Endometriosis

 

PERIOD PAIN IS NOT NORMAL.

If you are experiencing pain beyond discomfort with your menstrual cycle we urge you to dive deeper into your health to find the cause. Endometriosis affects 1 in 10 women and has the average diagnosis time of 7 years. The earlier the diagnosis the better!

Start with the articles to the right, then check out the articles, stories of  endo, and free resources below.


ARTICLES ON ENDOMETRIOSIS

Detox Your Period for Pain Relief


detox your period for pain relief

By Arielle D. Dance, PhD

Can Tampons Cause Cramps? Detox Your Period for Pain Relief

For many women, periods come with a host of discomforts: cramping, headaches, fear of leaks, back pain, and maybe even leg pain. As someone who was diagnosed with endometriosis, a painful pelvic pain condition, in my teens, I have experienced countless painful periods and have been on the search for relief. I have finally found the perfect combination of essential oils, aromatherapy-infused heating pads, and stretches that bring me comfort.
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What Advice Would You Give to Someone Just Diagnosed with (or Suspects) Endometriosis?


What advice would you give to someone just diagnosed with endometriosis

 

So, you’ve been diagnosed with endometriosis (Or you suspect that you have it.) Now what? It can be so difficult to know where to go from here. We’re here to tell you: you’re not alone. There’s hope. You can (and will) live a happy, full life in spite of your illness. You are more than your pain.

Today’s post is the final in a series we’ve been sharing all month long on how to support women with endometriosis. Below, you’ll find advice and thoughts directly from our network of endometriosis sisters. They know how you’re feeling because they’ve experienced it too, and today they’re sharing some encouragement.

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Misunderstood and Unsupported with Endometriosis


Endometriosis - ways you've felt misunderstood or unsupported

 

Last week, we talked about all of the ways that our network of endo warriors have felt supported or loved during their battle with the disorder. Today, we’re tackling the opposite question: what are some ways that you’ve felt misunderstood or unsupported? Often times, even with the best of intentions, support systems can miss the mark when it comes to helping those in need. As a friend and supporter of those with endo, it’s important to know some of the things to avoid when caring for your loved one.

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Endometriosis Support: What Are Some of the Ways That You’ve Felt Supported by Friends & Family?


What Are Some of the Ways That You’ve Felt Supported by Friends & Family

Endometriosis is a difficult disorder to have to deal with – physically and emotionally. If you have a loved one that has been diagnosed with endo – they need you now more than ever. But even if you’re looking for ways to support them, sometimes it can be hard to know where to start.

For Endometriosis Awareness Month, we’ve decided to reach out to our network of endo sisters for their input. Who better to lend their expert advice on endo support than women and girls that are currently battling it? We’ll be breaking down their answers into a series of blog posts designed to help the loved ones and caretakers of those with endometriosis. Together, we can make a difference in the lives and outlook for those affected by this painful disorder. Today, we’re tackling the question: What do you wish your friends and family knew about endometriosis? Keep reading for tons of valuable insight from these brave endo warriors – and check back soon as we dive into more of their responses in future blog posts.
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Does a Hysterectomy Cure Endometriosis?


Does a Hysterectomy Cure Endometriosis

by Dr. Sallie Sarrel

I’m 43 and I don’t want a hysterectomy.

There has been much controversy over the claim in the media that a hysterectomy cures endometriosis.  Hysterectomy, while it has a role in treatment of pelvic pain and uterine disorders, does not cure endometriosis. For me, having a hysterectomy is a very involved decision. It is not so simple just to take the uterus because I am unable to have a child after all of endometriosis’s damage.

Being a pelvic floor physical therapist that specializes in endometriosis, I know all of the current research. I have seen patients soar after hysterectomies, and I have also seen them continue to suffer in pain and anguish. Because of my experience, I will admit that this makes me a challenging patient to work with.
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  ENDO-STORIES  BY  ENDO-SISTERS

My Endometriosis Story: A Journey to Healing

 

My period used to be incredibly painful. The best way for me to describe how they felt was like being ripped apart by Freddy Krueger from the inside. I didn’t know anyone who had as much pain as I did with my menstrual cycle.

I did the usual things like taking lots of over the counter painkillers and hot packs. These would only take the edge off the intense pain I was experiencing. I knew of no other tools to try.

When I finally spoke with my doctor, she had the usual recommendations.  We spent about nine months trying different pharmaceutical treatments such as antidepressants and oral birth control pills.  The oral birth control pills help to reduce my pain from 10 out of 10 pain to 7 out of 10 pain. This was considered the best possible outcome.Read More… >>


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Endometriosis: Had No Idea

By Madeline

Madeline - Endo AwarenessHi! I’m from the Dominican Republic and this is the story that I share with this horrible disease.

Ever since I was 15 yrs old and it was time to get my period, it was a time of suffering. It hurt a lot, I used to cry a lot and spend two days in bed because I couldn’t handle the pain. I started visiting the gynecologist and she used to tell me that it wasn’t normal to have that kind of pain every month.

Years passed and the pain grew higher, I couldn’t evacuate because of the pain I had, I couldn’t walk more than 3 hours without pain. I first thought that my problem belonged to a gastroenterologist ’cause I thought the problems where with the evacuations even if I didn’t have my period.

So when I was 18 (notice that I spent all those years from doctor to doctor with a lot of pain) I went visit the gastro and he indicated some lab test and abdominal and pelvic US. There it was, I had an ovarian cyst “probable endometriosis”, I had to visit my doctor again. She indicated an exploratory laparoscopy which I didn’t do because my father didn’t want to.

So I went under contraceptive pills for three months. Those were the worst months of my life, I couldn’t sleep, eat, walk. If I had my period, nausea, vomit, would appear as well. I passed out a couple of times and when I had the next pelvic US the endometriosis would grow more and more.

At the end, the gynecologist decided to operate and when they opened my belly the ovary exploded so they took it out to prevent future ectopic pregnancy. The right ovary had some endo so they just cleaned them out.

After the surgery I went on treatment with Lupron for 6 months, I was happy I had no pain anymore.

I’m 22 yrs old right now, I have no pain and no endo. I sometimes get a little bit of pain and it scares me to think it would be back or something so I just go periodically to do an US to make sure that if it happens again I have time to get rid of it. 🙂

Always think of endometriosis!! It’s not normal to have pain during your period!

 

Do you have a story to share? We’d love to feature you in our Endometriosis Awareness Campaign! Share your story, “here.”

 

Special Event Invite:

Join us March 14th (11am PST) for a special tweet chat to raise Endometriosis Awareness.

The topic: Endometriosis: The Invisible Disease and the Women Who Suffer. Click here, for details.


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I Didn’t Know About Endo

By Becky Mantuano

I’m going to try and tell you (and not leave anything out) because it’s been one heck of a journey. I guess I always knew something just wasn’t right.

I started my cycles at 13 and they were always painful. Crippling I guess you could say.

Becky MantuanoAt 16 I went on Depro Provera which was a blessing and a curse all bundled up together. On one hand no more painful periods, on the other, drastic weight gain (I’m talking 150 pounds weight gain) in a matter of the 2 years that I was on it. I had depression so bad I didn’t even want to get out of bed, and massive hair loss.

So at 18 when I figured out what was the cause I stopped taking it. Pain came back about 3 months later. I rocked on like this for another 3 years without taking anything. And then a new pain. Right shoulder pain, bad indigestion every month like clock work, and when I was on my period there was the new pain growing in intensity every month.

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Still On Road to Recovery Due to ENDO

By Shirley

ShirleyI was diagnosed with endometriosis in October 2012, at the age of 45 after over 10-years of being diagnosed with poly-ovarian cysts. My last ultrasound in 2012 was identical to my ultrasound from 2007. Ultrasounds do not show endometriosis!

I was fortunate and blessed because I did not have horrible pelvic pain for the last 15 plus years, even though I had cysts on both ovaries. I endured no pelvic pain on or off my periods during these years, but what I did have was flooding & large clots (larger than a half-dollar) while on my period. The first three days of my period may of included accidents even with the use of a super tampon every 30 minutes plus a night time maxi pad. I was anemic and lethargic. The last year prior to this diagnosis I had low-low back pain, uncomfortableness while lying down, and sciatic leg pain to the point of limping on my left leg.

After my endometriosis diagnosis, I was informed that my only option was a total hysterectomy including the removal of my ovaries. I was very blessed and had two beautiful girls in my early twenties.

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Living With Endometriosis

Andrea HughfThe Beginning ………

Instead of feeling sorry for myself I have made the choice to raise awareness and support for Endometriosis.

This is an overview of my story so far………..

In my early teens I always suffered with heavy and painful periods and in the early days I believed that this was normal. I don’t know what was worse the pain or the bleeding.

At 14years old my mum took me to see the GP where he prescribed me pain killers which worked for a while but after a few months they weren’t making a difference and the pain was worse. I was constantly going back to GP where he would prescribe me different pain relief and also put me on the pill at 15yrs old, however, no matter what was tried each month I would suffer severe pain in my abdomen, side and right arm. Each month I would be in tears especially the first 2 days as they were the worse.

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My Battle with Endometriosis: Diagnosed at just 22yrs old

I hope my story will be informational and helpful to all women who suffer from Endometriosis.

Since I first started my menstrual cycle at just 11yrs old, it was just awful. I had horribly heavy cycles and would get very sick and missed school because of it. My cycles were never on time and usually a week or more late. I lived with it because I was told that my heavy flow and everything was just heredity. Little did I know it was going to wind up being Endometriosis.

Endometriosis Ribbon ButtonI was diagnosed at 22yrs old with Endometriosis which was a year after I had my daughter who is my second child. I went into pre term labor at 28 wks and it was the scariest point in my life, but fortunately the doctors stopped the labor and I was put on all kinds of things so I could carry her to full term. Apparently, I already had endometriosis at that time and never knew it because I was so used to the painful menstrual cycles and pain in general.

Then one day I was in constant horrible pain on my right side specifically. After going to my regular doctor and ruling out UTI and Bladder infection she recommended I see my OB. That’s where the diagnosis that would change my life began.

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My Endo Journey

I just wanted to share a little bit of my story.

Back in 2010 I remember going through so much pain. I had all sorts of tests done along with seeing two doctors. After a scope and colonoscopy, and even having one doctor tell me I didn’t have endometriosis, I was beginning to think I just had to deal with it.

At the end of February 2011 I ended up in the hospital with some extreme pain on my side. After an ultrasound, it was determined I had a massive “chocolate” cyst that had ruptured.

On March 10th, I followed up with the ER doctor. She did an exam and decided we needed to do exploratory surgery.

A week later I went in for my surgery not knowing what would be found. I remember crying to my doctor, telling her I didn’t fear them finding anything. But instead, I feared them not finding a source to my pain.

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Endometriosis: Heather’s Story

Let me start by saying that I have always had VERY painful periods. Like most other Endo Sisters who have been kind enough to share their story, I thought this was normal. I would spend the first couple days of my period in so much pain, it was insane.

Heather - Endometriosis StoryI can remember as far back as my freshman year in high school (on a half day of school) and watching the clock, just waiting for the minute that I could go home and crawl into bed. There have been days that I had cramps so terrible, I had to miss school or work.

In August of 2012, I began to have extremely painful sex. I went to the emergency room a couple of nights later, because the pain would not stop. The E.R. doctor gave me a pelvic exam, tested me for STD’s and yeast infections (and accused my husband and I of not being committed). When all of the tests came back normal, she gave me a prescription to clear up a yeast infection she said probably didn’t show up on the test. I was then discharged.

A week later, I was still having the same symptoms, along with added back pain, pelvic pain, bloating and fatigue. So, I went to an urgent care facility, since my primary doctor was booked. I paid my insurance co-pay, was taken back to an empty room, met the doctor and gave my symptoms. I was not treated at all, I was told to go follow up with my primary doctor or go to the E.R. again. You can only imagine my frustration since I had just paid my insurance co-pay and didn’t get help. So, I went to my primary doctor (P.D.) two days later, and told them my symptoms. I was unable to see my actual doctor but got in with a P.A.

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My Battle With Endometriosis

Hi! My name is Jennifer, I’m 30 years old & live in Mobile, AL.

Since March is endometriosis awareness month, I’d like to share my story with you about my battle with this disease. I hope that in sharing my story it will give others with the disease hope, & help raise awareness to those who may not know about or understand endo.

Jennifer ObertI have lived with endometriosis since I started having a period, although I didn’t get an “official” diagnosis until I was 21. I live in constant pain. Some days are better than others, but there’s not a day that goes by that I don’t hurt in some way. My periods are completely unpredictable, and absolutely ridiculous. Some months I may have a typical one week period & some I’ll bleed for 2-3 weeks out of the month. I think my worst one was a couple of years ago I bled for 4 months, yes months, straight. I feel like I’m always at my gyn’s office for one reason or another. I’ve tried just about every treatment option available at least twice, and they ultimately never work in my case. I have had 8 surgeries to try and help ease the pain, and they do, but for only a short period of time. When the pain returns, it’s often worse than it was before surgery. It is very defeating, and I won’t lie, I do have my “why me” moments.

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Endometriosis: Melissa’s Story

Melissa MeyerThe EndoAngel, Melissa shares her story…

“I guess you could say that my story begins like many other Endo Stories begin: with a nasty diagnosis while starring blankly at your doctor…. I know for me, it took days for the information to actually settle. To finally know what was causing my pain but also to confront those dreaded words of “there is no cure”, “your fertility can be affected” and “there are limited choices on what we can do”.

It felt like everything in my life had suddenly come to a grinding halt. I was only 19 and here I was, having to make decisions about my future children and what I could do to prevent this disease from spreading. I was only presented with two choices: operations and hormonal treatments. I didn’t particularly like the sound of either one and so, my doctor worked out a system where I could go on the lowest possible hormone treatment and just have an operation every year and a half to “clean me out”. I really believed for many, many years that I was on a good path. I had entrusted my body to a specialist and he had heaps of experience with women and Endometriosis. Surely, he must know what was best for me?

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    TOP RESOURCES

ENDOMETRIOSIS QUIZ

Endometriosis affects 1 in 10 women in the US and has an average diagnosis time of 7 years. How much do you know about the disorder?

HEALTHY PRODUCTS & LIFESTYLE SERIES

This weekly email series is designed to teach you everything you need to know about choosing healthier alternatives that reduce your risk of TSS.

ORGANIC PERIOD 2GO KITS

These fashionable period kits stuffed with organic tampons or natural pads were designed to keep ladies of all ages prepared with the healthiest options for their period while on the go!

SHARE YOUR ENDO STORY

Join our featured EndoSisters by sharing your endo journey with with us. Let’s continue raising awareness together!

Detox Your Period for Pain Relief

By Arielle D. Dance, PhD Can Tampons Cause Cramps? Detox Your Period for Pain Relief For many women, periods come with a host of discomforts: cramping, headaches, fear of leaks, back pain, and maybe even leg pain. As someone who was diagnosed with endometriosis, a...

What Advice Would You Give to Someone Just Diagnosed with (or Suspects) Endometriosis?

  So, you’ve been diagnosed with endometriosis (Or you suspect that you have it.) Now what? It can be so difficult to know where to go from here. We’re here to tell you: you’re not alone. There’s hope. You can (and will) live a happy, full life in spite of your...

Misunderstood and Unsupported with Endometriosis

  Last week, we talked about all of the ways that our network of endo warriors have felt supported or loved during their battle with the disorder. Today, we’re tackling the opposite question: what are some ways that you’ve felt misunderstood or unsupported? Often...

Endometriosis Support: What Are Some of the Ways That You’ve Felt Supported by Friends & Family?

What Are Some of the Ways That You’ve Felt Supported by Friends & Family Endometriosis is a difficult disorder to have to deal with - physically and emotionally. If you have a loved one that has been diagnosed with endo - they need you now more than ever. But even if...

Does a Hysterectomy Cure Endometriosis?

by Dr. Sallie Sarrel I’m 43 and I don’t want a hysterectomy. There has been much controversy over the claim in the media that a hysterectomy cures endometriosis.  Hysterectomy, while it has a role in treatment of pelvic pain and uterine disorders, does not cure...

What Do You Wish Your Friends and Family Knew About Endometriosis?

 Endometriosis is a difficult disorder to have to deal with - physically and emotionally. If you have a loved one that has been diagnosed with endo - they need you now more than ever. But even if you’re looking for ways to support them, sometimes it can be hard to...

How to be Your Own Health Advocate When You Suspect Endometriosis

by Heather Guidone Many facets of endometriosis continue to be hotly debated, and much is still unknown about the condition. As a result, access to quality care can prove difficult and the disease can be isolating, making it hard for affected individuals to advocate...

Why is Endometriosis So Difficult to Diagnose?

By Dr Pandelis Athanasias Endometriosis is a painful disease which affects around 1 in 10 women, but reports have shown that it can take up to ten years to diagnose. Women with endometriosis typically experience very painful, heavy periods, pain during intimacy,...

When Period Pain ISN’T Normal

By Amy Morris There is no doubt that as women, our bodies are nothing short of amazing. But what isn't so amazing is the pain that can occur when our good friend Aunt Flo shows up in the form of our monthly period. Ladies of all ages, please take note that not all...

Monthly Mission: Endometriosis Awareness

Your Period Shouldn't Be Painful March is Endometriosis Awareness Month. "Endo" is a painful disease that affects at least 176 million people worldwide. The Be Prepared Period team sends love and support to our many Endo sisters (and brothers!) experiencing the...