About Endo Sucks!
Endo Sucks! is a support network for women with endometriosis, as well as the friends and loved ones who support them. We connect on Facebook,Twitter, and this blog.
About endometriosis:
Endometriosis is a sneaky disease. Some women may be riddled with it but feel little pain, while others have a few implants and suffer daily. Its cause is unknown, its cure is undiscovered and its pain immeasurable. That is why I describe us as survivors: Every day we lose in bed, wear a heating pad on the job, take another codeine, try a new diet or birth control and live with infertility, but still work, pay our bills, take care of our families and strive for a normal life is a day of survival.
Endometriosis also is amazingly underdiagnosed and misdiagnosed. The only way to diagnose endometriosis is via laparoscopy, yet many women I have met have been “diagnosed” based on a pelvic exam. Others have never even heard of the disease yet live with the symptoms for years. Not happy to be on its own, endo also brings with it heavy cycles, irritable bowel syndrome, pain and swelling in the abdomen, and often is connected to a higher likelihood of hernias and migraines.
About Endo Sucks!:
I founded Endo Sucks! because, after so many years of telling my story, recounting my dozens and dozens of doctor’s visits and surgeries gone wrong, explaining the pain, exhaustion and pain med stupors, I realized the one thing I always ended up saying to the “I’m sorry” ‘s was “Well, endo sucks!” An understatement for sure, but true nonetheless.
I am 28 and work in journalism and as a labor & birth doula. With more than six years of professional medical experience behind me and 16 years of battling my body, I know what it means to have endometriosis, adenomyosis, interstitial cystitis and polycystic ovarian syndrome (PCOS) from both sides of the table. I will be drawing from other networks and medical sources as we go along.
I am an ongoing endometriosis, adenomyosis, IC and PCOS survivor. Endo Sucks! seeks to provide a non-judgemental network for fellow survivors of all ages and their loved ones in an effort to understand and overcome this daily disease.
Contact Endo Sucks!:
If you have questions, concerns, kudos or comments, please e-mail me at endosucks@gmail.com. Any questions are welcome and I will be happy to answer them to further the awareness and understanding of endometriosis.
1.
knowledgetoday | March 24, 2009 at 4:41 pm
I love your site. Keep it up !
2.
endosucks | December 10, 2011 at 11:05 pm
Thanks!
3.
Maria | March 26, 2009 at 5:16 pm
What a beautiful site you have here. I am so moved by your will to survive and to help others out there (like me) who survive on a daily basis. Endo Sucks….but it reminds us that WE freakin’ ROCK! Thank you thank you thank you for sending that message.
4.
endosucks | December 10, 2011 at 11:05 pm
We rock. You rock!
5.
Mary Beth Jelinek | October 5, 2009 at 5:05 am
Dear Chanel,
With all the pain you have chosen a positive path to help guide others through your experiences.Your strength is an inspiration to me every day.
I’m so very proud of you.
Love,
Mom
xo…
6.
endosucks | April 16, 2011 at 12:10 am
This is my awesome mom, folks. Your support means the most!
7.
2berrys | October 27, 2009 at 1:56 am
Glad I found you. I have a history with endometriosis too. I’ll be checking back…
8.
endosucks | December 10, 2011 at 11:05 pm
We will be so glad to have you here.
9.
Chef | March 15, 2011 at 3:15 pm
Best wishes and keep up the good work….you are welcome to any content from endo times…
Thank you,
Chef
10.
endosucks | April 16, 2011 at 12:11 am
Thank you so much! I will take a look and always let you know before I borrow content, as I hope you will do the same for me. Cheers!
11.
Nicola Porter | September 5, 2011 at 5:20 pm
I am looking for an specialist in endo surgery. I am in Jacksonville FL. Any recommendations?
12.
endosucks | December 10, 2011 at 10:59 pm
Well, there’s the rub.
I had my second lap with a surgeon I now call Dr. Dick in 2006. He’s widely considered the best in the area. Unfortunately, he’s also a massive asshole and nobody would touch me in Jacksonville after finding out that he did my lap. This man had the chutzpah to yell at my mother and tell me that I have “a love affair with being sick” (his words!) and that I needed a psychiatrist, not surgery, because he CURES ENDO with his surgeries and any pain I was feeling was in my mind.
I also had been seeing a PCOS specialist in Jax that was going to reluctantly a lap in late 2009/early 2010, but only after I saw a urogynecologist, a doc at Mayo (which insurance doesn’t cover), and a doc IN SOUTH CAROLINA and if they all agreed that I needed a lap. I saw the urogyne in Jax, and he missed the fact that I had scar banding in my bladder and failed to diagnose my Interstitial Cystitis. I drew the line with this guy.
In summer 2010, after finding a doc in Warner Robins, Ga. (a 5-hour drive each way) and a dx of IC and the immediate discovery upon ultrasound of adhesions having twisted and pulled my right ovary out of place and stuck it to the side of my uterus and to the pelvic wall (and the easy sight of endometriomas — endo that’s invaded the inside of the ovary), I had surgery. He did a lot, such as having to remove my right ovary and detangle my left sigmoid colon from itself due to adhesions, and plenty I *didn’t* want (a round ligament suspension that did nothing to help me). Now the office keeps cancelling my late Friday afternoon appointments, which is the only time I can drive up to see him. Wonder why?
If you email me, I will give you all the names of people I have seen in Jax (ESPECIALLY DR. DICK!). I’m trying to keep real names off this blog for self-preservation. That list is available to all who ask.
So honey, I don’t know how to help. Let’s put our heads together and see who we can suss out of value in this area.