March is endometriosis awareness month

March is Endometriosis Awareness Month.  I was struggling with what to blog about when I came across the Endometriosis Awareness Month Challenge 2020 on one of the Facebook groups I follow (Endometriosis & Me). I’m really not a fan of all of the silly “challenges” that keep popping up on social media. Most of them are dumb and not challenging, but I think this one actually is a true challenge. It’s hard living with an embarrassing and invisible disease. Unlike many other ailments, no one wants to talk about your raging period and terrible cramps. Gross, right? But, I will talk about it. The stigma surrounding menstruation needs to end. 

Instead of posting once per day as the challenge suggests, I will answer all the questions now—with only few sentences each because no one wants to spend the rest of their evening reading this blog. LOL So, here goes…

1.       My diagnosis… I’ve never bothered to ask which stage of endometriosis I have. All I know is that it’s pretty severe and it’s caused my infertility.

2.       Endometriosis means… that my daily life is constantly interrupted by my period and all its side effects (which can happen at any time, not just during that “time of the month”).

3.       Surgeries... one laparoscopy to remove the cysts. I have pictures if you want to see!

4.       What helps me… coffee.

5.       My symptoms are… heavy flow, debilitating cramps, really bad headaches, nausea, depression & anxiety, bloating, and constipation.

6.       My symptoms began… pretty much as soon as I started having periods.

7.       Medications I’ve been on… I’ve been offered Orilissa but decided against it after researching the medication and its side effects. I am currently taking Hydrocodone/acetaminophen for pain. Yes, I am aware of the opioid epidemic. No, I’m not an addict.

8.       Treatments I’ve had… just the one surgery. I haven’t been offered or considered “alternative” medicine/treatments.

9.       What I knew about endometriosis before diagnosis… nothing. It wasn’t treated as a “real” disease until a few years ago.

10.   Endometriosis makes me wish… I was postmenopausal.

11.   Distractions from the pain… when I take an FMLA day off work, I usually lay on the couch with my dogs and read or watch television (one of the rare times that I actually watch TV!).

12.   My first symptoms… having to go home from school because my cramps were so damn painful (I could barely walk down the hallway without doubling over in pain and concentrating on my lessons was completely out of the question)

13.   People that help me… I haven’t really asked for help (as in physical aid) so I’m not sure.  

14.   My pain level… funny story… after my first ultrasound (to get a view of just how bad it was in my uterus, NOT for pregnancy), my OB-GYN said, “Girl, you have the highest pain tolerance of anyone I’ve ever seen. Any other girl would have come to me for treatment years ago. How did you even handle this?” Yeah, I’m a badass.

15.   Things that make me happy when I struggle…knowing that I’m approved for intermittent FMLA so I can stay home from work and take it easy.

16.   Endometriosis sufferers who inspire me… Padma Lakshmi. Brandy Higgins Lytle (owner and founder at No so Mommy… blog and online community).

17.   Something that comforts me…that endometriosis is, for the most part, a recognized disease now. I have resources and a community to turn to if/when I need support.

18.   My scars…one on my belly button from the laparoscopy (it’s pretty gnarly).

19.   Other illnesses I suffer with…nothing else that’s been officially diagnosed

20.   Why I raise awareness…women shouldn’t be embarrassed by their periods… a natural biological function.  If you can talk about your weird rash, that one time your got food poisoning and the contents of your newborn’s diaper, you can talk about menstruation.  

21.   Support groups… I’m not a part of any actual support groups but I do follow a few hashtags and groups on social media. Not so Mommy, Hilariously Infertile, EndoMEtriosis, etc.

22.   Time until diagnosis… I was diagnosed in 2015. I don’t remember when I started having periods so I can’t do the math but I assume it was probably a decade or so.

23.   Physical transformation…weight gain; endo belly is real, guys. I am constantly bloated and uncomfortable.

24.   Living with invisible illness…isn’t great but is manageable. Once I acknowledged that I had a legitimate  illness and started seeking help, it became much better. It all starts with stepping out of your comfort zone, asking questions and not being afraid of being judged.

25.   Daily impact…I know it’s a long way to scroll back up but refer back to #2 & #5.

26.   Positives of the disease…my OB-GYN and employer actually believed me when I talked to them about having endometriosis. I’ve heard that is very rare so I must be one of the lucky ones.

27.   Endometriosis in 5 words… absolutely DREADING everything about my period!! (Okay so that’s 6 words, my bad)

28.   My achievements despite endometriosis… RagsReborn Gifts!!! Being able to run a small business despite the pain and anxiety (let me tell you, participating at a craft show while on my period is no small feat)

29.   An endometriosis myth…Getting pregnant will cure endometriosis. Well, that’s cool but did you know that endometriosis causes infertility so how do you expect me to get pregnant? Ugh.

30.   Worst medical experience…my former OB-GYN (Dr. Robin Mikel) accused me of opioid abuse when I explained my pain level and asked for her to prescribe a higher dosage of ibuprofen. She didn’t even stop to think that I might have endometriosis or any sort of disease at all. She just saw a young girl (I was in my early twenties) and assumed I was a recreational user.

31.   Best medical experience …after my uncomfortable appointment with Dr. Mikel, I immediately tracked down my pervious OB-GYN, Dr. Shelia Newcomb (she left Integris Women’s Health to go to a private practice and Dr. Mikal was her replacement.) That is when I got my diagnosis and treatment options.

March is Endometriosis Awareness Month

I usually have tons to say about Endometriosis Awareness Month but this March, I'm actually not that compelled to jump on my soapbox. I actually don't need to write a lengthy blog post because other strong women are sharing their stories and educating the public. And guess what? Endometriosis is finally being recognized as a legitimate disease (and not just stereotypical "woman problems" that make nice girls turn into "super extra whiny b*tches" during "that time of the month"--all things I've personally been accused of by friends, coworkers and total strangers). Thanks to numerous celebrities and websites like SpeakENDO (https://www.speakendo.com/), more and more women are speaking up and speaking out. I actually heard a national ad campaign by SpeakENDO on Pandora recently!

I've always been vocal about my diagnosis but I know that a majority of other women are too embarrassed to speak freely. Even though the disease is being recognized more & more, there is still a stigma surrounding it.
       But why? It's 2018 for Pete's sake!!
              Every other disgusting disease is discussed openly, so why can't I tell you about my menstrual cramps when you ask why I cancelled on our lunch meeting?
              How come I have to force a fake smile when I'm actually feeling kind of gloomy?                           And why can't I just go home to change my pants because I bled through my pad?
I can't figure out a good answer to those questions so I'm not going to hide in the background and pretend I'm okay when I'm really not. No one should have to stay silent when they are hurting. Healthcare professionals need to know that endometrial pain is real. Upper management needs to allow for employees to take time off work to rest from cramping and heavy bleeding. Peers need to forgive their friends if they cannot fulfill their commitments due to symptoms of the disease. And those who have endometriosis need to stop being too ashamed to talk about it.

Judge me if you want to but I'm going to continue to #SpeakENDO for my misunderstood pain and frustration. Not only will I speak up for myself but I #SpeakENDO for all women. If you too  are affected by this disease, I encourage you to also spread knowledge and awareness.

March is Endometriosis Awareness Month.

I feel like it is my responsibility as a sufferer of severe endometriosis to spread awareness through my writing this month, but I am at a loss of what to blog about. I have a pretty good hunch that you either already know what endometriosis is (thanks to celebrities like Padma Lakshmi, Julianne Hough, Halsey and Lena Dunham) or you don't care what this strange-to-pronounce-disease is. Either way, I won't bore you with facts and medical research. (If you want to learn what endometriosis is, here are some helpful links https://www.buzzfeed.com/laraparker/things-women-with-endometriosis-want-you-to-know?utm_term=.yppNG5bpY#.ljDb3paBv and  http://www.endochallenge.com/2017) Instead, I will share my small victory story.

I was diagnosed with endometriosis a few years ago but never spoke up because there was no way to win. If I complained about it in public, it would just add to the assumption that women are cranky bitches during that time of the month and we are all just being overly dramatic. I kept quiet until my place of employment implemented a new sick time policy. It's a pretty lengthy policy and since I don't have our employee handbook with me at the moment, I will paraphrase.

Too many employees were calling in "sick" (but in reality, they were just playing hookie). Management and Human Resources wanted to get this under control so employees are not allowed to call in sick anymore. In order to use paid sick time, employees are now required to give 24-hour notice of any absence due to medical reasons. I don't know about you, but it is my belief that there is no reason for me to be at work when I am unfit and will not be a productive employee so I ignored this new sick time policy. I continued to skip a day of work when my cramps were too painful or I would go home early if my period was too heavy. I went undetected for a while but, eventually, I was summoned to my manager's office.

Luckily for me, and unlike a majority of the population, my manager actually understood that endometriosis is an actual medical disease!!! \(^_^)/ Hallelujah! She didn't accuse me of abusing my sick time privileges or tell me that painful periods are just another part of womanhood. She asked if I had ever considered applying for intermittent FMLA (Family Medical Leave Act).  I contacted both Human Resources and my OB-GYN doctor and after a swift process of paperwork, I am now approved for intermittent FMLA leave. Once a week each month, I am able to skip two to three days of work with no questions asked. While this does not cure my endometriosis or repair my reproductive system, I am still calling it a victory.

So here is the takeaway from this blog... endometriosis is a painful medical condition. Period. (no pun intended) Chronic abdominal pain is not normal. Heavy debilitating menstrual cycles are not normal. If you suspect that you are a sufferer of this disease, speak up and get whatever aid you need. I know that a majority of the people you talk to will not believe you, misdiagnose you and maybe even laugh at you but that is no reason to stay quiet. If I had spoken up to my manager sooner, I could have been on intermittent FMLA leave probably two to three years ago. To my fellow endo-sisters, if you continue to speak up, eventually, you will find that one doctor, that one friend, that one person who understands what you are going through and is willing to help. By the way, I am that one friend so if you want, please feel free to message or comment... we are all in this together!