In The Meantime

A month ago I trekked to New York City to see an Endometriosis specialist. I blogged twice that day, feeling excited about what I found out during my visit. I didn’t feel like my life completely and suddenly changed, but I did feel a small weight lift in just knowing that I have Endometriosis. Putting a name to the pain seems to be something us humans need to do, especially when it is chronic. I wasn’t surprised I felt the way I did, but I also wasn’t surprised that I didn’t feel completely different.

I have become so skeptical over the past 15 years to the point where I rarely do what anyone says, so you can imagine how I might react to a doctor (a surgeon at that) telling me he’ll “clean me out” and then I’ll be “good to go”.

Sure, surgery has felt like the only option as far as long term results go, but I’m still skeptical. Surprised? šŸ˜‰

I’ve gotten this far in life without my body being cut open, so I not only feel skeptical but extremely cautious about just jumping into it and thinking it will fix everything. Is there not another way?

Through the several people I have met with Endo, stories I’ve read and medical texts I have poured over, it seems that it is simply just different for each person. A lot of us with Endo know that changes in diet are very helpful, especially when it comes to pain and inflammation. I, for example, have cut out gluten, soy, dairy (except grass fed butter), meat, alcohol, caffeine and processed sugar. I am a tailored vegetarian of sorts, and it has made a difference.

Natural remedies have also made a difference, including a castor oil pack recommended to me by my acupuncturist who has worked in fertility clinics. In fact, I have been lucky enough to have just started weekly acupuncture treatments with the aforementioned acupuncturist who has known me since childhood and done emergency treatments after painful episodes during my teen years. I have already noticed my anger and anxiety around the disease moving through my body to where I am fully feeling and experiencing it. I am working with my emotions instead of pushing them aside or back down into my body. There is definitely an emotional component that comes with Endometriosis.

The other shifts I have noticed since starting acupuncture are with my physical symptoms. I have not had to urinate as frequently (some Endo symptoms seem similar to pregnancy, but instead you’re pregnant with the spawn of Satan and not a human) nor have I had as many irritable bowel problems (I haven’t been diagnosed with IBS, but it’s clear to see Endo is causing it and who needs a ton of lame diagnoses anyway).

Seeing even these small improvements in a short time period has made me very curious about this disease and the non-surgical/non-synthetic methods that could be used to manage and possibly eradicate it. My body always responds quicker and better when I use natural remedies versus synthetic.

It makesā€‹ sense. Herbs have been used for healing purposes since forever. Chinese medicine is ancient. We are apart of nature, so why not utilize it to heal us?

From a more practical side, natural remedies are more affordable (at least in the United States) than a lot of synthetic options and most certainly surgery.

Because we do not have universal healthcare, things can be much more difficult when you do need prescription drugs, surgery or long term treatment.

Right now in this country most surgeries for Endometriosis are considered “experimental”, despite the fact that 1 in 10 women have the disease and that surgery is quite a common occurrence. Most women have to pay out of pocket for the surgery itself, with usually only the hospital stay and anesthesia covered by insurance. This leaves the patient with the highest part of the bill!

I was quoted by the office in NYC $25,000 for the surgery portion. The hospital stay would be about $5,000 and the anesthesia $2,500. But wait, there’s more! I would also have to have a physical, bloodwork and EKG all done at the hospital where the surgery would take place, which would be around $450. I would also need another consultation with the doctor (the first one was $625) and a visit with a therapist. I was not given any extra price points for this, but I really wouldn’t be surprised if it was not “included” in any of the aforementioned amounts.

After receiving all of this information in an email that looked like it was copied and pasted, I replied in a timely manner with several clearly asked questions. I did not hear back for what turned into weeks because I was too annoyed to call the office and find out what the deal was. Finally I had some adrenaline and called to see what was up. The person I was emailing with answered the phone and had in fact received my email, but somehow missed it at the time it was sent. So they started haphazardly answering my questions, but really seemed like they needed to get off the phone. Luckily I was thinking on my feet and continued to ask more questions to a point where I felt like I was getting something out of them. I felt like a spy interrogating someone. Sheesh.

I found out several things. One being that because I am not a resident of New York State I would have to pay out of pocket for everything. The doctor works out of network with all insurances anyway, so even if I were a resident it’s very likely that only the hospital stay and anesthesia would be covered (and maybe the pre-op tests). I could change my insurance from Rhode Island Medicaid to a plan I would have to pay hundreds of dollars per month for, but how much money would that really save me? It’s all water under the bridge at this point.

They also told me the surgical fee could be brought down to $20,000 depending on my case. Great (sarcasm). Is this some kind of lottery on women’s bodies? Who decides if my body is worth less or more?

I asked about a payment plan, but the company that used to offer this is no longer with them. So they just don’t offer that option anymore because I guess that was that.

So I asked what other people have done (to the best of their knowledge, which was obviously not much). They said most people just “come up with” the money (ok, so they rob a bank), do an online fundraiser like GoFundMe or charge it to their credit card (which means they have a great credit score and a card with a very high limit).

I asked about other specialists, anywhere in this big-ass country, and was told that they are all basically like this doctor in NYC. They even said he is on the cheaper end (to the best of their not-so-great knowledge).

I told them that I don’t think I can afford this and they apologized for not being able to help me more. Ha. Ha. HA. I said I would think about the information I was given anyway, and be in touch in a few months if anything changed with my situation. They hung up the phone by saying “see ya later”.

So, here I am with these options in front of me. Inevitable stress and invasive surgery or a potentially long journey of natural healing and personal growth.

I’ll just be over here eating some gluten free toast and drowning my sorrows in hemp seed oil (for real helps with cramps and inflammation though) in the meantime.

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Endo-ME-triosis

It has been one week since I saw Dr Seckin in New York City and my belief that I have Endometriosis was more or less confirmed (technically speaking Endo can only be confirmed when the tissue removed during surgery is analyzed – but the symptoms make it very obvious).

During this past week I have felt several different things, in stages, such as experiencing grief.

I have been trying to understand where theĀ meĀ comes into this disease. How has this disease shapedĀ meĀ in the course of 15 years (or perhaps my entire lifetime)?

Endo is a mysterious disease that hasn’t really been figured out yet. Where does it come from? Who knows. Is there a cure? Not yet. Is is common? YES. 176 million women worldwide and 1 in 10 in the United States have it.

There is this idea that if I am “cleaned out” I will be better. I will be rid of the disease. I would have to haveĀ deep excision surgery for this to be so, but it is expensive (out-of-pocketĀ $25,000!!!)Ā and no Endo surgery guarantees that the pain will go away or that the disease won’t come back.

How do I manage and live with it is what I keep coming back to. Even if I have surgery, will I still technically have the disease in my body for the rest of my life? How does that defineĀ me?

Tuesday, fucking Tuesday!

Part II of my trip to NYC. Once again from the train (thanks for the free, good WiFi Amtrak):

I have stage one Endometriosis (out of four – four being the worst)! It feels so good to say that.

After 15 years of bullshit, Dr Seckin told it to me straight. I have it, he can clean it out with deep excision surgery (not theĀ all too common and harmful laser) and then I should be good to go.

Of course he can’t guarantee that it will never come back during my life time, but I have lived with it for 15 years too long. If I can have 15 years pain free after surgery I’ll take it!

It could be done as soon as May or June, but financing is the tricky bit. I’m getting all the info sent over from the office tomorrow, so I don’t know the cost yet. But he works out-of-network with all insurances, meaning you have to have good out-of-network benefits for any or all of it to be covered. I have Rhode Island Medicaid, which has been great in Rhode Island, but obviously will not work whatsoever in New York. So, I could likely change to a plan that might cover some of it, but how much would that cost per month and what would it cover?

I’m not worried about any of that. I’ll figure it out. I have followed my gut and stuck to my guns on this journey thus far, so I will continue to do so.

Fucking Tuesday for the win, am I right?!

Tuesday

Good things happen on Tuesdays. Airfare is cheap. It’s a good day to travel. It’s an unassuming day. People are just getting on with things on Tuesday.

For me, this might be the most important Tuesday in 15 years. I am on the train to New York City to see the Endometriosis specialist Dr Seckin.

I get really anxious when I go to the doctor. The thing with me is, is that I tell doctors everything that is going on and suggest what it might be. I dare say I know more than them when it comes to my health. In fact, I was the first person to figure out I might have Endometriosis, years before a doctor even used the term. I’m agressive.

After years of feeling like I was not being listened to by most medical professionals, I adopted this behavior. I feel that it got me to where I am today, on this train, going to see a specialist.

But every time I see any doctor I get anxious. I’ve been let down so many fucking times I barely have any hope left each time I have to talk aboutā€‹ my symptoms again.  Will they listen to me this time? For real? Will they just tell me how to manage my “condition” for the next 6 months, next year, next five?

I hope today is different. I hope today is the most important Tuesday in 15 years.

Pain in the Uterus!

It seems as those women are expected to endure pain. From high heeled “shoes”, to underwire bras, to corsets (the original underwire bra), to form fitting clothing that cuts off your circulation. We’re pretty much tough as shit because of this, so what’s a little uterus or ovary pain, right?

My mom shared an astonishing article (here) with me about how a woman with extreme abdominal pain had to “wait her turn” at an EMERGENCY room in Brooklyn, New York, because the EMTs, doctors and nurses all down played her pain and they were overcrowded with patients. Lucky for her, her husband was there to advocate for her, as she was in so much pain she was left unable to barely communicate. That sounds like an emergency to me, emergency room personnel!!! And maybe that’s just it. We’re dealing with “medical professionals” who are not taking people seriously anymore. It’s like they think we enjoy coming to the emergency room just to mess with them and that nothing is ever wrong with the human body. If they don’t see blood spewing out of you, then tough luck. This woman was not even physically examined until aĀ male doctor clocked out and a female doctor clocked in right after, showing immediate disbelief at the situation. It turns out that the male doctor said “it’s kidney stones” and basically sedated her with pain killers. ItĀ turns outĀ she had something called ovarian torsionā€”the fallopian-tube twists, and cuts off blood. There was no saving that ovary. They had to take it out and they should have done so 14 hours earlier (the overall time this woman ended up spending in the ER)!

I have been lucky in my recent hospital visits to go to one specifically designed for women and all that goes on inside our nether regions. From one visit, I recall in my oxygen-high stupor, the male EMTs having never seen such pain from a female related issue and looking just as scared and baffled as I, the one with the heart rate of 46. The one female EMT looked calm and said she knew exactly how I felt. The female doctor who saw me did an ultrasound. My current (male) gynecologist doesn’t see a reason to do an ultrasound, MRI or CT scan to look deeper into my pain.

So, what’s the deal gents? Do you need to literally walk a mile in our shoes before you can take our pain seriously and provide us with better medical care? You’ve been warned, they fucking hurt.

Normalizing Discussion on Women’s Health

“Not a mother, just a woman. Not a wife, just a lover. Or am I just water?” – lyrics from an original song

I have never had an abortion.

I have never had a miscarriage.

I have never been pregnant.

I might not even be able to get pregnant.

I am happy about this.

I feel lucky.

I feel empowered.

I believe in honesty.

I believe in normalizing discussion around women’s reproductive organs.

That is why I’m here, writing this blog.

I believe we can all learn from honest, compassionate discussion.

No matter our political views.

So today I would like to talk about Planned Parenthood. About the personal experiences I have had there. I have noticed that there is a common misconception about what Planned Parenthood is and what services they provide.Ā Throughout my 15 years of possible Endometriosis, Planned Parenthood has always been a place of hope. It has always been a place where I felt listened to. Where I felt cared for.

I went to Planned Parenthood when I was uninsured and needed my annual exam.

I went to Planned Parenthood when I was insured and couldn’t find a gynecologist close to home.

I went to Planned Parenthood for affordable birth control when the only one my health insurance “covered” was $90 per month.

I went to Planned Parenthood when I was bleeding for three weeks straight and didn’t know why.

I went to Planned Parenthood to be screened for common STDs.

Essentially, I went to Planned Parenthood when I needed basic health care.

Sexual health care is basic health care.

Basic health care is a human right.

We need Planned Parenthood to stay healthy.

It saddens me that they are constantly under attack.

That women are being shamed as they walk into a Planned Parenthood clinic whether or not they are getting an abortion.

Men can go to Planned Parenthood too.

And free condoms are never a bad thing.

After all, don’t you want to plan if or when you enter into parenthood?

Why I March

The year is 2017. I started it off by turning 30. I have grown up in a society and time that has seemed to have a lot of freedom, rights and equality. Then why did I march on Washington on January 21st, 2017? Why did I need to?

For my health. Which, still, is being talked about by old white men in government as an issue. No, it is a right. A right that all humans deserve to have the first say in.

So, here I am. A 30 year old in the United States of America who has had to fight, advocate and march for basic quality of life healthcare since I was 15. Why did I need to?

Because I might have a very mistreated, hard to diagnose, not talked about, under researched women’s disease called Endometriosis.

For half my life I have experienced extreme pain during menstruation, almost lost consciousness more times than I can remember, been hospitalized with a heart rate of 46, developed chronic headaches, fatigue, pelvic pain and irritable bowel syndrome, among other things (yes, there are more symptoms). My overall quality of life has deteriorated because of this. I have spoken to many doctors in these 15 years, and not until recently did any of them bring up this disease. In fact, I self-diagnosed myself with it years ago, but again only recently learned more about how serious it is. Here are some of the things I have been told by doctors around the country, and even overseas, when I came to them with the above symptoms:

  • Have children and it will go away (told to me as a 15 year old and brought up again in my early/mid twenties – please note I don’t want children!)
  • Cramps are normal, some people just have it worse (Fuck you, doctors.)
  • Take pain killers for a week before and during your period to manage the pain (I am now more or less immune to pain killers, including prescription 800mg Ibuprofen. I guess I am Superwoman.)
  •  Go on birth control pills (sometimes continually)  to manage the pain (I have taken every dosage of pill, but still had attacks, though less frequent. I currently have a hormonal IUD.)
  • A diagnosis of dysmenorrhea (the medical term for painful periods – no shit, that’s not a proper diagnosis.)
  • Go on Lupron (a hormone treatment that tricks your body into early menopause – please note that I just turned fucking 30 years old, not 50.)

So, what the fuck is Endometriosis?

Endometriosis is a female disease in which the tissues of menstruation causing inflammation are found elsewhere in the body outside the uterus. It is associated with monthly menstrual cycles and is characterized by pelvic pain, heavy periods, prolonged bleeding, severe cramps, and pain with sex (dyspareunia).

Endometriosis is a painful reproductive disorder that affects 176 million women worldwide. The economic impact of endo is staggering: businesses lose billions of dollars each year in lost productivity and work time because of the disease. A leading cause of infertility and chronic pelvic pain, it has also been linked to other health concerns, including certain autoimmune diseases, fibroids, adenomyosis, interstitial cystitis, and even certain cancers. It is also one of the leading reasons for laparoscopic surgery and hysterectomy in the United States.

Here’s a visual component

So, 15 years later, here I am at 30 finally getting closer to receiving the care and treatment I should have had back then. I am lucky that I did not have a hysterectomy in my twenties. I am lucky that I am not currently going through menopause. But to go half your life without ever feeling listened to? That’s some major fucking bullshit right there.

Through a search at my local library for Endometriosis I came across a book written by Dr. Tamer Seckin, an Endometriosis specialist in NYC, called The Doctor Will See You Now: Recognizing and Treating Endometriosis (only just published in 2016, much to my surprise). I immediately requested it, only hoping to seek more knowledge on the subject, but knew from the first page I had to see this doctor. By the graces of my mother (who is paying the out-of-network costs because healthcare still sucks in this country, so what’s the point of my insurance?), I will have an extensive consultation with him in March, that could lead to surgery, which would ultimately change my whole life.

But not everyone with this disease has someone who can help them. I certainly didn’t think I did. There are not many specialists on the matter, and your local gynecologist will claim they know enough about it to “treat” it (as mine did), when in reality this disease is not being researched enough. In fact, some may say Endometriosis is what used to be known has hysteria in women.

In the meantime I am still dealing with my gynecologist, pleading my case for an MRI (which Dr. Seckin needs to rule out cancer if I need surgery). In fact, my gynecologist said today that he has no medical grounds to order an MRI, just an ultrasound (which I will have done with Dr. Seckin anyway). This is the same fucking asshole that told me there is an 80% chance I have Endometriosis. Is that not enough?

So, this is why I march. So that the women who were not heard and sent away by men to institutions, didn’t experience that for nothing. So that I don’t have to go through my asshole doctor to get an MRI covered by my in-state insurance (hello, universal healthcare) and save me an extra $800. So that all women have free access to birth control and abortion. So that we’re not stuck with a child we don’t want and so this beautiful planet is not overpopulated. I will continue to march for as long as I need to, but I honestly hope it doesn’t have to be for another 30 years. As my mother’s Women’s March on Washington sign read “I’m still protesting this shit?!”. So please, come march with me. Come bleed with me.