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.

Inflammation & Endo

justlogoinflam

The Oxford Dictionary defines inflammation as, “a localized physical condition in which part of the body becomes reddened, swollen, hot, and often painful, especially as a reaction to injury and infection.”

An article which is slated to be published in June 2016’s Frontiers in Bioscience reviews previous studies and literature which discuss how inflammation may cause Endometriosis to develop.  It states, “…inflammation is crucial in the pathogenesis of endometriosis…” Pathogenesis is the development of a disease; the cellular events and mechanisms that lead to a disease.

It also discusses how estrogen can affect inflammation which, in turn, affects Endometriosis.  It points out that anti-inflammatory medication and GnRH analog drugs (such as the highly-controversial Lupron Depot which depletes our estrogen production) have been found to reduce inflammation in Endometriosis patients.

Remember our blog about stress and Endometriosis?  This June 2016 study identifies that stress hormones may also play a role in creating inflammation and aggravating Endometriosis.

The authors theorize that inflammation may not only play a role in the development of Endometriosis, but that Endometriosis may contribute to pelvic inflammatory disease.  Imagine if you will a snowball effect : stress = inflammation + estrogen = Endometriosis + more inflammation = pelvic inflammatory disease or other illnesses.

A study published in Fertility & Sterility (Oct. 2017) also showed that inflammation may play a role in the development of Endometriosis, especially peritoneal cavity inflammation.  It concludes “therapeutic strategies focused on reducing peritoneal inflammation may be effective in limiting the development, progression or recurrence of endometriosis.”

I may not have understood a lot of the science mumbo-jumbo of the article, but I did certainly walk away with one thing : inflammation is noooo bueno and I will do anything I can do to naturally reduce my body’s inflammation.

Diet plays a huge role in reducing inflammation.  You have to decide what aids and hinders your body…not just do what “works for everyone else.”  You may have heard this all before, but :

  • Omega-3 fatty acids, like those found in salmon or tuna, are great at reducing inflammation.  Don’t like fish but take fish oil caplets?  Be careful; Omega-6 fatty acids, which may be found in fish oil supplements, may spurn inflammation rather than quell it.
  • Nuts are also a great sort of antioxidants and Omega-3s.  Try walnuts or almonds.
  • Whole grains contain a lot of fiber, which may decrease inflammation.
  • Eat your fruits & veggies.  Leafy greens, broccoli, tomatoes, beets, garlic, onions, berries, and cherries (the tart ones) all have amazing properties that combat inflammation.
  • Ginger and turmeric, two very ugly roots which are common spices, also have properties which are well-known to fight inflammation.  Cinnamon has also been found to be anti-inflammatory.
  • Don’t forget about herbs!  Rosemary, thyme, sage, and oregano are among the top 10 herbs and spices for fighting inflammation.
  • Extra virgin olive oil has been found to have similar anti-inflammatory properties to NSAIDs (i.e, Ibuprofen, Naproxen Sodium).

Dr. Andrew Weil has created a fun graphic known as the Anti-Inflammatory Food Pyramid.  If you like visual aids, click here.

There’s also a list of foods that promote inflammation, which you may want to avoid (if you’re able to).  These include dairy, soy, red meat, and foods that are high in saturated fat and sugar. Some people are affected by a gluten sensitivity or intolerance, which flare up their inflammation and symptoms.

Also, try to reduce your stress levels.  In any way : stretching, meditation, yoga, medication, rest, a different job, removing toxic people from your life, etc.

I repeat : do what feels good and works well for you.  Pay no mind to someone else if they say “this works,” but you’ve tried it and it doesn’t make you feel any better…or if it makes you feel worse.  You, and only you, really know your body.

*Updated September 12, 2017*

Resources:

Body Ecology10 Top Foods that Prevent Inflammation in Your Body

Center for Disease Control and Prevention – Pelvic Inflammatory Disease

Fertility & Sterility (Article; Oct. 2017) – Effect of Inflammatory Environment on Development of Endometriosis in Murine Model

Health.com14 Foods that Fight Inflammation

Mercola Top Anti-Inflammatory Food, Herbs, and Spices

U.S. National Library of Medicine (Abstract; June 2016) – Inflammation and Endometriosis; the full article is available for purchase from Frontiers in Bioscience

Women to WomenReducing Inflammation – The Natural Approach

A biiiig thank you to Gary for his help in securing the entire article for me to read.  I truly appreciate you.

~ 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

Share Your Story : Hailey

15016 Donaldson, Hailey-6-2

Hailey lives in Okalahoma.  When she was 22 years old, she received her Endometriosis diagnosis.  Now, over a decade later, she offers some stellar words of advice!!

Hailey’s Journey: I am going to call this the short version because we all know too well that listing every ounce of our story would be more like a novel than a blog post! Looking back I think it’s something I have had issues with for much much longer than my diagnosis.

I grew up in a house where “that time of the month” wasn’t really talked about. I have 2 older sisters so as long as the bathroom was stocked with tampons no one ever talked about it. I got my first migraine with my first period. Which was in 4th or 5th grade. They have always been miserably painful and heavy but being as they were always that way and I was to shy to ask any different. The older I got the worse I got, once I hit highschool we added cyst on top of everything else. I would miss school at least 4 or 5 days a month. I think it was my freshman year my mom finally took me to see a neurologist because all the ER would do was give me a double dose of morphine and send me on my way.

After several rounds of hormone injection and 3 days in ICU I was pain free for about 3 months. After that I struggled through different birth controls and medications until my early 20’s after a 2nd trimester miscarriage and inability to get pregnant again my OB finally agreed to do a scope. By this time he had me feeling all this was in my head and every woman was uncomfortable during her period. Ugh!

Tada he came straight out of the OR and told my husband I wasn’t losing it, he knew exactly what it was but would need a lab to confirm it. I was able to get 2 amazing boys out of this body before it decided to completely launch a war on me. I had done about 15-18 months of Lupron and when that only lasted about 2 months past my last injection I gave up on my Dr.

We relocated due to my husbands job and the amazing woman I found that was familiar with Endo. gave me one look and said- “please let me help you be pain free.” She listened and cared and for once didn’t make me feel crazy. I wanted a life back, actually I wanted a life better than the one I thought I had. I wanted to cuddle with something other than my heating pad. So in 2013 I gave up my war and got a hysterectomy at the age of 28. She was able to salvage one ovary for hormone production and she was also clear this was not a cure and it wasn’t 100% guarantee.

Today I live my life, I am able to do things I was never able to before. I can’t lie and say that when my friends announce they are pregnant that it doesn’t sting somewhere in my heart because it does. I would say I am 85% pain free, if I keep my diet and lifestyle in check I don’t have a lot of symptoms, but when I don’t I can tell and BOOM HELLO FLARE UP! It’s amazing how I can still swell up and cramp when I have no dang uterus. I will also say close friends cycles sometimes cause me some angst, I still breakout along with them. Geez someone definitely didn’t think it through when the female body was designed!

Words of Advice for Us:  I myself don’t have a daughter but I urge those who do, talk to them about their periods. Let them know what is normal and what is not. Bridge the gap window of 8-10 years to diagnose. No one should have to go through life feeling like they are crazy or it’s all in their head! It’s an uncomfortable conversation I am aware, I have boys and we have to talk about things I never wanted to know also!

The Last Word:  I don’t think there is a single right or wrong treatment answer for any of us. Every time I come in contact with an Endo-Sister and we swap battle stories they are so different even if the outcome is the same. Never give up finding your peace, you’re the only who knows what that looks like.

If you wish to contact Hailey, you can e-mail her here or follow her blog: https://nragefitness.wordpress.com/

I want to send a special Thank You out to Hailey for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Although I still have my uterus, I know that sting you feel when friends announce pregnancies.  I haven’t been able to conceive and it just creates a tender spot…ANYWAY, thank you SO much for sharing!!!  Yours, Lisa.

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And 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

Illustration of sunshine

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 on Medscape or Wisconsin Department of Health Sciences.  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?

(Updated March 25, 2019)

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

Truth, Theory, or Tall Tale?

crapsdiceroll

The treatment that worked to control my Endometriosis will work to control your Endometriosis.

TallTale

We’d all like to think that the medical community has such a hold on Endometriosis that they know which treatments will work for all sufferers.  But, unfortunately, it isn’t so.  It’s kind of a guessing game.

Lupron Depot worked for some women, yet doesn’t work at all for other women, AND can completely cause severe life-altering, permanent side effects for other women.

Birth control (pills, injections, IUD, etc.) may work for me, but it may not work for others.

NSAIDs may work for me, but guess what?  Not everyone can feel the benefits of these pills.

A change in diet may work for a lot of women in controlling or suppressing their symptoms, but not every woman.

A hysterectomy may work for some, but not all.

Having a child may work for some women, but not all.

Excision or ablation surgery may work to alleviate symptoms for many women, but not all.

Herbal supplements may help some women, but not all.

Eastern medicine, or other non-conventional treatment, may help a lot of women, but not all.

It’s a crapshoot.  Each one of us who suffers with Endometriosis must decide which course we will take.  Try numerous approaches.  Continue to fight until we (hopefully) find a course of action that helps alleviate the pain and other symptoms of this disease.

And yet, there are some women who have exhausted each of these remedies, but still continue to suffer.  Lost. Hopeless. In pain.

But the one thing we all have in common?  We all have each other.  Hang in there, Sisters.

Cataracts? …

CataractSo today I had my two-year eye exam.  You know: you go in ever two years to have your eyes checked and your eyeglass prescription updated.

About 8 years ago I learned that I have a benign cataract in my left eye, located just to the outside of my pupil.  My doctor back then told me it’s benign, it doesn’t grow, it just sits there a casts a shadow.  However, it’s not visible to me, and it will never affect my eye sight.  She surmised I was born with it : it may be due to my premature birth (I was 3 1/2 months early) and have likely had it my entire life.  Every two years since, I’d been told by the next doctor that I had a benign cataract on my left eye, and that it was just sitting there, doing nothing.

Two years ago, I went in for my usual eye exam and the presence of my benign cataract was confirmed, yet again.  There was no mention of any other formation of any other cataracts, or of any growth of the oldy-but-a-goody.  Life was good.

I’ve become accustomed to going in every 2 years only to be told I need a slightly stronger prescription.  They all blamed it on the fact that I sit at a computer all day and it just wears on your eyesight.  So wasn’t expecting anything different this time.  Yeah, my night vision has recently been getting blurrier and blurrier, the headlights and stop lights and brake lights casting more of a halo and glare than usual.  It’s been getting harder and harder to read the reflective road signs as they balloon out of proportion. Squinting more and moving closer and closer to the computer screen, embraced by it’s glow.

But today…today was different.  My doctor discovered the existence of a new, a second, cataract in my left eye.  One that IS affecting my vision.  One that has severely increased my prescription…and will continue to do so. One that wasn’t there two years ago.

Her first question, “Have you been taking Prednisone?”  Um, what? “No, but I’m now on birth control.”  Her retort was a simple nod of the head and a, “Mm-hmmm.”  I also let her know I had been on Lupron for six months, but she had no idea what that was.  I explained it shuts down your body’s estrogen production and casts you into chemical menopause.  Another thoughtful, “hmmm” escaped her lips.

Which caused me to go “hmmmm” and hit the books.

I am now at 20/30 vision.  She says once I hit 20/40 vision, I will be recommended for cataract surgery.  I’m sorry, what? Cataract surgery? I’m 36! I kind of squealed at her, “Aren’t I supposed to get these when I’m old and like 80?!?”  She agreed, but said sometimes these things develop.

**UPDATED October 10, 2017** I went to the eye doctor in August 2017 since my vision has been getting blurrier AND I was seeing double…the cataract has doubled in size, and my vision was 20/50.  I was referred to an ophthalmologist and had cataract surgery on October 2, 2017.  My left eye vision is now 20/10!!  AND (surprise!!!!) I have a cataract on my RIGHT eye!  Surgery is now scheduled for November 6, 2017.  Both my optometrist and ophthalmologist agreed it was likely my premature birth combined with the Lupron Depot that caused my early development of cataracts.

Drayton, Lisa (1)
Photo of my cataract, 8/1/17

Drayton, Lisa (2)
Photo of my cataract, 8/1/17

Drayton, Lisa (3)
Photo of my cataract, 8/1/17

What is a cataract?

Cataracts are a clouding of the lens of the eyeball.  It causes blurred vision and even blindness.  It occurs in older adults and more than half of Americans over the age of 80 will have cataracts or have had cataract surgery.  Many people begin to develop small cataracts in their 40s or 50s, but they do not become a problem for their vision until their 60s.

If you wear glasses and have a smudge on the lens, your vision through that lens is blurred . If you’re a photographer and likewise have a smudge on your lens, the photograph or image may be blurry or smudged.  Your lens of your eyeball works the same way; if there’s a cataract, your vision will appear blurred.

Cataracts may develop slowly over years, or be accelerated by many factors.  They may even develop over a few short months.  But what causes cataracts?  Could be Diabetes, could be smoking or drinking alcohol, could be sun exposure, could be diet, or it could be drugs.  It can even just be hereditary.  It could be.  However, other factors may come into play.

ADT and Cataracts?

ADT, also known as Androgen Deprivation Therapy is a hormone therapy used to treat prostate cancer.  Prostate cancer cells are fed by male hormones, especially testosterone, and ADT is meant to reduce those hormone levels.  The reduction of those levels slows or shrinks the growth of the prostate cancer cells.

One such drug used for Androgen Deprivation Therapy is leuprolide, aka Lupron.  The same Lupron that is used to treat Endometriosis in women.  And we share similar side effects : lack of libido, hot flashes, nigh sweats, increase or decrease of chest size (moobs & boobs), fatigue, bone loss, depression, etc.  Not an easy ride for either sex.

In 2007, Medical Principle and Practice published a study of a 52-year-old man who had developed a cataract in his right eye only 4 weeks after his ADT injection of Zoladex (which is also a GnRH that is used to treat Endometriosis).

In 2010, Fox News reported that prostate cancer treatments using ADT’s side effects such as weight gain, dyslipidemia, and insulin resistance may increase a man’s risk of developing cataracts.  In October 2010, the FDA pushed for stricter warnings on ADT drugs regarding the risks of developing heart disease or Diabetes. It appears due to the increased risk of developing Diabetes or obesity because of ADT, cataracts may also develop.  A study of 66,000 cancer patients occurred and half of them had received some sort of hormone therapy during the first six months of their cancer treatment.  Six months (sound familiar for you Lupron EndoSisters?).  For every 1,000 men, 111 new cataracts were diagnosed.  The authors of the study estimate that 5% of the cataract cases may be attributed to their Androgen Deprivation Therapy.  The study actually concluded that, “Gonadotropin-releasing hormone agonist use was associated with a modest increase in cataract incidence…Further study, preferably prospective in design, is needed to provide additional evidence to support or refute these findings.” Gonadotropin-releasing hormone agonist?  It’s also known as GnRH…which is what Lupron is…

Lupron and Cataracts?

Hands Off Our Ovaries has published (in .doc format) testimonials of women who have taken Lupron, and shared their horrific side effects and personal stories.  One woman, Wendy, was diagnosed with cataracts at the age of 38 after taking Lupron to help with her IVF treatments.  Her eye doctor asked if she ever took fertility drugs, and that she was only “one of many” who had since developed cataracts.  These were heard, among other topics, before the Subcommittee on Science, Technology, and Space  of the United States Senate 108th Congress in 2003.

Unfortunately, I cannot locate any studies or evidence specifically tying together (or even suspecting) Lupron Depot treatments (or any GnRH for that matter), women, and cataracts.  They just don’t exist.  Almost as if nobody has asked.  They’re looking into it with men…but not women.  Well, not yet.

Other Drugs and Cataracts?

NSAIDs (Naproxen, Ibuprofen) may also put you at a higher risk of developing cataracts.  The folks at Natural Eye Care believe, “NSAIDS (ie, aspirin, ibuprofin, advil, meclofen) are photosensitizing drugs (drugs that increase your sensitivity to the sun) that absorb light energy and undergo a photochemical reaction resulting in chemical modification of tissue. They can make you more susceptible to cataracts and macular degeneration” and “many birth control pills have make you more sensitivity to sunlight and can result in chemical modification of tissue. They can make you more susceptible to cataracts and macular degeneration.”

As usual, there’s a flip-side to these blogs, and today is no different.  NSAIDs are also the leading drug used to address discomfort and inflammation in patients who have just undergone a cataract surgery.  It may also help prevent post-operative complications and edemas.

Cataract Surgery

Surgery is the only effective way of dealing with cataracts.  The clouded lens is removed, and a clear implant is put in its place.  *Voila* clear vision is restored.  It’s usually an out-patient procedure, and may only take a few days to fully recover.  And 90% of people who undergo cataract surgery in the U.S. have  success rate and recoup their clear vision.

Advances in Cataract Surgeries and Permanent Treatments

The National Eye Institute has ongoing studies and research efforts for best how to prevent and treat cataracts.

There are also constantly new and better ways to have cataract surgery.  Like all other realms of medicine, it’s advancing : there are new types and materials of of lens implants and now there are laser procedures (rather than scalpel).

A Canadian physician, Dr. Garth Webb, has even created the “Ocumetic Bionic Lens,” which would replace your natural lenses with bionic ones, promising perfect vision.  The surgical procedure is similar to cataract surgery; however, clinical animal trials are still pending and it could be two years or longer before the Bionic Lens is available in Canada.  For more information on Dr. Webb’s invention, or to help people around the world regain their eyesight, he’s developed a foundation, Celebration of Sight, or you can also check out Ocumetrics Technology Corp.

What Now?

Now we wait.  My eye doctor wants me to pay careful and close attention to the vision in my left eye.  Test it from time to time by covering my right eye and gauging my cloudy, blurred vision.  If it gets worse, see her in a year.  Otherwise, I will see her two years from today for my next exam.  And we’ll see then how it’s doing.

And if birth control pills really do increase my risk of developing cataracts, and I’ve already developed one, do I need to stop taking the pill?  I seriously need to have a long talk with my physician…And if I stop the pill, what will happen to my Endo?  My periods? My pain?  And if I don’t stop the pill, will my cataract continue to grow and conquer the vision in my left eye?

The thought of ending the Magic Pill that keeps me pain-free at the thought of saving my vision is a terrifying Catch 22.  I can only wait to see (oh, there’s a pun) what the future holds.  Wait for my next physician appointment, wait for my next eye exam, and make a decision then.

PS –

I know better than to blame every little thing on my condition, my medications, and my medical decisions.  So perhaps the cataract did form purely because I’m getting older.  Maybe that’s true.  But maybe, just maybe, my body reacted to the medication that I put into it (years of Naproxen, Midol, and Ibuprofen; six months of Lupron; and now birth control pills), and maybe I am not alone in this journey.  Maybe there are other men and women who have developed cataracts after using Lupron Depot, birth control, ADT, or GnRHs.  If it’s a possibility, then it’s a something that needs to be further addressed and researched by our great and talented medical and scientific community.

Do you have any thoughts?

I would love to hear them.  Please.   For the first time in several months, I’m scared again (even though I know I won’t know didley-poop for the next two or more years).

*Updated 8/2/17*

Resources:

All About Vision.com

Associated Ophthalmologists

Cancer.Org : ADT

Cataract News Today

CT News : B.C. Doctor Says Perfect Vision Possible with Bionic Lens

DocShop.com

Drugs.com

EyeDocNews : Are Cataracts a Side Effect of Prostate Cancer Therapy Designed to Suppress Testosterone?

Fifth Avenue Eye Care and Surgery

Fox News : Prostate Cancer Treatment May be Tied to Cataracts

Fox News : New Cataract Surgery Eliminates Need for Glasses

Hands Off Our Ovaries

Medical Principles and Practice (2007: Article) Luteinizing Hormone-Releasing Hormone Analogue-Induced Cataract in a Patient with Prostate Cancer

National Institute of Health, National Eye Institute

Natural Eye Care

University of Rochester Medical Center

U.S. Government Publishing Office : (2013) Cloning: A Risk For Women?  Hearing before the Subcommittee on Science, Technology and Space of the Committee on Commerce, Science, and Transportation, United States Senate, 108th Congress

U.S. National Library of Medicine : (2010, Abstract) Androgen Deprivation Therapy and Cataract Incidence Among Elderly Prostate Cancer Patients in the United States

U.S. Food & Drug Administration : FDA Drug Safety Communication: Update to Ongoing Safety Review of GnRH Agonists and Notification to Manufacturers of GnRH Agonists to Add New Safety Information on Labeling Regarding Increased Risk of Diabetes and Certain Cardiovascular Diseases

~ 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.

Lupron Depot : My Experience

Syringe and needle for Lupron Depot injection

Many of you know I fondly refer to my Lupron Depot treatments as “Liquid Crazy injections.”  I’m happy to say that January 19, 2015, was my last Lupron Depot injection for my Endometriosis!  I had a total of six months treatment; 1 injection per month.  I was also taking the “Add Back” pill, Norethindrone, on a daily basis.

I figured I’d write about my side effects and symptoms, just in case anyone else was going to be starting or has started, the same injections. I’d love to compare notes and see how you’re feeling if you had Lupron.  Most of the side effects I experienced vanished in about 2 months…but I did suffer from insane night sweats for a year-and-a-half afterward!  And my fingernails have never recovered…I’m also wondering if you have any long-term side effects that you attribute to the Lupron Depot injections…

If you would like to read how others fared with Lupron Depot, please read the comments of Life After Lupron.  And a study published in the March 2018 edition of Journal of Pediatric & Adolescent Gynecology followed a study from 2008 to 2012 about the side effects of Lupron Depot with the Add Back Pill.  It found that:

  • 96% reported side effects during treatment
  • 80% reported the side effects lasted longer than 6 months after they discontinued treatment
  • 45% reported side effects they believed were irreversible, including “memory loss, insomnia, and hot flashes”
  • Despite the side effects, two-thirds of the patients said they’d recommend Lupron Depot others, as they felt it was the “most effective hormonal medication for treating Endometriosis pain.”

I won’t sugar coat it one bit.  I hated the entire treatment. But it did get a little bit easier as the months progressed.  Here we go:

Body Aches: During the first two months of treatment, there were several days where I could not get out of bed.  Even moving my fingers was agony.  Body and joint pain beyond explanation.  I missed time off work, nearly got written up for it, had to get a note from my doctor, and walked like I was an 80-year-old woman.  Thankfully, the aches didn’t stick around after the second month.  But man, they were unbearable.

Brittle nails: My nails have continuously been tearing, bending, breaking, chipping, and flaking since about my second treatment.  It’s just horrible.  I’m not sure that it’s related to the treatment, but prior to starting Lupron, my nails were strong and would only break during extreme mishaps.  Now it’s every day, at the slightest brush. I have to keep them trimmed down to nothing so they don’t snag on anything. Poor things. (2018:  my nails have never been the same.  They chip at the slightest offense, they break, they peel off, they bend backward…)

Depression: Now I’m not a person who suffers from depression. It’s just not in my nature.  But OH MY GOD…this medication put me into such a downward spiral funk, some days it was hard to remember none of this is my fault. And that there is light at the end of the tunnel. And that my friends and family do love me.  If you’re already susceptible to depression prior to this drug, please, PLEASE have a strong support network of friends and family prior to starting. It’s just vicious.   Luckily, this side effect faded quickly after treatments ended.

Fatigue & weakness: The fatigue and weakness has only started to get better this past month or so.  But there have been times where I needed multiple naps (2-4 hours long) every day.  I would become completely worn out just with one quick trip to the grocery store (my day would be ruined with naps and zombification) or even just my short commute from work would lay me out for the evening.  I couldn’t walk around my neighborhood without feeling like a zombie and slowing to a crawl.  Stairs and uphill slants were next to impossible. As an active and avid hiker, this has been miserable (may I just say : cabin fever!). My entire body was against me.  Near the end of my six-month treatment, I was able to maintain a good, strong pace around my neighborhood (which is barely 1.0 mile), with only minimal discomfort and loss of pace.  (2018: I’ve yet to regain my strength and endurance for long walks or hikes, but I think that’s what I get for not exercising since my Lupron days years…time to change that!)

Hair loss: I know we all lose hair, every day.  I’m used to having to clean out my hairbrush once a week.  I don’t freak out over the hair in my fingers after a nice shampoo in the shower.  BUT since the early months of starting Lupron, I’ve had to clean my brush EVERY day, pulling out a massive rat’s nest of hair!  It’s so full!  And the amount of hair in my fingers in the shower has doubled, sometimes tripled.  Even my hairdresser has noticed when I go in for a trim.  I don’t have any bald spots or anything, but it’s been such a massive difference!!  My hair has also lost it’s luster and has become stiff, dry, brittle, and prone to an incredible amount of split ends.  (2018: with proper care and TLC, my hair regained it’s luster and health)

Hot flashes: Thankfully I didn’t have too many of these.  I prepared for them, buying a small portable fan and a FrogTogg, which I kept in my purse regularly.  But, yes, I did have several.  And they were nauseating.  But they were done and over with quickly.  These were the least bothersome of my side effects.

Incontinence: Just call me “Pee Pants.”  It’s sort of a laughable joke now.  The last few months of treatment, the slightest sneeze, laugh, or cough would send a trickle down my leg and me running to the restroom.  But one evening while on the phone with my mother, disaster!  One small toot (yes, trying to keep this…civilized…I said, “toot”) and I flooded my couch cushion with urine.  I didn’t even know I had to pee…At first the warmth was confusing: was my gas super-heated?  But then the wet!  Not only did I run to the bathroom to grab a towel and soak up the couch, but I had to change my pants and hang my head in shame, although Mum, myself, and my boyfriend were also uproariously laughing. 😉  I did a bit of research and women going through menopause have weaker vaginal walls and bladder muscle control. Incontinence can be a regular occurrence for menopausal and post-menopausal woman. Oh joy.

Increased appetite: Ravenous! The whole time.  I eat numerous times a day.  Healthy, but numerous.  I have breakfast between 8:00 and 9:00, a mid-morning snack by 10:00, lunch between 11:30 and 12:00, mid-afternoon snack by 2:00, dinner between 4:30-5:00, followed by an evening snack.  Every day. It’s like a dance these days!  But I’ve put on my missing 10 pounds since surgery, which is good (I needed it).  And have managed to keep my weight at a healthy 140 pounds.  I’ve learned to eat healthier snacks (banana instead of cookies, salad instead of burgers, that sort of thing).  But, yes, ravenous the entire time I was on Lupron Depot.

Increased bust size: My boobs grew! MY BOOBS GREW!  My tiny little As are now a full B (small C, depending on the bra brand!).  My nurse has no idea if they’ll stay this new size once the medication clears my system.  But it’s a noticeable little difference, and I’m ecstatic over this side effect. 😉 (2018: My boobs never reverted back to their tiny original state!!  Best Side Effect…EVER!)

Increased thirst: Just like my appetite, I am insatiable when it comes to water nowadays!  Thirsty. So thirsty. I have to keep a full water bottle with me at all times! And refill it multiple times per day.  Constantly drinking water at work, and when I get home.  Almost always have  glass handy.  I don’t know why this is, but it is.  And, again, it’s a healthier kind of side effect, so I hope I continue this newfound habit long after the Lupon leaves my system. (2018: I am not as incredibly thirst as I was when I was on Lupron, but I still tend to drink more water than I did before the treatment.  That healthy habit hasn’t faded).

Lack of sex drive: Bah. Need I say more? My previously-epic libido is now non-existent. Gone. Fini. Come back to me, Libido. Come back….(2018:  After Lupron Depot, I went on a year of continuous birth control pills.  Libido: gone.  BUT…I went off the pill in Sept. 2016 and my libido has come roaring back to life.  Look out, hubby!)

Lack of monthly cycle: I haven’t had my period since September 25, 2014.  That’s the Lupron at work.  It’s been fantastic. No cramps. No bleeding. No bloating. No back pain.  Amazing!  I know I’ll be starting my period sometime soon (even though I’ll be starting birth control), so it will be an interesting experience.  I now have NO clue when I’ll be starting, what my new cycles will be like, how long they will last, or if they will be predictable.  We shall see!  (2018:  I was on the pill for a year.  During that time, I only had 4 periods.  But my Endo pain was nearly daily and came back with a vengeance.  After my 2nd laparoscopy (Sept 2016), I chose to get off of the pill.  Now my cycles do what they want, when they want, are as long or as short as they want, and hurt as bad as they want…)

Mood swings: I became a sobbing, blubbering, yelling, mad, insane, loveable, calm, snappy monster. Unpredictable. At the drop of a hat, I could sob. Or laugh. Or snuggle. Or claw your eyes out. May I just say that my boyfriend, family, and friends have all been incredibly patient and wonderful through this stupid process.

Night sweats: Now these are horrible. Almost nightly I wake up with the sheets drenched, my entire body covered in a sheen of cold sweat. Disgusting. There’s no dry spot on my side of the bed anymore. They’re awful! Hurry up and go away, Night Sweats! I don’t want you anymore…(2018: these lasted nearly a year and a half after I went off the pill.  I get the occassional sweaty-episode, but not nightly anymore).

Pain at injection site: So the day or so after the injection, my poor buttcheek is killing me. Sometimes that pain & discomfort radiates down my leg.  Bah. It’s just an annoyance, but daaaaamn my buttcheek!  Think they can make that needle any longer? 🙂

Pain during sex: I blame this on thinner vaginal walls and a lack of natural lube.  Even the slightest jolt is painful. So our sex life has changed a lot: slow pace and I’m on top most of the time (for control of depth).  It’s not enough pain to discourage sex (I truly enjoy the intimate connection sex brings to a relationship).  And we’ve had to incorporate the use of condoms (the doc says you can still get preggo on Lupron and they want to avoid that) and lube into our intimacy.  Neither of which I’m a fan of, but the lube is SOOOO necessary these days. (2018: sex can still be painful. We’ve learned to alter positions since some cause more pain, I use a different lube, and we still use condoms.  I don’t think this will ever go away…but then again, I do have two cervix, which may be a cause of my painful deep sex).

Susceptible to sunburns: Lots of sunscreen and big, silly, floppy hats.  Ladies (and men) on Lupron are far more susceptible to sunburns due to the lack of a hormone that protects skin.  That lack of protection could lead to nasty dark discolorations, too.

Vaginal dryness: I don’t make one little bit of natural lube anymore. I’m dry like a communion wafer, the Sahara Desert, and China Lake. I’ve become good friends with KY lube (nasty stuff).  I truly thought with the amount of goo my body regularly produced, that this side effect wouldn’t effect me.  Boy, was I wrong.  I’m all dried up. (2018: man oh man, was I glad when this one faded)

These are only the side effects I know about.  Lupron Depot is infamous for causing bone loss and some women also claim it has caused neurological issues.  For now, I am glad I went through with the treatments.  Anything I can do to thwart the growth of my Endometriosis!! I know Lupron doesn’t help some women with their Endo pain, or even stop their bleeding, but it did for me. Every woman will react differently to this medication.  I’m looking forward to reclaiming my life prior to this medication.  At $1,000 a pop (but thankfully my insurance covered most of it), I never want to have to endure this economically or physically. Ever again.

**Updated March 25, 2019**

Resources:

Journal of Pediatric & Adolescent Gynecology (2018 abstract) Long-Term Effects of Gonadotropin-Releasing Hormone Agonists and Add-Back in Adolescent Endometriosis

~ 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

A sit down with my Gyno

Kurtulus

So today was my last Liquid Crazy injection (yay!!!) and I also had a chance to sit down with my gynecologist/Endo surgeon to discuss future treatment and ask my giant list of questions.

I wanted to share the answers with you.  Please now that these are answers for me from my physician.  If you have similar questions, I encourage you to talk to your doctor. Your situation may be different than mine. Your doctor’s opinions may vary from mine.

But I do feel a lot better.  And since some of you helped me develop my list of questions, I wanted to share the answers with you guys!

  • How long until the Lupron Depot is out of my system? I know the medication is supposed to last one month, but when will the side effects go away?
    • It should be out of my system in 1 – 1.5 months. Maybe 2.
  • I have about 35 Northindrone pills left (5 in current prescription; 30 for next month).  Shall I continue to take them each day until gone?
    • As soon as I start taking birth control pills, stop taking the Norethindrone.
  • Will menopause be as bad as it was on Lupron Depot? Or was that magnified due to the chemical inducement?
    • Every woman is different, but natural menopause should not be as bad as it was on Lupron Depot.  This was a chemically-induced state. Natural menopause should be a little bit easier.  I let him know my Mum didn’t even know she was in menopause, her symptoms were so light. Hoping I get the same gift. Ha!
  • When do I start birth control?
    • As soon as I pick up the prescription.
  • How long will I have to be on continuous birth control?
    • I can stop taking birth control if my significant other and I decide to have a baby and can start trying to conceive.  Although raising a child is something I’d wanted for a very long time, I do not feel it is right for us now. So likely will not be trying.  However, I can continue to take birth control until I am 48-49 years old, about the time when menopause will begin to kick in.
  • I know that women over the age of 35 should not take B.C., or be monitored while taking it. What sort of regular monitoring will we need to do?
    • Being that I do not smoke and do not have any negative history of blood clots, I’ll be just fine.  If I’m concerned, I can bring it up during my annual exams.
  • I’ve heard B.C. can cause cysts and/or even cancer.  Is that true?
    • No.
  • I understand I will have breakthrough bleeding or spotting while on continuous B.C.  How bad will it be? Predictable?
    • It shouldn’t be too bad, but isn’t predictable.  I can expect to start my period after stopping the Norethindrone, and I can also expect to have my period every 3-4 months while on  birth control (this will be a continuous birth control, so less periods…yay!)
  • Will Lybrel/Amethyst be bad for me because of my Gilbert’s Syndrome? What about the Endo on my liver?
    • My gyno hadn’t heard of Lybrel or Amethyst and will do some research prior to writing the prescription.  He wants to make sure it will meet my Endo needs.  If not, he will prescribe his favorite low-estrogen continuous B.C. I let him know I didn’t want any of the birth controls like Yaz or Yasmin that have been involved in serious mass torts and class actions.  He agreed.  Per my gyno’s advice, I’ve posed the Gilbert’s Syndrome question to my Primary Care physician.  I expect the use of birth control will be just fine (I was on OrthoTri-Cyclen in my 20s) and should have an answer by the end of this week.
  • If I don’t like Lybrel/Amethyst, when can we try something else?
    • I didn’t ask this, especially since I’m not sure if he’ll prescribe it. Figured I’d cross that bridge if I came to it.
  • If I can’t stand B.C. at all, what’s another option?
    • I didn’t ask this. Figured I’d cross that bridge if I came to it.
  • If I do need a hysterectomy, would it be partial, total, or radical? Remind him of my history of abnormal Paps.
    • If the Lupron Depot and continuous birth control do not help my Endometriosis pain, we may want to consider a hysterectomy to help reduce my massive menstrual cramps.  IF we did choose this method, he would only remove my uterus first.  If symptom continued after, we would then remove my ovaries.  Both of us agreed that this is a last ditch effort and it’s not something I want at all. I understand that hysterectomies are not a cure for Endometriosis.
  • If I do need a hysterectomy, can we do it without transvaginal mesh?  TVM has ongoing mass torts…
    • He doesn’t use transvaginal mesh for hysterectomies.
  • If I do need a hysterectomy, will I have to go on Hormone Replacement Therapy?  If so, will the estrogen make the Endo grow back quickly?
    • I also didn’t ask this question.  Figured I’d ask it if we ever have the Hysterectomy sit-down Q&A.  Interestingly enough, in our conversation he brought up how some women use soy to help with their menopausal symptoms : it has been known to mimic estrogen and help relieve symptoms.
  • Assuming my next appointment will just be for my annual pap? Or will we schedule an ultrasound?
    • My next appointment is in April for my annual pap.  We can decide then if I need another ultrasound.
  • When will I know if we need a second excision surgery?
    • When my pain returns, we can talk about this.  Hoping it will be several years.
  • I’ve changed my diet hoping to help keep symptoms tame.  I’ve also started taking supplements (Omega-3s, Folic Acid, Calcium+Vitamin D, Milk Thistle Seed Extract).  Anything else I can do naturally to help?
    • My doctor has heard that people have altered their diets to reduce any hormonally-enhanced foods such as red meat and dairy.  To avoid that as much as possible may be way to avoid any additional estrogen-increasing contact which may further aggravate Endometriosis.  Also, he said to avoid soy products, as it has been known to mimic estrogen.

I absolutely appreciate and cherish my doctor for taking the time today to listen to all of my concerns, answer my questions, and to do research regarding my choice of birth control.  I also appreciate his staff for making this process less of a terrifying ordeal.  My nurse has been amazing and a joy to see each month for my injection, and the receptionist has always made me laugh.

Finding the right physician’s office is critical to maintaining a healthy attitude during scary moments of questions and ongoing treatments.  If any of my readers are in the San Diego area and are looking for a good Endo specialist/surgeon, I highly recommend Dr. Mel Kurtulus and his staff.

Yours, Lisa