A New Publication re: Abdominal Wall Endometriosis

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Some of you may have read my previous blog about Cesarean scars and Endometriosis (if you haven’t, you can read it here).  In the studies referenced in that blog entry, all of the women complained of bumps or lumps or pain in their c-section scars.  Turns out they had developed Endometriosis in their scar tissue; likely the cells were transferred during the surgical procedure.

But…correspondence published just a few days ago references a woman who was found to have Endometriosis growing within the fascia of her abdominal wall nearly 1.25 inches above her scar line.  She was 41-years-old and had complaints of the bump for the past 3 years.  It didn’t bug her; she had no symptoms.  It wasn’t discolored…it was just a mass.  A bump.  A lump…that just sat there.  She had previously undergone two c-sections (one seven years ago and one 10 years ago).  An ultrasound classified the lump as a cyst, nearly 32 x 23mm (1″ x 1.25″) in size and doppler scanning showed it had a blood flow.  So, a biopsy was taken, which revealed it was an Endometriosis mass.  It was excised and hadn’t come back within six months.  But it was, in fact, confirmed as Endometriosis.

The authors hope that this leads healthcare workers to consider the possibility that masses outside of abdominal scarring may be Endometriosis.  They’re not just limited to appearing within surgical scars.  The mass needs to be biopsied and handled accordingly.  If you’d like to read the study, it’s linked below.

Got a bump in or around your c-section scar?  Talk to your doctor!  Haven’t had a c-section, but still have a lump or bump?  You should still go talk to your doctor.

Resources:

Clinical & Experimental Dermatology – (Article; Jan. 2017) Development of Abdominal Wall Endometriosis in a Region Distant from a Cesarean Scar

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Endometriosis in the psoas major muscle

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An article was published on October 30, 2016 in the International Journal of Clinical and Experimental Medicine, which caught my interest.  We know that Endometriosis can grow in a lot of places other than the reproductive organs and pelvis.  This study found Endometriosis growing within a muscle: the psoas major muscle.

The pso-what-is muscle? Well, that’s what I said.

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It’s a pair of muscles that run from the lumbar spine, along the back of the abdomen, and end inside the hip area. It helps flex our hips, aids our walking and running, and can improve posture.  In some places, it’s as thick as a wrist!  As a side-note, weak psoas muscles can cause back pain, hip pain, limited movement in the hips, tight/deep pelvic pain, belly aches, constipation, and a twisted pelvis.  Dr. Axe offers some tips, tricks, and stretches to help strengthen your psoas muscles.

Okay, now back to the study!

A 49-year-old Chinese woman was admitted to the hospital because she had increased CA-125 levels.  If you’ve followed my previous blogs, you’ll remember this could be an indication of the presence of Endometriosis. Seven years prior, she had a hysterectomy and oopherectomy (removal of her right ovary) – she had a uterine myoma and ovarian Endometriosis.

After screening and testing, the doctors found a mass in the left side of her psoas muscle and thought she had a tumor.  She didn’t have any of the usual signs and symptoms of Endometriosis.  She was discharged from the hospital (at her insistance).

Three months later she returned for an MRI.  The mass had grown by 3cm and was also involved with her iliac vessels.  Her CA-125 levels were still increased.  And her physicians needed answers.  An exploratory laparotomy was performed and the mass was visualized in her psoas major muscle.  It was 10x10x8 cm and was inside the muscle tissue.  They continue to fear it was a tumor.

Rather than remove the mass in its entirety, a portion was removed and biopsied: confirmed as Endometriosis.  She received more than 3 months of Lupron Depot and the remaining mass decreased in size and her CA-125 levels stabilized.  The authors surmise the lesion may have transplanted during prior surgeries and hope this case report sheds further light on the illness.

Yet another example of extra-pelvic Endometriosis, as well as post-hysterectomy Endometriosis.  Here’s to hoping this case study continues to push the medical and scientific community into further research and greater funding toward better understanding Endometriosis – and one day finding that much-needed cure.

Resources:

Dr. Axe

International Journal of Clinical and Experimental Medicine – Article (Oct. 2016) Endometriosis in the Psoas Major Muscle: A Case Report

Yoga International

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 🙂 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Endometriosis & Salt/Sodium

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I enjoy salt.  Love it, actually.  And one night my Jim asked if I thought salt altered my Endometriosis at all.  We’ve all heard too much salt is a bad thing for blood pressure, watch your sodium-intake, blah blah blah…but I didn’t care – I love my salt.  Well, his question stuck with me over the months and it’s finally time to look into it.

I’d always thought salt and sodium were the same thing…nope.  Table salt is a blend of ingredients, including sodium.  Sodium is a natural mineral.   Sodium helps our bodies balance electrolytes and fluids and is mainly stored in our kidneys. We pee out any excess sodium our body doesn’t use.

How does high sodium effect us?  If your kidneys can’t process the sodium well or fast enough, it gets to your blood.  Sodium retains water, which makes your blood vessels swell, which means your heart has to beat more to pump it around, which leads to high blood pressure…which can lead to a whole slew of problems.

Endometriosis and inflammation are bosom buddies. Recent studies are finding that high salt intake may very well effect the immune system and promote inflammation, as well.  It can also cause a lot of discomfort and pressure around your joints, due to the swollen veins.  People with Rheumatoid Arthritis may feel these effects even more, as some medications may cause the body to retain more sodium.

But, as usual, science goes back and forth.  There are studies that say it increases inflammation, and studies that say it has no effect on inflammation.

How much sodium is too much sodium?  The FDA recommends no more than 2,300mg of sodium per day for adults under 50 years old…or 1,500mg of sodium per day for adults over 50, or people suffering with high blood pressure, diabetes, or kidney disease.  One teaspoon of table salt contains slightly over 2,300mg of sodium.  One teaspoon of sea salt contains about the same amount.  So, one teaspoon of salt is the daily allotment for most people.  One.  Teaspoon.  Some people salt their food while cooking, others salt for seasoning once it’s hit the plate, and others (um…me) do both.  Whoops.

Salt is often used as a preservative, which means most processed foods may contain a lot of sodium.  Mmmmmmm bacon.  Sodium is also found naturally in food and may be higher in seafood, dairy, vegetables, and meat.  Read the labels.  Do your homework.  Make a grumpy face.  For a chart on examples of different sodium levels (in mgs) in different foods, click here.

An example (let’s pretend this is my food & drink for one day…which it isn’t):

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THIS is what I ate yesterday…

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PaleoLeap wrote an interesting piece dissecting studies of sodium intake and they opine that high salt intake doesn’t lead to inflammation – but the intake of junk foods (which are often sodium-laden) do.  The Paleo Diet also anaylzes a lot of recent studies of sodium intake and inflammation and suggest that it does increase inflammation.

Back and forth.  Back…and…forth.

I’m gonna read my labels and try to make an effort to at least keep my sodium intake within the daily recommendations.  I’ve done it with sugar (well, a whole hell of a lot better than I used to…). I tracked my sugar intake for a week and got a good sense of what had how much – it will be fun with sodium, too!

 

But, what are you going to do?

 

Resources:

American Heart AssociationNew Sodium Targets Could Help Put Food Choices Back in Your Hands

American Heart AssociationSea Salt vs. Table Salt

Arthritis FoundationHow to Eat Less Salt

European Journal of Clinical Nutrition – (Abstract; 2012) Dietary Salt Intake is Related to Inflammation and Albuminuria in Primary Hypertensive Patients

JagWireScientists Explore Whether a Little Less Sodium in the Diet Translates to Less Inflammation, Oxidative Stress in the Body

Journal of Nephrology – (Abstract; 2010) Impact of Adopting Low Sodium Diet on Biomarkers of Inflammation and Coagulation: A Randomized Controlled Trial

LivestrongSalt, Sodium, & Inflammation

Paleo LeapIs Salt Really Inflammatory?

The American Journal of Clinical Nutrition – (Abstract; 2009) Is Higher Sodium Intake Associated with Elevated Systematic Inflammation?  A Populatrion-Based Study.

The Paleo DietNew Studies on Salt: Adverse Influence Upon Immunity, Inflammatoin, and Autoimmunity

US Food & Drug AdministrationLowering Salt in Your Diet

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 🙂 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Reader’s Choice : Endometrial Polyps

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One of our local EndoSisters has recently been diagnosed with endometrial polyps, something I know absolutely nothing about.  So what happens when I know nothing? I research!

What is a polyp?

uterine_polypsA polyp is an abnormal overgrowth of tissue, usually a lump, bump, or stalky growth (hence the mushrooms above).  They’re most commonly found in the colon, but can be found in the uterus (known as uterine or endometrial polyps), cervix, stomach, throat, nose, and ear canal.  There can be just one polyp…or there can be lots.

Most polyps are benign (non-cancerous), but there may be a risk that these abnormal cells may develop into cancerous ones.  And they can range in size from a sesame seed all the way up to the size of an orange.

Symptoms

Today we’ll be focusing solely on endometrial polyps.  If you’d like to read the symptoms of other polyps, please click here.  Endometrial polyps only grow along the inside of the uterus, up against the lining.

Before I go into what the symptoms are…I need you to understand that many women do not have any symptoms or complaints – and endometrial polyps may be discovered during routine ultrasounds.

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mmm…Cracker Jacks

Symptoms of endometrial polyps may include infertility, irregular menstrual bleeding, heavy menstrual bleeding, severe menstrual cramping, bleeding between periods, bleeding after sex, and even vaginal bleeding after menopause.  Some women even complain of brown discharge for several days after their periods.  This sloughing may occur because polyps may rub the inside of the uterus, causing irritation and exposing blood vessels, which may bleed.  Infertility may be caused by polyps blocking the fallopian tubes or even inflamed uterine lining being unable to accept an egg, interfering with the egg and sperm doing their happy dance.  Endometrial polyps have been known to interfere with IVF treatments and they should be removed prior to starting IVF treatment.

While we’re talking about vagina, I just want to note that cervical polyps can also cause unusual discharge, bleeding during sex, or even heavier bleeding during periods.

If you suffer from any of these symptoms and don’t know why (or know why, but may suspect something more), have a talk with your doctor.  I know a lot of these symptoms mirror symptoms of Endometriosis…Self-advocacy is soooo important.

Causes

Nobody is really certain why polyps develop, although studies are ongoing.

Some factors which may cause your body to create endometrial polyps include inflammation, the presence of a cyst or tumor, excess estrogen (they’re sensitive to estrogen), or even the presence of a foreign object.  One theory is that polyps are more likely to form due to the changes brought on by the menstrual cycle and the surge and decline of hormones during that process.

Some people are also more susceptible to growing their very own polyp.  Women who have had children, or women who are over 40 are more likely to develop endometrial polyps.  Also, there have been connections found between endometrial polyps and hypertension (high blood pressure), obesity, are taking post-menopausal hormone replacement therapy, who have a family history of Lynch Syndrome or Cowden Syndrome, and women who have taken Tamoxifen.

Tamoxifen is a drug which blocks the body’s receptors so estrogen can’t work it’s magic.   Women with breast cancer (or at a high risk of developing breast cancer) most often take Tamoxifen; however, it has also been used to treat infertility, bipolar disorder, Riedel’s thyroiditis, retroperitoneal fibrosis, and McCune-Albright syndrome.  As a curious side note, studies have shown that Tamoxifen may be linked with stimulating Endometriosis growth since it also thickens the endometrial lining.  *runs away*

Diagnosis

As usual, it starts with a verbal medical and symptom history and physical examination.  Your doctor may order imaging studies (hysterosalpingogram [a special x-ray using dyes], ultrasound, or CT scans) to visualize any polyps and get a sense of their size and location.  However, a regular ultrasound (aka sonogram) and transvaginal ultrasound may not show the polyps and a special “water ultrasound,” called sonohysterogram (or SHG for short), may be required.  A saline solution is injected through the cervix into the uterus to expand it a bit and allow for clearer visuals.  This allows them a better look around the inside of the uterus.  Doctors may also use a hysterscope to peer around the inside of the uterus.  This is a small illuminated tube that goes up the vagina and into the uterus. Sounds like fun…

hysteroscopy

Although these methods may lead your doctor to assume you have polyps, the only way to confirm the diagnosis is by performing a biopsy.

Cancer

Some figures say that 3-5% of polyps can be cancerous or pre-cancerous.  So, a doctor will most-likely want to perform a biopsy on any polyp they find, just to confirm it isn’t cancerous.  Cancerous polyps are very rare, but chances increase slightly as we age (over 50 and they increase even more).  If cancerous endometrial polyps are discovered, your doctor may recommend a hysterectomy.

And, beware – if you have a history of non-cancerous (benign) endometrial polyps, you may have an increased chance of developing uterine cancer.  A 2012 study stated that 25% of patients with endometrial cancer had a prior history of some sort of benign endometriail biopsy.  So, go in for check-ups. Often.

Treatment

Well, I hate to say this…but what I’ve been reading online for treating endometrial polyps is much of the same of what many of you have known for treating Endometriosis…

Wait and see what happens.  Most small polyps that don’t cause any symptoms may just resolve on their own.

To treat symptomatic cervical or endometrial polyps, your doctor may prescribe progestin or even GnRH agonists in an attempt to reduce or eliminate the polyp…say it with me, “Lupron Depot.”  It’s like we can’t get away from this drug.  AND once the treatment is stopped, the symptoms may return.

If a woman has a history of miscarriages and is trying to conceive, or she has a family history of cancer, or the the symptoms don’t resolve, her doctor may opt to remove the polyp.  The removal of a polyp is a procedure that rolls off the tongue : a polypectomy.

The polyp can be removed with a D&C (dilation & curettage), where the inner lining of the uterus is scraped clean.  However, there have been instances where this doesn’t remove a polyp; it just wiggles it around a bit.

Remember that little illuminated tube (hysterscope)?  It can be inserted through the vagina and cervix into the uterus, along with itty-bitty tools like scissors or a laser, and the polyp can be cut away.  Some surgeons may use a tool known as a resectoscope, which is a tiny tube that (you guessed it) goes up into the uterus.  The resectoscope has a tiny wire lasso on the end which allows the surgeon to wrangle and hog-tie the polyp (well, not really), remove it, and send it off to biopsy.  Yeehaw!

For those who wish to seek a more natural route of treatment, there are a lot of articles online.  If you go this route, please consult with your physician before starting anything!  Herbs and supplements that some claim to help relieve symptoms, and reduce or even cure polyps, include: apple cider vinegar, angelica, butcher’s broom, castor oil, cayenne pepper, cinnamon, clove, fenugreek, flax, garlic, ginger, goldenseal, green tea, red raspberry leaf, marshmallow (the herb, not the sugary white smooshy deliciousness), mustard seed, tea tree oil, xanthium, and yellow cedar.  Increasing your fiber intake will also help your body flush excess estrogen from the body.

Recurrence

Once a polyp is successfully treated and/or removed, there’s always a chance it will reappear.  Statistics show that 15-43% of endometrial polyps reoccur.

Prevention

Want a fighting chance against developing polyps?  Unfortunately, endometrial polyps cannot be prevented.  If they’re coming, they’re coming.  Just take heart knowing they’re really, really common…And do go in for your regular check-ups, including an annual ultrasound, to keep an eye on your insides.

Think you have Endometrial Polyps?

I, again, cannot stress enough to you how you must have a conversation with your physician.  It all starts with a talk.

Resources:

American Journal of Obstetrics & Gynecology – (Abstract; Aug. 2000) Exacerbation of Endometriosis as a Result of Premenopausal Tamoxifen Exposure

Ayurvedic Cure – 9 Top Herbal Remedies for Polyps

Breastcancer.org

Current Opinion in Obstetrics and Gynecology – (Abstract; June 2016) Hysterescopic Polypectomy for Women Undergoing IVF Treatment: When is it Necessary?

Healthline – What are the Symptoms, Types, and Treatments for Polyps?

Ilana Sowter Acupunture Melbourne

International Journal of Clinical and Experimental Pathology – (Article; July 2016) Increased Expression of Nestin and VEGF in Endometrial Polyps: an Immunohistochemical Study

Livestrong Holistic Treatments for Cervical Polyps

Mayo Clinic

Medline Plus

News Medical – Other Uses of Tamoxifen

OBgyn.net

Search Home Remedy – 6 Best Home Remedies for Polyps

Texas Fertility Center

The Angeles Clinic

The Center for Menstrual Disorders & Reproductive Choice

The Journal of Obstetrics and Gynecology of India – (Abstract; Aug. 2016) Endometrial Polyps and Subfertility

US National Library of Medicine – (Abstract; April 1994) Endometriosis and Tamoxifen Therapy

US National Library of Medicine – (Abstract; Nov. 2012) Risk Factors for Developing Endometrial Cancer After Benign Endometrial Sampling

Wakemed Health & HospitalsLearn What to Expect from Endometrial Polyp Removal

Womens Health Concern

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 🙂 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Reader’s Choice : Pelvic Floor Dysfunction

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A bird’s eye view of the pelvic floor muscles

Have you heard of pelvic floor dysfunction?  I hadn’t; not before meeting women who suffer from it.  And I’d never heard of a pelvic floor before that, either.  We’re going to focus today on pelvic floor dysfunction in women (although men can get it).  But what is it?

The pelvic floor is made up of a lot of little muscles, nerves, and tissues all working together for your body to function.  Imagine it as a tightly-woven basket at the underside of your pelvis, sweeping from front to back, and side to side.  Not only does it support the organs of the pelvis, but it also wraps around the urethra, rectum, and vagina.  When these muscles, nerves, and tissues stop working properly (they are too tense or too lax), it’s called pelvic floor dysfunction.  It can cause pain and difficulty with urination, defecation, intercourse, and lower back pain.

Doctors aren’t sure what causes pelvic floor dysfunction, but know that it does exist…and can occur for a lot of different reasons.   Data shows that almost 50% of people that suffer with constipation actually suffer from pelvic floor dysfunction.

The symptoms of pelvic floor dysfunction vary:

  • Feeling like you have to poo a lot over a short period of time
  • You feel unsatisfied about a poo and feel like you’ need to go more
  • Straining to poo
  • Constipation
  • A frequent need to pee.  Sometimes once you start peeing, you stop and start again mid-stream
  • It hurts to pee
  • You feel a need to bear down to pee
  • Lower back pain
  • Ongoing pain in your pelvis, genitals, or rectum
  • Painful sex
  • Muscle spasms along the pelvic floor

Many women with Endometriosis and Interstitial Cystitis suffer from pelvic floor dysfunction.  Some of these women treat with antidepressants, which may worsen the symptoms of pelvic floor dysfunction.

If you suspect you have pelvic floor dysfunction, your doctor will get a complete medical history from you, including your symptoms.  He/she may conduct an internal physical examination to determine how well you can control your pelvic muscles.  Another test may involve the use of an adhesive pad with electrodes between your anus and vaginal opening which measures muscle contractions (this does not sound pleasant).  A perineometer may be used, which is a small tampon-like sensor that is inserted into the vaginal canal that takes readings of muscle strength and weakness.  An x-ray test may also be conducted:  you’re given an enema and your muscle contractions are visible to the physician as you push out your poo (I’d die of embarrassment).  Another test may check the weakness or strength of your ability to control urinating.

You’ve been told you have pelvic floor dysfunction.  Now what?  Several treatment options are available to you:

  • Physical therapy : internal or external manipulation of the muscles, trigger point release, massage, nerve release, and skin rolling.
  • Biofeedback and electric stimulation : working with a physical therapist using electrodes to measure and improve muscle coordination and relaxation.
  • Ultrasound therapy : using sound waves to help reduce spasms and reduce inflammation.
  • Cold laser treatments : may be used to reduce inflammation and pain.
  • Medication : low-dose muscle relaxants may help ease pelvic floor dysfunction and restore muscle control
  • Relaxation techniques : warm baths, yoga, breathing exercises, and stretching exercises may also help realign and restore whacky muscles
  • A change in diet : eat foods that are well-known to aid in the pooping-arena, such as high-fiber fruits and vegetables.
  • Surgery : in extreme cases, such as rectal prolapse, surgery may be required to repair dysfunctional pelvic floor muscles.

Several of the gals in our local support group had the pleasure of going to a pelvic pain & pelvic floor therapy workshop hosted by Comprehensive Physical Therapy in San Diego.  It was wonderfully enlightening, and a few of the therapists also suffer from Endometriosis.

Prevention Magazine ran a story in 2014 (careful, lots of pop-ups) about pelvic floor dysfunction and followed the story of “Lisa.”  The article also points out several tips and tricks you could do to help aid in the healing of PFD.

If you suffer from a pelvic floor disorder and want to meet a community of people who also know what you’re going through, you may want to check out Voices for PFD.

Thank you, Toni, for suggesting I read up and write about PFD.  I learned a lot today.

Resources:

Cleveland Clinic

Interstitial Cystitis

Mayo Clinic

Mayo Clinic – (Article; Feb. 2012) Recognition and Management of Nonrelaxing Pelvic Floor Dysfunction

Monterey Bay Urology Associates

Prevention MagazinePrevention Magazine – (Article; April 2014) Why It Hurts Down There. What You Need to Know About Pelvic Floor Dysfunction

The University of Chicago Medicine

Vital Health Institute

Voices for PFD

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 🙂 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

New study : Endometriosis found in cynomolgus monkeys

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So, we recently wrote about Endometriosis being found in two mandrillus sphinx.  Last year we learned about Endo being found in a German Shephard.  Well, today we read about it being found in monkeys: cynomolgus monkeys.  This is not the first time Endometriosis has been found in this breed of monkey, but we’re going to focus on just this new study today.

There are roughly 1,500 – 2,000 cynomolgus monkeys living in the breeding colony of the of the Tsukuba Primate Research Center in Japan, and it boasts of 200 newborns each year.  Eight of these monkeys received ultrasounds and examinations which led the facility to believe they may of Endometriosis.  Each of these monkeys was raised at the facility.  They were between 5-21 years old.  Half of them had given birth; the other half had never been pregnant.   They had always been fed daily “commercially-prepared monkey chow” and 100g of apple.  Two of them had received embryo transfer procedures and some had cysts drained (which showed up in routine ultrasound scans).  The study does not discuss any further type of symptom suppression treatment.

Unfortunately, all eight of these monkeys perished.  Three of those were found dead between 2005 – 2011; the remaining five were euthanized due to their declining state of health.  All eight monkeys received autopsies and confirmed diagnoses of Endometriosis.  A diagnosis “which was considered the cause of death or deterioration of the general condition of the animals.”  Four of the monkeys had Endometriomas (chocolate cysts) on their ovaries, uterus, or other pelvic organs.  They also had adhesions (scar tissue) and Endometriosis lesions throughout their pelvic cavity.  Some were found to have Endometriosis lesions in their Pouch of Douglas, colon, and colonic muscle tissue.   The two monkeys that had Endo lesions in their colon were also found to have Endometriosis lesions within their lymph nodes.  Three of the monkeys were also found to suffer from Adenomyosis.

The data on each of these eight monkeys showed they had the following symptoms while they were menstruating:

  • decreased food consumption (all 8)
  • no bowel movements (6 monkeys)
  • loose bowel movements (7 monkeys)
  • loose bowel movements with blood (1 monkey)
  • bloating (4 monkeys)
  • vomiting (1 monkey)
  • enlarged or irregular uterus (5 monkeys)

The authors hope that further study of Endometriosis in Cynomolgus monkeys will help us better understand the disease in humans.  I just feel so awful for the animals that suffer with this illness.  We at least have a voice and can seek medical care (well, most of us).  And truly knowing that this disease has such a widespread effect on many, many species on this planet just makes it all the uglier.

Resources:

Human Reproduction – (Article; Sept. 2016) Characteristics of Histologically Confirmed Endometriosis in Cynomolgus Monkeys

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

My Pain

I’m a visual kind of person.  And I’m thinking of printing and bringing this to my surgeon for my pre-op appointment…Although I must say the past two days have been pretty much pain free. 🙂

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Where do you hurt?

Endometriosis & Leg Pain/Sciatica

I have heard from several EndoSisters that they suffer from leg pain; whether it be their hips, upper thighs, or radiating pain down their leg(s).  Today we delve a bit deeper into leg pain complaints and Endo.  Have upper leg pain? Lower back pain? Tailbone pain?  So do a lot of people…but so do a LOT of women with Endometriosis.  A 2011 study surveyed 94 women with Endometriosis.  Of them, 51% complained of leg pain.

Back in 1966, a study was published of two women who complained of leg pain and partial paralysis:

A 35-year-old woman had bilateral buttcheek pain, which extended down her thigh, her leg, and into her ankle.  At first, her physicians suggested bursitis and advised her to keep a pain journal, especially with the weather changes.  Others suspected she had a damaged disc in her back.  It was because of her pain journal that she realized her symptoms occurred around her period.  Her OB/GYN suspected Endometriosis and put her on Mestranol, a synthetic estrogen…which made her symptoms far worse and present every day.  A week before her scheduled surgery, she could no longer extend her right foot without causing severe pain up her thigh and into her buttcheek.  She couldn’t walk without crutches.  She also had increased complaints of weakness.  Her imaging studies were normal, but her electromygram suggested denervation in her right peroneal nerve.  She also had muscle atrophy on her right side.  Her uterus was found to be enlarged (as if she were 6-week’s pregnant) and a mass was detected.  Upon exploratory surgery, her sciatic nerve was discolored (bluish tint) and the nerve sheath was cut “releasing a black fluid.” (Gross)  The biopsy showed endometrial glands and she was diagnosed with Endometriosis of her sciatica.  She also had a hysterectomy, removed both of her ovaries, and her appendix was removed.  She did not have Endometriosis anywhere inside her pelvic region.  A year later, she had no complaints of pain.

A 43-year-old woman complained of left leg and buttcheek pain for the past seven years.  The pain worsened over the years, which extended down her left thigh, leg, and into her foot.  She felt pins and needles over the top of her foot.  Her pain was constant and dull, but worsened around her period.  She saw her OB/GYN, who performed a hysterectomy.  Her pain, however, continued to return once a month, around the time she *would* have continued to have her period.  Two years later, a diagnostic imaging found a “defect” along her lumbar/sacral spine.  No disc protrusion was noted, but she now complained of stiffness in her left hip and had begun to walk with a limp.  A year later, she had numbness on the top of her foot and left leg, as well as muscle atrophy of her left calf.  A tumor was found and removed from her spine and was diagnosed as a neurofibroma.  Ten months later, she went in for an exploratory surgery of her sciatic nerve.  It, too, was “infiltrated…with firm dark tissue.”  Biopsy revealed Endometriosis.   She subsequently had both of her ovaries removed.  Three years later, she was still pain-free, but the numbness and weakness in her left leg continued.

In the ’90s, a study followed women with Endometriosis who suffered from upper leg pain, weakness, and loss of sensory control during their periods.  Physical therapy didn’t help and neither did anti-inflammatories.  Hormonal therapy helped a lot of the women, but not all.  Where hormone treatment failed, excision surgery was performed.  Although pain and loss of control diminished with  hormonal treatment and surgery, the leg weakness wasn’t helped for many women.  This suggested neuropathy or radiculopathy damage (aka nerve damage).

In 2007, a study of a 37-year-old woman was published.  She’d been hospitalized in the past for fevers, left lower quadrant tenderness, left lower extremity pain with trouble walking, and weakness.  Her previous treatments resulted in antibiotics, which helped her fever subside, but her tenderness and pain persisted.  An MRI revealed cystic lesions (likely Endometriosis) and the presence of an Endometrioma.  After her second hospitalization and run on antibiotics, she underwent a laparoscopic surgery.  They found and excised Endometriosis lesions, as well as the Endometrioma.  But the Endometrioma extended into her obturator nerve, which they cleaned up and removed the Endometrioma and all traces of foreign tissue.  Two weeks after her surgery, she reported no pelvic pain and no leg pain.  She was also able to walk without issue.

A study published in 2010 was about a woman with Endometriosis who complained of sciatic pain.  She underwent a treatment called magnetic resonance neurography (which all insurance companies may not cover).  It’s a type of MRI, but modified to focus on the nerves.  This MRN found some issues with her sciatic nerve and she underwent an exploratory surgery.  They located and removed Endometriosis from her sciatic notch, as well as treated her nerves so they would temporarily stop sending pain signals.  After surgery, she received GnRH treatment (I’m guessing Lupron), and had significant improvements in her pain and symptoms.

A 2011 study reviewed the literature of cases from 2004 to 2010.  Two hundred thirteen women complained of sciatic or glute pain for unknown reasons.  They underwent exploratory laparoscopic surgeries and *lo and behold* many of them had Endometriosis on the sciatic nerve (27 patients) and deep infiltrating Endo on the sacral plexus (148 patients).  Others were found to have sacral plexus vascular entrapment (37 patients) and Pyriformis syndrome (1 patient).  The authors of the study suggest physicians consider Endometriosis of the sacral and sciatic regions in women who complain of pelvic and back pain.

A 2012 Letter to the Editors was published in the Journal of Neurology.  It highlights the case of a 45-year-old woman who suffered from lower back pain and leg stiffness.  An MRI showed possible Endometriosis on her iliac muscles and right gluteus muscles.  A previous EMG, spinal MRI, CT, and PET scans came back normal.  Muscle relaxers and NSAIDs did nothing to help the pain.  She had no prior diagnosis of Endometriosis; however, her CA-125 levels came back high (a possible indicator of Endometriosis).  She began a treatment of Lupron Depot and 3 months later reported a decrease and symptoms and another MRI showed a decrease in the amount of lesions.

A study in 2013 found that out of 30 women who complained of upper leg pain and had Endometriosis, 9 of them suffered from neuropathy.  Out of the 30 women in the control group who had leg pain, but did not have Endometriosis…zero of them tested positive for neuropathy.  The authors suggest that tissue biopsy and neurological examination be considered forms of diagnostic treatment in women have Endometriosis and complain of leg pain.

An October 2016 published article in World Neurology was about a 39-year-old gymnast who had complained of sciatica and back pain.  She had undergone a spinal fusion at her L4/5 & L5/S1 vertebra, but it did not help with her pain.  Two years later, her gynocologist suspected Endometriosis due to her monthly pain and suggested a surgery.  She refused, but started Lupron Depot, which made her symptoms feel better.  However, she quit Lupron Depot since she couldn’t deal with the side effects any longer and opted for a hysterectomy.  Her symptoms completely resolved after a hysterectomy and removal of her ovaries, and she received a confirmed diagnosis of Endometriosis.  Her spinal surgery was considered unnecessary had her physicians only known about her Endometriosis diagnosis.

The documented cases of Endometriosis on or inside the sciatic nerve sheath go on and on and on.  It is well-proven that it can exist there, and can cause radiating pain down the leg(s) with or without numbness, tingling,  and partial paralysis.

But is all leg and lower back pain caused by Endometriosis lesions?  No, some of it can be nerve damage.  Leg pain and these other symptoms can also be caused by other nerve impingement or disc damage.  Some women even have issues with Endometriosis in their psoas major muscle, which can affect the lower back and hips. You can read more about that here.

Studies have found that it is important to test the nerves for neuropathic pain, rather than referred pain.  What’s the difference?  Referred pain is pain in the body that’s not at that source (like your leg hurts, but your leg isn’t hurt).  Neuropathic pain is a chronic pain condition caused by nerve and tissue damage.  These damaged nerves send pain signals to wrong areas of the body…like the legs.

Some women incur neuropathic nerve damage from pelvic surgery, mostly in the following areas of the body…but these same areas can be affected by Endometriosis (as you’ve read above):

 

  • obturator – nerves from the pelvis to the leg;
  • ilioinguinal/iliohypogastric – nerves from your lumbar spine that travels down the upper and mid-thigh, and (with women) also covers our mons pubis and labia majora;
  • genitofemoral – a nerve that travels to the upper thigh and mons pubis;
  • femoral – the nerve that runs down the upper thigh and inner leg
  • lumbosacral nerve plexus – a whole bundle of nerves that consist of the above-referenced nerves, and then some.

The post-op damage may have been the result of surgical trauma, an injury by stretching, suture entrapment, or may have been caused by the retractors used during surgery. Physical therapy or surgical repair may help reduce any symptoms of post-operative nerve damage.  A 1966 study found that 36 women and 14 cadavers who had hysterectomies were found to have femoral neuropathy, likely due to the force of the retractors used during the surgeries.

What have I learned today?

Some women find relief from leg pain pain with GnRH agonist treatments, such as Lupron Depot.  Others find relief after surgical intervention.

If you have pain/numbess/weakness down your leg, into your foot and ankle, on your upper thigh, around your backside, or even in your tailbone and think it may be related to your Endometriosis, have a conversation with your doctor.  Or it could be nerve damage from prior surgeries.  Or it could be both.  Either way, talk.

If your imaging studies turn out normal, don’t lose heart.  If your physician tells you that the pain is all in your head because your scans are normal or nerve block injections aren’t working, feel free to INSIST it is not.

The only way to truly diagnose if Endometriosis is impeding our sciatic or other nerves is through an exploratory surgery and biopsy of any tissues discovered.  If you have a surgery pending (or would like to schedule one) and suffer from these symptoms, ask your surgeon to take a close look at your sciatic sheath, obturator nerve, or other nerves that may be affected.

Treatments range from hormone therapy, physical therapy, nerve blocks, and surgery.

~

Have you been diagnosed with Endometriosis that affected your sciatic nerve, obturator nerve, or legs? We’d love to hear from you.  Share your experience with us either in the comments or here.

**Updated January 17, 2017**

Resources:

Clinical Imaging – (Abstract; March 1990) MRI Findings of Sciatic Endometriosis

European Journal of Obstetrics & Gynecology and Reproductive Biology (Abstract; Aug. 2014) Severity of Cyclic Leg Pain in Women with Endometriosis and in Controls – Effect of Laparoscopic Surgery

Fertility and Sterility – (Abstract; Feb. 2011) Laparoscopic Therapy for Endometriosis and Vascular Entrapment of Sacral Plexus

Fertility and Sterility – (Abstract; June 2010) Magnetic Resonance Neurography for the Diagnosis of Extrapelvic Sciatic Endometriosis 

Fertility and Sterility – (Abstract; Oct. 1999) Phantom Endometriosis of the Sciatic Nerve

Fertility and Sterility – (Abstract; July 2013) Pain in the Upper Anterior-Lateral Part of the Thigh in Women Affected by Endometriosis: Study of Sensitive Neuropathy

Journal of Bodywork and Movement Therapies – (Abstract; July 2011) A Pilot Study of the Prevalence of Leg Pain Among Women with Endometriosis

Journal of Minimally Invasive Gynecology – (Article; Nov./Dec. 2007) Laparoscopic Excision of Endometriosis of the Obturator Nerve: A Case Report

Journal of Neurology – (Article; July 2012) Sciatic Endometriosis Presenting as Period (Catamenial) Sciatic Radiculopthy 

Journal of Neurosurgery – (Abstract; May 1998) Catamenial Mononeuropathy and Radiculopathy: A Treatable Neuropathic Disorder

Journal of Neurosurgery – (Abstract; Feb. 2011) Cyclic Sciatica from Extrapelvic Endometriosis Affecting the Sciatic Nerve: Case Report

Journal of Neurosurgery – (Article; Dec. 1966) –  Endometriosis Within the Sheath of the Sciatic Nerve; Report of Two Patients with Progressive Paralysis

Journal of Spinal Disorders & Techniques – (Abstract; Oct. 2011) Cyclic Sciatica in a Patient with Deep Monolateral Endometriosis Infiltrating the Right Sciatic Nerve

Obstetrics & Gynecology – (Abstract; Aug. 2002) Postoperative Neuropathies After Major Pelvic Surgery

The Journal of the American Medical Association – (Abstract; Feb. 1966) Femoral Neuropathy – A Neurological Complication of Hysterectomy

World Neurology – (Abstract, Oct. 2016) Cyclic Sciatica and Back Pain Responds to Treatment of Underlying Endometriosis: Case Illustration

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

2nd Surgery pending…

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This morning I found out Surgery No. 2 is imminent, thanks to my Endometriosis. The date will be sometime in September; I’ll know more in a few days. I met with my doctor today to discuss my ongoing symptoms and worsening pain.  After a long talk and history, an a transvaginal ultrasound (OUCH), and another looooong talk in his office: he felt it’s time to peek under the hood.  I knew going in today that the surgical option was likely it. I wish we could tell if it was present in other ways.  But nope.  My CT was normal.  My US was normal.  But, as you and I both know, it may not always show up on imaging studies.  My symptom history is what convinced him:
  • Painful sex with deep penetration
  • Cramping after sex (sometimes for days)
  • Bleeding after sex
  • Right upper quadrant pain in my abdomen
  • Pain in the middle of my lower abs
  • Pain to the right of my belly button
  • Pain above my belly button
  • Pain when he pushed on those areas of my torso
  • Waking up at night screaming because of the pain in my torso
  • Examining my prior surgery photographs and seeing they line up with my present complaints of pain (diaphragm, liver).
  • Extreme bloating after exertion
  • Flare-ups after exertion
  • A change in the quality of my life, once more.
My surgeon is also my gynecologist, so he is intimately familiar with my bits. And even better? I like him. And I trust him. And he believes in removing the disease, not just burning or scraping it away…but cutting it out. And he frequents many conferences about the disease (he just returned from an Endo conference in Russia). And he TEACHES robotic laparoscopic surgeries, so he really, really, really knows what he’s doing.
He will look in all the usual spots one finds Endo (pelvic region, uterus, ovaries, fallopian tubes, pouch of douglas), but he’s also going to check my bowels, bladder, liver, and diaphragm.  AND he’ll keep his eyes peeled everywhere else while he’s in there.  If the lesions are back, I’ve no doubt he’ll find them.  And if there’s no Endo present, he’ll still remove the adhesions/scar tissue.
And I cried like a baby in his office.  A new nurse practitioner was also present, and she scrambled in search of a tissue box.  It was kind of cute watching her through my tears as she tried to non-nonchalantly reach around his desk and bookshelves, only to come up empty handed.  We talked about my fears:
  • What if it’s all in my head?
    • It’s not in your head.  We’ve already confirmed you suffer from Endometriosis.  Pain is not normal.  And Endo can come back.  You know this.
  • What if you get in there and there’s no Endo?
    • Then we’ll clean up your scar tissue.  It’s the best case scenario, Lisa.  It’d be good.
  • I feel so stupid.  Like a hypochondriac.  Like a wussy.
    • You’re not stupid.  You’ve already been dealing with the pain for at least six months.  You’ve suffered long enough already.  It’s time to clean you up.
And, of course, his incredible support just made me cry harder.  He knows about our support group and our blog.  So he was wonderful when he said, “I know you know all of what I’m about to tell you, but I’m going to tell you anyway.”  And proceeded to explain about Endometriosis’ return, how excision surgery is the “Golden Standard,” and how robotic surgery is usually the best choice.  I absolutely love my doctor.
The DaVinci robotic surgery system is nifty. The surgeon sits at a console with controls (yes, a grown up gamer system!) and controls teeny-weeny-itty-bitty robotic hands to surgically cut out my Endometriosis lesions and free up scar tissue. He can also suture with the bitty arms. Wanna see something amazing? Watch this video of the robotic system skinning a grape….
Now watch this grape getting stitched back together by robotic-assisted surgery system…
So bear with me over the next few weeks as my emotions go up and down. I may clam up and turn hermit for a while. Or I may suffer from verbal diarrhea and you won’t be able to shut me up. I may sniffle at the slightest thing. Or may just stare out in space. I don’t have any fear of the surgery; it’s the recovery I dread. It’s incredibly painful. And after my surgery, don’t mind me if I cancel things on ya. It’s not that I don’t want to go, it’s that I can’t.
I know many of you reading this suffer from Endometriosis. And many of you know people who do. Continue to spread the word about it…I was 35 years old before I’d even heard of it, yet suffered from it most of my life. If you’ve never heard of it, 1 in 10 women suffer. And it’s incurable: they cut it out, it grows back, they cut it out again, it can grow back again. I made it two years since my first surgery before popping daily pain pills…here’s to hoping for a much longer remission this time around.
All in all, I’m doing okay.  What started out as a tearful morning has turned into a kind of “get it over with already” resolve.  I’m ready.  And will let you know when my date is, once I receive word…