A place for endometriosis survivors & supporters, and all that goes with it.

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 30 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.

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23 thoughts on “About Endo Sucks!

  1. I love your site. Keep it up !

  2. 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.

  3. 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…

  4. Glad I found you. I have a history with endometriosis too. I’ll be checking back…

  5. Best wishes and keep up the good work….you are welcome to any content from endo times…
    Thank you,
    Chef

  6. I am looking for an specialist in endo surgery. I am in Jacksonville FL. Any recommendations?

    • 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.

  7. A big Hello, I am writing from Noosa, Australia. Thanks so much for the great post. It helped me a lot with my TAFE internet research assignment :)

  8. I’m so glad I found this site. I started blogging about two months ago and on days like today I search for support in dealing with my Endometriosis. Today is one of those worse days and it helps to know I am not alone in dealing with this.

  9. It’s good to know that there are more people like me out in the world. I am going through all the same problems and I don’t have any children and all I ever wanted is to have children, but it looks like that its not going to be a possibility for me.

    • It astonishes me how candid people can be about taking pity on Endo Women and assuming we can’t have kids — relative strangers, mostly, even my on HR department staff who really ought to know better. Certainly they don’t mean it maliciously, but these negative words add up. Every time someone makes some commentary about “not having children” I take the chance to remind them that “Oh, I’ll be having children. I just might not give birth to them. But we’ll find out eventually!” We can always adopt, we can foster, we can have a surrogate. Chin up, angel. x

  10. Hi, I was diagnosed in 2006 with stage 4 endo, adenymosis (not sure if I spelled that correctly) and PCOD. Right now I’m at the point of so much pain? It’s hard to function. I was told I couldn’t have kids but I have 2 miracle babies. I live in Jacksonville Florida and am looking for someone to go to so I can get a hysterectomy. I’ve already been to see Dr. Fox, he did my surgery in 2006 and 2007. Please, any info you could give, I would appreciate.

    • I’m amazed that dr fox did two surgeries! I had my second lap with him. I saw dr Winslow at FIRM recently and he is refusing to do another lap but is encouraging me to have a hysto even though I have no children. Send me an email with your number and we can talk more! endosucks@gmail.com. x

  11. Yeah, he my first lap in 2006 but there was too much and they didn’t want to keep me under any longer because I was having breathing issues, 2-3 months later he did the second one. 3 doctors told me I couldn’t have kids so I quit using birt control and in 2009 I got pregnant. After that pregnancy my endo improved for 6 months but then went back to being pretty painful and after my second child there was no relief. I go to a pain management doctor now, it makes it a little more manageable but still freaking painf as heck.
    My email is bbyshell25@yahoo.com

  12. Hi there..

    glad to find this forum..
    I was diagnosed with stage 4 endo in 2011..I used to get excruciating pain on the first day ever since I started getting my period in 1993_94..but pain became worst by the time I had started working on 2006..

    I underwent a laparoscopy in 2011/..and series of fertility treatments in next 2 year like iuis and one ivf …but my body could not tolerate heavy dosage of medicine.. I got gastritis attack and my body could not take any medicine even to suppress acidity.
    I met one dietician n naturapath who helped me chalk out estrogen free diet and acupressure points …when all allopathy doctors were blunt that I will never be able to conceive naturally this lady offered me a help with no aasurity of natural conception.. By this time husband and I had made up mind for adoption if needed ..
    I decided that I will try to keep the endo under control first without allopathy medicines as my body cldnt tolerate any medicine by this time ..I had taken luprons and decappeptol depot during rounds of fertility treatments.. My amh count was as low as 0.46..
    I followed diet suggested (estrogen free)for about 9 months.. Daily exercise routine etc..also opted for homeopath medicine for abt 2 months and in Oct 2012 I conceived naturally..
    I have 2 year old son now..I am not free from endo yet ..in fact now along with cysts there is also adenomyosis to make my pain and bleeding worst..I have tried contraceptive femilon and dinogest but that is not helping me..

    I have shifted to Jacksonville for short period and looking for anybody who has overcome the symptoms without any surgery..

    Thanks and thank you so much creating this blog
    Regards
    Rasika

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