Share Your Story : Lisa

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I realized that I’ve asked you to share your story, but haven’t actually put mine out there in one place (maybe a snippet here or there)….time to get everything out on paper so it leaves my head and heart (sorry it’s so loooooong…I couldn’t stop!).  I was diagnosed when I was 35 years old.  Eight months later, here I am trying to make a difference anywhere and any way that I can.

My Journey: I started my period when I was 12 or 13 years old.  I remember them hurting (but not as devastating as they have in my adult years), but figured it was normal.  I grew up hearing we were cursed because of Eve’s decision to sin, punished into pain and childbirth. I also heard that some of my family members had really painful periods. So again, it was normal. Classmates said they had cramps, too…so I figured mine were just normal. I became that girl in Junior High and High School that would walk around with a hoodie tied around her waist every month because I’d almost always overflow.  I had classmates come up to me during the really hard cramps, ask if I was okay, that I was white as a ghost and sweating…and I’d spend time curled up in the Nurse’s office after taking an Ibuprofen. But it was normal. Every girl went through this.  Right? My family physician had wanted me to go on birth control, but just to prevent “baby accidents” from happening, which I quickly dismissed since I had no intention of having sex. Little did I know BCP may have helped with the pain…

I became sexually active when I got married at 21 years old.  Now that I’d “done the deed,” I decided it was time I saw a gynecologist. My very first one. Man, was I excited.  I’d discussed my painful periods and lengthy cycles, but was told nothing was abnormal.   She put me on Ortho Tri Cyclen since my husband and I didn’t want children yet, in the hopes that it would regulate my cycles and pain. It did regulate the length of my cycles, but didn’t help with the pain much.  However, it turned me into a weight-gaining, moody, grumpy-guss. And I hated the pill.  Two years later, we decided we’d like to start our own little family, so I gladly got off the pill.

The cramps were worse than before.  Days of laying curled up in a ball on the bed, squeezing the hell out of my heating pad, no OTC pain meds or “specialty pills” like Midol helped. At all. I wasn’t about to exercise (“but it’s so good for your period cramps,” they say…you cannot get out of bed to exercise.) Didn’t want sex (even though everyone says it helps with your cramps…).  My bloating was so severe I’d be asked on several occasions when my baby was due. I had monthly diarrhea along with my period.  It was horrible.

Our medical insurance had changed, so I found a new gynecologist.  Same story : nothing abnormal about my periods.  Fast forward five years.  Still not pregnant.  Have done all of the homeopathic tricks in the book to conceive (including standing on my head after sex…ha!), test my fertility, monitor ovulation, etc.  Neither one of us wanted IVF, so we never considered going in for any fertility tests or treatments.  Every month I would start my period, every month I would be depressed at our failure.  We had friends and family who were having families of their own, I attended countless baby showers, offered way too many “congratulations.”  Each time, wanting to wallow in my own sadness over the fact that we have been unable to conceive. I had begun to resent those new mothers around me. At no fault of their own. I was still very happy for them…but still incredibly jealous, sad, and even angry. It was a dark and horrible downward spiral. We eventually stopped trying and hoped it would just happen on it’s own.

My gynecologist had retired, so I was assigned a new one at Kaiser.  At my next annual pap appointment, the new doctor agreed : nothing abnormal about my period pain or cycles.  She did discover however, that I had a septated vaginal canal.  A split down the center of my vagina, so that I have a right side and a left side.  My right side was normal leading straight to my cervix, but the left side just dead-ended at the back of my vaginal canal. She surmised that if we had been having sex on the left side and his semen was just hitting a blocked wall, making it impossible to conceive.  So we tried making sure he was on the right side during intercourse. Still no pregnancy.

Which was a good thing.  In 2009, we separated.  My marriage had ended. Add that to my growing emotional pit.

Since I had left my husband, I had to get my own health insurance which mean, you guessed it : a new gynecologist.  My first visit to this doctor was hilarious.  Within seconds of descending between the cleft of my thighs, he popped his head up in excitement, “You have two!!!!!”  I told him I knew I had two sides.  “No,” he said, “you have two cervix!”  WHAT?  How in the world did my three…THREE…prior gynecologists miss the fact that I have two fully-functioning cervix?  This doctor was so excited he had to invite a few staffmembers and specialists in to look for themselves (with my permission, of course).  So after the excitement died down, he told me that my right side was wider, but my cervical opening was tiny.  And my left side was much narrower, but my cervical opening was normal.  He figured we hadn’t been getting pregnant because of the tiny opening on the right.  He also said women with “this condition” have a very hard time naturally conceiving.  “Nearly impossible,” he said.  So I resigned myself to not having children.  He also believed my period pain and cycles were “normal.”

He was also the first gynecologist to prescribe me pain medication for my horrendous cramps.  Naproxen Sodium. And it was the only thing that worked. I took those pills every month until my excision surgery in 2014.  Five years of having to depend on pharmaceuticals to help alleviate my pain. Sometimes they didn’t work at all.  Most times I had nausea, exhaustion, and dizziness from those pills.  Sometimes I was afraid to drive.  And nearly fell down the stairs on more than one occasion.  Not an easy pill to stomach.

I had been routinely reprimanded at work for all of the time I had missed.  I called in sick for one or two days every month.  Sometimes three.  I had exhausted my sick time and had to start using vacation time.  I was told if I missed another day, “disciplinary action” would be taken.  So I would go to work in pure agony.  I had cancelled dates and appointments because of my pain. But again…”it was normal.” Fast forward to 2012 and I moved to San Diego.  New job, clean slate (new vacation and sick time), new insurance, and yep, a new gynecologist. I told him about my septated canal, my double cervix (which lead into one uterus), but I had been told for so long that my periods were normal that I didn’t bring it up.  He asked if I experienced any cramps and what the length of my cycles were, which I answered. No surprise. He advised me to continue to take my Naproxen Sodium as needed, but a hysterectomy may one day cure those cramps.

In 2013, he wanted an ultrasound because I had expressed some tenderness during my pap.  He discovered I had a small cyst on my right ovary.  When I went in for a follow-up ultrasound, I now had a cyst on my left ovary.  Every few months, we continued this little dance and watched the cysts grow, disappear, and reappear.  During all of this, my periods continued their harsh game, I continued to miss work at the new job (1-3 days a month), and it was mentioned in my review that I had been missing an awful lot of work once a month…Fuck.

Finally in 2014, an ultrasound showed a larger cyst on my left ovary.  So my doctor ordered an MRI to get a better look at it.  MRI results were read and they believed I had a dermoid cyst on my left ovary, which could potentially become cancerous.  It looked like I also had abnormally thick uterine lining, which may have explained the cramping and lengthy periods. Due to the scary cancer possibility, we decided to do a routine robotic laparoscopy and remove the cyst. While I was under, he was going to perform a D&C procedure, where they scoop out that excess lining in my uterus (gross!).

Surgery.  The last thing I remember was the anesthesiologist talking to me about my favorite hiking spots in San Diego (may I just say that’s the BEST way to fall asleep?).  My 1.5-hour surgery ended up being 4 hours.  Once he was inside, my gynecologist (he was also my surgeon! LOVE HIM!) was surprised to immediately notice the unmistakable signs of Endometriosis: implants and adhesions.  What was thought to be a dermoid cyst was an endometrioma, also known as a chocolate cyst.  My abdominal cavity was invaded by Endometriosis implants. My bladder was glued to my uterus by adhesions.  My bowel was also stuck to my uterus.  I had adhesions and implants on my liver and diaphragm, too.  It is my understanding that he couldn’t remove it from my liver and risk puncturing or damaging that organ, but he smeared some type of barrier medication to hopefully stop it from growing.  And he managed to save my ovaries.

I have since altered my diet to a more Endo-friendly diet.  I’ve also received six grueling months of Lupron Depot injections.  And I am now on a continuous birth control pill, called Amethyst. So far I am pain-free.  But…for now…pain free.  I’m terrified for the day if it returns…but at least I now have the love and support I need…

**Update October 31, 2016:  I had a second excision surgery on September 21, 2016.  You can read about that here.**

Discovering I have Endometriosis has changed my life.

I’m horrified and saddened that none of my prior gynecologists ever suggested or hinted that I may have this very common disease. Let alone noticed I had two sides…and two cervix! Only since 2012 have I started receiving pap smears on each cervix, which should have been done since my first pap.  I lost a little bit of faith in the medical community on that one.

Endometriosis is one of the leading causes of infertility.  All of that time trying, crying, and fretting while we tried to make a baby…wasted. But at least now I know why I couldn’t conceive.

But the BEST part? I have embraced this horrible disease and diagnosis, I’ve met beautiful and wonderfully passionate women who have the same disease, and we have come together for support and advocacy.  I have learned that my pain was never normal. That I am not alone.  And I have found a way to overcome the emotional shit-storm that came with the diagnosis.

I am stronger for it.

Words of Advice for Us: Having the love and support of your spouse, family, and friends is wonderful…but, I encourage you to find EndoSisters in your area, your community, your neck of the woods.  Few things compare to being able relate with someone face-to-face, to hug, laugh out loud, see the pain in their eyes, be held as you try not to cry, share what has helped with your pain, relate to their pain, and have those “You, too???” moments.  It is far better than any online support group and has made all of the difference in the world.  Find a way to seek these women out. Go meet them! Don’t wait for someone to start a group – start your own!

The Last Word: If you are feeling ugly, remember that you are still truly beautiful; inside and out.  If you have no one to talk to, email or call me.  You know your body like nobody else – if something doesn’t feel right, tell your doctor. Insist. You’re not crazy. And it’s not normal.

If you wish to contact me, you can email me at lisa@bloominuterus.com or follow my blog (which you’re reading right now…).

Enough about me.  I want to hear about you!

downloadAnd 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.

Feel Good Fridays!

We made it to another Friday!!

Today’s quote is by English poet, William Wordsworth:

“The best portion of a good man’s life, his little, nameless, unremembered acts of kindness and love.”

It’s the little things you do, not for glory, but for others that bring the greatest joy:  dropping change into a cup for a hungry Vet on the street, buying the coffee for the person in line behind you, joining a team to help clean up your local parks or neighborhoods, patiently waiting for someone to cross the street before you turn your car, passing on a smile or a nod to a stranger, volunteering at a nursing home or hospital.  The list is endless.

Each of these things, albeit small and “off-the-record” may be just what someone else needs at that moment.

Don’t do it for you…do it for someone else.  You may just find your day is equally touched by your small acts of kindness.

Happy Friday and weekend!

Yours, Lisa

Symptoms of a Normal Period

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So I’ve written a lot about abnormal periods caused by Endometriosis: extreme cramps, heavy bleeding, insane bloating, loooooong periods.  You’ve heard it all before.  But what constitutes a NORMAL period? I know they are supposed to hurt, you’re supposed to bleed, and you’re supposed to be uncomfortable. Just not this miserable. My Endo pain started in my teens. But I thought it was normal. So here I sit, curious : what is normal?

So, just for laughs, I figured I’d iron out the details of what a normal menstrual cycle is supposed to be like.  If anything, it may help me catch signs of my Endometriosis returning or worsening, or it may help you in some way…

Signs of a perfectly normal and healthy period:

  • You experience no cramps.
  • You experience some mild cramping a few days before you start that may last through the first or second day of your period.
  • You bleed for only 2-7 days.  Most women bleed 3-5 days.
  • You may pass small blood clots.
  • You start your period every 21-35 days. The average gal has her period about every 28 days.
  • You may be moody, have trouble sleeping, or crave certain foods.
  • You may experience abdominal bloating.
  • Your lower back and breasts may hurt.
  • You may experience more acne than usual.

As I was typing this, I had to laugh! I thought my periods were normal! Then I learned I have Endo, and now my (hilarious?) comparison:

  • I’ve never had a cramp-free period. Ever.
  • Mild cramping? Try the cramps that have you popping prescription pain medication and curled up in bed clutching your heating pad for the first 1-3 days. And you continue to pop those pills for the remainder of your period.
  • I normally bleed between 7-9 days, sometimes longer.
  • Not to be disgusting, but I passed some doozies of clots in my day.  When I was 20, I was so terrified I was dying that I scooped it out of the toilet bowl, tossed it into a jar, and made my way to the doctor.  I wasn’t sure if maybe I had miscarried and not known I was pregnant, or what. They assured me that the behemoth of a clot was normal and to be expected.  But…but…it was HUGE.  Big clots and my periods went hand in hand.
  • There was no predicting when my period would start…Sometimes I skipped a month. Sometimes I’d randomly start bleeding out of nowhere weeks early.  But most times, it was between 21-30 days.  So I guess that falls within the normal range.
  • You may be moody, have trouble sleeping, or crave certain foods. (Yeah, these were pretty much the same)
  • Define “bloating”… Many times, I’d be asked by strangers when my baby was due.  My pants literally had to be unbuttoned.  My poor taut skin ached.  I’ve since learned of the term “Endo Belly,” which is the overly-distended, bloated, and swollen tummies of us Endo sufferers.  Some believe we may retain more fluids than normal gals because our hormone levels are such much more out-of-whack and we’ve already got some severe internal inflammation going on.
  • Your lower back and breasts may hurt. (Yep. Par for the course)
  • You may experience more acne than usual. (That’s just a part of life…)

Granted, I’m on birth control pills now, my implants and adhesions were excised in June of 2014, and I went through six months of Lupron Depot injections to help delay their recurrence.  So I’m looking forward to my next cycle, just to see how truly different it is.  But at least now I have a basis for comparison!

How are YOUR periods?

Resources:

About.com

Cleveland Clinic

Cycle Harmony

Dr. Oz

Mayo Clinic

The Period Vitamin

~ 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!

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Have Endometriosis? Or are you the friend, spouse, or family member of someone who does?  Share your story here!  You are not alone! And your story helps myself and others embrace and realize that we are not alone. 🙂

Your experiences may help others cope with their situation.  Or it may heal a little bit of emotional pain and release an internal struggle.  Write it out. Share. Teach. Embrace your community.

Sound like something you’d like to do?  You can do so by clicking here, or by clicking on “Share Your Story” in the upper-right of this screen.  I will only publish what you allow me.  And if you’d like to submit a photograph to include, just email it to me with “Share your story picture” in the subject line.  My personal email address is lisa@bloominuterus.com.

Just want to read others’ stories?  Feel free to click here.

Looking forward to reading, and sharing, all about you.

Yours, Lisa

The Lion and the Mouse

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One of my childhood favorite Aesop’s Fables is the story of the lion and the mouse.  In short: a mouse wandering through the forest woke a sleeping lion, and was captured beneath his big paws.  Begging for his life, the mouse promised one day to help the lion.  The lion scoffed, “How can you help me?”  Regardless, the lion let him go.  A few days later, the lion was captured by hunters, trapped, upset and roaring.  The mouse scurried over to see what had happened to the lion and saw him all tied down and caught up in the hunter’s net.  So the mouse nibbled and chewed on the rope until it tore, allowing the lion to escape and live.

It has always reminded me that I can do anything. Being small doesn’t matter.  I can try. And I can do.

And that comes to light now more than ever.  Last night my personal efforts were hailed as a small “coffeehouse gathering,” which won’t get the attention, recognition, or numbers it would need to spread awareness.  It immediately made me feel insignificant, offended, crushed, brushed off…attacked.  But today I remembered this fable.  And I saw all that has been accomplished since my diagnosis.  My small efforts are making a big difference.

I do not have to be beneath the umbrella of an organization or corporate structure or pyramid scheme or group to bring awareness, raise funds, or influence lives.  I can do it. I don’t have to answer to rules or regulations.  All of the funds I raise go directly to a charity of my choosing.  There is no middle man.  No misinterpretation of my intentions.  No misappropriated funds.  My vision remains true to itself.  I remain true to myself.  And, regardless of it’s scale, it is making a difference, in my life, and the lives of those who choose to be a part of it.  And I’ve made several new, close friends and EndoSisters during this process.

Years ago, I was the Fundraiser Chair for a large nationwide event.  Profits raised from the event were going to a good cause. A great cause.  But what I learned after sitting in that chair for two years was that not all of the monies raised (registration fees or donations) went to the charity’s programs.  Some was paid out to vendors, security, the City for permits, rent for the venue, t-shirts, advertising (print, radio, and video), “appreciation awards”, etc.  And the out-of-pocket costs incurred by the Chair Members were also reimbursed out of the money raised.  It was terribly disheartening.

Some chapters of organizations are able to retain the funds they raised for their own efforts; and not giving it to the parent organization to appropriate the funds toward outreach, awareness, research, etc.  It remains in the pockets of the local chapter, for their local governing body to determine how best to interpret the Parent’s Mission Statement and intent. Be aware.

I’ve also since learned that the monies donated to charities may not be going toward outreach, awareness, or whatever you may have thought it was.  This is further muddied by organizations that house chapters, and with each chapter having it’s own governing board, the accountability may become fuzzy or gray.  Dozens of charities have been caught misappropriating funds or abusing their patrons.  Charity Watch is a group that puts these organizations on blast : naming names and placing the facts in black and white for us to read.  You can read some of their public shaming here.

Before you donate your time or money to any charity or charity event, please do your research.  I’ve done mine with the E.F.A. and support their efforts, and will continue to do so.  Make sure that your time, energy, and monies are being focused where you desire.  Do not feel bullied by the Lion.

And we can pretty much go online and follow the money trail, at least tax-wise, for charities.  Citizen Audit allows you to locate a charity, read up on their legal status, and even review their tax documents.  For example, in 2012 the E.F.A. filed theirs, which we can read here.  And you can always ask any charity for an accounting breakdown or even their financial statements in the hopes of seeing what programs, efforts, etc. past donations have gone to.

So I’ve rambled. Strayed from my original topic. Whoops. Back to it:

You can be a Mouse working for a Lion.  Just be sure that your time, effort, and money is going toward what you want it to.  And, please, do not let the delegation of others wear you down to the point where you lose your passion, are stressed, or overwhelmed.  Move on.

Or you can be a Mouse working with other Mice.

Or you can be a Mouse working with other Mice and with the Lion.

Or you can be a Mouse working alone.

Either way : Make a difference. Make waves. Cause ripples.  Bring change to this world. But do it for yourself in a way that will not compromise who you are, what you believe in, or what you stand for.

Small, seemingly insignificant “coffeehouse gatherings” can bring big change, awareness, and a sense of community. As can large corporate-sponsored events.  We can all make a difference, alone, with a larger group, or even with an association or corporation.  Do it in a way that’s best for you.

Yours, The Mouse

Feel Good Fridays!

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Good morning! It’s Friday! And that means, Feel Good Friday!

Today’s quote is by Swami Vivekananda, an Indian spiritual leader:

“A few heart-whole, sincere, and energetic men and women can do more in a year than a mob in a century.”

What can you do to help change the world? Even the smallest influence.  Just bringing a smile to a stranger’s face may alter the course of their day (and yours). Together we can make a difference, even the slightest difference.  In anything.

March is Endometriosis Awareness Month.  The whole month!  For us, EndoSisters!  What will you do to help spread awareness?  I plan on:

  • Wearing my Bloomin’ Uterus button every day (like I do already) (click here)
  • Participating in the social media Endo Challenge (click here)
  • Whenever I use a public bathroom, placing a Bloomin’ Uterus Endo Awareness card in the mirror (click here)
  • Wearing my yellow “Ask Me About Endo” ribbon provided by the Endometriosis Association (click here)
  • Wearing my Endometriosis Awareness t-shirt created by Lauren Siciliano (click here)
  • Wearing my Bloomin’ Uterus t-shirt created by yours truly (click here)
  • Walking on March 28th in San Diego with other women, friends, and family to raise awareness (click here)
  • Trying to start a San Diego area Endometriosis Support Group, to meet once a month

Together we can bring change.

Yours, Lisa

Free Yellow Ribbons for March!

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How do you feel about boasting to the world that you have Endometriosis?  Want to shout it from the rooftops?  Raise awareness any way you can?

Here’s your chance!

The Endometriosis Association is offering FREE “Ask Me About My Endo” yellow ribbons and encouraging everyone to wear them during March for Endometriosis Awareness Month.  If you’d like one, click here for more info on how to get one!  They’re also offering free Yellow Fliers you can pass out about Endometriosis.

Yours, Lisa