Recap: PCOS Workshop

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On December 8, 2016, we had the opportunity to reach out to our local Marine Corps community and teach a workshop about Polycystic Ovary Syndrome, or PCOS.

Background

A few months ago, I received an email from the Marine Corps Community Services Exceptional Family Member Program for the Marine Corps Recruitment Depot/Western Recruiting Region here in San Diego, California.  They wanted to know if Bloomin’ Uterus could coordinate a PCOS Workshop for their interested enrolled members, which included staff, service members, and/or family of service members.  Of course, I jumped at the chance!

I reached out to Dr. Mara Killen, a nurse practitioner at San Diego Women’s Health, my doctor’s office.  The staff at San Diego Women’s Health have been so incredibly helpful in my Endometriosis diagnosis, treatment, and journey and I’m so grateful that Dr. Killen agreed to speak at the PCOS presentation.

The Big Night

I arrived on site a few minutes early and caught a beautiful San Diego sunset from the parking lot – a perfect way to end my workday and begin the evening.  There were about 11 women in attendance, each of them either suffering from PCOS or knowing someone who does.  Dr. Killen’s presentation ran about 30 minutes and the remaining hour was an open-forum Q&A session.

A quick overview of what I learned last night:

What is PCOS

PCOS is an endocrine disorder and not much is known about it.  Like Endometriosis, the exact cause is unknown.  It effects 5-10% of women who are in the childbearing-age range, and as much as 50% of women with PCOS are undiagnosed.  And if you have PCOS, there could be a 50% chance of your daughter developing PCOS…Many women with PCOS also suffer from other conditions, such as Endometriosis or fibroids.

PCOS can drastically effect fertility, because it can cause very irregular periods.  Some women with PCOS only have their periods once every 2-3 months.  And, unfortunately, there is a higher risk of miscarriage and other pregnancy complications…

Women with PCOS may have a higher risk of developing other conditions in the long-run:  endometrial cancer, Diabetes, impaired glucose tolerance, hypertension, cardiovascular disease, ovarian cancer, depression, anxiety, and sleep apnea.  This isn’t a dooming realization – but if you do have PCOS, please talk to you doctor about steps you can take to strengthen your chances of not developing these conditions in the future.

Symptoms

Symptoms can include – and are very different for each sufferer – :

  • Irregular periods (long, heavy, absent, spaced out too far)
  • Fertility issues
  • Insulin resistance (which may lead to Diabetes)
  • Pain
  • Acne/skin issues
  • Increased hair growth
  • Weight gain
  • Fluid retention
  • Darkening of the skin
  • Moodiness

Diagnosis

If you think you may have PCOS, begin having conversations with your doctor.  It’s best if you have a running log of your periods ( symptoms, flow, start & end dates) to bring to your doctor to help move the diagnosis process along.

Unfortunately, there’s no single test to diagnose PCOS.  And various health organizations agree and disagree on the criteria to reach a PCOS diagnosis.  It’s not simply black and white…

A healthcare provider would likely begin with a detailed medical history (including any/all symptoms), followed by a physical examination, blood work, and a pelvic ultrasound.  The ultrasound may show an ovary looking a little bit like swiss cheese, or perhaps like it’s wearing a strand of pearls – these are follicles going craaazy.  Then again…the ultrasound may appear completely normal.  These listed procedures may rule out other conditions, ultimately leading to a potential PCOS diagnosis.

Treatment

Like Endometriosis, there is no cure.  Treatment depends on your health goals and where you ultimately want to be in your life. One way to express it: do you want kids?  Or you never want kids?  Either way, since there is no cure, treatment is about symptom suppression and making your life easier and healthier while you endure an incurable condition.

If you want children, you may be asked to make some lifestyle changes (diet and exercise), you may go on some medications to help improve fertility, and IVF/IUI is an option.

If you don’t want kids now, your doctor may still advise lifestyle changes (diet aaaand exercise), you may be prescribed birth control pills or some other form of hormonal contraception, or you may be prescribed Metformin.  These options act as symptom suppression, and the hopes to regulate your body’s imbalance/disruption.

Alternative therapies that may help reduce symptoms of PCOS include saw palmetto, chasteberry, and acupuncture.  One of the gals last night expressed some improvement while trying evening primrose.  As always, though, plleeeeaaaassssseee consult with your healthcare provider before beginning any alternative therapy.  Herbal supplements may have interactions with medications or even worsen symptoms.

Community

Thursday night really drove home, once again, the need for community support – having a place to voice your concerns, issues, and experiences with women who know precisely what you’re going through – IT IS SO HELPFUL!

Although I have been unable to locate an in-person support group for PCOS sufferers in San Diego, I found Soul Cysters – an online community of PCOS sufferers which includes a blog, shared stories, an online forum, suggestions for books, etc.  Hoping it may be useful to some PCOS gals.

 

Other Useful Links

American Society for Reproductive Medicine

American Congress of Obstetricians and Gynecologists

American Association of Clinical Endocrinologists

Womenshealth.gov

Clinicaltrials.gov

PCOS Awareness Association

What’s Next

We’ll be hosting an Endometriosis workshop for the Exceptional Family Member Program in February.  If you’re an active service member, or know someone who is, and are interested in attending, please reach out to us.  We’ll put you in touch with the organization.

If you are an active Marine, or the family member of one, and would like more information on the Exceptional Family Member Program or it’s upcoming events, please contact Christy Howland at christy.howland@usmc-mccs.org.

Thank you, Christy, Natalie, Elizabeth, and anyone else at the EFMP who played a role in last night’s event, and for creating this opportunity for women to come together over a shared illness.  And Dr. Killen: I am so grateful!  Thank you for sharing your knowledge with us last night, and bringing PCOS sufferers together.

And to all those who serve our country, thank you -from the bottom of my heart.

Ooh Rah!

Resources:

Dr. Mara Killen’s 12/8/16 PCOS Powerpoint presentation (please let me know if you’d like a copy)

Marine Corps Exceptional Family Member Program

~ 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

Feel Good Friday!

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Happppppy Friday!  We made it through yet another week.  2016 is nearing a close, already!!

Today’s quote is from French author, Jean-Baptiste Alphonse Karr, back in 1853.  The original French verse read:

De leur meilleur côté tâchons de voir les choses:
Vous vous plaignez de voir les rosiers épineux;
Moi je me réjouis et rends grâces aux dieux
Que les épines aient des roses.

Once translated into English:

Let us try to see things from their better side:
You complain about seeing thorny rose bushes;
Me, I rejoice and give thanks to the gods
That thorns have roses.

A little skew in perspective can be a glorious thing!  May you find your roses this weekend, and throughout next week.  ❤

~Lisa

 

An alternative to Lupron Depot, Letrozole, or Danazol?

Needle for Lupron Depot injection

The Journal of Restorative Medicine has published an article by Dr. Edward Lichen in their December 2016 compilation about non-surgical treatment of Endometriosis.  You can read the article, in it’s entirety, by clicking on the link under “Resources,” but I wanted to give a brief overview of my interpretation:

Causation:

  • Causation continues to be a mystery.  An overview of the nine theories of causation is given.
  • DNA research is ongoing.
  • Estrogen plays a role.  Many women with Endometriosis cannot opt for estrogen replacement therapy (even if post-menopausal) due to high recurrence rates of estrogen stimulation.
  • Xenoestrogens, dioxins, and endocrine disruptors increase inflammation and can cause Endometriosis to develop/recur.

Recurrence After Surgery:

  • There’s a 10% recurrence rate in less-severe Endometriosis.
  • There’s a 62% recurrence rate in women with severe Endometriosis who still have their ovaries.  Keeping the ovaries may lead to a 6 times greater risk of recurrent pain and an 8 times greater risk of recurrent surgery.
  • 20%-40% of women who have had surgery continue to suffer from residual pain.
  • 3.7% of women who undergo a hysterectomy and/or oophorectomy have have a recurrence of Endometriosis.

Drugs:

  • The ideal pharmaceutical treatment of Endometriosis has yet to be developed.
  • Lupron Depot, and other similar GnRH agonists, continue to remain the preferred method of symptom suppression, regardless of the side effects.
  • Aromatase inhibotors, such as Letrozole, also have similar side effects and symptom relief as Lupron Depot.
  • Danazol, a synthetic steroid, is the only alternative to GnRH agonists which offers similar symptom relief with fewer side effects.
  • The use of add-back estrogen sometimes offers little relief from the side effects.
  • Failure of these treatments often leads to surgery, hysterectomies, and oophorectomies.
  • A drug combination of anabolic steroids, Nandrolone and Stanozolol, shows similar symptom suppression without the side effects of Lupron Depot or Danazol.  A case study of one woman treating with both drugs has had symptom suppression and very few side effects over an eight-year period. (See US Doctor abstract under Resources).

What will you do with this new information?  I may talk to my doctor about the steroids combo if my pain returns full-force…but only after doing my own research about the side effects one can expect from that cocktail!

(Updated March 27, 2019)

Resources:

Journal of Restorative Medicine – (Article; Dec. 2016) Paradigm Shift: The Realization of New Medical Alternatives to Surgery for Endometriosis

US Doctor – (Poster; 2014) Novel Medical Endometriosis Protocol Offers Alternative to TAH BSO and Hemicolectomy in Confirmed Stage IV Disease

~ 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

Verify those medical bills!

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Just a quick note…

If you’re receiving medical bills, and have medical insurance, please make sure you contact your provider, billing agency, and insurance company before you pay it.

In the past three weeks, I’ve received three different bills from three different providers for three different dates of service…and it turns out they ALL were “sent in error.”

Bill No. 1:

An $800 bill from the pathologist from my September 21, 2016, surgery.  I called my insurance medical group to ask why they denied the $800 pathology bill.  They advised me they never received a bill from the pathologist and that I needed to call the billing agency directly.  So, I called the business that sent me the bill – turns out they billed a different insurance company – of course they denied paying the bill since I wasn’t one of their insureds.  So, the billing agency was going to resubmit the bill to my correct insurance company for payment.  I should not receive a further bill.

Bill No. 2:

The following week I received a $1,300 bill for an CT scan I had in July, stating the insurance company had denied my claim.  Oh man. Here we go again.  This time I checked online with my insurance company for the Estimate of Benefits (EOB) to see what portion of the CT scan they had paid and to confirm that $1,300 was, in fact, my share.  Guess what? There was no EOB listed for the July date of service, nor anything from the imaging facility.  So, I called the billing agency – and…they had sent the bill to CareFirst rather than Anthem Blue Cross. CareFirst?!?  Never heard of them. Again, the claim was justly denied since I’m not with CareFirst!  And, again, they were going to submit the $1,300 bill to Anthem Blue Cross for processing and payment.  I have yet to receive a further bill.

Bill No. 3:

Last night I came home to a bill from my gynecologist’s office for $47.  Not much…I could just pay a check for that.  BUT…I decided to check with my insurance company to see why I have to pay a portion.  So, there was an EOB for the September 13th, 2016, pre-op appointment, BUT it showed I had paid my entire share (a whopping $35 copay) when I was at the office.  So I called the billing agency and asked them why they showed I owe $47 when my EOB shows a zero balance on my end…he sat in silence for a minute as he reviewed the EOB they had on file and simply said, “Ma’am, I’m sorry, that bill was sent in error.”  He confirmed there was a zero balance and I needed to shred the bill.

So my message to you?  If you receive a bill for any medical visit and you have insurance, verify with the insurance company, the provider, and the billing agency that 1) the proper procedures were taken to secure payment and 2) the amount due is, in fact, due…

Otherwise, I would have paid $2,147 for no damn reason.  Yeah, I get it: human error does happen.  BUT C’MON!

 

 

Endometriosis Coloring Contest!

A reminder for anyone who would like to enter: our coloring contest is still going on! A chance to win every month! 🙂

Bloomin' Uterus

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THEY’RE HERE!  My wonderfully talented friend, Brandie Britt, designed three beautiful drawings for our Endo coloring contest!  (If you love the designs and want to help out a wonderful single mom, click here.  She and her son are near and dear to my heart…love you BB&kiddo).  The contest is open to EndoSisters worldwide!

Why are we having a coloring contest?  It’s simple!  I wanted a fun way for you and I to share a few things:

  • Where our Endometriosis is located in our bodies, or
  • How Endometriosis makes us feel, or
  • How we’d like to feel, or
  • Just have a bit of relaxing fun and a nice way to express ourselves and color, or
  • We can even bring the piece to our doctor appointments to express where our pain resides.
  • Be creative!!!  And share something together.

Don’t have Endo, but know someone who does?  Put your own interpretational spin on it for that person…

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Feel Good Fridays

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We made it through another week!  Well, two weeks, since I skipped last week due to the holidays!

Today’s quote is a simple one.  Something to take to heart and act upon.  Roy T. Bennett wrote,

“Be mindful. Be grateful. Be positive. Be true. Be kind.”

I’m going to print it out and tape it to several things to remind me…

Have a wonderful weekend.