Heading to the Desert

BurningMan

I’ll be out on an adventure 8/28/15 – 9/9/15.  Completely off the grid at a tiny little event called Burning Man.  This will be my 5th year attending, but my first year since my Endometriosis diagnosis and diet change.  Should be interesting 😉

Hoping for my first pain-free year, too!  Cross our fingers and toes for me!  And I’m VERY excited about the Endometriosis Support Group we are hosting at Burning Man this year! I’ll be sure to post an update and pictures when I get back.

See you when I get back.  Until then, stay healthy and be well.

Yours,

Lisa

Truth, Theory, or Tall Tale?

Physical therapy may help improve Endometriosis pain, pelvic pain, and adhesion pain?

Theory

There is a lot of claims, research, and studies out there that physical therapy can help improve pain and symptoms associated with Endometriosis and adhesions.  More on this topic will follow in a few weeks on this blog.  But there are many, many, MANY women and facilities stating that physical therapy has helped with their pain.  Whether it be pelvic floor therapy, the Wurn technique, or other PT, it may be an avenue of treatment you may wish to pursue.  Because it works for some women, but not all women, I’m classifying this as a theory.  And will most certainly be looking more into it in the very near future.

Have a great and pain-free day.

Yours, Lisa

New Book Added to the Library

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Today we’ve added to our library The Endo Patient’s Survival Guide by Andrew S. Cook, M.D., FACOG; LIbby Morton, M.S.; and Danielle Cook, M.S, R.D., C.D.E., published in 2015.  The Endo Survival Guide is the patient’s essential companion to living with and overcoming endometriosis and pelvic pain: from seeking help and getting an initial diagnosis, to navigating treatment options, and achieving optimal relief and wellness.

If you’d like to check it out, or any one of our other books, click the “Library” link in the upper right corner.  OR buy your copy on Amazon by clicking here.  And once you’ve read it, drop a review on their Amazon page.  Get the word out! A wonderful book.

Yours,

Lisa

Read, Enjoy & Return

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from “Stop Endometriosis and Pelvic Pain. What Every Woman and Her Doctor Need to Know” by Dr. Andrew S. Cook

I purchased a Bloomin’ Uterus Library stamp 🙂  Now in the process of stamping the books which are a part of the library.  If you borrow one, my contact info is just a page away!!

Read, Enjoy & Return; that way other people can borrow them when you’re done.

Interested in seeing what’s available for check-out?  Click the “Library” link in the upper right of your screen.

And enjoy!!!

Yours, Lisa

Reader’s Choice : Letrozole & Endometriosis

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Photo courtesy of JLD

One of my local EndoSisters has started a new medication to help with her Endometriosis pain and symptoms, based upon the recommendation of her new physician.  It’s Letrozole, which I had never heard of.  And she asked me if I had any info on it…so…now I’m inspired to do some research!

What is Letrozole?

Letrozole is the generic name for Femara, a drug classified as an aromatase inhibitor.  What is aromatase?  It’s an enzyme that is crucial in the creation of estrogen. Aromatase inhibitors have been FDA approved for treating breast cancer in post-menopausal women.  However, it has piqued the interest of the medical community in controlling Endometriosis symptoms.  It is not yet FDA approved for this treatment, but is used as an off-label, accepted treatment among the medical community. As of today’s research, there are no indications that drug manufacturers are going to seek FDA approval for aromatase inhibitors to treat Endometriosis.

Courtesy of: Michiko Maruyama, michiko.maruyama@gmail.com, www.artoflearning.ca
Used with permission: Michiko Maruyama, michiko.maruyama@gmail.com, http://www.artoflearning.ca

Endometriosis has been theorized to be a largely estrogen-driven disease.  Aromatase has been found in increased amounts in the endometrial tissue of women with Endometriosis, as opposed to women without.  Some physicians are now prescribing aromatase inhibitors when no other traditional treatments have helped with a woman’s Endometriosis symptoms.  The hope is that by inhibiting (blocking) aromatase production, it will ease Endometriosis symptoms and progression.  Aromatase inhibition may give rise to ovarian stimulation (widely used to increase fertility) and ovarian cysts; and therefore are often used in combination with other drugs, such as Norethindrone (progestin), Zoladex (GnRH agonist), or birth control pills to help women with Endo to avoid further production of painful ovarian cysts, etc.

Side Effects:

Specifically, Letrozole has been known to cause fatigue,drowsiness, and dizziness, especially when combined with alcohol or when the person is exposed to heat.  A woman who is newly taking Letrozole must be cautious when driving until she truly knows how her body responds to the medication.

The FDA has released an entire list of side effects women complained of while treating with Letrozole for their breast cancer: angina (chest pain), arthritis, bone fractures, cerebrovascular/TIA (similar to a stroke), constipation, diarrhea, endometrial cancer, endometrial proliferation disorders, fractures, dizziness, edema (swelling), fatigue, headaches, hot flashes/flushes, light-headedness, myalgia (muscle pain), myocardial infarction (heart attack), nausea, night sweats, osteoporosis, other cardiovascular issues, other endometrial disorders, thromboembolic event (strokes), vaginal bleeding, vaginal irritation, vomiting, and weight increase.  To review their list and the percentages of these occurrences, please see Page 20 of their report, found here. Some women have also complained of a decrease in their libido.

When used in combination with a progestin or birth control pill, aromatase inhibitors do not cause osteoporosis; however, if used with a GnRH agonist, osteoporosis may develop.  Your physician may recommend frequent bone scans to ensure bone loss is not occurring while treating.  They may also recommend you take Calcium and Vitamin D during your treatments.

RXList.com has an ongoing list of testimonials and reviews of women who take Femara (Letrozole) and what their experiences and side effects have been.  I know that my EndoSister’s going through a lot of joint pain at the moment.  Almost everyone complained of bone and joint pain; stating:

“Then–suddenly I was having bone pain in legs (felt like someone took a 2×4 and whacked me across the leg bones)–joint pain in shoulders, knees, ankles, feet, and fingers.”

“I started having joint pain in the knees, feet, and fingers. Also fatigue and muscle weakness. Feel like I have aged 10 years.”

“I have experienced severe bone and muscle pain to the point that I find it difficult to walk up and down stairs.”

“I hurt so badly I could barely get out of bed or walk down the halls at work”

Many women stopped taking the drug because of the intensity of the side effects.  To read all of the user reviews, click here.

Clinical Trials:

In 2004, a pilot study was published in the Fertility and Sterility journal on the effectiveness of managing Endometriosis symptoms using Letrozole.  The study involved 10 women who did not respond to surgical or medical treatment of their Endometriosis.  They were given 2.5mg of Letrozole, 2.5mg of Norethindrone, as well as Calicum Citrate and Vitamin D supplements for six months.  The study concluded that there was a “marked reduction of laparoscopically visible and histologically confirmed endometriosis in all 10 patients and significant pain relief in nine out of 10 patients who had not responded previously to currently available treatments,” and they strongly urge the use of this regimen in treating Endometriosis symptoms.

Another study in 2004, again published in the Fertility and Sterility journal, followed the treatment of two women.  They were given Anastrozole (a different aromatase inhibitor), as well as a progesterone pill, calcitriol, and rofecoxib for three months.  Both of the women had a rapid reduction in their pain and symptoms, and remained so even 24 months after receiving the treatment.  One underwent a diagnostic laparoscopy 15 months after treatment and was confirmed free and clear of any Endometriosis implants.  Both women were able to conceive within 24 months of treatment.

The Middle East Fertility Society Journal published an article in 2014 which reviewed several different types of drugs emerging in Endometrosis treatment, including aromatase inhibitors.  It also summarizes several past studies regarding Endometriosis and aromatase inhibitors.  Curious?  Click here.

In 2015, a study was published in BioMed Research International of a clinical trial of Letrozole and its effectiveness in decreasing the size of endometrioma (blood-filled cysts).  The lead author of this study is also the doctor whom prescribed Letrozole to my EndoSister who inspired today’s blog.  It was a three-month study of eight women, each of whom agreed to the “off-label and unproven therapy,” in the hopes it would reduce their Endometriomas and Endometriosis pain.  They were given daily 5mg doses of Letrozole, as well as daily 5mg doses of Norethindrone (the FDA-approved “add back” therapy used with Lupron Depot).  A typical daily dose of Letrozole is 2.5mg, but since this study was only three months long, they upped the dosage.  And Norethindrone was used “…to minimize the negative effects of induced hypoestrogenemia and thus make the letrozole therapy more tolerable.”  Hypoestrogenemia is a deficiency of estrogen in the blood. Over the three-month period, they found the Endometriomas decreased by 50%, and the women had significant reductions of pelvic pain and painful sex.  More studies are needed, including double-blind tests with placebo, as well as longer studies, and smaller doses. It is their hope that these studies will lead to a lesser need for surgical intervention in suppressing the pain and manifestations of Endometriosis.

I encourage you to look online for a plethora of additional studies regarding aromatase inhibitors and Endometriosis.  Or you can check out the studies listed by Northwestern University Feinberg School of Medicine’s Department of Obstetrics and Gynecology, here.  There were just too many to summarize.

Conclusion

Although the treatment of Endometriosis with aromatase inhibitors is not approved by the FDA, and there’s no indication that such approval will be sought, the studies and trials do appear to support the notion that they help reduce and control the pain and progression of this disease.  If you are able to swallow the idea of an experimental drug, you may want to talk to your physician about this treatment regimen.

Resources:

Advanced Fertility Center of Chicago

Endometriosis.org

Fertility and Sterility (2004; Article) : Treatment of Endometriosis and Chronic Pelvic Pain with Letrozole and Norethindrone Acetate : A Pilot Study

Fertility and Sterility (2004; Article) : Successful Treatment of Severe Endometriosis in Two Premenopausal Women with an Aromatase Inhibitor

Hindawi Publishing Corporation (2015; Article) : Reduction of Endometrioma Size with Three Months of Aromatase Inhibition and Progestin Add-Back

Merriam-Webster

Northwestern University Feinberg School of Medicine

RXList

Science Direct (2014: Article) : Emerging Treatment of Endometriosis

U.S. Food and Drug Administration : Femara (Letrozole tablets) drug information page

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from an my my friend, JeriLynn, who asked, “Do you happen to have anything about the new medication I’m on??”  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 (or in this case, attorneys). Always.  Yours ~ Lisa

Feel Good Friday

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It’s Friday!!!  Today’s Feel Good quote is by Mandy Hale (a blogger turned author):

“It’s OKAY to be scared. Being scared means you’re about to do something really, really brave.”

I have a lot of EndoSisters about to go into surgery, or have pending follow-up appointments, or other procedures, etc.  And it is absolutely okay to be scared.  Just remember that you’re not alone; we’re all here holding your hand while you go through this.  And you are incredibly brave for what you are about to endure.

You’ve got this.  You really, really do.

As one of my favorite characters, Sir Didymus, once said to his faithful steed, Ambrosius, “Just close your eyes and go!”

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New Books Added to the Library

BU LibraryJust an update to let you know we’ve added two new books the library.  Interested? Feel free to check ’em out, we’ll mail them to you free of charge. All we ask is that you read it and return it within one month, paying your own return postage.

Library?  What?  Check out the link in the upper right of this webpage that says “Library” and you’ll be brought to a list of my personal Endometriosis and health-related books.  Free for your borrowing (but please return them so we can keep the pages turning)…

And books often are returned and added back to the available list.  Feel free to check back often!

Yours,

Lisa

Share Your Story : Michelle

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Michelle had suffered with the pain associated with Endo long before she was diagnosed with Endometriosis when she was 21.  Now 52, she lives in Bury, Lancashire in the UK. Her story is one of the more dramatic ones I’ve read so far:

Michelle’s Journey:  I had excruciating period pain from being 16. My doctor at the time told my mum I was hypochondriac and could not take pain. We all believed him.

I almost collapsed one day going to work and when I pressed my tummy it felt bruised and so sore. I knew there was something in my tummy but family and friends laughed at me. I needed someone to check my tummy but who? My doctor wouldn’t! I went along to a family planning clinic at age 21 under the pretense that I wanted a coil fitted. Three doctors examined me that evening, each asking me why I was there and then having meetings together. They called me in the room and announced I was 9 months pregnant. I told them that was impossible, I still had periods and really painful ones. They said “we are 3 doctors and WE KNOW when someone is pregnant”. They said I was in denial.

I had to go to my doctor as emergency the following morning. He was not there but a nice young lady locum doctor was. She arranged for an emergency scan first thing. She said not to worry everything would be ok. People from all over heard overnight about my imminent baby and by day 2 I had everything: cots, blankets, clothes, prams etc. The generosity of everyone was overwhelming and I started to believe I was having a baby. Next morning, the scan… I woke up in so much pain. They put the scan probe on my tummy and immediately turned the screen away. What is wrong, why can’t I see the screen??? Wait for a week for the results to get to your doctor they said.

I collapsed when I got home, blood pouring from below! My mum phoned my new doctor, she rushed up to my home. I was on the toilet with blood pouring. She contacted the hospital and then the bad news… no baby… Endometriosis….cyst, the size of a 9 month baby! Emergency operation was organized. When they opened me up the 9 month baby cyst was the ‘small’ one at the front… I had a larger massive one that had twisted round my back, up my spine and was pressing on my heart… I would have only had 2 weeks to live had I not sought help at the family planning clinic! If I had been older they would have done full hysterectomy but wanted to try and save one of my ovaries even though badly damaged.

I suffered cysts, pain, bleeding for years. Eventually at 31 I had a full hysterectomy. Best thing ever. If I hear of young girls in pain with periods, I tell them all to seek help immediately, you just never know.

Words of Advice for Us:  Do not suffer pains. Tell them you need pain relief. Keep an eye on tenderness in the pelvic area. Ask for regular scans. Don’t be fobbed off.

Last Words: Listen to your body…you know it better than anyone! Research and do your homework on the condition. And make your doctor listen to you.

If you wish to contact Michelle, you can mail her at michellesmith01@yahoo.co.uk

I want to send a special Thank You out to Michelle for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  May your words sink in for some of the women going through a similar situation.  And again, thank you for being brave enough to share! Yours, Lisa.

downloadAnd if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Endo, Medications & Sunburns

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So, like a lot of other women with Endometriosis I’ve done a few things : 1) Lupron Depot injections, 2) NSAIDs, and 3) birth control pills.  Each of these medications, and any type of hormone treatments, can make a person susceptible to sunburns or sun sensitivity.  This past weekend I was out and burnt the tops of my hands, and man did it happen quick and did it itch!!  Ugh.  Which got me curious: why does it make me more sensitive?  I remember reading in my Lupron and birth control packets about the sun sensitivity warning.  But what’s going on with my body? Time for research!

Sunburns

Most, if not all, of us have had a sunburn at least once in our lives.  Too much exposure to the sun, not enough protection, and *poof*: we’re red.  Ultraviolet rays from the sun (or tanning beds) are the culprits: UVA and UVB rays, to be exact.  UVB rays cause a chemical reaction with our cells causing swelling and the typical red, burnt discoloration and tenderness.  UVA rays go much deeper into the skin and may lasting damage, including wrinkles, sagging skin, spider veins…and skin cancer.

Some medications (among them are hormones & NSAIDs) and medical conditions (such as Lupus) have been known to make people more susceptible to sunburns or develop a photosensitivity.

With the ongoing thinning of the ozone layer, the sun’s rays are more damaging than ever.  Sun protection should be used especially when the UV Index (a scale of 0-10) is listed as Moderate to Very High (5-10+).    And don’t let the cloudy days fool you : UV exposure can still be damaging on cloudy, hazy, or snowy days.

Photosensitivity

What? I had to look this up…Photosensitivity is a reaction very similar to a sunburn, but not quite the same.  It is generally broken down into two categories: phototoxic or photoallergic (based on the symptoms).  Rather than just being caused by sunlight, photosensitivity is caused by a combination of chemicals and sunlight.  Exposure to UV rays can cause redness, sometimes accompanied by an itchy rash and sometimes hives or blisters to appear where your skin was exposed to sunlight.  It can develop shortly after exposure to the sun (within 2 hours or less), and can remain for a week or more.

You can develop photosensitivity from chemicals found in lotions, perfumes, or even make-up; you can become more prone to it because of certain medications (more on this to come); or even if you suffer from an auto-immune disease (like Lupus).  And some unlucky souls simply inherit the condition.

If you suspect you may have photosensitivity, you can talk to your doctor.  They will likely discuss your medical history, your medications/supplements, and they may run a “light test” over your skin to check for a reaction.

Drugs That May Cause Photosensitivity

I’m going to start this section off with NOT ALL PEOPLE will have a photosensitive reaction, even if taking these medications.  And not everyone’s reactions will be the same.  Just my little disclaimer…

Many medications may increase your chances of developing photosensitivity.  Some examples of drugs that may cause photosensitivity include antibiotics, antidepressants, Benadryl, blood pressure medication, Celebrex, diuretics, Ibuprofen, and Naproxen.  You can review extensive lists of medications which may cause photosensitivity by clicking here and here and here or even here.  Some of these links even offer various photographs of what photosensitivity reactions look like.

When I started my Lupron Depot injections, my doctor advised me that I would have to wear long sleeves, giant hats, and lots of sunscreen.  He said that the medication did something to lower my body’s natural defenses against the sun.  I even found Norethindrone listed as a drug that may induce photosensitivity.  Sound familiar?  Norethindrone is the “Add Back” pill you’re encouraged to take while on Lupron Depot.  And there were plenty of sites that identified birth control medications (both estrogen, progestine, or progesterone) that may cause photosensitivity.  These included pills, IUDs, and subdermal implants.

Avoiding the Sun

I know we simply cannot avoid the sunshine.  It wouldn’t be good for us to become sheltered hermits, never leaving our shaded homes.  So, here are few tips and tricks to help avoid excessive exposure to the sun’s rays:

  • Stay out of the sun from 10:00am to 4:00pm.  This is when the sun’s rays are at their strongest.  Can’t avoid being outdoors?  Well, cover up, stay in the shade, and reapply sunscreen often.
  • Wear clothes that cover you up.  Tightly-woven threads, rather than flowing, sheer fabrics will protect you.  Some clothing manufactures design clothes specifically for “sun protection.”
  • Slather on the sunscreen.  At the bare minimum, use an SPF 15, although many people recommend SPF 30 or higher (I burn even if I’m using SPF 50…).  And remember: reapply every few hours; and by a few, I mean two.  Don’t like the gooey feeling of sunscreen between your fingers?  Try one of the spray sunscreens.  Make sure your sunscreen is labeled to block both UVA and UVB rayes.  And note: buy sunscreen lotion…not suntan lotion.  A tan will not offer as much protection as sunscreen.  And also be careful as some people are allergic to ingredients in certain sunscreens.
  • Wear sunglasses.  Don’t forget your eyes!  Your eyes can easily sunburn, which may eventually lead to the development of cataracts.  They may also feel itchy and dry after too much sun exposure.  This was particularly starting for me to read especially since I’ve recently been diagnosed with a cataract, albeit not severely problematic just yet.

What Did I Learn?

What I couldn’t find is the WHY behind the increase in burns or sensitivity.  It seems that it purely has to do with chemical reactions: how our body reacts to the chemicals, how those chemicals react to the sun, and how our bodies react to the sun.  A strange trifecta.

BUT, I do have a much higher resolve to become diligent in my sunscreen application (and re-application).  And I have a few goofy gigantic wide brim hats on the wall that I may start wearing more often.  *sigh*

Do I think my burn from this weekend was a photosensitive reaction?  Not really.  But who knows.  Maybe.  However, it did serve as a huge reminder to also put sunscreen on the backs of my hands…*whoops*  And it did prompt this blog, which taught me a lot about the different types of medications that may prompt a thing I didn’t know squat about.

What about you?

Resources:

Aesthetic Science Institute

American Skin Association

Health Blurbs

KevinMD

Lipincott Nursing Center (2009; Article) – Photosensitivity

Mayo Clinic

MedicineNet

Medline Plus

Medscape (2014; Article) – Drug-induced Photosensitivity

Mount Sinai Hospital

Pharmacy Mix

U.S. Department of Health and Human Services (1990; Report) – Medications that Increase Sensitivity to Light: A 1990 Listing

Wellness Pharmacy

Wisconsin Department of Health Services

~ 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