Friday, September 24, 2010

OMG, It's Endometriosis!

Let me start by explaining why I decided to start blogging about Endometriosis.  I sincerely hope I will reach a fellow sufferer or survivor.  I hope I can instill some sort of hope or sense of relief; I want to give my fellow Endosisters a shoulder to cry on, a shoulder that I did not have back in April.  If I can create some sense of camaraderie, if I can give someone the first smile they've experienced in weeks, if I can help someone realize they are not alone... then I will feel accomplished.
I know what it's like to feel completely isolated from everything because of an illness.  I know the anger you feel when someone thinks they know how you feel, when they say, "Oh, I have bad cramps, too!"  I know the desperation that comes with trying to find a specialist.  I know the disappointment you felt when your doctor told you the only way to get pregnant would be through IVF, and even that looks like a slim chance.  I know the anguish and utter confusion that comes with the diagnosis.  I know the frustration you feel when you realize your doctor doesn't know anything more about Endometriosis than you do. I know the suffering you go through when your parents, partners, or friends say you'd feel better, "If you just got out of the house." I know how embarrassing it is to have to argue with the pharmacist over the fact that your doctor denied a refill on your pain relievers, even when they know you need them to be even remotely functional.  I know how worthless you feel when you can't even do the dishes or the laundry or any seemingly minuscule household chore.  I know the look of pity your doctor gives you when you walk into his or her office only 3 weeks after surgery because the Endometriosis and pain are back... again.  I know the horrible abyss of depression that sets in when you finally realize or learn that Endometriosis is a chronic illness. I know what it's like to feel like an absolute burden to your partner or parents or caretaker.  I know the fury you feel when you search online for an "in-person" support group and find none.  None.
I know how hopeless this illness leaves us.  It is a physically and emotionally damaging illness.  It leaves you feeling spiritually dead.  It tries like hell to kill any hope that we have.  I know all of these things because I have felt them-- over and over and over.  A few weeks ago, I got so damn angry that I actually decided to do something.  I decided that I would reach out to every Endometriosis survivor I met and try and let them know that they are not alone.  Endometriosis affects up to 10% of women.  That's 1 in 10 women!  There could be a woman less than a mile away from you, just suffering in silence and alone.  Our doctors haven't made much progress with anything, so I have decided it is up to us.  We must be our own advocates. We must educate ourselves and learn all we can about this disease.  We must fight as hard as we can against this illness that is trying to kill our spirit.  We have something wonderful, something many of us may not have known we had: We have each other.

"In the darkest hour, the soul is replenished and given strength to continue and endure." -Heart Warrior Chosa


  1. Hey Sister!!

    Today I happened to find you on Twitter & I'm so ecstatic to read your first blog post. This is exactly why I started my endo blog too. You described so much, so well. I'm looking forward to following your blog. I hope your blog will comfort, connect and heal you.

    Nice to meet you. Welcome to the family. :)

  2. Hi Ellen!

    Welcome to the blogosphere! Writing a blog can be truly therapeutic. It can really be a win-win as the author and its readers can truly benefit from the sharing of endometriosis facts and support. :)

    Jenn from Endo Friendo told me she found your blog after "meeting" you on Twitter. It's nice to "meet" you.

    I hope you'll check out my blog. Many thoughtful, smart, caring endo patients comment there. So, it's a nice place meet other endometriosis patients.

    I have numerous chronic conditions besides endo (some of which are co-existing conditions like fibromyalgia and interstitial cystitis... the list goes on) and I write about many of them too.

    Endo was my first chronic illness, though. For 28 of my 41 years, I have lived with endo. By sharing my experiences, I hope to help others. I know I have learned a great deal from fellow patients.

    I attended local support groups from 1992-2008. (After I got married and moved to a new area, I started a group from scratch in 2001. We held monthly meetings for 7 years).

    You'll find lots of endo posts on my blog. (The old name of my blog before I moved from Blogger to WordPress was 'Jeanne's Endo Blog').

    You can also find me on Facebook, YouTube and several other sites. I used to be a very big Twitter user. (I created the #endo hashtag and registered it for use for endo). However, after some unfortunate events culminating in a Twitter impostor "cloning" my account and that of another endo blogger, I decided to leave Twitter.

    So, I won't see you there but I look forward to seeing you around. Oh, if you stop by at my blog, please be sure to check out the endometriosis awareness petition. We have 667 signatures and we've used it to get the media to correct errors (misinformation printed about endo).

    Sorry to babble on. It's always exciting to meet new bloggers who write about endo. :)

    Take care,


    P.S. I saw something about kidneys on your Twitter feed. Was it kidney infections or kidney stones that you had in the past? I have had 11 kidney stones myself.

  3. Thank you so much! I am going to be adding all of the Endometriosis blogs I can find onto my Blogroll. I feel a large sense of peace after writing those words and also after speaking with fellow Endosisters. There's nothing better than connection with others that feel isolated! I am going to be updating at least once a day-- with medical journal excerpts, "sick humor", my own journey with Endometriosis, and everything and anything else Endo related. :) I am planning on compiling all of my writing on here & my writing in my personal journals into a book on how to cope with Endometriosis.
    Thanks again! <3

  4. Thanks, Jeanne! I'm so excited to be meeting fellow Endosisters! I have had issues with my kidneys in the past-- numerous kidney infections. In fact, my kidneys were the ones that got me a diagnosis! Back in March, I had a kidney infection that caused a lot of pain. One night, it got so bad that my boyfriend took me to the ER. We thought I might have a kidney stone because of all of the horrible flank pain I was experiencing. I had a CT scan done, and it was NOT a kidney infection-- it was a blocked fallopian tube (hydrosalpinx), 2 chocolate cysts on my left ovary (one of which had ruptured) and another chocolate cyst on my right ovary. So, I guess my kidneys kinda helped me out!
    I had a large amount of Endometriosis on my left ureter during my first surgery, which explained why my left flank hurt all the time. My surgeon still maintains that my pelvic cavity was the worst mess he'd ever seen, and he's one of the best surgeons in the USA. He did the first SILS hysterectomy in the South a few years ago!

    I actually believe I may have fibromyalgia as well-- it runs in my family, seems to be best friends with Endometriosis, and I have all the symptoms. Not really looking forward to that diagnosis!

    I will certainly check out your blog! I'm so sorry that happened to you on Twitter. Twitter seems to be a sort of breeding ground for inane drama, unfortunately. I do hope you come back eventually, and remember that you can always make your Twitter private so that no one but your friends can see your tweets. :)

    Thank you, both of you, for your heart-warming and lovely comments. I will be posting another blog either tonight or tomorrow. Love and hugs to you both!

  5. Ellen,

    I hate to ask but have you ever been tested for interstitial cystitis? The reason I bring it up is that I have heard of IC patients who were misdiagnosed with kidney infections prior to their IC diagnosis.

    I am certainly not suggesting that's what happened in your case. I was just curious as to whether they had considered that. I have picked up a fair number of Facebook friends who have IC in recent months.

    My IC went undiagnosed for 12 years. I had lots of unnecessary suffering and pain! It took 4 docs to finally get the right diagnosis. (The whole story is on my blog).

    I'm sorry for what you had to go through (with that terrible pain that wasn't a kidney infection after all) but I'm glad they were able to figure out what was causing the pain. I'm sorry your endo is so aggressive.

    Well, there are enough patients with both endo and fibromyalgia for them to be considered "overlapping conditions".

    My pelvic pain specialist treats lots of people like me (with oodles of related illnesses) and he strongly suspected fibromyalgia and told me I would need to see a rheumatologist to rule fibro in or out.

    I did so and he said, "you definitely have fibromyalgia"! I wasn't looking forward to that diagnosis either but it did explain a lot of things that were happening.

    Ah, the Twitter story! I'm afraid it was quite ugly. There is a mini-version of the Twitter saga in my left sidebar under "Why I Left Twitter". There was much "behind the scenes" drama on top of all that.

    This was identity theft and involved multiple endo bloggers. There were legal issues involved and such. (Let's just say that speaking up on behalf on endo patients made me a target. It wasn't just me either).

    Yes, I know about locking down the tweets. Things got past that point for me. I'm afraid that the Twitter incident was too severe for me to be interested in returning to Twitter. It's complicated.

    It was great for a long time and I loved it but by the end I never wanted to hear the word Twitter again. ;) I was on it from July 2008 - November 2009. (That was back in the days it was spam-free and ad-free). I have no plans to return.

    No worries, though... I can be found on nearly every corner of the Internet. lol

    Please try not to push yourself 'too hard, too fast'... so that you can avoid burnout. I remember how excited I was when I first started my blog. I pushed myself pretty hard and ended up realizing I needed to pace myself.

    Many people kindly suggested I "slow down" to avoid flaming out. Their words weren't always what I wanted to hear but they were what I needed to hear. :)

    I'm so glad Jenn told me about your blog. Jenn is a very wonderful endo buddy to have (or "endo friendo", as she would put it).

    Trust me that she and I both understand the need for pacing and sufficient rest. So, take your time. You know where to find us. ;)

    By the way, if you are looking to build a blogroll, be sure to take a peek at mine... as many are written by endo patients (though not necessarily all written about endo).

    Sending positive energy your way... Congrats on the new blog! :)


    P.S. I too plan to write a book someday. I just need to summon up the energy and find the time and I'm not there yet. ;)

  6. I've gotten gotten a lot out of meeting the online endo community, and it's more than just the much-needed emotional support. When I read about the physical expressions of the disease in other women, I learn that the things my doctor claims have nothing to do with endo actually do. If only we could get doctors interested in our wisdom...

    Bon courage!

  7. I just started writing my book last week. I am so excited about it! I hope we can all be a support to each other in this exhilirating, enormous undertaking. (I'm imagining the day when all of our books are on the ENDOMETRIOSIS shelf at bookstores!)

  8. Ellen,

    I totally agree with Gwenn that many symptoms doctors claim are unrelated to endometriosis do affect lots of endo patients I know. This truly is another big benefit of networking with fellow patients... making the connections and discovering the patterns.

    Getting the validation that those "rare" symptoms the doctor dismissed as "not endo" DO affect many endo patients after all is huge!

    As Gwenn alluded to, it is incredibly frustrating that so many doctors are just not open to the value of the information/personal experience that endometriosis patients have to offer.

    Not to mention that many "Traditional Western Medicine" doctors are (sadly) very close-minded about alternative medicine.

    Between closely observing and analyzing one's own symptoms, doing one's own research (reading the medical journals and trying to see patterns and connect dots), and comparing notes with other patients, endometriosis patients often have very valuable contributions to make to the doctor-patient partnership. Or should I say patient-doctor partnership? ;)