Finding Someone That Believes You
I just watched the film Endo What? and lost my shit for a minute. A few tears streaming down my face quickly turned into an audible sob. The beginning of the film shares that women with endometriosis have to see 7-10 doctors before they are diagnosed. 7-10. I don’t even remember how many doctors I saw before I was diagnosed, but 7-10 definitely sounds about right.
The saddest thing is that some women never get to that 10th doctor. Some women stop after just a few, because no one believes them or they aren’t able to afford it or both. They are made to believe they are crazy, too sensitive, or the symptoms they are experiencing are just “normal” period things.
BUT
Excessive bleeding is not normal.
Intense pelvic pain, cramping, lower back and abdominal pain is not normal.
Painful sex is not normal.
Blood clotting is not normal.
Chronic pain is not normal.
Chronic fatigue is not normal.
Painful diarrhea and constipation is not normal.
Urinary frequency, retention, or urgency is not normal.
Not being able to get out of bed on your period is not normal.
Most women aren’t diagnosed with endometriosis until their late 20s (I was 28 when I was diagnosed with Stage 4) and many much older than that. We need to change this.
If you experience painful periods or have any of the symptoms above – I encourage you to not only find a doctor that believes you, but one that wants to work with you to actually get better (and not just with pills and drugs).
I had the HUGE honor to interview the founder of The Institute Of Functional Medicine (Dr. Jeffrey Bland) at SXSW last weekend. His website includes a tool to find a doctor in your area that spends time with their patients and actually looks at all the factors that affect your health (genetic, environmental, and lifestyle). Because so much of the pain we feel as endo suffers is deeply impacted by outside factors too. If you aren’t able to find a doctor on his list, please keep searching. Talk to the women in your life (on and offline) who they see, research specialists, Google the crap out of it until you find someone for you.
This month is Endometriosis Awareness Month.
Celebrate it by making a plan this month to find a doctor that believes you and get the help you deserve.
Love,
J
P.S. I’m working on getting the director of Endo What? on the podcast, stay tuned!
In the meantime, you can watch the trailer here.
11 Comments
Alissa
March 18, 2016Thank you for this post. I have known women in my life with deep, dark depression due to their chronic pain. It is scary and can make you feel hopeless. Having a diagnosis helps but having a doctor who can help you actually recover is so important. I will be sure to pass this along as someone in my life is dealing with terrible IC/Pelvic Wall Dysfunction. Hopefully someone on that website will have some real answers.
Jessica
March 23, 2016Thank you so much, Alissa! Appreciate you sharing.
Susie
March 18, 2016Beautifully said! Love to all the endo women xxx
Jessica
March 23, 2016Susie, love to you too!
Katie
March 18, 2016This post and message should be shared everywhere, with every woman (and every person). I know they’re just doing the best they can, but it blows my mind that doctors in our country don’t have the knowledge, resources, or maybe even just peer encouragement to diagnose major issues. One of my closest friends is currently in remission from a nasty stage IIIC uterine cancer…that took forever to be diagnosed (and another cancer that wasn’t even diagnosed until she got her damn hysterectomy!). Infuriating. So glad she had the self-trust to go with her gut….and so thankful for people like her and you who encourage others to do the same. Love you, girl.
Jessica
March 23, 2016Katie, so well said. Thank you. Love you too.
Katie Kotler
March 22, 2016Hi Jessica,
I found you through Lena Dunham’s Instagram post about you.
I have stage 3 endometriosis. I’m 31 and was diagnosed last year. I had a laparoscopy this summer to remove a bunch of stuff. I was put on Visanne, which is progesterone, to put me in early menopause. Not having my period was great, but the side effects were so horrible that I went off it two months ago.
I just had a regular period that was painful and am getting nervous. I like your diet suggestions. I was wondering if you have tried and could recommend any alternative health treatments? I was doing acupuncture before the laparoscopy and have recently seen a naturopath, who suggested natural progesterone.
Is there anything else I can do?
Thanks,
Katie
Jessica
March 23, 2016Katie, I’m so sorry that you’re dealing with all of this. It sounds like you are taking some great proactive action and seeing a naturopath. I would HIGHLY recommend checking out the new film Endo What? It is coming out in April and in the meantime, I interviewed the director. She gave just great information. There is also a FB group she said is incredible (I just signed up for it). It’s called Nancy’s Nook Endometriosis group. I hope this helps a little. I will also say that making myself exercise when I can has really helped me leading up to my period. I hope to see more of you around here and really hope you get this pain in check. Love!
Pastaveia
March 25, 2016Thank you for sharing the trailer with us Jessica! I personally do not have endo but will do everything in my power to share the awareness and support the cause. No one should have to see 7-10 doctors or be shamed for their symptoms – or questioned about their mental health state.
Cait
April 22, 2016Hi There!
Hope you are doing well! I was just was diagnosed with/had surgery for endometriosis. Traditional hormone therapies make me depressed, so I am trying to tweak my lifestyle!
You’ve mentioned avoiding meat because of the excess hormones. How do you feel about “hormone free” meat and dairy? Do these options still negatively affect endo?
Thanks so much!
CM
Jessica
April 22, 2016Cait, I’m so sorry you were diagnosed…but I’m also really happy that you KNOW now what’s going on and it sounds like you’re doing something about it. For me, the meat and dairy didn’t have as much to do with hormones and about how they made me feel. Every single body is different, but if you don’t want to take out dairy and meat…maybe shoot for dairy first and stick to really great hormone free meat. Dairy is crazy inflammatory, whether you have endo or not. I just recently did an interview with Shannon Cohn from Endo What on the podcast. I highly suggest checking out that film! It’s all about “alternative” therapies (that don’t involve drugs) that might help your symptoms. Hope to see you more around here!