Endometriosis Awareness and Resources

Endometriosis Awareness and Resources

Click on the subject of interest below, or scroll down to read the entire resource:

 

 

What is Endometriosis

The Stages of Endometriosis

What Endometriosis Symptoms Feel Like

How Endometriosis Is Diagnosed

Treatment Options for Endometriosis

What Endometriosis Awareness Means to Me

Blogs and Articles

Video Resources

The Financial Cost and Facing Homelessness

Share Your Story

What Is Endometriosis

The Google dictionary provides a very basic and undescriptive, literal definition for what endometriosis is.

“en·do·me·tri·o·sis
ˌendōˌmētrēˈōsəs/
nounMEDICINE
noun: endometriosis

a condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain.”

My website aims to bring to light a bit more of the macabre, behind-the-scenes, stuff we’re not supposed to talk about, part of endometriosis – that is until it got swept up into the latest speak-out women’s movement and is now the talk of the town with celebrities coming out about their endometriosis stories, has been kept so hush-hush that it takes an average of 7 years to diagnose.

I do think, in order to fully understand it, it’s important to know a bit of the clinical behind what exactly it is.

People who could stand to learn more about endometriosis include:

  • Women who suffer from bad periods
  • Women who suffer from chronic fatigue syndrome
  • Women who are unable to get pregnant, after having tried for a year or more
  • Women who suffer from an unknown auto-immune disorder or unseen nerve disorder, such as fybromyalgia
  • Men and women who know women who suffer – including friends, moms, daughters
  • Everyone who knows any woman – because you might be missing out on the fact that your friend or family member is suffering

This video gives a basic description of what endometriosis is, the symptoms, and how it is currently diagnosed. I am not a promoter or sponsor of the creator of this video, but I do believe the video gives a good description, with valuable information. I am working on creating my own video, and collecting other good resources for defining this. If you know of any, please feel free to comment below, or drop me an email at jaime@jaimetalks.com


The Stages of Endometriosis

These are a basic description of the stages as best I understand them from my ObGyn, (not a medical description). There is a link in the resources below to another blog that I think describes them fairly well if you’d like more detail.

Stage 1 – some occurrence of endometrial growth outside of the uterus, with mild adhesions, if any.

Stage 2 – endometrial growth outside of the uterus, with definite adhesions and potentially deeper implants.

Stage 3 – endometrial growth spreads across pelvis, potentially covering or fusing parts of the uterus or other organs, with multiple adhesions

Stage 4 – endometrial growth spreads beyond the pelvis, to the genitals, lower lumbar, or up to the lungs with multiple adhesions

I was poorly diagnosed with Stage 3, with endometrial growth across the inside of my pelvis – although my doctor did not look deeply for adhesions.

An ink test was done during the laparoscopy that revealed a complete blockage of growth in my Fallopian tubes which my doctor did not remove.

I have since learned it is best to discuss in advance with your doctor what procedures will be done to address the different stages as they are discovered in surgery. This could save you from having to have future surgeries – something I now have to consider.

What Endometriosis Symptoms Feel Like


Based on the hundreds of accounts I’ve seen or read from women who have endometriosis, the only common theme is that there is no common theme.

Of the 4 stages of endometriosis, different women express different ideas of how painful it is. And I don’t believe anyone can judge your personal pain threshold and how it affects you.

Some women with Stage 1 will have extremely horrific symptoms, and some women with Stage 4 will not have any symptoms at all – usually discovering it by accident through surgery for something else, such as appendix removal.

The most common symptoms include:

  • extreme and debilitating period cramps
  • heavy bleeding and clotting during period, and often abnormal periods
  • infertility
  • chronic pelvic pain
  • pain during sex or when using tampons

However, there is a long list of other symptoms reported by those diagnosed with endometriosis. In fact, I’ve come across dozens of stories of how endometriosis often disguises itself with symptoms that lead to numerous specialists and false diagnosis.

Below are symptoms or side effects I have personally experienced to varying degrees due to my endometriosis and endometriosis treatments – not necessarily recognized in the medical field, but very well documented online should one choose to take the time to look:

    • extreme fatigue and exhaustion (can’t get out of bed)
    • anemia symptoms
    • iron defficiency
    • chronic headache and migraine
    • light sensitivity
    • vision problems, blurriness and double vision
    • hearing problems, tinnitus and popping
    • myalgia symptoms
    • bone pain
    • deep tissue and muscle pain
    • osteoporosis or symptoms of it
    • Hashimoto’s thyroid disease
    • hypothyroidism
    • weight gain and inability to lose weight
    • bloating and inflammation of the gut
    • GI tract issues
    • acid reflux
    • IBS or symptoms of IBS and Chron’s disease
    • diarrhea and constipation
    • unexplained nausea and vomitting
    • incontinence (both urinary and colon)
    • colon polyps
    • bladder pressure (feeling like you need to pee a lot)
    • repeated urinary tract infections
    • nerve pain
    • sciatica
    • painful tingling and numbness in extremities
    • lower lumbar pain
    • inability to stretch
    • joint pain and arthritis
    • altered mood
    • depression
    • substance and pain killer abuse

On a day to day basis, I can be anywhere from a pain level of 5 to 10 with an occasion day or two on the lower end where I can almost ignore my symptoms and feel normal.

I can no longer use pain killers to any effect, and actually feel extreme stomach pain when I attempt to take them. I manage my pain with rest, meditation, creative distraction, and CBD/THC treatments.

This is not ideal as none of it fully takes away the pain or discomfort, or allows me to function reliably. Even as a freelancer, I find there are days when I can’t get to my computer because standing alone feels like it will kill me.

Growing up the severity and chronic tendency of these symptoms has continuously increased – starting with just the first few days of my period in my teens, moving to the days surrounding ovulation in my mid-late twenties, and finally spreading to cover a majority of the days in a month now in my late 30’s.

How Endometriosis Is Diagnosed

There are no blood tests or exams that 100% are able to diagnose endometriosis.

If you have fibroids (nodules or tumors in your ovaries), that may be caught on an ultrasound and eventually lead to the discovery of endometriosis, but most doctors will not give the diagnosis without laparoscopic surgery.

This means you have to get put under and have slits cut into your abdomen by a surgeon, who then inserts a camera to view the inside of your pelvis.

When you wake up, you find out if you have it or not.

This is why it is so hard to get it properly diagnosed, especially for young girls.

Treatment Options for Endometriosis

At the moment, the current medically promoted and popular “treatment plan” for endometriosis includes:

  • birth control
  • estrogen and hormone suppressants previously meant for treating prostate cancer that can come with devastating side effects
  • laparoscopic surgery (ablation or removal of endometrial sources)
  • continued monitoring and laparoscopic surgery as it grows back

This is not a solution, and there are some YouTube stories that are revealing that certain aspects of the diagnostic surgery may even exacerbate or spread any cancer that may exist (please note that endometriosis is not an indication or even a likelihood that endometrial cancer exists or will take place – and I am not a doctor).

I personally did not have a great surgery experience at all, and will be sharing my own story about that.

As I am still of a reproductive stage, my doctor is reluctant to do anything severe – and it is true the removing the uterus does not cure anything, and does not mean that the endometriosis will not grow back if there are adhesions elsewhere in the body.

A large portion of women seem to be having success through various diets.

Gluten sensitivity is definitely promoted as an issue – and even I have found relief in staying away from it.

Being vegan is also highly promoted – which makes sense to me, especially in America where hormones are used in dairy and cattle farming.

I have had some success with a vegan diet.

My intention at this point is to jump start a new eating lifestyle, starting with the AIP diet to eliminate all possible food sensitivities for at least 6 weeks, and introduce things back in little by little to see what has the best result for me.

I recommend anyone try this as a better option to just jumping on the latest fad.

If diet and exercise are to offer any benefit to this condition, we will find out by listening to our bodies and applying change where it works best for us individually.

Meanwhile, we should share our successes with each other (all our endo sisters).

What Endometriosis Awareness Means to Me

I personally only learned of the word endometriosis last year, while reading a magazine article in Cosmopolitan – at which point I looked it up and found thousands of testimonies from women all over the world.

This has finally led to my diagnosis, which came with varying levels of fear and relief at finally having an answer, for a condition that I first felt symptoms of 26 years ago – and a condition that supposedly has no cure outside of experimental treatments with horrific side effects.

I saw a gynecologist when I was 13 years old with symptoms including:

  • debilitating (rolling on the floor, clutching my abdomen) period cramps
  • excessive, extremely heavy bleeding that lead to anemia
  • sweating and chills
  • lower back pain
  • nausea
  • vomitting
  • an overall pain threshold that led to wishing I was dead

I was marked a heavy bleeder and prescribed pain killers, which I refused to take as I had taken a personal vow to live a completely drug-free life for as long as possible.

Over the years, I have been to at least 30 different primary care doctors and gynecology specialist, including 6 emergency room visits that I can recall, for abdominal pain and excessive bleeding.

I have had dozens of uterine ultrasounds (where they stick the wand inside of you to take pictures) – and have always been told everything looked healthy.

I was again given the diagnosis of “heavy bleeder,” with birth control as my only option for relief.

When I wanted to have kids, I went through three different and expensive fertility test work-ups, each of which found me completely healthy and fertile – and yet I could not get pregnant after nine years of timing and trying with a healthy partner.

Not one doctor has ever said the word endometriosis as a possible source for my pain and suffering.

Not a single pamphlet of the dozens I found in ObGyn offices mentioned the word in connection with period cramps or infertility.

From 1994 all the way to 2017, I had gynecological treatment at facilities in five different major metropolitan areas in both Southern and Northern California, Nevada, and Colorado, including everything from free clinics and planned parenthood, to expensive gynecological specialists and high-tech hospitals covered by fairly decent insurance.

And they all gave me the same answer – until I finally heard the word endometriosis and was able to find a doctor who recognized my symptoms and did the surgery necessary to get the diagnosis as of September 2018.

So for me, endometriosis awareness means getting the word out there so our future teenage girls and young women don’t have to suffer for years and decades, and diagnosis can be made early.

Additionally, we need better treatment options, more funding for research on the subject, and more facilities dedicated to both studying and specifically treating this disorder – and we need to understand what health choices (if any) are causing it.

I think that it’s important that any woman who has been diagnosed with endometriosis and has had a rough time with diagnosis or this condition speak out and make her story known.

There are a lot of celebrities starting to share their stories, which is great for awareness, of course it’s a very different world when you have access to the doctors they have access to.

I’d love to hear the raw and honest stories of girls from all walks of life. If you have a story to tell, please take the time to share it with us.

Here are some easy or fun ways to do that:

  • commenting on this blog post
  • sharing this on social media (buttons at the top of the article)
  • send it to jaime@jaimetalks.com, with the understanding that I have permission to edit solely for grammar and spelling without changing the context, and publish on my blog
  • start your own blog
  • start your own YouTube channel

I look forward to knowing your story.

Blogs and Articles

This is a list of some of my personal favorite blogs and articles about endometriosis or related useful topics, that I believe could offer some help.

Please feel free to comment below if you have a link you’d like me to add to the list, or email me at jaime@jaimetalks.com to collaborate.

Articles

Why Everyone Needs To Support #LetsTalkPeriod

“You can’t be ill. You look fine.”

Understanding the Different Stages of Endometriosis

Pain and Suffering: Calculating for Compensation

Blogs

Bloomin’ Uterus

Endometriosis Australia

Dr.Seckin’s Endometriosis Blog

This Endo Life

Endometriosis.org

Endometriosis UK

Video Resources

Diet Advice

In the video below, Integrative Pelvic Health Institute’s, Jessica Drummond, goes over natural strategies for reducing endometriosis pain and improving fertility, including important notes about diet.

She specifically outlines the importance of celiac testing and a gluten free diet, as well as increasing Omega 3’s intake – all things that my doctor recommended that have also helped me.

Outdated Medical System and No Effective Treatment Options

Here is one of my favorite endometriosis stories by Shannon Cohn, with great resources and references, including percentages and averages that outline the horrible history of the disease and why awareness is important.

I especially love how she talks about the history of “female hysteria” as a concept, and the gender bias that has lead us to accept our lot and ignore important symptoms of pain.

I will continue to collect resources that I feel are valuable to those wanting to find out more about endometriosis.

Please email me at jaime@jaimetalks.com with the subject “endometriosis” if you’d like to be subscribed to alerts for when I update anything regarding endometriosis.

The Financial Cost and Facing Homelessness


A quick search of GoFundMe with the subject “endometriosis” tells me that over 3000 people felt they were desperate enough about the situation that they necessary to ask for money.

I am going to take some of these stories and, one at a time, feature them on my blog as part of sharing more stories.

Whether you have dealt with or are dealing with endometriosis yourself, or you know someone who has, it is highly likely it has affected you in some way.

While this is a worldwide problem, and I know there is a lot of attention on creating awareness in the UK and Australia, I am particularly familiar with what is happening here in the United States where women are having a very hard time both getting diagnosed and being properly treated for it.

This condition has personally cost me tens of thousands of dollars in expensive insurance premiums, co-pays, ambulance and ER bills, ultrasounds, CT scans, MRIs, prescriptions, blood tests, exams, and countless amounts of lab work, and repeated sample collecting for biopsies.

Additionally, it has cost me tens and thousands of dollars (perhaps as much as $100,000, at this point) in lost wages from missing work or taking medical leave – not to mention, numerous loans and hardship withdrawals from 401K accounts, as well as thousands of dollars worth of savings.

I have thousands of dollars worth of medical bills on my credit report and with collections, in addition to the hundreds a month I am paying to the most important bills that keep my treatment going.

I am threatened with the fact that I have just used up my short-term disability insurance (which covers only 60% of my paycheck), and I’m now moving to my 6 months of long-term coverage (which will cover less), after which – unless I find a stable solution – I will lose my job and my health insurance.

My premiums will then go up as they will not be covered by my company and any new insurance is going to see my diagnosis as a preexisting condition: along with the asthma, IBS, depression, and chronic pain that comes with it.

I’m honestly not sure how I’ll survive financially (much less physically) as I’m barely surviving now – having not been ready for how bad things would get with the treatments available.

With negative $900 in my bank account (as in overdraft) and my final disability insurance check barely covering that and a third of my bills, I push to remain positive and just know that this is part of my journey.

At the same time, I’m not even 40 yet. I have a long life of potential suffering ahead of me, and there is a big chance that if I had made different choices in life (diet, birth control, and physical activity) I might not be dealing with such gross side effects.

Somehow this will all work out – I am confident I will not be homeless, and I will keep those thoughts pushed away as I work out the best ways someone with endometriosis can earn a living.

Share Your Story

Please comment below to share any experience you have had, first-hand or second-hand, with endometriosis.

As always, comments bring luck.

I wish you prosperity and health.

And again, if you’d like to stay up-to-date on the stories and resources I add for this, please email me at jaime@jaimetalks.com, subject line: “endometriosis.”


4 Replies on “Endometriosis Awareness and Resources

  1. Hi Jaime,
    First, let me just say,” I’m so glad I found your website”. I can’t say that I knew that endometriosis was going so undiagnosed. I have actually had friends who suffered from it as well as acquaintances. I suppose the worst side affect I have heard is the pain and not being able to get pregnant.

    It is strange that I myself have never had a problem getting pregnant, I have 4 children. As I read your article though I can now relate to so much of what you speak of.

    I myself have always struggles with IBS and abnormal menstrual cycles. My first menstrual cycle consisted of me passing out and going to the Doctor.

    Then, in my thirties, I was introduced to the GF diet. My friend had gone GF and had several of the same symptoms that I did and the diet seemed to relieve most of her symptoms. I decided to do the same and tried it.

    I felt better for a while and later had my second set of children. Now, as I write this, I have given up on being GF. I have convinced myself it is in my head due to all of the research and articles that I have read about what is used in our food. (I too, live in America)

    Yet, my cycles continue to get worse and cause me more and more pain.
    Like you, I have been to many OBGYN’s. I have never been diagnosed with this. I have even seen a Doctor in my early 20’s who told me that I was basically sensitive. GRR….
    After reading this article I wonder if this is what I have but I’m not sure I even want to know based on your experience.

    I’m not sure which road I will take but I want you to know that I do appreciate your site, your openness and wanting to shed light on the situation for other women.

    I’m so sorry that you have struggled with this for so long with no relief. I really pray that there will one day be a cure for all of the women out there going through the same thing.

    Please continue in your efforts to shed light on this and bring awareness to other women.

    Sincerely,

    Franchesca

    1. Hello, Franchesca. I am so, so happy to hear your story and I really appreciate that you shared it. I know this subject is hard to talk about for many of us, which is why we know so little about it. 

      I agree that pain and not being able to conceive are probably the two hardest things about this condition. I think also, until recently, many women felt alone in their issues because doctors kept telling us it’s normal to have period issues. And then of course the IBS and other diagnoses that you think are the problem, but never resolve because the true problem is endometriosis… yeah, it’s a tough one. 

      I have also tried GF as recommended by my doctor and it does help with the IBS. I am not 100% gluten free – I don’t care if it touches my food or anything, but I don’t eat any actual gluten. It’s really hard to keep up with, but I notice a difference. 

      I don’t blame you for not wanting to go down the path of surgery to diagnose this. I recommend holding out if you can and I’m happy to take the journey for you if you want to keep following my story. More has happened and as I have time I’ll get the information out there. But hopefully we can come up with other ways to deal with it soon so it’s not so rough. 

      I’m sure you know you are so blessed to have your 4 kids. I’m so happy for you for achieving all you have achieved as a woman and I wish you hope and love in finding answers to your own situation. 

      Best,
      Jaime

  2. This is great article to be honest. i previously had very little information on this topic and did not really understand what it was, like most conditions sadly. But after reading i feel inclined to learn more and spread the awareness along with other conditions that many people may or may not know about. Those side effects are insane. nobody should ever have to go through that much pain. im very sorry you had to deal with that.

    1. Hi, Ty. Thank you so much for reading and sharing your feedback. I appreciate that you care about endometriosis awareness and can empathize. Hopefully we can close the gap in how long it takes for it to be diagnosed. 

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