The ICI Experience:

 Here's the link to the actual article describing my experience:  https://medium.com/@SherrilLynn/nerve-damage-to-the-vaginal-cuff-after-total-hysterectomy-6d9a2e576f15 .     This has happened to me and I can find virtually NOTHING written about it, except the pain filled pleas of other women it has happened to, looking for answers as to why this has happened to them and what they can do about it.  I'm going to start a place for other women who have and are experiencing Nerve Damage to the Vaginal Cuff after a total hysterectomy (as far as I can tell there's no cure and nothing to do about it but pain management) to publish their stories here on the ICIE blog.  A collection of experiences of women who have Nerve Damage to the Vaginal Cuff (I'm going to shorten it to NDVC since no one in the medical field has deigned to give a name to this diagnosis), after a total hysterectomy.  I'm pretty sure there are quite a few of us out there but no one has co...

I'm letting the inspiration come from wherever it will.  I'll share some more of this lady's stuff and spell out the tie in with my blog... which will be 10 years old this year! Blaze a new path! #uniquemonique #mayaangelou #success #inspiration #vlogger #beauty #over40 #over50 #fabulous #love #journey #path A photo posted by Monique (@moniqueparent) on Jul 21, 2016 at 8:42am PDT

Thanks to the Endo Warriors for putting this guide together.  I was told I have "allergic sensitivities" to just about everything on this list in 1989, the same year I was diagnosed with endo. The things I wasn't allergic to, my digestive system communicated to me in no uncertain terms (Irritable Colon or IBS dx in 1993) that I was not to consume them. So I thank my body's innate intelligence for watching out for me again.  Our quick guide to foods to avoid on the Endo diet. A photo posted by Endo Warriors (@endowarriors) on May 18, 2016 at 8:16am PDT https://www.instagram.com/p/BFjaQgkJBID/?taken-by=endowarriors

This is a really creative animation of one of Frida Kahlo's most famous (among the chronically ill) self portraits, The Broken Column .  The originals are on Instagram https://www.instagram.com/p/BI3ug5_jSuB/?taken-by=lacejadefridaoficial and Tumblr https://www.tumblr.com/reblog/148668368448/oJ9mRBlb .  So click the play arrow and if you don't understand any Spanish I will put the translation at the bottom of this picture for you. No cheating!  Watch the animation first! No estoy enferma... 😔🍉🍃 #FridaKahlo #lacejadefrida #instadaily #picoftheday #instafrida #frida #flowers #friditis #creative #fearless #frases #quotes #frasesdefridakahlo #frasesdeamor A video posted by Frida Kahlo (@lacejadefridaoficial) on Aug 8, 2016 at 7:12pm PDT No cheating!  Really. The animation translates as:  "I am broken but I am happy to live while I can paint."  Or something to that effect. I'd like to know more about the lacejadefrida.com artist, bu...

Judgement of others...#nocurenochoice #endometriosis #endosisters #chronicillness #texasadvocatesforendo #endoawareness A photo posted by TexasEndoAdvocates (@texasendoadvocate) on Jun 13, 2016 at 8:23am PDT I've been dealing with these types of problems in my immediate family for almost exactly three years now.  Last week the problem suddenly got much worse.  More on that soon.

Here are a few videos from the Blossom Ball this year.  Start each one individually because it really annoys me when a video starts as soon as I click on a site and won't stop.  They're all short and sweet.  Especially the one on the far right. Allison Williams' letter to endo for Lena Duncan.  Enjoy. Endometriosis Foundation of America from Endofound on Vimeo . In case you don't know who Allison Williams is, like I didn't: Allison Williams Actress Allison Williams is an American actress, comedian, and singer. She is best known for her role as Marnie Michaels on the HBO comedy-drama series Girls. Williams was born and raised in New Canaan, Connecticut, and is the daughter of former NBC Nightly News anchor and managing editor Brian Williams and Jane Gillan Stoddard, a T… Wikipedia IMDb Born: Apr 13, 1988 (age 28) · New Canaan, CT Height: 5' 6" (1.67 m) Spouse: Ricky Van Veen (m. 2015) I would like to post more s...

My DM (Dear Mother) thinks that blogging is bad for me.  Sorry, Ma.  I've gotta do what I've gotta do.  And I've gotta do this. A reminder to myself: Absolute permission: Be exactly who you are. #regramlove @ashleywilking #inspiration #iamwellandgood A photo posted by Well+Good (@wellandgoodnyc) on Mar 29, 2016 at 5:10am PDT

P.S. The creator of this fabulous document has endometriosis.  And you must upload a good document to Scribd in order to download this one.  Chronically Awesome Mankoski Subjective Pain Scale for Chronic Pain Patients by Jules Shapiro Or you can just take this jpg version: 

UPDATED:  March 21, 2016 - also World EndoMarch 2016 day 5/23/14 I just stumbled across this article/post about the nightmare of Lupron, on Pinterest.  I'm sharing it here because it is well written, factual, and it's a small sample of the insanity that has surrounded people with Endometriosis for decades.  And because I'm so glad I didn't take Lupron or any of the other useless but dangerous drugs that were being promoted for endometriosis back when I was first diagnosed.  (I have the Endometriosis Association , founded in 1980 by Mary Lou Ballweg, to thank for providing me with the knowledge and courage to buck the medical system from the beginning of my diagnoses.)  The nightmare is that doctors are STILL prescribing Lupron for Endo. Hidden Clinical Trial Data About Lupron

Sorry I haven't been able to put out any original blog posts for several months.  I'm going through something and I can't write about it yet because I'm not sure exactly what it is. I think I need to get through it and get some perspective before I can write about it.  I'm not even able to read much right now (chronic migraine) but I do still occasionally come across something that I identify with strongly or am really moved by... like the post below that I'm reblogging.  It's got me to thinking along the right track, I hope.  And I hope it will help others also.   Lost  in Grief Originally posted on Then Everything Changed : A Glimpse of Life With and Without Invisible Illness. Posted on June 19, 2014 by leitis23 "For the majority of people coping with chronic pain or illness it came on suddenly while we were innocently living normal lives.  Whether we were nine or fifty years old chronic pain brought about ...

... I shall share with you this wonderful post about a surgery very similar to mine that happened this month.  But it's from the perspective of the waiting room, by Erin's friend, Marissa.  I'd say she's a very good friend.  The post is hilarious AND it made me cry.  It's great.  Sigh. Putting the ME in EndoMEtriosis-Part 1 ,  on Erin's Guide to Living Blog If you've read my blog at all, you know I like to put pictures in my posts.  This is a word picture, but I think it goes. Erin & Marissa, I hope you're new online friends.  And to all of you out there that I've met online (NOT just Facebook!) since I started blogging in 2007, I'm really, really thankful for you.  Especially since I moved in 2011 and had less than a year to make face to face friends in my new city before I had to start figuring what was wrong with me this time.  It's been a long hard road and I'm not at the end of it yet.  But I know al...

I found this on the Beyond Basics Physical Therapy blog. It's a great, fun post about getting mega corporations that make "feminine hygiene" products without any kind of ingredient list anywhere on the label. What's up with that? I mean really!

Hi All, I'm participating in this study and I told Megan Fulsom that I know some people with FM (haha) and I would spread the word around that she's looking for participants. Megan is the person who is doing the study to complete her Master's thesis, and thereby her Masters in Dietetics at Indiana State U. Megan is no stranger to multiple chronic illesses; she also has Fibromyalgia.  If you can, please give her a hand in completing her study.  Life is giving her a hard time of it. When her study is completed it will be the only one of its kind dealing with FM and whether an anti inflammation diet helps or not.   Here's the link to her FB Advertisement:  https://www.facebook.com/sherrillynn/posts/10154258273365074 . ​

I noticed this as soon as I started reading Endo and Pelvic Pain websites and blogs, a few months after these new symptoms (yes, I'm going to write all about it; I just need to get into the swing of blogging again before jumping into the deep end) started in September of 2012:  Many of the people who write about these topics call themselves "sufferers." I started being diagnosed with ICIs  in 1989 (Endo, Fibro and multiple food allergies that year) and I quickly learned that I preferred to refer to myself and others as survivors or persons with chronic illness X .  Even referring to myself as a fibromyalgiac, for instance, tends to give the illness a feeling of power over me.  None of the ICIs I have define ME, so I don't use terms like that either.   Sufferer connotes a victim mentality to me.  It's OK to wallow in the pool of being a victim for awhile, but I don't think anyone will get out of that sucky, I-feel-sorry-for-me-so-you-should too plac...

**Public Service Announcement** by Laurel Wells Thompson (feel free to share this far and wide, with attribution)   HOW NOT TO BE A DICK TO YOUR INFERTILE FRIEND: CONVERSATIONAL EDITION About 11% of women are unable to conceive within one year of "trying," so if you are a person that breathes air, you have probably encountered one of us. It's very tempting to offer words of comfort or advice, or to ask questions, but very often there is a disconnect between what you're saying, and what your infertile friend (heretofore referred to as YIF) hears. Allow me to translate some of the most common attempts at sympathy: You: "Just relax!" YIF hears: This is your fault, if only you could be like everyone else you could make this happen. You: "Everything happens for a reason/it's all in God's plan" YIF hears: You're clearly not cut out to be a parent/God wants everyone to be happy except for you. You: "Why don...

Today is seven years since I published my first blog post on 5/19/2007, Yay, I'm Blogging! I haven't published a post on The ICIE since April of 2012 so it seemed fitting that I come back to blogging on my anniversary.  I haven't been writing, but a lot of people have still been reading my existing blog posts; I've been getting hundreds of hits per week the whole time I've been gone! I just love those Blogger/Google stats. I'll make a long story short as to why I've been absent from the blogging world for two years.  In 2011 I started volunteering at least once a week at our local art center.  I did that for about a year, then I started to work there part time as a staff member.  I became the Volunteer Coordinator in July of 2012.

  HAWMC Day #30 : Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/ There WILL be an explanation for my sudden disappearance midway through the month from this challenge.  It's a good one and it came on me suddenly.  Not one single thing, but a conglomeration of them.  Next post, I promise. I had hoped to do a few posts in the meantime, but I guess this is it for this month.   I cut and pasted a bunch of text and the titles from the five all-time most popular posts from my blog (since 2009 anyway, when Blogger made a big change to the way stats are kept) and this is what I came up with. Click on the picture to see it big.  These are the five posts, in order of popularity as of right now: The Twilight Saga books, and the first movie: Not just for teen gir...

What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best? I like to think that my writing style is straight forward.  In truth some people might actually think it's blunt.  But that's me so there you go. Yes, words flow from my mind to my fingertips to the keyboard.  Sometimes for a complicated post I hand write it first.  I've used one book so far that I like very much, Writing the Natural Way by Gabriele Lusser Rico. She uses a technique called " clustering " that I find very helpful for organizing complicated topics. I guess I do plan my posts.  Whenever I have an idea I quickly create a draft post with the gist of it or maybe just the link that inspired it and a title that I hope will help me identify it later.  Because right now I have about 150 draft posts for this blog.  So far I have never had any problems with w...

Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen? I'm late with this post; just couldn't seem to get it out yesterday, but I did a lot of other stuff.  Then I was going to quit the challenge all together but the weekly HAWMC email from WEGO came today and I was inspired to continue.  I was also reminded that I still have two "Get out of post free" days that I can use.  But I liked what I thought of for yesterday's post so much that I'm going to go ahead and do it quickly. My dream day is going to the beach. Nothing too fancy, just going to a nice white sand beach to take advantage of the therapeutic benefits of being there.  I would take someone with me who would enjoy it like I do.  My sister and niece come to mind. I'd have comfortable lounge chairs, shade available if we got too hot and needed a break from the sun, good beach food like fresh fruit...