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.