Category Archives: Endometriosis

#LemonChallenge – Raising Awareness About Endometriosis Continues

Chief Maxi Wendy Agudelo of Period Packs, Inc. takes the #lemonchallenge to a new level by introducing a #LickableLemonChallenge.

 

Sophie at DivaCup accepted the challenge and passed it on.

 

#LemonChallenge: Meet Kaitlin

Kaitlin accepted the #LemonChallenge.  And, from the video below, it looks like she did so at work. At work – now there’s a thought.

#LemonChallenge is bigger than you or me. #LemonChallenge is as large as our combined reach!

Think of all the people you come into contact with – at work, in your community, at school, at home, via social media…. This is your reach.  Open your arms and reach wide.  Let’s reach the world with endometriosis awareness and affect real change.

#LemonChallenge everyone within your reach.

#LemonChallenge: Meet Tara

Tara, of Be Prepared Period fame, took the #LemonChallenge and challenged three others.  (You will have to watch her video to see if your name was one of the three.)

Of particular interest to me was that Tara included her daughter in the video. What a period wise decision!

The best thing we can do for our daughters is to talk with them often about issues that matter to women of all ages.

Will you take the #LemonChallenge and raise awareness about endometriosis?

#LemonChallenge: Meet Julie

To take on the role of a true friend requires far more than most are willing to invest.

Meet Julie – friend extraordinaire.

Julie (aka @JulieRay916) is Deborah‘s friend and graciously agreed to a #LemonChallenge interview.

My name is Julie Christy, I am a twenty-five year old wife and mommy to a ten month old baby boy. I am from Danville, Virginia and live in Melbourne, Florida where I grew up (I moved from Virginia to Florida when I was a baby, moved back to Virginia as a teen and came back to Florida when I was twenty one.). I am a full time nanny taking care of two children and my own son in the process, I will be “retiring” in May to be a stay at home mom and wife.

Have you ever been diagnosed with endometriosis?

I have never been diagnosed with endometriosis.
How did you initially become aware of endometriosis?

I was first made aware of endometriosis when a childhood friend mentioned having it, nothing was really researched or explained in detail because we were young and just didn’t understand the importance of it. I really became aware of endometriosis and how it can affect someone when I met Deborah Bradshaw.

As someone who has not received the diagnosis of endometriosis, what role do you see yourself having with regard to endo awareness/support?

I want to take on whatever role will bring awareness and support at it’s best. I do not have endometriosis and will never know truly how someone with endometriosis lives on a day to day basis but I have been with Deborah since before she lost her sweet angel Avery and through it and now to this day and I think it is so so so important that not only the women who may have or do have endometriosis should be educated and supported but that the people who do not have it are educated and understand. So many women take for granted every day things that women with endo would die to have. I thank God every day…every.single.day for my son because I know that God could’ve chosen a different path for me.

What responsibility do you feel, or have you assumed, regarding sharing your knowledge of endometriosis with others, and why?

I think my responsibility in sharing my knowledge of endometriosis with others is like my responsibility in sharing my faith of the Lord, you may not get through to hundreds of people BUT if one person hears you, you’ve made a difference. Endometriosis is a HUGE deal and I feel my responsibility as a woman, whether I have endometriosis or not, is to spread the word, to get the awareness out in the open so girls can be diagnosed sooner and research can flourish and so that women like Deborah know that even though I may not be going through it, I am sympathetic and I care and want to understand as much as I can.

Tell me about #LemonChallenge – how did you come to be involved with it?  

#LemonChallenge is something that came about because Deborah and I were text messaging back and forth discussing that we needed to come up with something to raise awareness for endometriosis like they have ALS. My next thought was that yellow was the color for endo awareness so what could we do with something yellow and we decided on lemons!

What do you hope will be accomplished through the #LemonChallenge?   

I hope that we can make endo awareness huge and educate more people on what it is and how it affects people, not just the women but their family and friends also, and to raise money for the research center so they continue to have enough funds to find a cure for this horrible disease.

Please share the link to your #LemonChallenge video and tells us what it was like to produce it.

I made two videos because my first one was so long and I don’t have rights to the music.

http://youtu.be/R8LiWWi5Ouc

http://youtu.be/DQ0ZVO5d5Fo

It was awesome to produce these videos knowing that if we could share them all over we could educate women and girls and their families and friends and get awareness all over the place.

What advice do you have for others who are interested in creating a #LemonChallenge video to raise awareness about endometriosis and funding for a cure?

If you’re interested in creating a video, do it! There aren’t any real stipulations, except to suck the lemon for five seconds and nominate as many people as you want and make sure to donate to the research center. Share with your family and friends what you are doing so they can share it too.

How many girls/women do you know of, personally, who have received the diagnosis of endometriosis?  How many people do you know who have ALS?

I know of at least four or five women I am close with who have endometriosis, at all different stages. I do not know anyone with ALS.

How has endometriosis changed / affected you? As the friend of someone with endo, you have been touched by it.

Endometriosis has changed me in that it has humbled me, it has made me more caring and cautious when people write off bad period symptoms as it being just “that time of the month” or when people throw around pregnancy talk and treating women like their only purpose in life is to conceive and have babies, because it’s not. Period symptoms sometimes aren’t just period symptoms, they are real pain caused by something extremely hard to live with when someone has endo. People rarely think about a woman being infertile, and I’m not saying people should walk around on egg shells but just have some compassion. It has made me realize that there are absolutely amazing, beautiful mothers out in this world who don’t have children of their own so to speak but that mother step children better than some mothers treat their own children.

Is there anything you would like to say to women who have been diagnosed with endo? 

I would like to say although I know that sometimes it doesn’t seem like much coming from someone who doesn’t have endometriosis, I care, and I sympathize with you and I want you to know that I never take for granted anything. They need to know they are beautiful inside and out and that this disease will not take over their lives as long as they don’t allow it. God is always with you even in the darkest moments and the most important thing is that it’s okay to cry and be angry, just don’t stay angry.

What advice would you like to share with family and friends of women with endometriosis – any tips you can offer on how to support, what role to play, how best to help? 

Just educate people, make people aware that this disease is real and happening every day to millions of women. Share facts with EVERYONE and let them know about the research center and how they can donate. Be supportive, just let them know you are a shoulder to lean on and you have an ear to listen, even if it’s to let them cry or vent.

What is the biggest challenge to women with endometriosis that you see from your standpoint?

The biggest challenge to women with endometriosis that I have seen is not being diagnosed soon enough and infertility and accepting those circumstances.

What period wise challenge would you like to share?

#LemonChallenge.

What one word sums up endo for you? 

Challenging.

Is there anything else you would like to share that’s not covered in the questions?

Women who suffer from endo need to be reminded all the time that they are beautiful inside and out and that although things seem unfair and challenging, God is always working.

#LemonChallenge: Suzan

#LemonChallenge for endometriosis awareness is the Period Wise thing to do!

I challenge Tara at Be Prepared Period, Cathy at Lunette, and Wendy at Period Packs to make a video and suck a lemon for 5 seconds, or/and make a donation to endometriosis research.

And, I challenge you, too, Dear Reader!

Endo sucks. Let’s help find a cure!

#LemonChallenge – Meet Deborah

Meet Deborah (aka @Deebolynne).  

Deborah describes herself as “a 31 year old childless woman on a mission to end Endo!”

She graciously agreed to an interview. (Thank you, Deborah for sharing so openly of your experience with endometriosis (aka endo).

Who were you before endo?

Its hard for me to remember a time before endo, as I have been in pain since I was 14 yrs old from it. I know that before I was diagnosed, I was happy, brave, care-free. I was in constant pain and discomfort, but I learned to accept it and live through it. I was always trying to find out what was wrong, but after so many dead ends, I accepted the fact that it was how I was meant to live, so I refused to ever let it get me down.

How has endo changed you? physically, mentally, spiritually, etc.

I have questioned my faith in God a lot over the last few years. I have even questioned my own mentality. I have bad days and I have good. Accepting that I will never be a mother is the hardest part. I feel empty, like there is a void in my soul that I will never be able to fill. The disease is nothing compared to that burden and sorrow. It is a heartache like no other. I have had a complete hysterectomy, so I am in severe surgical menopause and sometimes that is hard also. I have a hard time sleeping, as night sweats are horrible. I have no periods now, which is a good thing, but I’d rather have them and be able to conceive. I find that I am angry, bitter, and as a whole, most of the time, just sad. I look at other families, and pregnant bellies and I want to scream “Why not me??” “Why couldn’t my Doctors help me sooner, so I would be able to have a child also?” “What have I done in my life so awful that I have deserved to be in such horrible pain for 17 years, and now this?? Wasn’t the endo pain enough?? Now my heart will forever hurt as well?”…I try to channel that pain into the Endo fight, into the war. To help fund research, to help other girls and women become more aware, to teach people about what Endo is. But sometimes, I just cry. I missed my own sister’s baby shower, because it hurt my heart too much to go. My best friend didn’t tell me she was pregnant for 6 months, because she didn’t want to hurt me. Often times before I was diagnosed, I missed work because I was hospitalized so much from the pain. Still, no answers…..

How is endo changing you even now?

It’s making me fight harder so no one else will ever have to go through what I have. It’s made me believe that maybe this is my purpose, not as I believed, (to be a mother), but to be an Endo sister, and to fight until the day I die, for all of them, and for all our future girls, to have a cure. To have knowledge.

How old where you when you began to realize something wasn’t quite right period wise?  What symptoms did you have?

I was 14 when I started experiencing my symptoms. I had pains so bad in and around my uterus that I could hardly move. I was also always constipated, as I would only have a BM once every week-two weeks. When I used the bathroom, it ALWAYS hurt, terribly. Certain foods would trigger pain, like red meats. I was always bloated. Sex hurt tremendously. I never enjoyed “penetration” until well after my hysterectomy at 30 years old. Tampons were a no go after I was about 16. They were very painful. I never bled a lot like most endo women, in fact I had an opposite experience. I only menstruated every 3-4 months and it was VERY light, more like just spotting. (My doctors told me after diagnosis, that this was probably due to my blood staying all internal.)

When were you diagnosed with endo?

I was 26 years old. I had emergency surgery for a ruptured ectopic pregnancy (an endo cyst was blocking my tube), and in cutting me open, my doctor found all of my reproductive organs bound together by stage 4 endo.

What treatment(s) were offered/tried/worked?

They scraped, cut and burned all they could in the initial ectopic surgery. Tried to salvage what they could of my other tube and ovary. I then was on Lupron for 1 yr. It gave me horrible side affects, fainting, dizziness and memory loss. i was then on Depo Provera injections, and otc IBU. Occasionally, when I was hospitalized they would give me strong Rx pain killers to go home with, but I only took them if i felt I had to to be able to function, as I didn’t like how they made me feel “high”.

What has endo cost you? (We know, but others don’t know that the $ spent is only a fraction of the true cost of endo.)

Financially, I have had about $37,000 in doctors and hospital bills.  Physically, I lost my reproductive organs and because I had endo on my spine also I had to use a walker for over a month.  I affected my ability to walk…my back, buttocks and legs were all affected. And, it cost the life of my unborn baby….

How do you feel your life would have been/would be different if endo had not been a part of your life experience?

All I can remember of my teenage years is being in physical pain and feeling crazy because no doctor would listen to me. Now I will never have a child or family of my own like everyone else does.
But it’s not just me, My mother will never meet her grandchild. My baby is gone, and I will never have a child. I will never be able to look in a child’s face and see my own. My sister will never have a niece or nephew. My nephew will never have a cousin to play and grow with.  People talk about their kids to me and say and look at me like “you will never understand” or “you don’t know, because you don’t have them” “just adopt”. I am asked all the time by people, “do you have children, or how many kids do you have?” and how do i answer “no, endo took that from me”??
For more than half of my life I have been tired. Tired of being misunderstood, underestimated, tired of being in pain, tired of my own emotions AND body failing me. Tired of feeling less important than healthy women, and unworthy of the attention, and love, that pregnant or healthy women get….I am determined to not let all that show though, as I have to be strong for the endo sisters around the world, and I have to pour that into the fight for them…

How have your close family and friends responded to your experience with endo?

Most people don’t understand, and don’t really try to, because it’s not happening to THEM. I have a few close supporters. But not many. People don’t realize how serious it is.

What support have you received from them?

Encouraging words, more than anything, and a listening ear. Julie has helped orchestrate the lemon challenge, and my mother is taking donations for me.

What did endo change about you? about your abilities? your hopes? dreams?

It took all of my hopes and dreams. It took my ability to create life, and to have a normal life.

Did endo affect your work / ability to work? Was your employer understanding and supportive?

I have always worked two jobs at a time since I have been able to work, in order to pay my medical bills. Some employers have been understanding, but most are very impatient and find it unacceptable to do anything except pushing through it and acting as if it is not happening at all. So that is what I have always done until now. Pretend like it is not even happening, because it’s what’s most comfortable to others, and what was the most productive to my life for so long, in order for me to live a “normal” life.

Has endo affected your personal relationships with friends and family?

Most definitely. Sometimes I find it hard to converse with them, or to even see them, because at my age, life becomes for others all about their kids. We don’t have that in common…They don’t always respect my fight for Endo, as they don’t find it as important as their children are. Sometimes I find myself resenting them, as they never ask “how are you”? It’s always their child did this or that….

What is the most important thing you want people to know about endo?

That it is a disease. It is serious and it does deserve to be known. It’s not just “cramps”. It is life changing and deserves a cure!!

Tell me about #LemonChallenge – how did you come up with the # and the idea?  Do you have a co-conspirator in this campaign against the ravages of endo and the push to raise awareness of and support for finding a cure for endo?

I do have a partner in this. Julie Ray Christy and I were discussing how wonderful the ALS Ice Bucket Challenge has been, how much $ and awareness it has brought forth and how we should do something similar for endo. Lemons are yellow, and the Endo ribbon color is yellow, so that’s where the lemon came from. And, we thought it would be entertaining and funny to watch people’s faces sucking the lemon. So, we thought maybe it would catch on quickly.

What do you hope to accomplish through the #LemonChallenge?

More awareness. If I’d had a laproscopy when I was first experiencing symptoms, I could have been diagnosed and treated a lot sooner, and my life would be a lot different now and would have been different all along. I don’t want anyone else to go through what I have.

Is there anything you would like to say to other women who have been diagnosed with endo?

God Bless You. Stay Strong. Never stop searching for answers or for help in this. Never stop fighting. I, and we endo sisters as a whole, are always here for you. Do not let this dreadful disease define you. You can still be happy. You can live.  You can thrive. Just keep pushing forward. We have support groups everywhere, and although there are not many endo specialist doctors in America, it does not mean you can not become one!! and do the #LemonChallenge!! Please, help me help you by spreading the word about it!! Let’s make it world wide news!!!

What are your thoughts about endo support groups?  Have you found them to be of benefit (past / present / future needs)? Would you advise women diagnosed with endo to become a part of one?

I would. I think they are wonderful. In a world where you feel like no one understands you, we are there. Sometimes a virtual hug from someone that understands, is better than a half hug from someone in front of you that will never even try to understand.

What advice do you have for the friends and family of girls and women with endo?

Please, please just give them your support. Help them fight for endo awareness. Do the Lemon Challenge. Wear yellow on March 1st. Donate to the endo research center if you can, and if not, help them take donations. Be their shoulder when they need you. Be their friend. Be patient when they are in pain. Visit them in the hospital. Never make them feel like a “patient”, make them feel like a person. We endo sufferers fight battles within our own bodies that you may never understand, but you can always try. Your support means more to us than you could ever know. Help us know that as insignificant as we may feel, we do matter.

What period wise challenge would you like to share?

#LemonChallenge

What one word sums up endo for you?

War.

Is there anything else you would like to share that I’ve not covered in the questions?

I just want to say thank you to everyone who is supportive, any one who has done the #LemonChallenge, anyone who has donated or anyone that has simply taken the time out of their day to call and ask us how we are doing with our battle, or if they can help in any way….It means more than you could ever know!!!

#LemonChallenge

You’ve no doubt heard of the ALS #IceBucketChallenge, but have you heard of the   #LemonChallenge to raise awareness of and funding to find a cure for endometriosis?

ALS affects 2 in 100,000 people and certainly is deserving of attention.  Endometriosis, however, affects a minimum of 1 in 10 women. I would hope the challenge to raise awareness of endometriosis would become far more popular.

Perhaps you don’t have endometriosis and think it’s not that big a deal.  I can assure you a close friend or family member does and it’s a huge deal to them.  It is time we did more to raise awareness and generate funding to find a cure, starting now with the #LemonChallenge.

Here’s the challege: make a video, mention that it’s for endometriosis and suck a lemon for 5 seconds OR (and) send a donation to: Endometriosis Research Center World Headquarters at 630 Ibis Dr., Delay Beach, FL 33444.  Be sure to mark it #LemonChallenge for a cure!

Check back soon for the next in the Period Wise #LemonChallenge series.

On the Outside Looking In – Hysterectomy

As I type this, a dear friend is undergoing a hysterectomy.

Painful periods and heavy flow prompted tests and the diagnosis of Endometriosis with adhesions was given.

My friend was thankful to finally find an end to her monthly pain, but also nervous about going under general anesthesia and the knife.

Because of the location of and amount of adhesions, she was not a candidate for laparoscopic surgery.  She would have abdominal surgery – in the same scar used for her C-sections.

She was concerned about pain and length of recovery.  I could only share of my own experience – which was far different than her own will be.

I did not have endo and adhesions were not a problem for me.  I had fibroids – some the size of grapefruits, some on stalks – and a uterus the size of a 6 month pregnancy.  Surprisingly, I WAS a candidate for a laparoscopic hysterectomy.

How my experience and that of my friend compare remain to be seen.

I hope all goes well and that she is up and around and back to some semblance of normal within a week or two. Full recover, no matter the surgery chosen, won’t occur for about a year.

As I type this, I am aware that my friend will never experience another period – ever.  I thought it ironic that my last period was due to begin same day as my surgery.

During her last period, I asked my friend to consider two things.

  1. Was there was anything she would like to experience during this last period? After surgery, there will not be another opportunity.
  2. Was there anything about her period that she would like to share with her young, teenage daughter?  After surgery, her daughter would be unable to experience or learn from her mother’s periods, or benefit from anything she might learn from them.

Do you know when your last period will be?

Most women don’t.

If, while reading this post, something came to mind that you need to address, don’t put it off.

  • If there’s a product you want to try, try it.
  • If there’s something you want to know, ask it.
  • If there’s something you need to learn, learn it.
  • If there’s something you want to experience, experience it.
  • If there’s something you want to share, share it.

Now.

Don’t wait until it’s too late.

Period regrets are such sad regrets.

Be period wise.

Makeup and Suncreen Linked to Painful Periods

Is it possible that things you use every day – like makeup and sunscreen – are creating period problems for you? For your daughter…now or in the future?

With Summer just around the corner and sunscreen displayed prominently in most stores, it’s important to choose sunscreen that’s period wise.

Prevention Magazine reported 3 environmental factors that are linked to painful periods. The first is sunscreen (the makeup you use may contain sunscreen).

They protect your skin, but certain ingredients in sunscreen could be doing a number on your reproductive parts. The latest evidence of that, published in the journal Environmental Science & Technology, comes from research showing that women with higher levels of benzophenone (or Oxybenzone), a common UV filter used in makeup and sunscreen, faced a significantly higher risk of having endometriosis.

Avoid it: Lighten your chemical load by opting for natural sunscreens (see our picks with the Best Natural Sunscreens).

The second and third environmental factors linked to painful periods?

  • Pesticides
  • Trans Fats

To learn more visit Environmental Factors Linked to Painful Periods.

March is Endometriosis Awareness Month

What is Endometriosis (Endo)?

The Mayo Clinic defines Endo as:

…an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region.

In endometriosis, displaced endometrial tissue continues to act as it normally would: It thickens, breaks down and bleeds with each menstrual cycle. And because this displaced tissue has no way to exit your body, it becomes trapped. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.

This process can cause pain — sometimes severe — especially during your period. Fertility problems also may develop. Fortunately, effective treatments are available.

Suspect you may have Endo?

The Endometriosis Research Center provides a self test on its site.

ENDOMETRIOSIS SELF-TEST

(Developed in 1999 by the Endometriosis Research Center.)

Not sure if you have endometriosis?  Pelvic surgery is the only current way to definitively diagnose the disease, but symptoms can lead you and your doctor to suspect it.  Review the following and consider if any of these common symptoms apply to you.  Review your answers with your gynecologist for further discussion.

  • Do you experience so much pain during or around your period that you find yourself unable to work, attend school or social functions, or go about your normal routine?  YES  /  NO
  • Do you have any relatives diagnosed with endometriosis?  YES  /  NO
  • Do you find yourself with painful abdominal bloating, swelling or tenderness at any time in your cycle? YES  /  NO
  • Do you have a history of painful ovarian endometriomas (“chocolate cysts”)? YES  /  NO
  • Do you have a history of miscarriage, infertility or ectopic pregnancy? YES  /  NO
  • Do you experience gastrointestinal symptoms during your cycle, such as nausea or vomiting and/or painful abdominal cramping accompanied by diarrhea and/or constipation?  YES  /  NO
  • Do you have a history of fatigue or feeling “sick and tired” all the time?  YES  /  NO
  • Do you have a history of allergies, which tend to worsen around your periods? YES  /  NO
  • If sexually active, do you experience pain during sexual activity?  YES  /  NO
  • Do you suffer from autoimmune diseases or other conditions e.g. thyroid disease, rheumatoid arthritis, lupus, fibromyalgia, multiple sclerosis, chronic migraines? YES  /  NO
  • Have you ever undergone pelvic surgery like a laparoscopy, in which endometriosis was suspected but not definitively diagnosed? YES  /  NO

If you have answered “yes” to three or more of these questions, you may have endometriosis.  Talk to your trusted nurse or doctor about getting an accurate diagnosis and effective treatment today.  Dull aching and cramping can occur during menstruation in many women and teens, due to uterine contractions and the release of various hormones, including those known as prostaglandins.  However, period pain that becomes so debilitating it renders you unable to go about your normal routine is not ordinary or typical!  Pain is your body’s way of signaling that something is WRONG.  If you are suffering from pelvic pain at any point in your cycle, an endometriosis diagnosis should be considered.

To learn more about endometriosis, please visit these links: