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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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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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

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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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 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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How_to_be_your_own_Health_Advocate

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 for themselves and truly feel they are being heard. Fortunately, there are a few steps we can take to navigate the journey.

When we know better, we do better. Endometriosis education is the key to making informed decisions about our care, and educating those around us can also ensure that we have allies in our journeys.

Those struggling with endometriosis can benefit from educating themselves as thoroughly as possible utilizing trusted, credible sources. Here are a few resources we recommend:Read More… >>


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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, infertility and a whole host of other issues.

Endometriosis is a condition where tissue, which is similar to the tissue lining the womb (endometrium), begins to grow outside of the uterus. This tissue can be found in many different places including the ovaries, fallopian tubes, bowel, bladder and stomach. As such, during every period these growths will shed, setting off inflammation and scarring and habitually causing intense pain and emotional turmoil.

It is a chronic illness with no cure and as such, women need to find a way to manage the pain, often massively affecting their quality of life. Why, then, are so many women failing to get a correct diagnosis, often waiting for years and visiting their GP on multiple occasions? Read More… >>


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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 Awareness - Monthly Mission

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 disease.

This month on the blog, we’re diving into the personal journeys of those that have received an Endometriosis Diagnoses. Dr. Allegra Hart, a naturopathic physician, will also be sharing her Endo story and what it took to receive a diagnosis. For many, this process can take years, and the first step to any diagnosis is awareness.

Below, Carol Drury, from the Endometriosis Association, shares the details of this disease, and the warning signs that you may have it. Read More… >>


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What is Endometriosis?

It is a hormonal and immune disease affecting girls as young as eight and women of all ages.  The name comes from the word, endometrium, which is the tissue that lines the inside of the uterus and builds up and sheds each month in the menstrual cycle.  In “endo” tissue like the endometrium is found outside the uterus in other areas of the body, most commonly in the abdomen. Endometriosis Awareness

 

What are the symptoms?

Common symptoms include pain with periods; pain with intercourse, urination, or with a bowel movement; and infertility.

 

Period Pain is Not Normal!

That’s right!  It is not normal to be in pain during your period.  If pain during a menstrual period cannot be relieved by over-the-counter pain medication and a heating pad, then endometriosis should be suspected.  It is important to be diagnosed as soon as possible, as earlier diagnosis and treatment may reduce the progression and severity of the disease.

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