Endometriosis & Iron Levels

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(…no, not that kind of iron)

So, if you’re reading this you probably already know a little bit about Endometriosis.  One of those facts is that the Endometriosis implants/lesions shed (or bleed) inside the pelvic cavity (or wherever else the Endo is located).  Another fact is that women with Endometriosis tend to have much longer and heavier periods than women who do not suffer from Endo.  Recently at our support group meeting, the question of iron levels and anemia came up.   With all that bleeding, can we suffer from anemia or an iron deficiency?

And, again, the topic of iron levels and Endo came up at our Endometriosis Awareness & Support Walk : could the blood left in my pelvic region from shedding Endo have caused the “abnormally high” iron levels during a blood test?

Just what does Endometriosis and iron do to our bodies?  Anemia? An iron deficiency?  High levels of iron? What does iron do?  Why do we need it?  All of these questions have been swimming around in my head and its’ time to get them out…and you know what that means : RESEARCH!

I don’t know about you, but every time I swallow a multivitamin with iron in it, I’m throwing up within five minutes.  When I spoke with my primary care physician a few years ago about iron making me throw up, he asked me why I was taking it.  My response was simply, “Because I thought I had to…”  He clucked his tongue, shook his head, and told me he generally only advised pregnant women to take iron.  So, I steer clear of iron supplements or vitamins that contain any iron.

Anyway, on with the research!

 

Iron Deficiency:

How do you know if you have an iron deficiency?  Symptoms may include shortness of breath while exerting, fatigue, weakness, dizziness, an urge to eat ice, headaches, depression, temperature sensitivity, a sore tongue, restless leg syndrome, an increase of infections, poor muscle coordination, and a decreased mental function.

Many women who are anemic suffer from an iron deficiency (without iron, enough red blood cells cannot be created/maintained and less oxygen is delivered throughout the body).   This deficiency may be due to blood loss, a lack of red meat in a diet, their bodies may have trouble absorbing iron, they may not take enough vitamins, GI issues, or some diseases such as fibroids or cancer.

According to the Iron Disorders Institute, blood loss may be due to heavy menstruation, Endometriosis, and fibroids, which may lead to anemia.  An average healthy woman’s body increases iron absorption during her period to make up for the loss of blood during her cycle.  With Endo, we tend to have lengthy or heavy periods and the iron regulatory systems in our bodies may not be able to properly regulate the amount of blood (and iron) we are losing, leading to anemia.  With that being said; however, a 2006 study claims to debunk the theory that heavy periods lead to anemia.

You can also not get enough iron into your body through diet and supplements, which can lead to anemia.  The Center for Disease Control estimates that only one-fourth of women between 12-49 years old meet the daily recommendation of iron intake.  Red meat is supposedly the best food-source for iron, which, for many following the Endo diet, is out of the question.  If you must eat red meat, try to get the organic, grass-fed beef.  Also, eggs, beans, fish, nuts, dried fruits, whole grains, and dark leafy vegetables are rich in iron.  A word of warning, calcium may inhibit the absorption of iron.  A healthy digestive system and nutrient-rich diet is critical to ensure good iron absorption.

Looking to restore your iron levels if you’re anemic?  Adjust your diet or talk to your physician about iron supplements (taking it orally, injecting it, or infusions) or, in extreme cases, a blood transfusion may be necessary.

Too Much Iron:

Too much iron may be indicated by chronic fatigue, joint pain, abdominal pain, skin color changes, the loss of your period, loss of libido, and even hair loss.

Women who no longer have their periods are at risk for having too much iron in their systems.  (This is interesting to me since I’m on the pill and haven’t bled since Sept. 25, 2014).  Other causes of heightened levels of iron could include hereditary factors, genetic mutations in the cells, autoimmune diseases, or an iron overload due to blood transfusions, excessive alcohol, or too much iron supplementation in the diet.

Some of the risks of having too much iron include premature heart attack (especially of interest given recent studies that women with Endo are at a higher risk of heart disease), diabetes, liver disease, osteoarthritis, and hormonal imbalances.

How Can I Know My Iron Levels?

You an ask your physician to order a blood panel.  Give up a vial or two of blood, lab work is done, and *presto* you have a magical piece of paper that only medical professionals can understand.  You may prod your doctor asking to check your ferritin, transferrin, iron,  TIBC (total iron-binding capacity), CBC (complete blood count), and reticulocyte count.  You may even want him/her to order a check on your thyroid levels, as these may come into play.

Or you can contact and pay Health e-Iron to test you with their FeGGT LifePro test.  (I don’t know or endorse these guys…just found them through the Iron Disorders Institute webpage).

Iron & Endometriosis

A study published in 2002 found that the iron concentrations in the peritoneal fluid of the pelvic cavity of women with Endometriosis was higher than women without, and that those high concentrations remained throughout each stage of the disease.  It also found that the higher iron concentrations were found alongside the lesions, suggesting a link between the two.  The study surmised that “…cellular defenses might be overwhelmed owing to repeated bleeding of lesions…” and further research was needed.

A study in 2006 proved that iron deposits and iron overload are found within the pelvic cavity where Endometriosis is present and may contribute to the growth and spread of the disease.  Lab rats who were treated with an “iron chelator” known as Desferoxamine (aka DFO) had less iron deposits, less cell growth, and less iron concentrations!  An iron chelator is a drug which removes excess iron from the body.  The study concluded that iron may contribute to the growth of the disease and the use of an iron chelator may be beneficial to help control iron levels in women with Endometriosis.  A 2009 study confirmed the findings that iron chelators may prove beneficial in reducing iron overload and controlling inflammation.

In 2008 several scientists from the 2006 study published another.  This time it was to review and discuss the potential consequences of iron overload in women with Endometriosis.  Again, they conclude that treatment using an iron chelator with Endometriosis patients should be considered to help lessen the effects of iron overload.  Table 1 of the 2008 study identifies 21 prior studies which demonstrate iron overload in women with Endometriosis (click here).   The study suggests that women with Endometriosis are unable to stabilize the amounts of iron in their bodies as easily as women who do not suffer from Endo.  These excess iron levels may contribute to the development of Endometriosis, add to inflammation, or even aggravate symptoms.

Now what?

I found it interesting reading different articles, blogs, and studies today.  In one corner, you have the “eat iron-rich foods and take supplements to make up for what you lose during your period” campaign – and in the opposite corner, you have the “women with Endometriosis have an iron overload.”  And throw in the 2006 study that blood loss during a period doesn’t lead to anemia.  So just what to do?

I think Step One is talk to your physician (well, I plan to).  My next appointment with my Endo doc/gyno is on April 12, 2016 for my annual exam & check-up.  I also want to ask him his opinion regarding menstruation and anemia and/or an iron deficiency.  After that appointment, he always orders my blood work so it works out perfectly : I’m going to ask him if he can test my iron & Vitamin B levels.  Depending on those results, I’ll think about Step Two.

Possible Step Two(s):

a.  Increase the amount of iron-rich foods in my diet (if I’m iron deficient);

b.  Find a good iron supplement that’s right for my body (if I’m iron deficient);

c.  Talk about iron chelators (if I have too much iron);

d.  Do nothing different than what I have been doing (assuming my numbers are juuuust fine).

What are you going to do?  And what are your thoughts on iron, anemia, and Endometriosis?

(and thanks for reading!)

 

Resources:

American Journal of Human Biology – (2006; Article) Menstruation Does Not Cause Anemia: Endometrial Thickness Correlates Positively with Erythrocyte Count and Hemoglobin Concentration in Premenopausal Women

American Red CrossIron Information for All Donors

Endometriosis.org Overload of Iron in the Pelvic Cavity May Promote Proliferation of Endometriosis Lesions’ Epithelial Cells

Every Day Health

Fertility & Sterility – (Oct. 2002, Article) Iron Overload in the Peritoneal Cavity of Women with Pelvic Endometriosis

Health e-Iron, LLC

Human Reproduction– (July 2006, Article) Iron Overload Enhances Epithelial Cells in Endometriotic Lesions Induced in a Murine Model

Iron Disorders InstituteIron Deficiency Anemia

Iron Disorders Institute – Iron Out-of-Balance in Women

Iron Disorders InstituteIron Overload

Lab Tests Online

Livestrong Iron-Rich Foods for Iron-Deficiency and Anemia

Mary Vance NC

Molecular Human Reproduction – (May 2008, Article) Potential Involvement of Iron in the Pathogenesis of Peritoneal Endometriosis

National Heart, Lung, and Blood Institute

NHS.uk

Scientific American – (July 2011, Article) Iron-Deficiency is Not Something You Get Just for Being a Lady

SelfGrowth.com

The Curriculum in Iron Metabolism & Related DisordersIron Chelation Basics

US National Library of Medicine – (Sept. 2006, Abstract) Menstruation Does Not Cause Anemia: Endometrial Thickness Correlates Positively with Erythrocyte Count and Hemoglobin Concentration in Premenopausal Women

US National Library of Medicine – (Dec. 2009, Article) Synthetic and Natural Iron Chelators: Therapeutic Potential and Clinical Use

US National Library of Medicine – (Jan. 2009, Abstract) The Role of Iron in the Pathogenesis of Endometriosis

~ 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

Our 2nd Annual Endo Awareness Walk

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Our group photo, by Richard Reyes

Well, March 26th has come and gone!  On that day, we had our 2nd Annual Bloomin’ Uterus Endometriosis Awareness & Support Walk in San Diego.

If you’d like to read about our first walk in 2015, click here.

Reading this and wondering exactly what Endometriosis is?  Read all about it by clicking here.

This year we had nearly 50 walkers (47 to be precise)! And of that, 17 of us suffer from Endometriosis.  The numbers were amazing (more than half of those who registered were able to attend)!  And we made quite the yellow wave walking around Lake Miramar!! Not only did I have the pleasure of meeting so many new EndoSisters and their loved ones…and watching them meet each other, but we had the honor of telling people about Endometriosis!  Some of our attendees even traveled from Riverside (100 miles), Redlands (110 miles), Lake Elsinore (75 miles), Escondido (30 miles), Bakersfield (231 miles), and Taft (238 miles)!  And my Mum made the drive from Tombstone, AZ (478 miles), to walk with us.  Thank you guys!  I know it was quite a hump for just a walk…but it meant so much to me.  And I know it meant so much to you.

On multiple occasions as we walked around the lake, I was stopped and asked, “What’s with all the yellow?” or “What are you guys walking for?”  And we’d have the opportunity to talk about Endometriosis, what it is, and what we were out doing.  After our walk, several of our walkers said it happened to them, too! *yay* Support and awareness!!!

A five mile walk…a few hours together…footin’ it around a gorgeous lake.  I cannot express what a beautiful day it was…not only were we blessed with beautiful sunny skies, but I mean emotionally beautiful.  I may be sore now, but every step, every blister, every aching muscle was worth it.  And it was perfect.  And I am so proud of everyone who walked, as I know that you’re proud you made the trek, too.

Knowing you’re not alone, and showing other EndoSisters that they’re not alone…that’s what the day was all about.  And thanking our families, friends, and loved ones for their support; so important!  We could not continue our days without you.

Others have expressed the same sentiment : for many, it was their first Endo event.  And many were touched by our numbers, by hugging women and talking to them about their experiences.  Talking with someone who knows precisely what they’re going through.  Truly understanding that they are not alone.

As of today (March 29, 2015), we raised $2,037.35 for the Endometriosis Foundation of America!  That’s over $1,000 over our goal!  Thank you everyone who donated!  For transparency’s sake : $1,966.00 (gofundme.com donations, button sales, skully sales), $28.00  (goodsearch.com/goodshop.com), and $43.35 from Bloomin’ Uterus t-shirt sales (teespring.com), totaling $2,037.35 sent directly to the Endometriosis Foundation of America!  And that’s not counting the $111 raised by the San Diego Sisters of Perpetual Indulgence! Thank you, Sisters (they also had several members walk with us).  Such joy!  I also have a lot of miles to still walk…haaaha.  I pledged to walk one mile for every $10 donated. I’ve got another 156 miles to walk and I will!

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2017 plans are already underway!  If you’re interested in joining us, save the date : March 25, 2017.  I do believe if we’re as big, or bigger, for 2017 we’ve outgrown the parking lot at Lake Miramar and I’m already talking to other parks and venues.  Stay tuned for more info!  I’ve also update our Gofundme campaign goal to $5,000.  Let’s see if we can raise at least $1,280 for 2017!

If you’re in the San Diego area, we meet once a month or so for our support group.  You can find more info by clicking here.

And if you’re interested in starting support groups or even a walk in YOUR area, know that YOU CAN!  Want to know how?  Get in touch with me 😉 I’d be happy to point you in a direction.  Together, we can do great things!

All photographs used with permission.  If you’d like to see all of the pictures by Richard Reyes, click here.

 

 

Share Your Story : Kelly

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Kelly was 15 years old when she was diagnosed with Endometriosis.  Nearly a decade later, she shares her journey with us.

Kelly’s Journey: Hi! My name is Kelly; I was diagnosed with endometriosis while I was in high school at the age of 15. I had problems with my period but was too scared to tell my mom because I didn’t want to go to the gynecologist. Needless to say, she eventually found out and I was forced to go. My period would last a month at a time, then a week free, then it would be back. While this was happening, I was losing tons of blood so I would see my primary doctor to be put on iron pills because they didn’t know how or why I was losing so much blood. Like I said my mom found out and I was put on birth control which regulated my period.

Along with regulating my period I started to have cyst grow and lucky for me instead of going away on their own they ruptured (Hope you’re sensing sarcasm). One night a rupturing cyst woke me up from my sleep, screaming, crying I headed to the ER. Where they told me it was a cyst and gave me a GYN, who didn’t know what he was doing, went to another, still was unsure of what was wrong with me and why I had so much pain. Finally; I was recommended to an infertility specialist who diagnosed me with endometriosis and told me a laparoscopy was my only option then because he didn’t know how much endo was built up. I was terrified being 16 (at this time after seeing many many doctors all time did was pass so I turned 16), but I went for it. I went home the same day and 2 days later I was so completely happy because my pain went away.

5 years pass, but during the end of the fifth year I started to have pain again, it was slowly creeping back in. Which was weird because for those 5 years I was on birth control continuously so I wouldn’t get my period, yet every break through bleed, or times where I felt like I should get my period, I didn’t realize endometrial implants were making their way back onto my surrounding organs. I started to feel cyst start growing and rupturing again. So it was time to see my doctor who at first wanted me to try a new birth control, some injection that I really didn’t want to do, but it didn’t work anyway. So I told him I wanted the surgery, round two of a laparoscopy. Hopeful that in 2 days I would be back to normal, it was the complete opposite. My pain did not go away whatsoever despite clearing out the endometriosis.

Unfortunately, that doctor was no help to me anymore, not giving me any recommendations so after a year I went and found another infertility specialist at one of the best hospitals in my city. I met with her in hopes of doing another surgery because I knew something was wrong. The doctor did not want to perform or diagnose me with anything new until I had my appointment with a urologist which I had the following day of meeting her. The next day I was diagnosed with Interstitial Cystitis and Pelvic Floor Dysfunction. What? Being that I had that diagnoses my new GYN and Urologist wanted me to go to physical therapy for my IC and pelvic floor issues. I went for months before pain started to interfere with my physical therapy.

I then went to the GYN asking again to please try this surgery, I know you may think it is a waste because just a year prior I had one done with no luck. (With trying to schedule the surgery I had a surprise gallbladder attack and had to have that removed and recover until I could have another surgery). Third times a charm? I went to have my third laparoscopy and it was successful, I didn’t have much pain after the surgery. All of the pain I did have came from my IC and pelvic floor dysfunction. So I was done with my GYN, finally, onto my urologist. I was on every medication possible to help my bladder but unfortunately that did not help whatsoever. We first tried a hydro-distention, aka just seeing how much fluid my bladder could hold and it is much less than a normal bladder can. They were hoping the stretching of my bladder muscles would help out but unfortunately it did not.

So here is where I had a trial for a pacemaker for my bladder. A pacemaker for my bladder you say? Yep, it was absolutely bizarre but took my pain away completely. I had the trial on for a week and if I had seen results I would have one implanted into me. With so much success I was so looking forward to having this surgery and hoping it was my final surgery for 2016. I had this surgery on 3/7, while I’m writing this, it’s 20 days later. 20 days too long, I am having many problems with it. It’s not comfortable for me, I’ve been having cyst grow and rupture again which is a whole other issue. But unfortunately the pacemaker is not what I expected it to be like. I return to see the doctor on 4/7, though I’ve seen her many times within this 20-day time frame, for looks of infection and pain in general. I’m hoping for the best, but I almost would rather take it out and deal with the pain somehow.

My story is not like many others, though there may be a lot of women or girls out there who can completely relate and it would mean so much to talk with you guys because no one close to me understands and its difficult when you feel alone in such a long process. You can also read about my long process/journey on my blog. I’ve only started blogging last year, I’m trying to keep my blog very diverse in the sense that it isn’t all about medical issues, but the majority so far seems to be.

If you read this, thank you. Writing is such a nice release and this helped a bit.

Words of Advice:  Speak up to your doctors! Sometimes it’s a little bit scary because they are generally the people who call the shots, but after asking my doctor to please perform surgery on me, she was extremely happy she listened. She said “I’m happy that I listen to my patients and in this case it worked out for the best”.

If you’d like to email Kelly, you can do so kelcarblog@gmail.com or follow her blog at http://keepingupwithkelcar.wordpress.com/

I want to send a special Thank You out to Kelly for being brave enough to share her personal story with us today.  You are a beautiful, brave, and strong woman.  Always wonderful to see EndoSisters doing all they can to reach out to others and help!  Keep up the great work, Kelly!❤

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And 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.

Endometriosis, Pelvic Pain & Pelvic Floor Therapy Workshop

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Attention San Diego-based EndoSisters and sufferers of pelvic pain!  At the suggestion of one of our EndoSisters from our support group, we reached out to Comprehensive Therapy Services, Inc. for their help.  They’ve agreed to host a presentation on Endometriosis, pelvic pain, and pelvic floor therapy on Wednesday, April 20, 2016, at 7:00pm.  It’s free!  Interested? What the heck am I talking about? Read on…

Do you have pain in your pelvic region?  Does sex hurt?  Does it hurt to walk or sit?

The pelvic floor is made up of multiple layers of muscles attaching from the pubic bone to the sides of the pelvis and all the way to the coccyx.  Pelvic floor muscles may become impaired or irritated and inflamed for a variety of reasons causing muscle spasm or weakness.  These changes may cause pain in the pelvic region. Pain is not normal.

Many women suffering with Endometriosis complain of pelvic pain, although the pain may have many different causes. Your doctor may recommend pelvic floor therapy. But what is it?  Kira Shurtz of Comprehensive Therapy Services, Inc. will explain to us what physical therapy treatment options you may expect. She will provide education on how physical therapists address myofascial restrictions, trigger point within the muscles, and the benefits of visceral manipulation.  She will also discuss dietary changes, stress management, stretching, home exercise, lifestyle changes. These changes and therapies will help to relieve your pelvic pain and Endometriosis symptoms.  There will be a Q&A session at the end of the presentation, as well as a tour of the clinic.

If you wish to join us, please RSVP by sending an email to Lisa Drayton at lisa@bloominuterus.com or RSVPing on our Facebook page here.  The event will take place on Wednesday, April 20, 2016, at 7:00 p.m. at Comprehensive Therapy Services, Inc., located at 5677 Oberlin Drive, Suite 106; San Diego, CA  92121.

Parking and attendance are free. It is expected that it will run about an hour long.

Kira Shurtz joined CTS in 2013. She graduated from Brigham Young University in 2009 with a B.S. in Biology and then attended The University of Pittsburgh to obtain her Doctor of Physical Therapy Degree in 2013. Since joining CTS she has focused her practice on pelvic floor physical therapy, pre and post natal care, general orthopedics and dance rehabilitation. She has most recently continued her education with classes focusing on finding the pelvic pain driver, sexual medicine and dysfunction, and visceral manipulation. Her passion lays in helping her patients return to the activities they love most. She believes in giving her patients the tools they need to heal, grow, and increase their fitness levels. She is deeply enthusiastic about fitness and can be found teaching group fitness classes when she is not at CTS. Since moving to California she has also found a new love of hiking and rock climbing.

Take Control of your Endometriosis

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So a book has been returned to our Library!

Have you read Take Control of your Endometriosis by Henrietta Norton?  Published in 2012, the summary follows:

As a sufferer of endometriosis and a qualified nutritional therapist, Henrietta Norton provides both a personal and professional look at how women can take control of their endometriosis and relieve their symptoms naturally. She shows how making informed choices can improve wellbeing through diet and lifestyle changes and can personally vouch for the positive difference these alterations can make to the health of endometriosis sufferers. With an explanation of endometriosis and its symptoms, a guide to what foods to eat and which to ditch, plus recipes to make the dietary changes easy to follow, this an authoritative and accessible guide to empower women to manage their endometriosis.

If you’d like to check this book out of our library, please click here or follow the Library link in the upper-right of this webpage.  We also have several other books that are available for you to borrow!  Sorry, I’ve limited postage/delivery to the United States (postal rates are too expensive for international delivery).

Padma Lakshmi spoke at the San Diego Women’s Week Inspirational Conference

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Last Friday, March 18, 2016, was the San Diego Women’s Week Inspiration Conference held at Harrah’s Casino in Valley Center, California.  I coughed up the $170 to go because I really wanted to see one of the scheduled speakers, Padma Lakshmi.  Don’t know who Padma is? Not only is she a model and TV personality, but she’s the co-founder of the Endometriosis Foundation of America.  And a little bit of my Hero.

She has recently written a new book Love, Loss & What We Ate: A Memoir, and was on her book tour around the west coast at the time of the conference.  So, I knew I’d pick up a copy of her book on Friday.  I expected she was going to talk a lot about her book, and maybe touch up a little bit about Endometriosis and how it has affected her life and career.

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Boy, was I surprised!  She spoke for 20 minutes to the crowd of over 500 women (and a handful of men).  And the entire 20 minutes she spoke about Endometriosis!  Not only of her journey, but how it affects so many of us, the signs and symptoms, and the need for greater advocacy and research!  She encouraged women to self-advocate, to push hard in their lives and to push for the proper medical care.  It was amazing!  Blew my mind!  And she is such an incredible speaker!! She then followed her presentation with a short Q&A session about her book.

I couldn’t contain myself and yelled out, “Thank you, Padma!!!” prior to the standing ovation and applause. And she thanked me back! Now I meant it. Not only thank you for attending, but thank you for sharing your story, for advocating for women with Endometriosis, for educating others that don’t have it (or suspect they have it), for constantly pushing for new research, for hosting medical conferences, and for all that you are doing! Thank you for using your outreach and influence.

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Padma’s presentation also started a conversation at my table.  The woman to my left, Sue, has family members that suffer from Endometriosis.  And the woman to my right, Lucille, had heard about it and asked all kinds of questions about the illness.

We are not crazy. It’s not all in our heads. This is an incurable disease. And with the help of people like Padma Lakshmi and organizations such as The Endometriosis Foundation of America, we have hope.

With that being said, there were so many speakers on Friday!  And I scribbled down a few of my favorite quotes from the various speakers and want to share them with you:

“Reignite your passion and purpose in what you do.” ~Elizabeth McCormick, former Black Hawk Helicopter Pilot and Chief Warrant Officer 2 for the US Army.

“Find the thing that you want to be good at, even if someone wasn’t paying you.” Padma Lakshmi, host of Top Chef and co-founder of The Endometriosis Foundation of America.

“There is no white horse, you have to rescue yourself.” ~Jennifer Farnham, Vice President and Operations Manager of Gilbane Building Company’s Southern California Business Unit.

“Character is developed, not inherited.” ~Frank Shankwitz, co-founder of Make A Wish Foundation.

“Measure your worth in this world not how others treat you, but how you can carry yourself and how you treat others.” ~Naomi Tutu, daughter of Archbishop Desmond Tutu

“This is not the end of the story. Look at what you dream for…about..and prepare yourself for that world. Live that life.” ~Naomi Tutu

“It’s not just okay to dream. It’s imperative to dream.” ~Naomi Tutu

“The difference between imperfect and I’m Perfect is an apostrophe. Change your perspective.” ~Kim Coles, actress & comedian

“Go on that quest for your own Secret Sauce. Embrace your individuality.” ~Kim Coles

*

I’d like to thank the North San Diego Business Chamber for hosting the event and Xavier Bailey Photography for giving us permission to use his beautiful images that he took at the conference for today’s blog.

 

Share Your Story : Kelly

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Kelly was 23 years old when she was diagnosed with Endometriosis.  Two years later and living in England, she’s started her own blog to help spread awareness about this illness.  But today Kelly tells us her story…

Kelly’s Journey: My name is Kelly and I’m a 25 year old woman who has been living with endometriosis since roughly 2003. I was diagnosed in January 2015 after laparoscopic surgery at the age of 23, fifteen days before I turned 24 years old. I have endo on my bladder, bowels and peritoneum (as far as I know – it has been over a year since I had a laparoscopy). I had never heard of endometriosis before August 2014 so I hope that I can help women who are newly diagnosed, women who are struggling with any aspect of ‘endo life’, partners of women who have endo, and also to raise awareness for those who have never heard of this condition that we wrestle with one a daily basis.

Words of Advice:  You are not alone. We are all Endo Warriors and we will beat this!

The Last Word:  I love the Bloomin’ Uterus blog 🙂 I had never read another endo-related blog before I started my own and I love how many I have found already.

If you’d like to email Kelly, you can do so kellytorr@hotmail.com or follow her blog at http://lifewithendosite.wordpress.com/

I want to send a special Thank You out to Kelly for being brave enough to share her personal story with us today.  You are a beautiful, brave, and strong woman.  I was excited to stumble upon your blog the other day!  Always wonderful to see EndoSisters doing all they can to reach out to others and help!  Keep up the great work, Kelly! ❤

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And 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.

Endo Book Available in Library!

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100 Questions & Answers about Endometriosis by Dr. David Redwine has been returned to our library and is available for your reading pleasure!

Published in 2009; summary:  EMPOWER YOURSELF! It is estimated that between 10 and 20 percent of American women of childbearing age have endometriosis. About 5.5 million women in the U.S. and Canada are diagnosed with the disease each year. Whether you’re a newly diagnosed patient, or are a friend or relative of someone suffering from Endometriosis, this book offers help. The only text available to provide both the doctor’s and patient’s views, 100 Questions & Answers About Endometriosis gives you authoritative, practical answers to your questions about treatment options, and provides sources of support from both the doctor s and patient s viewpoints. This book is an invaluable resource for anyone coping with the physical and emotional turmoil of endometriosis.

If you would like to check it out, please click on the Library link in the upper-right of this screen. Can’t find the link? Click here.

Share your Story : Kyla

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Kyla is 34-years-old.  Nine weeks ago she had a total hysterectomy and is struggling with a potential diagnosis of Endometriosis and needs our help…

Kyla’s Journey: Hello everyone .. I recently had a total Da Vinci hysterectomy with bilateral tube removal due to several years of horrible pain with my monthly cycles and irregular bleeding with painful intercourse. I have had a very rough recovery, suffering 2 large hematomas and am still slowly recovering at 9 weeks post op. I have suspected for a long time that I had/have endo. My Dr. Has not discussed her findings during my hysto. ..she has only told me that she removed extensive scar tissue.

Because of the hematomas, I have had several CT scans since surgery to monitor my condition. At my last scan they found a nodule on my lung which I have learned can be a symptom of thoracic endo. While discussing this with my mother, she told me that my Dr. told her after my surgery that she had removed old endometrial tissue.

I just feel like there are things going on that have not been completely “fixed” by the surgery. I have suspected endo for many years and actually felt foolish after my doctor didn’t mention it at all…but now I’m finding that she did mention it to my mother so I just don’t know what to think. And as for the lung nodule, I have not had a confirmation as to what it is, I go for a re-check to see if it’s still there on the 21st…. But I am suspicious of the seemingly “mystery endo” … I don’t know if I should just ask my Dr. About it or wait for her to possibly mention it?

I don’t know how to proceed at this point. I still feel like I am experiencing endo symptoms and am definitely concerned about my lung.

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Kyla needs our help.  She wants to know if she needs to push her doctor for further information, if she should discuss the nodule on her lung, and her symptoms.  If you wish to contact Kyla, please email her at kilyien@gmail.com.  Or if you leave a comment below, I’ll make sure she receives it.

 

I want to send a special Thank You out to Kyla for being brave enough to share her personal story with us today.  You are a beautiful, brave, and strong woman.

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And 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.