This week I watched the new documentary on endometriosis: Endo What? with my hubby.
Given the past decade together, he’s seen the impacts of life with endo, but I’m still not sure he completely understands exactly what endometriosis is.
This caused a recent scuffle. It’s difficult living with a condition that is misunderstood, especially by those the closest to us.
At 55 minutes, the film was a way for me to educate him.
I’m grateful that Endo What? came out with an accurate documentary aimed at educating on what endometriosis is, what the myths are, and ways of treating it.
I appreciated that there was a emphasis on diet, stress management and toxic load, and figuring out what’s best for YOUR body.
Awakening Medical Emotions
It didn’t take too long into the film for me to get chocked up.
I watched on screen a reminder of emotions that have continued to awaken inside of me. Emotions related to the experiences in doctor’s offices. Countless trips over the years to the gynecologist.
The stirrups, the paper gown, feeling vulnerable in a cold room. The tools. Scraping.
Even writing this, I can tap back into the sickness in my stomach these memories still hold. I don’t recall a positive experience in that very vulnerable position.
And the last memory was incredibly traumatizing.
The woman that I saw was cold, impatient and rough. I was in the middle of miscarrying and in a great amount of pain – especially after an excruciatingly long internal ultrasound.
“I have endometriosis,” I tried to explain to her. I was in a tremendous amount of pain. The woman didn’t even give me a moment to calm down.
I was literally crawling up that paper-lined bed, pleading with her – please I can’t do the clamps – and she forced them in anyways. As I was clenched and crying.
Wow. Deep breath. That memory lives in me.
I haven’t been back to the gynecologist since. It’s been three years. I haven’t had a pap smear in…. who knows how long. And I have NO desire to.
As I watched Endo What? this week, a lot of those emotions came back. Anger. Distrust. Pain.
Like I said, there hasn’t been a positive experience on that paper-lined table. I feel like it’s all very personal, yet the process of it all isn’t.
The Resistance Runs Deep
One issue brought up in the film was this underlying desire to want to be listened to.
The film explained how many times endometriosis can be detected via symptoms over a physical exam. And Lord knows, those exams HURT.
The procedures, the true vulgarity of spreading open to have metal clamps shoved in…. there I go again. It’s torturous in my mind.
Medical trauma.
I think there is a physical and emotional pain connected to the experience of visiting the gynecologist. It digs deep.
This resistance circles through me.
I know I’ve been needing to get my thyroid levels checked, for years now, but I haven’t. That would require me to see a new doctor. A new relationship. And for me, that starts with a step of distrust.
One of the last time I had my thyroid levels checked I asked my doctor if my Hashimoto’s diagnosis would impact my fertility and she said flat out, “No.”
That couldn’t have been further from the truth. Your thyroid plays a big role in fertility. Sigh.
I’ve had underlying authority issues through my life. I dislike the idea of someone being in a position to pressure choices that are only band-aids. Damaging drugs.
I suppose I’ve lost faith in receiving any sound advice outside of this. I am skeptical.
On the Positive Side?
A lot of this past medical trauma has come up subconsciously as I’ve been writing my next book based on a leading question: What am I Worth?
I think that writing is a ticket inside. It’s amazing what crops up.
I can tell that this one’s stimulating a bigger unraveling in my healing journey. The pain that’s buried inside needs to be acknowledged, felt and released.
What is it like to live with a condition like endometriosis? And how does that alter this question – What am I worth?
The experiences I’ve had in the doctor’s offices have shaped this. Unfortunately.
It took me 17 years to get a proper diagnosis, and that diagnosis came from my own research. After years of complaining of pain with my periods, not one doctor took the time to listen to that and dig deeper.
Years of not being listened to does impact your subconscious and puts a stamp on that question: What am I worth?
A life of pain? They say it’s normal.
I’m here to say…. it’s not. Thank you Endo What? for spreading that message. I hope you take the time to watch it and share it with as many as you can.
I hope that you too come away from it feeling empowered to take charge of your own health. And I hope that it gets in the hands of gynecologists too 🙂
Do you relate to the ideas of medical trauma living with endometriosis? How has this impacted you? What’s helped you through it?
I’d love to hear from you in the comments below.
This story touched my heart so deeply, I am 37 yrs old diagnosed when I was 16 with laparoscopy, I’ve had so many horrible experiences I cried reading your story from start to finish. I live in Michigan am currently going to see an endorsement specialist at UofM next month praying for a surgery to ease my pain, haven’t had one in 10 plus years, I also have ins, and osteopenia believed to be caused from lupron I took many years ago, I am sending you a huge hug for opening up your story unfortunately is way to relatable, unfortunately that’s a bad thing for all of that suffer, my thoughts are with you I hope things look up for you, sincerely!💗💗
Hi Gwen. Sorry to hear you’ve had similar experiences. I hope that you find someone good to help you. Sending LOVE.
I completely understand what you’re saying. I have become skeptical and distrustful, too! To the degree that I even won’t go into the procedure of having the diagnose confirmed (risking both post-surgery complications and emotional trauma). I’ve had so many symptoms I am sure that it’s endo. But even if it’s “just” hormonal imbalance, who cares. I still get the pain and all the issues. At least I feel that not going through the medical procedures I can still hold on to my physical and mental integrity.
Good luck with your new book! There’s never enough speaking up about these issues.
Take care,
Emma
Thanks Emma.
I ended up having surgery to diagnose since I wanted to know for sure and to see the extent of it, but it was a big ordeal. I can understand why you would want to steer clear.
I do think there are good endometriosis excision surgeons who can help, but unfortunately they are few and far between, out of network and costly.
Wishing you luck on your journey.
Much LOVE,
Aubree.
You have no idea (actually you probably do) how much I needed to read this today. I spent 20 years struggling with endo, I’m only 32…but I mean really do you ever stop struggling with endo?
I was blessed enough to be able to go to the Endo Care Center in Atlanta and Dr. Sinervo.
It has been almost 2 years since I had the endo excised, a hysterectomy, and my ovaries removed and just within the last few weeks have I actually started to confront all of the psychological ramifications of the disease. Resentment, anger, mistrust, confusion, fear of it returning, etc.
I have my first appointment with a psychologist today.
I’ve had EndoWhat at home for about a month but I can’t bring myself to watch it yet, I know its going to hurt.
Thank you for sharing your story, its good to not feel alone, and from the bottom of my heart I am so sorry you have to deal with this disease. All of you ^^
Stephanie
Hi Stephanie –
It’s great to hear that you are taking steps to confront the darkness. I do believe that’s a necessary step in moving forward. I hope that you can find some healing with all that you’ve been through.
Sending LOVE,
Aubree.
Hi Aubree,
Thanks for sharing this. It comforts me to know that there are other women out there that have lost faith in various aspects of western medicine. Though I haven’t been struggling with endo for long, I learned rather quickly just how eager most doctors are to treat symptoms, not the problem. During the past six months I’ve received terrible advice from doctors including keeping my Skyla IUD, which according to the company’s pamphlet – shouldn’t be prescribed to women with endometriosis. In fact, I had never had deep pain or cysts until I that IUD, but not one doctor believed me. Rather, they told me to wait it out and keep it. I dealt with debilitating pain for almost two years and constantly took ibuprofen to get by. Finally, I had to tune out advice that didn’t sit well with me and it’s helped tremendously. It is incredibly important to be your own health advocate, empower yourself with knowledge, and find a treatment plan you’re comfortable with. Endo sucks, but the way you’re treated during recovery shouldn’t. Thanks again for sharing this and for being such a strong advocate for all endosisters.
Hi Rachael,
I’m sorry you are dealing with this too. I think it’s important to understand that the doctors do what they can with what they’ve got, unfortunately a lot of the options offered for endo are damaging.
I agree that it’s so important to tune into your body, get quiet and in touch your internal guidance, that’s where the answers lie. If something doesn’t feel right, then it probably isn’t. I hope that you find a route that works for you and that you get that IUD out!
Sending LOVE,
Aubree.
I wish you a ton of luck and peace and happiness in your journey.
I too had enough of doctors and miscarriages etc.
Finally last year after several surgeries I found Dr Mangal in Houston, Tx and Dr Mathias. Dr Mangal handles the surgical side of things, Dr Mathias the diet. I had a full hysterectomy, colon resection due to lesions and bladder repair also due to lesions. On a new diet some meds and now bioidentical hormones and I feel better than I did when I was a kid. I cannot explain enough how much Dr Mangal gets it, as a man as a doctor as a human he gets it. Sex was painful, he understood and was emotional saying you should never have to go thru any of this… He’s amazing. One of the best endometriosis surgeons and educating doctors out there. Your first appointment you watch an hour long video about endometriosis and what happens in the body. He suggests to bring spouse so they can learn and understand.
He’s amazing. Please seek him out. There are so many ways endometriosis can hurt our bodies. He’s seen cases of it on the brain stem, behind the eyes etc. have to get it under control before it travels too far and causes damage that cannot be undone.
Warm hugs and hopeful for healing for you.
My surgery was Sept 2015 I am almost a year post and I feel phenomenal.
Best to you.
Hi Joy,
Thanks for sharing. It’s good to hear that you found a good, caring doctor. I know that they are out there. Sending LOVE.
Aubree
Aubree, I’m not sure where you live, but if you live in the US, you can get your thyroid hormones checked via a standard, reputable, mainstream laboratory without having a doctor’s order for it.
A few years ago, I got a series of my own blood tests done (for thyroid, ferritin/iron, vitamin D, and many other things) in this way, via several online companies.
I am not sure if you allow for company names to be given in your comments section (I have nothing personally to do with any of those companies), but a few of the ones that I used for getting my own bloodwork done were: PrivateMDLabs, DirectLabs, CanaryClub, LifeExtension.
The tests are conducted by the very same labs, such as the huge national chain LabCorp, that conduct the tests that my mainstream doctors order for me.
Some of the tests are not expensive at all, costing something like $25-40, and you can buy different groups of tests offered together for a discount, such as a female-health overview of 6 bundled tests for $99 or $125, that kind of thing.
I think there are 3 states in the US where you aren’t allowed to order your own blood tests, but most states allow it.
These companies also often have coupon codes available, to save even more money. Searching around a bit online often reveals relevant coupon codes.
The few that require “membership” to use their organization for blood testing, like CanaryClub and LifeExtension, sometimes have time periods in the year when they don’t charge for membership or it’s at a reduced rate like $5.
And the other 2 companies I mentioned (plus several more in the country no doubt) don’t have a membership program at all and ordering is open to everyone.
The blood testing I did on myself really helped save my health in the end — it finally led to my being taken seriously by doctors (because my dismissed complaints were finally objectively proven by those lab results, esp. for a couple of things which they didn’t consider that it was even worth testing me for), and the results directly led to my having 2 urgent operations for previously-undetected tumors in different parts of my body.
Be sure to read up on which thyroid tests it’s good to do — there is an array of about 4 tests that I think are the minimum recommended in order to get the whole picture.
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Of course, that doesn’t solve your reluctance to go to a doctor, but at least you might get some peace of mind if you find out that your bloodwork is normal,
or, if something comes back as abnormal, you may find that the possible medical seriousness of the situation would help you overcome your reluctance to have a medical consultation.
Another thing you might do is try to make an appt. with a nurse practitioner instead of a doctor — in some states they are allowed to set up their own practices, even — which might make for a better experience.
Hi Dory – Yes. I am aware that I can order these tests to self administer, but it doesn’t do me much good if medication is needed for my thyroid, which I’m pretty sure it is. Then I end up paying twice 🙂 Eventually I’ll suck it up and make an appointment to see my GP.
I relate to the mental and physical trauma of those visits. It disgusts me that the majority of the women I have spoken with do not have pleasant experiences with their gynecologists. This is exactly why I feel so driven to become a midwife with integrative health background. I want women in all stages of their lives to have the personal care that they deserve.
Hi Makenna – That’s amazing that you are becoming an integrative midwife. What a gift to be able to bring new life into this world and help keep both mama and baby healthy. Sending LOVE.