A beautiful breakdown of treatment options for Endometriosis

A pile of open books
Photo by Amanda George from Pexels

A new study about Endometriosis is out regarding the modern treatment of the disease.  This includes birth control, progestins/anti-progestins, GnRH agonists, aromatase inhibitors, danazol, NSAIDs, surgery, and alternative treatments. It identifies the pros and cons of each.

The study closes with this beautiful phrase:

“The pharmaceutical or surgical treatment require an individual approach and deliberated informed consent of the patient. Pharmacological treatment is only symptomatic, not cytoreductive, therefore, to remove endometriosis lesions, surgery should be performed.”

It’s uplifting to see a study bluntly state that medications only treat the symptoms, NOT the disease itself, and the Endo lesions need to be removed.  AND that each case of Endometriosis must be reviewed on an individual level.

Deliberated informed consent of the patient” means (to me) as having a fully-informed patient who is made well-aware of the pros and cons of each choice, the side effects, risks, and potential outcomes; as well as having performed their own research before agreeing to the treatment.

Even with excision, though, there’s always a possibly of recurrence or new growths. And not all physicians are skilled enough to recognize each lesion. Not to mention many surgeons still practice ablation (the burning away of the lesion, leaving rooted tissue to regrow).

Welcome to an EndoWarrior’s very frustrating pursuit for competent medical care.

I encourage you to read the study for yourself and share it.

Resources:

Journal of Education, Health, and Sport (Article, 2019) – Available Treatment Methods for Endometriosis

Hormonal Therapy & Endo Workshop

320px-Opened_Oral_Birth_Control

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.

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

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

I need your help…

SOS

So this upcoming Thursday I have an appointment with my gyno/surgeon.  On January 15th, I will have my last Lupron Depot injection, and afterward will have a sit down with my physician to discuss what’s next.  I last met with him four months ago to discuss how I was feeling after my surgery, and what to expect in the future.

At that time, we discussed continuing the Lupron Depot injections for the full six-month course (which I’ve done) and after the completion of the injections, going onto a continuous birth control pill to help control the Endometriosis growth and pain.  He said the choice of B.C. was up to me, and after a lot of research and talking to friends who are nurses and attorneys (who have handled several mass tort cases against certain birth control pills), I’ve decided to try taking Lybrel (generic name Amethyst).  If B.C. doesn’t help with the pain, he ultimately feels a hysterectomy would be the best choice.  After all of the reading and research I’ve done, though, we all know it’s not a guarantee…

But what do I need from you?  I’m working on generating a list of questions to ask him during our appointment.  I know me, I’ll get so flabbergasted by all of the information that I’ll forget 50% of the questions I want to ask. So I plan on printing them out and walking in with a list.

If you can think of any additional questions you think I should ask, please feel free to drop me a comment below! And thank you!!!

Here’s the list of questions I’ve created so far:

  • 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?
  • I have about 38 Northindrone pills left (8 in current prescription; 30 for next month).  Shall I continue to take them each day until gone?
  • Will menopause be as bad as it was on Lupron Depot? Or was that magnified due to the chemical inducement?
  • When do I start birth control?
  • How long will I have to be on continuous birth control?
  • 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?
  • I’ve heard B.C. can cause cysts and/or even cancer.  Is that true?
  • I understand I will have breakthrough bleeding or spotting while on continuous B.C.  How bad will it be? Predictable?
  • Will Lybrel/Amethyst be bad for me because of my Gilbert’s Syndrome? What about the Endo on my liver?
  • If I don’t like Lybrel/Amethyst, when can we try something else?
  • If I can’t stand B.C. at all, what’s another option?
  • If I do need a hysterectomy, would it be partial, total, or radical? Remind him of my history of abnormal Paps.
  • If I do need a hysterectomy, can we do it without transvaginal mesh?  TVM has ongoing mass torts…
  • 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?
  • Assuming my next appointment will just be for my annual pap? Or will we schedule an ultrasound?
  • When will I know if we need a second excision surgery?
  • 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?

I’ll likely overwhelm my doctor with questions, but he has incredible patience, understanding, and has always listened to me.  I adore him and his staff and am looking forward to our meeting.

But again, if you have any suggestions for further questions, please drop a comment below.

Always yours, Lisa.