Share Your Story: Dannielle

Photo of Dannielle

Dannielle was diagnosed with PCOS when she was 16 and Endometriosis when she was 18 years old.  Now 19, she shares her Journey with us.  And she is a loud voice for self-advocacy!

Dannielle’s Journey:   Hello, my name’s Dannielle and honestly even though I’m young I kinda figured there had been something going on with my body.. in addition to endo, I was diagnosed with Polycystic Ovarian syndrome at 16 as well. The initial process was confusing before I had ever been diagnosed with either PCOS or endometriosis, because after seeing multiple medical professionals, some were saying it was PCOS, and some mentioned endo, only to later on figure out I have both diagnoses now. I still remember what the hardest part and can still be frustrating is having the doctors listen and feeling like your voice is being heard. At 14 is when I started thinking “something wasn’t right”, but was told “you’re too young to have any issues.” Which is entirely false. These things in addition to having crippling depression and anxiety, make me feel like I’m burdening others and should be embarrassed to tell others about my endo and PCOS, but I’ve realized that I shouldn’t be scared, that I– or any of us chose to have this diagnoses!

Words of Advice:  One of the biggest things I will always say is, Advocate. If you have a concern, or something you feel as if it isn’t being addressed, tell your doctor. If you don’t tell them how bad your pain or symptoms really are, they won’t help as effectively at least with my experience.

I want to send a special Thank You out to Dannielle for being brave enough to share her journey with us today!!  I know how scary, and liberating, it can be!   ❤ Yours, Lisa.

Paper with "tell your story" written on it

And if YOU would like to share your story, you can do so by clicking I would love to share it.  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.

Recap: PCOS Workshop

pcos-pic

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

Endo & Ovarian Cysts

Ovary

Many women with Endometriosis suffer from recurrent cysts on their ovaries.  But why? And what exactly is a cyst?

What is a cyst?

A cyst is an abnormal sac inside your body, completely enclosed, and it may contain liquid, gas, pus, fluids, semi-solid, or solid materials.  Imagine a blister, full of puss, tight and ready to be popped.  Now imagine that inside your body : a cyst is kind of like that.  However, if a cyst is full of puss, it is known as an abscess.  Cysts are typically non-cancerous, although some may lead to cancerous growths or tumors.  They are usually caused by an infection or clogging of the glands, although they may be caused by genetics, chronic inflammatory conditions, injury, cellular defects, or even parasites.

Cysts can grow and shrink, appear, disappear, and reappear.  They can appear anywhere inside your body and can range in size from microscopic to gigantic! The largest ovarian cyst on record was removed in 1905, weighing in at 328 pounds,; the surgery was performed by Dr. Spohn in Texas…everything really is bigger in Texas!!  Most cysts do not cause any pain; however, they may become inflamed, rupture, become infected, or can even displace internal organs, causing severe pain and discomfort.

There are literally hundreds of different types of cysts, including cystic acne, ovarian cysts, and ganglion cysts (just to name a few).

Signs & Symptoms

Many cysts go unnoticed because they do not cause any pain or side effects or may be found internally growing adjacent to organs with no physicals signs or symptoms of their presence. Some patients only become aware of a cyst when they have a noticeable lump beneath their skin.  Cysts found within the breasts may be felt as a lump during a routine breast examination.  Certain cysts that may form on the brain can cause headaches.

Diagnosis

Some cysts may be physically felt by palpation if they are close to the surface of the skin while others may only be diagnosed during imaging studies, such as an ultrasound, CT scan, or MRI.

Treatment

Treatment varies from cyst to cyst; patient to patient.  Most cysts do not require any treatment.  Large cysts; however, are routinely surgically removed.  Cysts that are fluid-filled may be drained via a long needle.  Fluids or tissues from the cysts will likely be biopsied to ensure there are no cancerous cells present.

Some cysts are caused by medical conditions (such as Polycystic Ovary Syndrome or Fibrocystic Breast Disease).  In those instances, the medical condition is treated in the hopes the cysts will be resolved.

Self-treatment (squeezing or popping) of cysts is not advised.  It could make matters worse…

Polycystic Ovary Syndrome (PCOS)

Polycystic Ovary Syndrome is an endocrine disease that effects women after puberty.  The ovaries produce more Androgen (aka the male hormone) than normal and it affects the release of eggs during ovulation.  This inbalance may also cause several follicles to remain inside the ovary, causing small cysts to develop.  Since the egg may not be able to properly develop and release, periods may be missed or are irregluar.

PCOS may cause irregular periods, hormonal inbalance, increased growth of facial hair, male pattern baldness, infertility, and cysts within one or both ovaries.  As many as 1 in 10 women suffers from PCOS, yet the cause of PCOS is unknown, but may be attributed to insulin levels, inflammation, or it may even be hereditary.  Birth control pills may be prescribed to women suffering from PCOS to regulate their periods and hormones.

Many women with Endometriosis have either been misdiagnosed in the past as having PCOS, or have been diagnosed with both PCOS and Endometriosis.  Unfortunately, there are no tests to diagnose a woman with PCOS; it’s a matter of exclusion of other diseases that leads to the diagnosis of PCOS, including a thorough family and medical history given to your physician.

Endometriosis & Cysts

60% of women with Endometriosis also suffer from ovarian cysts.  The link remains a mystery; however, may have something to do with ovary trying to contain the foreign object (or the Endo implant), causing a cyst to develop in or on the ovary. Women with Endometriosis often develop Chocolate cysts (aka Endometriomas), which get their name from their dark brown appearance: the endometrial blood which is shed during each period is trapped within the walls of the cyst.  These cysts may rupture on their own, or continue to grow and may restrict the functions of the ovaries or Fallopian tubes.

What Now?

Think you may have a cyst or PCOS? Talk to your physician…

Resources:

A history of Texas and Texans, by Frank White Johnson

Baltimore Sun

E Medicine Health

Endo Resolved

GynCancer.com

Mayo Clinic

Medical News Today

Medicine Net

Medline Plus

PCOS Foundation

U.S. National Library of Medicine

WebMD

WomensHealth.gov

~ 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