Miscellaneous

Is there a link between Endometriosis and sexual abuse?

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purple ribbon - child abuse

**UPDATE: 2/4/16 : Please read My Two Cents for my research results**

Time to get a bit personal with you…

I was molested by my grandfather for years as a young child.  My parents divorced when I was six.  I told my Mum when I was 8 and she literally uprooted our small family and moved us out of state, which caused a huge rift between my father’s side of the family and our family.  And I love her deeply for that.  I always will.

Last year Mum mentioned reading (or hearing about) a possible connection between childhood sexual abuse and Endometriosis.  I rolled my eyes, stated I didn’t want to give that man any additional power over my life, didn’t want to blame him for my disease, and dismissed it as crazy-talk. (I’m sorry, Mom…I know you’re reading this…).

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My first visit with the gastroenterologist

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illustration of human bowels

This is an old blog post (2015) and I have since had two bowel resections (2018 and 2020). I’ve also learned alllllll about Endometriosis on the bowels.

So, you may know that I have been having poopy issues.  Severe pain when going Number Two, cramping, constipation, diarrhea, etc.  

Anyway, two months after my initial consult with my PCP I finally saw the gastroenterologist today (the appointment process took that long…).  Went in not knowing what to expect…

But we just sat and talked for about 30 minutes.  We discussed my medical history, my Endometriosis, my diet change, supplements, my poopy symptoms, etc.  He is very familiar with Endometriosis.  We threw around Irritable Bowel Syndrome, Crohn’s Disease, and Ulcerative Colitis.  We talked about each, compared them to my symptoms, and even discussed what I do now to keep my symptoms “under control,”  as well as what the medical community could offer me for symptom control (which was prescription-strength identical to what I do now : laxatives, anti-diarrhea medication, cramping medication).

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Happy Blogiversary!

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cupcake with a lit candle and the text happy one year blogiversary

One year ago today, I started this little blog.  Just wanted to get my thoughts and feelings out, have a place to post my research and share fundraisers, and am amazed at what it’s blossomed into!

Thank you, Readers, for helping me make this site into a Home.  A place where people can come for help.  For support.  For each other.  And thank you for your Reader’s Choice topics.  Together, we continue to learn more about this disease and understand that we do not face this alone.

If there is every anything you’d like me to write about, please contact me or drop a comment below.  I am here for you.  Just as you are here for me.

Thank you for an incredible year!

Love, Lisa

UPDATE : Tampons Taboo?

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An unwrapped, unused tampon

If you recall, we wrote about tampons and the potential for chemicals and processing which may be harmful to people who use them.  Well, there’s been some recent developments.

Procter & Gamble (they make Tampax) and Kimberly-Clark (they make Kotex) have conceded to public pressure to disclose some ingredients of their feminine hygiene products.  You can read the online ingredients of each here:

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Why I support the Endometriosis Foundation of America

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Bloomin' Uterus logo surrounded by question marks

Based on yesterday’s post about the Endometriosis Foundation of America donations, some of you have asked what outreach programs the EFA offers.  What are they doing with the money they collect from donations?  How are they helping raise awareness for Endometriosis?  How are they helping with research?  How are they helping EndoSisters with their disease?

Well, ask and you shall receive!

With their permission, I’ve posted a brief summary of their programs and efforts:

Endometriosis

  • An often painful disease affecting multiple body systems
  • Occurs when tissue similar to the endometrium (lining of the uterus) is found in areas outside of the uterus
  • Approximately 1 out of every 10 people born with a uterus live with endometriosis

The ENdometriosis: Promoting Outreach and Wide Recognition (The ENPOWR) Project

  • The EFA’s school- and community-based education and outreach program, consisting of a 45-minute interactive discussion differentiated for specific audiences
  • Supported by significant grants from the New York State Senate and Department of Health ($650,000 over three years)
  • To date, the ENPOWR Project has made 310 presentations to sites throughout New York City, Long Island, Albany, Syracuse, Rochester, and Westchester, reaching over 7,400 adolescents
  • ENPOWR has a 91% return rate to sites

The ROSE (Research OutSmarts Endometriosis) Study

  • The first project in the United States to solely investigate endometrial tissue to the deepest genetic signature
  • The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with the disease
  • The EFA’s sponsorship of ROSE at the Feinstein Institute is one of our crowning achievements, and just the beginning of a long-term partnership in endometriosis research

MIT Center for Gynepathology Research

  • Established in December 2009 by Linda G. Griffith, the School of Engineering Teaching Innovation Professor of Biological and Mechanical Engineering and director of the Center
  • The country’s first research center in gynepathology
  • The center is currently working on creating a software application/mobile app to raise disease awareness and to gather better symptomatic data from patients, starting with their first doctor’s visit

Annual Medical Conference

  • An annual gathering of medical professionals to address the controversies surrounding endometriosis, improve treatment options, and to establish that the disease must become a research priority
  • For 3 years, the EFA hosted a Nurses Conference, a separate educational event for nursing professionals
  • Beginning in 2015, our Medical Conference will include all allied health professionals
  • Unable to attend (like myself)?  You can watch (for free!) videos of their past conferences.

Annual Patients’ Day

  • A multi-disciplinary collaboration for women and their loved ones to meet each other, share their journeys, and “ask the experts”
  • The Annual Patient’s Day usually falls within the timeframe of their medical conferences.  

Blossom Ball

  • The EFA’s annual gala and sole fundraising event to support efforts to increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research. Each year they host the Blossom Ball as the fundraiser.

The Endometriosis Foundation of America is doing a lot for our disease; not only searching for a cure, but educating women, their loved ones, nurses, and doctors alike.  I hope you can see why I choose to support their efforts through my Bloomin’ Uterus fundraising (the walk, the buttons, and the t-shirt sales).  If you would like to support the EFA, you can either do so through my fundraising efforts or directly through the EFA’s webpage.  Don’t want to support the EFA, but do want to support endometriosis research, education, and awareness?  There are so many organizations out there!  Do the research, find the one you feel best about, and give it a go! 🙂  There are no wrongs or rights here; only action.

One Year Ago…

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  • laparo
  • 10498287_10203016537706848_3186068430330802596_o

One year ago yesterday I underwent surgery to remove a cyst from my ovary: a simple, routine one-hour procedure. However, it turned into an exploratory, diagnostic, and excision surgery for a chronic, incurable disease. A parasitic, weed-like infestation created by my own body, blood, and tissue: Endometriosis. The surgery ended up taking four hours. Yes, four grueling hours of worry for my Mom and Jim as they sat in the waiting room, completely in the dark of why my surgery was taking so long.

I’d had no idea what Endo was. But it had something to do with the severe pain I’d felt almost my entire life since my teenaged years. The pain I had grown accustomed to being told “It’s normal,” by friends, family, and the medical community. My surgeon showed me pictures of the procedure, pointed out the unnatural dots that speckled my insides and the web-like scarring which bound organs together, which he had done his best to remove. And said it will come back…

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I have Endo : Can I donate my organs?

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Doctor carrying cooler labeled Human Organ for Transplant

One of the things I really enjoy about WordPress is that it allows you to see some search terms that brought people to the site.  This week, someone searched online for “can I donate my liver if I have Endometriosis on my liver?”  What a great question!  I also have Endometriosis on my liver (the doc couldn’t remove it due to the sensitive nature of the organ, but slapped some medication over it to hopefully slow it’s progression and ability to spread).  So let the research began.

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Chew, chew, chew

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Chattering-Teeth

I had  read that chewing your food thoroughly helps with the digestive process, makes you feel fuller, and triggers healthy enzymes and hormones.  Chewing at least 40 times before swallowing ensured *something*…but I forgot what.  I had also recently undergone a 7-day colon cleanse, and without going into the gory details saw a lot of things that surprised me.

So I think I’m going to try to make an effort to chew my food more thoroughly. Maybe not 40 times per mouthful, but definitely more than the half-chew-swallow routine I’ve become accustomed to.  But before I blindly decide to chomp more, I’d like to look into why it may be beneficial. And, of course, that means I’d like to share my findings with you.

What does any of this have to do with Endometriosis? Meh, probably nothing.  BUT…if it can help my body become an optimal working machine, well-greased, and healthy: you bet I’ll try chewing better!

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How to make a complaint against a bad doctor

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Time and time again, I hear about people who feel mistreated or neglected by their physicians.  Some of my EndoWarriors have even been verbally abused by their physicians and their staff.  But what can you, as a mistreated patient, do?  Do not simply put your head down and cry.  Do something about it!  Report it to someone of authority.  Here are a few tips on how best to do that:

You can ask to speak with the physician’s supervisor, which may be a higher-up physician in that practice, or even a Customer Service, Quality Control, or Patient Advocacy department.  Larger hospitals may have departments that deal with grievances.  Some physicians work under the umbrella of a medical group. Feel free to send a letter to the doctor and cc: his supervisor/medical group/grievance department, etc.  Give him/her the opportunity to respond to your letter.  Send that piece of correspondence by certified mail with a return receipt so you have confirmation that they’ve received it.

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