Share Your Story : Terry

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Today’s story is a bit different.  Meet, Terry, a 72-year-old man from California.  Terry was diagnosed with prostate cancer and was prescribed Lupron Depot as part of his treatment.  He would like to share his experience with us today, as well as pose a question to all of you:

*

I had prostate cancer and opted for the radiation (43 days) and Lupron Injections for two years – every six months. I was able to withstand the first two injections but the side effects were so bad, I told the doctor to discontinue.

I was due for my third injection on June 15th, 2016 – its now August 6th and I still have side effects. At the height of my pain, there were hot flashes, joint pain in hips, knees, feet, chills, fatigue, burning urine, loose bowels, and would get up 10 times at night. Some of the side effects have decreased, however, the fatigue is extreme. Still having to go to the bathroom all through the night and loose bowels.

The doctors never mentioned any of the less common side effects. Hopefully, it gets better?

*

If YOU would like to give Terry some encouragement and discuss your side effects and how long they took to dissipate (assuming they have), please email him here.  He would love some hope and encouragement.  And I know so many of you who offer hope and encouragement.

And if you would like to share your story, click here.

Questions re: Hormone Therapy & Endo

For those of you who have Endometriosis or know someone who does, Bloomin’ Uterus and The Pharmacists Clinic will be hosting a workshop about hormonal therapy and Endometriosis on August 31st. Even if you cannot attend the event : If you have questions about any hormonal therapy, whether it be birth control pills, IUDs, implants, Lupron Depot, Letrozole, Depo Provera, or others, please feel free to email Dr. Raffie at drrafie@pharmacistsclinic.com. She will do her best to address the question in the presentation. We’ll be taking detailed notes and will write a post-event summary, too. And if you’re in the San Diego area and are interested in attending the event, let me know. I can send you more info.

Hormonal Therapy & Endo Workshop

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August 31, 2016, from 6:00pm-7:00pm (you can arrive as early as 5:45pm)

Mission Valley Library; Seminar Room A; 2123 Fenton Pkwy, San Diego, CA 92108

Join us to discuss Endometriosis treatment options with clinical pharmacist, Dr. Sally Rafie. Our focus will be on hormonal therapy, such as hormonal birth control and other hormone regulators. We will review effectiveness, side effects, and common concerns.

The talk will be interactive and casual, so please send in your questions in advance (to drrafie@pharmacistsclinic.com) or bring them with you!

Speaker:

rafie
Dr. Sally Rafie, PharmD, BCPS
The Pharmacists Clinic
www.pharmacistsclinic.com
www.instagram.com/pharmclinic
www.facebook.com/pharmacistsclinic

IMPORTANT: seating is severely limited. As of this moment, there are only 9 seats available.  If you RSVP and need to cancel, please let me know so I may review the waiting list. You will receive a confirming message from me that you are on the seating list, as well as my telephone number.  You can either RSVP on our Facebook event page https://www.facebook.com/events/1022030877903809/ or by emailing me directly at lisa@bloominuterus.com.

We would like to thank Dr. Rafie and Sama for all of their help in coordinating this event.

Reader’s Choice : Endometriosis & Bipolar Disorder

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I was contacted by one of our readers who shall remain anonymous.  She suffers from Polycystic Ovary Syndrome (PCOS) and Bipolar Disorder.  Her OBGYN suspects she has Endometriosis; however, she had to return to college out-of-state and wasn’t able to have her diagnostic surgery.  In the meantime, her physician is encouraging her to remain on birth control pills to suppress the possible Endo symptoms.  Her symptoms are worsening…

She had heard that there may be a link between Endometriosis and Bipolar Disorder, and that it may be difficult to treat both at the same time due to complications with the medications interacting with each other, or even cancelling the medicinal effects of the pills.

She piqued my interest.  And the research begins!  Is there a link?  What about negative interactions with medication?  What can she do now?

If you’re reading this, you’re probably already familiar with Endometriosis.  If not, click here to read more about what it is and how to treat it.  But what is bipolar disorder?  I’ve heard of it, but haven’t actually asked what it is.

It’s considered a chronic illness which affects the brain and moods, often switching between extreme emotions : happy moods (manic) and incredibly depressed moods (depressive).  They don’t know what causes bipolar disorder, but it can run in families.  There are ongoing studies to greater understand and hopefully one day cure bipolar disorder (for a list of clinical trials, click here).  Treatments can include medications which help soothe and control moods, therapy, and/or electroconvulsive therapy.

There is; however, one very interesting theory by Dr. Jory Goodman that many people who have been diagnosed with Bipolar Disorder have been misdiagnosed and instead suffer from hormone imbalances, including PMS and PCOS.  I’m not saying this to lessen your bipolar diagnosis, if you are reading this and suffer from it.  I’m simply pointing out another person’s perspective.  As they say, “knowledge is power.”

There are several studies that find women with Endometriosis seem to be more prone to mood disorders.  In 2006, 16 women with Endometriosis (diagnosed via laparoscopy) were evaluated.  Seven of them were bipolar disorder mixed, 3 for bipolar disorder manic, and 2 suffered from major depression.  Of those women, 9 had a parent, sibling, or relative who also suffered from a severe mood disorder.

In 2011, the study was revisited, but this time compared 27 women with Endometriosis to 12 women who suffered from pelvic pain, but did not have Endometriosis.  It found that there was a “significantly greater proportion” of women with Endo and Bipolar Disorder than women without Endometriosis.  They suggest as part of managing Endometriosis, a psychiatric evaluation may be conducted to diagnose or rule out the comorbidity (existence of 2 chronic conditions at the same time) of Bipolar Disorder.

A review of 18 English studies in 2015 found that 56.4% of women with Endometriosis met the criteria of suffering from a psychiatric disorder.  It does not identify a cause/effect relationship, nor what the relation between the two conditions may be.  But it is a staggering figure.

Many women who suffer from Endo and Bipolar Disorder have issues balancing out their medications.   They cancel the effects of one another, or heighten the symptoms of the other disease.  Doses, or types, of medication may need to be adjusted to lessen any potential interactions.  It is a balance game; one which needs to be carefully monitored by your physician until a proper dosage (of either medication) can be found for you.

Are you worried about possible interactions between your Bipolar meds and Endo meds?  Please, talk to your doctor.  HelpGuide.com offers this amazing list of questions to ask your:

  • Are there any medical conditions that could be causing or exacerbating my mood swings?
  • What are the side effects and risks of the medication you are recommending?
  • When and how should I take this medication?
  • Are there any foods or other substances I will need to avoid?
  • How will this drug interact with my other prescriptions?
  • How long will I have to take this medication?
  • Will withdrawing from the drug be difficult if I decide to stop?
  • Will my symptoms return when I stop taking the medication?

A wonderful resource to check if your medications have interactions may be found at Drugs.com.  I ran a few common Bipolar meds with Endo meds to see if they had any interactions and/or lessen their effectiveness. I’ve listed a few of them below:

Amethyst (birth control pill) & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.

Amethyst (birth control pill) & Klonopin – may prolong the half-life of benzodiazepines in your system

Amethyst (birth control pill) & Lamotrigine – may reduce blood levels that effect lamotrigine.

Amethyst (birth control pill) & Topamax – can make birth control pills less effective.

Amethyst (birth control pill) & Xanax – may prolong the half-life of benzodiazepines in your system

Depo-Provera & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.

Depo-Provera & Lamotrigine – may reduce blood levels that effect lamotrigine.

Lupron Depot & Celexa – may increase the risk of irregular heart rhythm, which may be life threatening.

Lupron Depot & Lithium – may increase the risk of irregular heart rhythm, which may be life threatening.

Lupron Depot & Prozac – may increase the risk of irregular heart rhythm, which may be life threatening.

Lupron Depot & Seroquel – may increase the risk of irregular heart rhythm, which may be life threatening.

Lupron Depot & Trazodone – may increase the risk of irregular heart rhythm, which may be life threatening.

Lupron Depot & Venflaxine – may increase the risk of irregular heart rhythm, which may be life threatening.

Mirena (IUD) & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.

Mirena (IUD) & Lamotrigine – may reduce blood levels that effect lamotrigine.

Naproxen Sodium (NSAIDs) & Celexa – may increase the risk of bleeding.

Naproxen Sodium (NSAIDs) & Lithium – may increase blood levels, which effects the lithium.

Naproxen Sodium (NSAIDs) & Prozac – may increase the risk of bleeding.

Naproxen Sodium (NSAIDs) & Venflaxine – may increase the risk of bleeding.

Naproxen Sodium (NSAIDs) & Yasmin (birth control pill) – may increase potassium levels in the blood, which may lead to the development of hyperkalemia (elevated levels of potassium in the blood).

Yasmin (birth control pill) & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.

Yasmin (birth control pill) & Klonopin – may prolong the half-life of benzodiazepines in your system

Yasmin (birth control pill) & Lamotrigine – may reduce blood levels that effect lamotrigine.

Yasmin (birth control pill) & Naproxen Sodium (NSAIDs) – may increase potassium levels in the blood, which may lead to the development of hyperkalemia (elevated levels of potassium in the blood).

Yasmin (birth control pill) & Topamax – can make birth control pills less effective.

Yasmin (birth control pill) & Xanax – may prolong the half-life of benzodiazepines in your system

If you suffer from Endometriosis and Bipolar Disorder, know a few things :

  1. You are NOT alone.  Many women have been diagnosed with both conditions;
  2. Talk to your doctor about any potential interactions with treatments for both conditions;
  3. Hold onto hope.  There are ongoing studies and trials to help with Endometriosis and with Bipolar Disorder.

I hope I was able to answer some questions and offer some guidance today.  I would like to thank our reader for bringing this to my attention.  I never would have known otherwise…

 

 

 

Resources:

Bipolar Reddit – Bipolar & Endometriosis: Meds that Do Not Cancel One Another Out?

Depression and Bipolar Support Alliance – Research Studies : Bipolar Disorder

Depression Forums – Endometriosis & Bipolar 2

Disassociated Press – Remission?

Drugs.com – Drug Interaction Search

Examiner.com – (Dec. 2015, Article) Endometriosis Associated with Psychiatric Disorders, Say Researchers

HelpGuide.com – Bipolar Medicaiton Guide : Medications and Drugs for Bipolar Disorder Treatment

Journal of Obstetrics and Gynaecology Canada – (Nov. 2015, Article) A Systematic Review of the Association Between Psychiatric Disturbances and Endometriosis

National Institute of Mental Health – Bipolar Disorder

Psych Central – Endometriosis, Bipolar, and Birth Control

Psychology Today – (Oct. 2013, Article) Hormone Imbalance, Not Bipolar Disorder

The American Journal of Psychiatry – (April 2006, Abstract) Bipolar Mood Disorder and Endometriosis : Preliminary Findings

US National Library of Medicine – (Nov. 2011, Abstract) Revisiting the Association Between Endometriosis and Bipolar Disorder

~ 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

Changing birth control pills

pillSo, here’s the news…

Thanks ObamaCare.  Due to changes in insurance coverage and expenses, my employer has changed my insurance plan.  It’s the same carrier, but the plan has altered slightly.  What does that mean for my coverage?

Thankfully, I still can see my same physicians, although my physician co-pays have all increased by about $10.  I’ve no clue how any medical procedures will be affected financially.  BUT what I do know : my insurance will no longer cover my Amethyst birth control.  Sure, it’s free.  Sure there’s all this legislation and praise about free birth control…but my insurance refuses to provide Amethyst anymore.

Instead, I’m going on a generic of my generic (Amethyst is the generic version of Lybrel).  What’s the name of my new birth control?  It doesn’t really have a name.  Emblazoned on the prescription box is “Levonorgestrel and Ethinyl Estradiol 90 mcg/20 mcg tablets.” That’s the name of my new BC.  It’s a tongue twister, and it’s the same dosage of my Amethyst pills…but…

Not all generics are the same.  Fortune magazine states, “The [FDA’s] definition of bioequivalence is surprisingly broad: A generic’s maximum concentration of active ingredient in the blood must not fall more than 20% below or 25% above that of the brand name. This means a potential range of 45%, by that measure, among generics labeled as being the same.”

I haven’t had my period since September, 2014.  I have been taking Amethyst since January, 2015.  I haven’t spotted. I haven’t had any break-through bleeding.  And best of all I haven’t had any terrible Endo symptoms.  I’ve had a few flare-ups, but nothing unbearable.

So today I start my new pill.  Last night I said goodbye to my last Amethyst pill.  Tonight at 6:00 pm, I’ll swallow this new tiny pill…hoping that my body won’t have to adjust.  Hoping for no raging hormones, no spotting, no periods, but most importantly : no Endometriosis symptoms.  It’s been wonderful having 99.9% of my life back.  Will see how my body adjusts to this new medication.  Hoping for the best.

What about you? Have you switched pills and suffered?

Thanks for reading. Today I am just venting because I’m worried.  Worrying accomplishes nothing and I was hoping by writing it all out I’d feel better.  I think it’s helped already 😉

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

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

Life After Lupron

lupronSo once or twice a month, our little group of EndoSisters gets together for food, drinks, hugs, laughter, tears, and support.  Tonight was one such meeting.  And they’re always amazing, regardless of how many, or how few, people are able to attend.

One of my EndoSisters brought up an incredible question this evening, which inspires tonight’s blog:

Why isn’t there more info out there about life AFTER Lupron Depot?  There’s plenty out there about life before and during, but not after.

So, I’d like to create an ongoing and open “testimonial” area, so to speak, for women who have been on Lupron Depot to write about their lives now.  How long did it take to leave your system? Do you have any residual side effects? Has it changed your life for the better? The worse?  Did it make one lick of difference?  Would you ever go on it again?

Interested in submitting?  Submit a comment below and I’ll post your experiences on this page.  Be as detailed as you want.  Let it all out…there’s no judgment here.

Interested in reading other people’s experiences after Lupron?  Scroll down and read.

Feel free to share your experiences. We can only learn if we share.  I thought I was the only one who had tingly, sensitive skin until a brave EndoSister brought up here own continuous skin sensitivities.

It’s not the harmless medicine our physicians lead us to believe.

Endo & Liver Function

Anatomy_Abdomen_Tiesworks

Most of my blogs are started out of my own curiosity, and this one is no different.

I’ve read in numerous sources that gals with Endometriosis need to keep our livers in tip-top condition; well-greased and in proper working order.  I’ve seen a few Facebook posts from other EndoSisters that they have heightened levels of *something* when they have a liver panel blood test done, and they wonder if their Endometriosis may have something to do with that.  That struck a chord with me because I have Gilbert’s Syndrome, which is a liver disease diagnosed through heightened liver panel results.

Does my Endo affect my liver’s functions? And does that, in turn, add to or affect my Gilbert’s Syndrome? My liver blood panel test results?

I may not have found any definitive answers to my questions above, but I did learn A LOT about my liver, hormones, diet, and health. Intrigued? Read on, Dear Reader, read on.

What Does the Liver Do

The liver is the second largest organ in your body (weighing about 3 pounds) and is a big, ugly, rubbery reddish-brown organ that resides in the upper right cavity of your torso, and is protected by the rib cage.  Think of it as a filtration laboratory: the liver receives blood coming from our heart (rich in oxygen) and digestive tract (rich in whatever was absorbed from the foods or beverages we ingest) and even toxins that were absorbed through our skin; filters it (removing chemicals, bacteria, and toxins); and then sends the good & clean blood and nutrients back throughout your body.  It also helps metabolize medications and breaks down alcohol.

Our livers secrete bile (which helps break down fat) and delivers it to our intestines or stomach to help with digestion.  The liver also creates proteins that are vital for blood clotting and stores sugar, vitamins, and minerals. Is this all the liver does? NO! It has actually hundreds of different functions throughout the body. Huuuuundreds!

Endo & the Liver

Among its many other functions, the liver manufactures estrogen and testosterone. It is also responsible for maintaining and destroying excess hormones.  Research is ongoing into understanding the estrogen breakdown and distribution by the liver, and possible effects of estrogen-related symptoms and cancers.

Many physicians and women with Endometriosis believe there is a direct link to Endometriosis and estrogen/hormone balance.  If you are one of those Believers, you’ll want to take efforts to maintain a happy and healthy liver.  It’s been shown that a diet high in eating complex carbs in veggies and grains aids in the metabolism of estrogen and high in fiber intake increases the amount of excess estrogen secretion (aka, you poop it out).  Less stress on our livers to have to filter it out itself. There are also many women out there who believe it is not a hormone-driven condition, but one based off of many other factors.  So, this article may mean nothing to you.

Regardless of your thought process of hormone levels and Endometriosis, maintaining healthy liver function is key to keeping your entire body in tip-top condition. Which helps in the long run. With everything.

How to Help the Liver

Maintaining a healthy diet is critical to assisting your liver do it’s job better!  The American Liver Foundation suggests eating grains, proteins, dairy, fruit, vegetables, and good fats.  Also, eat plenty of fiber, which you can get from fruits, veggies, grains, breads, and cereals.   Of course, those of us following the EndoDiet will be avoiding dairy, soy, and gluten.  More on their dietary suggestions, including what to eat if you already have a liver disease, can be found by clicking here.  They also provide a free, 14-page brochure full of healthy recipes that aid in healthy liver function (click here).

Certain supplements are rumored to help with liver strengthening and cleansing : SAMe (aka Sam-E; S-adenosylmethionine), Milk Thistle, and Milk Thistle Seed Extract are some of the well-known ones.  Magnesium is said to help with estrogen detoxification.  Magnesium and calcium have been shown to decrease the symptoms of PMS.  All of which is related in one way or another to, you guessed it: the liver! Tumeric has also been shown to help increase the liver’s ability to detoxify certain estrogens (it’s also great for inflammation!).

How to Strain and Harm the Liver

Alcohol is the most famous way you can damage your liver.  “Pickle your liver,” is a common expression.  Alcohol is processed through the liver and can cause irreversible damage, leading to many different types of alcohol-related liver disease.  To read more about the different types of alcohol-related liver disease, and what can be done for each, click here.

Fatty foods and obesity can lead to non-alcoholic fatty liver disease.  Mind your diet. Exercise.  You only get one body…

If you’ve taken pain killers or headache medicine before, you may recall seeing the label about consulting with your physician regarding Acetaminophen.  And you also may recall about not taking more than the instructed dose, which also means not mixing medications : taking 2 Tylenol and an hour later 2 Midol or 1 Percocet.  Too much Acetaminophen can cause serious liver damage.  More info on Acetaminophen (courtesy of the American Liver Foundation) can be read by clicking here.  Acetaminophen may also interfere with the effectiveness of your birth control pills.  Read the fine print and talk to your doctor.

Gilbert’s Syndrome

When I was 14 years old, I was diagnosed with Gilbert’s Syndrome, I was told it was a rare condition that mostly affected men.  The doctor surmised I must have contracted it during a blood transfusion when I was born (I was 3.5 months premature and spent a long time in the hospital) and that I would not be able to ever donate my blood or organs.  However, I’ve since learned a few things:

1. Gilbert’s Syndrome is not as rare as I first suspected, and is actually considered common. 3-7% of the United States population has it, and is more common in men more than women.

2. Gilbert’s Syndrome is an inherited gene mutation, which means you’re born with it. One or both of my parents has this gene, but they may not know it.

3. The American Red Cross does accept blood donations from people with Gilbert’s Syndrome.

It’s relatively harmless.  And there is no treatment.  But just what does it do to me?

Every once in a while my skin and eyes will turn yellow…aka jaundiced. I can also suffer from extreme fatigue during these times.  The jaundice is caused by heightened levels of bilirubin in my system, because my liver is unable to process it out of my blood as quickly as it should…Bilirubin is created when old red blood cells break down, and is normally filtered through the liver.  Since my liver has a defective enzyme due to Gilbert’s Syndrome, it cannot breakdown the bilirubin levels as well as it should, so it continues to circulate through my system.  If the levels get too high, I go yellow, but it goes away on its own.  Due to the ineffective cleansing levels of my liver, medications may have increased side effects.

Certain circumstances can affect my G.S. : fasting, skipping meals, having a cold or flu, exercising too much, dehydration, being on my period, stress, or lack of sleep.

What Have I Learned Today

My original question was, “Does my Endo affect my liver’s functions? And does that, in turn, add to or affect my Gilbert’s Syndrome?”  It remains unanswered.  But what I did learn was that my liver’s health and efficiency may affect my Endometriosis…

I learned a lot about my Gilbert’s Syndrome that I didn’t already know.  I also learned that the liver does a whole lot more than I thought it did…a whole lot more. Since my diagnosis with Endometriosis, I’ve altered my diet habits, so I feel much better about that, and it seems to go with the American Liver Foundation’s dietary recommendations.  I’ve also drastically reduced the amount of alcohol I drink.  Which I probably should have done a decade ago…hindsight…

And I want to continue to strive to keep my liver strong and healthy.  Especially because my liver already functions at a lesser rate than the average person.

What did you learn?

Resources:

American Liver Foundation

American Red Cross

Connections

Drugs.com

Healing Edge

HPBlondon

Know Your Dose

Mayo Clinic

Meta E-Health

WebMD

~ 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