I was officially diagnosed with endometriosis in a cold doctor’s office in the fall of 2011.
To this day I still remember the feeling when my doctor showed me the images of the endometrial lesions that had been growing on my uterus, bowels, and bladder. I just stared in shock thinking, “that was inside my body?” As much as it was scary to be handed an official diagnosis, it was also enlightening. I felt like a weight had been lifted off my shoulder (and off my uterus). Finally knowing what I was feeling was valid. Finally being told, “yes, you’re right. There IS something wrong here.”
Fast forward six years, one baby, and ton of menstrual cycles later and I am here…
Attending BlogHer17 at the Hilton Bonnet Creek in Orlando, Florida.
Due to my blog on Endometriosis and PCOS, I was invited to attend a special session called “MeInEndo,” a campaign to promote awareness of endometriosis. Standing in a room full of women with endometriosis, adenomyosis, and other forms of “my uterus is jacked up” disease, was such a breath of fresh air. In that moment I realized just how many women actually have endometriosis, or at least know someone who has the disease. Though I have connected with many endosisters online, I have never physically met so many endosisters in one room.
We are the 1 in 10
Did you know that 1 in 10 women suffer from endometriosis? Some of us in the session were chosen to wear a green participant T-shirt and stand up to read a line or two. In the room each table sat nine women and one woman wearing the bright green participant T-shirt. This was to highlight how there is one of us endosisters for every ten everyday women. As the session began and Dr. Rebecca Brightman, Board Certified OBGYN in private practice in New York, took the stage, I looked around the room at all the other endosisters.
We came from all walks of life. Some of us were old and some of us were young. Some of us were tall and some of us were short. Some of us were skinny and some of us were large. Endometriosis certainly didn’t have a certain “look.”
Dr. Brightman spoke about how in her practice she began noticing an increase of patients with endometriosis and how many women continue to go undiagnosed. She feels passionately about women’s gynecological health and got involved with this campaign “MeinEndo” to help spread the word about endometriosis and take away some of the stigma of talking about this disease. In my opinion, the saddest part of endometriosis is just how many women walk around with endometriosis and have absolutely no idea that they have it.
I had the honor to interview Dr. Brightman on Facebook Live – Watch It Here.
Just Tough It Out
Women don’t really talk about their periods…unless you give them a platform to do so. I remember I taught a workshop for a Red Tent Women’s Circle in Hollywood, Florida. After the opening meditation, I invited each of the women to speak on their first period. There were only 10 of us in the room but there was instantly an explosion of conversation. There was laughing, there was crying, there was bonding. It was beautiful. When you invite women to flow and speak on their pain, they WANT to share.
It’s unfortunate to hear how many women are just told to “suck it up” or “deal with it” when it comes to menstrual and period pain. One of the biggest signs of endometriosis is a painful period, but because many women have been told to just “tough it out,” there is a lot of confusion as to what is too much pain, and what it a sign of weakness. Let me be clear, endometriosis sucks! It’s super painful and at no point should you feel that your painful periods are just something you should have to endure.
Here’s What to Look For
During the MeinEndo session, Dr. Rebecca Brightman spoke about noticing and looking for the symptoms of endometriosis. Symptoms of endometriosis include:
- Pain in lower back, abdomen or pelvic region during your period OR all month long
- Pain with sex
- Feeling exhausted or weak and unable to participate in day to day activities
- Painful bowel movements or painful urination
- Heavy menstrual bleeding
- Feeling sick, faint or vomiting during your period
- Bleeding or spotting between periods
- Difficulty getting pregnant
- Having a close female relative diagnosed with endometriosis
Sharing these symptoms is very important because there is nothing “normal” about this symptoms for you to endure. Instead, if you do have these symptoms talk to your doctor about the possibility of having endometriosis. With endo you have to be your own advocate, so don’t be afraid to be pushy.
Talking to Your Doctor
It can be intimidating talking to your doctor, especially if you are not really sure if you have endometriosis or if it’s “all in your head.” Dr. Brightman shared a doctor discussion guide that you can download from the MeinEndo website. In the guide you are given tips on what to ask your doctor about and how to be prepared for your next OBGYN visit if you suspect you have endometriosis. I thought this guide was super helpful! I wish I had something similar to this when I went to the countless OBGYN appointments and just left with another birth control pill. I was very lucky to find someone who finally listened to me when I walked into the Reproductive Associates of Delaware. I know that is not always the case.
My best piece of advice is to listen to your body and don’t ignore signs! If things don’t feel normal, stand your ground. Demand tests and demand to be taken seriously. At the end of the day, this is your body and you know best.
On Going Support
Being diagnosed with endometriosis is hard and it’s really easy to start feeling totally alone (I know personally, I felt like I was just an alien in a human body. I felt like no one understood what I was going through). But remember there are millions of endosisters around the world and the more we connect, the more we can support each other when going through the tough times. That’s why I started the Endometriosis and PCOS Natural Healing sisterhood. Join us on Facebook and be part of a growing, supportive online community.
In addition, I would like to help you one-on-one with the emotional challenges of Endometriosis. As a Spiritual Life Coach for EndoSisters, I focus on healing the emotional wounds that we hold onto in our wombs. Almost all of us have some kind of emotional root that our endo is tied to. If you would like to work with me one-on-one for 6 weeks of ENDO HEALING, contact me now.
Hang in there! Be gentle with yourself! Love yourself!