patrolling tissues, digesting foreign material, and presenting it to other immune cells.
The team is now investigating the triggers for this immune response, which are likely not the same in every patient. They plan to analyze tissue from subsets of endometriosis patients, including those who experience infertility and those with deeply infiltrating lesions affecting the colon and other pelvic organs....Such studies could help lead to new drug targets, as well as a better understanding of a highly complex disease, the researchers say."

"The research, published in the journal Science Translational Medicine, is influenced by Griffith’s own experience as a breast cancer survivor. When she was diagnosed with breast cancer in 2010, Griffith’s experience with that disease was very different than with her lifelong struggle with endometriosis. Doctors quickly did molecular tests to discern the underlying molecular drivers of her cancer and to help select the treatment most likely to work. She wanted to find a way to bring that personalized medicine approach to endometriosis, which is usually treated with a combination of hormones and surgery.
“We’re trying to start a conversation with the community where we can say, like cancer, the surgical appearance is part of what you use to understand the patient situation. But there are molecular markers that are very informative about mechanism,” Griffith said.
In the study, Griffith and colleagues studied samples taken from 77 women with suspected endometriosis. The samples, removed during surgery, were analyzed for immune system molecules involved in inflammation. The researchers were searching for patterns that would give them new ways to subdivide the women, who had variable levels of infertility and pain and may even have different causes driving their disease. Instead of looking for just one immune system protein that was elevated, they looked for networks of molecules that seemed to be elevated in concert; that approach is key because the disease is complex and not likely to be due to a single errant protein.
"In about a third of the women with confirmed endometriosis, they found a network of 13 immune system proteins that were elevated. They cross-referenced those to try and figure out what kind of immune cell might be releasing them, which led them back to a particular type of cell called a macrophage. Using that information, they selected a specific experimental drug that they thought would inhibit the process and administered it to the patient cells in a dish. They found that they could reduce the inflammatory factors secreted by that cell.
"The work is early and Griffith said her hope would be that a pharmaceutical company might pick up on the research and move toward developing a targeted drug that could be tested in a subset of patients likely to respond. They also hope to look in a larger patient population, to see if they can find similar hallmarks that could point to new ways to diagnose and treat the disease."