Endometriosis Blog: Webcast On BLOGTALKRADIO About Endometriosis

Please see disclaimer at the top of my blog's homepage.

I listened to a webcast about endometriosis on BLOGTALKRADIO.

* The host was Elizabeth Lee Vliet, MD

* The show name is "Dr. Vliet’s Savvy Woman’s Health Guide™ - Straight Talk About Hormones"

* The show description is "Painful Periods? You need to know about Endometriosis"

It aired on BLOGTALKRADIO on 6/9/2008 but is available as a webcast on:

"Dr. Vliet’s Savvy Woman’s Health Guide™ - Straight Talk About Hormones"

Here is the description of Dr. Vliet's webcast on endo:

Dr. Vliet’s Savvy Woman’s Health Guide™ - Straight Talk About Hormones

Whether you've been a patient of mine, or read my books, or attended one of my speeches, you know where I stand on issues involving hormones and women's health. My messages have been consistent over the years - and they've been proven reliable. Messages such as "Hormone is not a dirty word" or "Your health problems are NOT all in your head" or "Take charge of your health - and find a doctor who listens."

As you know, the traditional news media have not always been receptive to these messages. But advances in technology have opened up a new opportunity to get these life-saving messages to ever-larger numbers of women.

With this new understanding of technology, we decided to start a Blogtalk radio program called "Straight Talk". "Straight Talk" will be your chance to talk about the latest studies making the news, to clarify the meaning of "bioidentical," or to learn more about fibromyalgia, weight gain, insomnia and other hormone-related health issues. Occasionally I'll have a guest on with me - such as a newsmaker or a patient telling her story.

The webcast is 60 minutes long. I found it quite interesting. It starts by giving a basic description of what endometriosis is.

Then Dr. Vliet talks about a wide variety of topics including: hormones such as estrogen, estradiol, testosterone and estrone; the World Endometriosis Conference of 2002; adhesions; cytokines; inflammation; endometrial tissue; typical locations of endometrial lesions; The Endometriosis Association; painful bowel movements; painful urination; painful intercourse; dioxin; adenomyosis (endometrial tissue within the muscular wall of the uterus); laparoscopic surgery; theories on causes of endometriosis; the retrograde menstruation theory; the theory that endometriosis is a congenital condition that lies dormant during childhood; genetic factors; immunological factors; "chocolate cysts"; different colors of endometrial implants (that not all doctors are aware of/that may get missed during surgery); the importance of picking an experienced surgeon; dioxin as a cause of endometriosis; studies with a rhesus monkey colony; how dioxin-exposed monkeys didn't show symptoms until years after exposure; endocrine disruptors; her book; treatment options; suppression of ovulation; GnRH agonists; extreme fatigue; birth control pills as treatment for endometriosis; progestin; aromatase inhibitors; continuous birth control pills as an endometriosis treatment... and GnRH medication to treat endometriosis that can cause side effects such as depression.

Dr. Vliet said some women pass out or vomit from the pain of endometriosis and that up to 50% of endo patients have trouble getting pregnant.

During the radio program, she took several callers. These calls resulted in discussion of questions/comments on treatment options, endocrine disruptors, endometriosis as a cause of infertility, pregnancy, endometrial ablation, endometrial cancer, hysterectomy, GnRH agonists, hormonal changes following hysterectomy, bioidentical hormones, dietary issues, gluten, food intolerance, magnesium deficiency, hormone replacement therapy, and timing of hormone testing for women taking hormone replacement therapy.

She suggested listeners take a look at her website Her Place: Health Enhancement Renewal for Women, Inc.

She said it is a non-commercial website for informational purposes.

I took a very quick peek at Her Place: Health Enhancement Renewal for Women, Inc.

The site had this statement: "Our Website is dedicated to being educational and informative to help you have sound information to guide your discussions with your health professionals. We do not sell supplements, vitamins
or herbs, or other remedies, and we DO NOT use "Pop Up" ads". (Some of her books are featured on the site).

The site above has access to archives of other BLOGTALKRADIO shows featuring Dr. Elizabeth Lee Vliet. Just click on the yellow button "click for archived shows". This will route you to a wide variety of radio shows featuring Dr. Vliet.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: My Personal History As An Endometriosis Patient

I decided for today's post to go back to the "beginning" of my journey with endometriosis. I feel I should give some background on what led up to the diagnosis… to put things in context. After 10 years of suffering, I was finally diagnosed with endometriosis by a laparoscopy at the age of 23.

My middle school and high school years were marred by agonizing pain, massive bleeding problems, very irregular cycles (some cycles were just 16 days long and other times I would go a couple of months without a period at all). Most of the cycles were very short, though! It seemed I was always either about to get my period, that I actually had my period, or that I was recovering from the traumatic experience of having my period (which averaged 10-11 days back then)! Then it would start all over again way too soon. So I usually had about 5-6 days to “recover” and then my next period would begin! It took over my life in many ways…

The pain was so severe that I actually passed out one day when I was 14. I had a friend over for a sleepover. It was a hot day. I have always had heat intolerance so this didn't help matters. The pain was what knocked me out, though! It was excruciating! (Hot day or not, we were indoors eating breakfast so it wasn't like I was in the sun or anything). I just remember feeling very, very sick and then kind of flopping over sideways in my chair. My family and my friend later told me that my face turned greenish when I passed out. That is how sick I felt... sick enough to turn green! They thought it was some sort of heat exhaustion but I knew better. As I said, the heat certainly didn’t help BUT I passed out right in the middle of an episode of the most INTENSE abdominal pain ever!!!! This was no coincidence. (In years since I have passed out other times during my period, regardless of the weather).

Anyway, to fast forward a bit... high school was really tough! There were days when I was simply to sick to be at school. I never had the sense to not go to school in the first place on these particular days. Fortunately my best friend (the same one mentioned above with the sleepover fainting incident) had a father with a flexible work schedule that allowed him to pick us up from school early rather than take the bus home.

Since my friend and I got extremely good grades, missing an occasional class wasn't really that big of a deal and had no negative impact on our grades or our understanding of the subject matter. (I’m certainly not advocating skipping school; I always got a medical excuse or whatever the school required before leaving. I was a big rule-follower)! We had the option of scheduling our study hall when we wanted as seniors in high school and we scheduled ours for the end of the day so that we could get a pass from the office and leave early (with parental permission).

So we often would call her father for a ride before our school day was technically over (missing one class) or as soon as it was study hall time because I was just too sick to stay in school! Getting through a school day was, at times, all I could do… just to survive another school day. It took every fiber of my being to do it!

I distinctly remember sitting in the front entrance of the school one day with the most nauseating, horrendous menstrual cramps and abdominal pain imaginable. My friend and I were waiting out front for her dad to pick us up. I didn't care how I looked or who saw me sitting there sobbing. I was just too sick to care! The pain was far too intense to put on my happy face and “act normal”. I just kind of curled up in a ball with my back against the wall and cried. My friend did anything she possibly could to cheer me up. (She and I had been friends since 4th grade and she was good at cheering me up).

Anyway, I remember seeing her father's car pull up in front of the school and being SO relieved! We'd go to her house and I would just lie on the bed in her room and cry. This happened quite a bit. It was not a fun way to go through high school.

In my college years, I managed to graduate with a 3.65 GPA despite the fact that I often had to leave mid-class and duck into the rest room because I was so very sick. It was very challenging! I did whatever I had to in order to "catch up" on anything I missed for all of the inconveniently timed trips to the bathroom. It was exhausting and many tears were shed in those college bathrooms! Honestly, I look back and I don’t know how I did it!

Anyway at the age of 23 my gynecologist tried a couple of different birth control pills to try to tame my symptoms. The pills he gave me made me much, much sicker. He then told me he thought I might possibly have a disease called endometriosis. He explained that to see if I had endometriosis a surgical procedure called a laparoscopy would need to be done. While I wasn't wild about the idea of surgery, I certainly wanted to do anything I possibly could to find out what was wrong (because there was no doubt that something was very wrong)!!!

So in 1992 I had my first laparoscopy. My gynecologist diagnosed me with endometriosis. He said he had "cleaned me out" and implied that I was going to start feeling much, much better now. Well that relief he promised never came! (Just 10 months later, another surgeon who was MUCH more experienced with endometriosis did another laparoscopy and found lots more endometriosis)!

After the first surgery, my GYN put me on yet another different birth control pill. I was the sickest ever! I was having all of my usual symptoms (terrible hemorrhaging, agonizing menstrual cramps, nausea, diarrhea, etc). In addition, I was now experiencing extremely severe hot flashes and other new symptoms. Plus I was still recovering from the surgery itself. I was sicker than ever! (I now know from various conversations with pharmacists and other gynecologists that the class of birth control pills he had me using is not a good choice for endometriosis patients and it was why I had the TERRIBLE hot flashes)!

I was working lots of hours and being so sick was making it almost impossible to function at work or home. Between the pain, the bleeding, the exhaustion, and the hot flashes… I was very ill!!!

Once I had a diagnosis of endometriosis, I was hungry for any information I could get my hands on. So, sick as I was, I went on a “hunt” for anything I could possibly find about endometriosis. Let’s just say that the information I found initially was scant to say the least! My GYN gave me a very skimpy brochure on endometriosis that was published by a pharmaceutical company pushing their product. This was not exactly an informative brochure! That’s it. When I asked him about other resources available on endometriosis, he couldn’t come up with anything else!

I then went to my local library. This was a fantastic library that had always had what I needed when I needed it. I searched for any information I could find on endometriosis. I found NOTHING! I asked the librarian for help. She was also unable to find a single bit of information on endometriosis. Being 1992, I didn’t have the Internet to turn to as an endometriosis resource. I was not a happy camper!

I went to various places. Finally, one day I went to the local Barnes & Noble bookstore. I spent hours & hours combing through books in the women’s health and self-help book sections. I searched and searched. I found very little. A couple of books had the word endometriosis in the index but when I turned to the only page listed for it, there would simply not be any helpful information.

Then I made an important discovery! Tucked in the back of one of the books in the “resources” section was information on The Endometriosis Association. I scribbled down the contact information for The Endometriosis Association and was very pleased to have found an entire organization dedicated to endometriosis education, support, and research. (The rest of that book didn’t really interest me so I didn’t purchase it).

I had what I needed: contact information for an organization dedicated to endometriosis!

I went home and called The Endometriosis Association!

Since this post is already quite lengthy, I think I’ll stop at this juncture and save the next part for another post!

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So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
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This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)

This morning's post at 11:01 AM read as follows ---

Hope to post more later. On way to GYN...

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

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EVENING UPDATE:

This morning's post had this depressing title --- "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)"

What a difference a few hours can make! I am still in incredible pain but I'm feeling much better emotionally than I was earlier today! (See my comment to Alicia on this post for some insights as to factors that turned a horrible day into a great one in many ways). Alicia could cheer ANYONE up!

This morning was one of those days with a very rough start. First, I woke up feeling like I had been hit by a truck. Then, I ran around trying to get ready for my gynecologist's appointment but was spinning my wheels because I was just too stressed out to get very far. So I stole a few minutes to go online and post the sadly titled: "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)" I figured the widgets might have to keep you busy since I didn't know when I'd be able to post again. (Besides, they are really good widgets. Check them out)!

Within a short span of time after I posted this pathetic sounding post (except the positive part about the widgets), supportive comments flooded in from Mckay k and from yaya (Alicia). This positive enerygy was the boost I needed to simply get out of the house for my dreaded pelvic exam and pap smear!!

At this juncture I should explain that I have two doctors who treat my endometriosis symptoms: my gynecologist who I see annually and who does my regular pap smears... and my pelvic pain specialist who does pelvic exams too but does not do my pap smears.

Anyway, today was my visit with my gynecolgist. I just love this man! He is so compassionate and kind!!! He is passionate about helping women with a whole host of issues. He listens and cares!!! I was looking forward to seeing him as a person!!!

The part I was dreading this morning when I had such trouble functioning well enough to get out of the house & was in such physical pain... was the always-scary-to-me pap smear that always hurts like "h-e-double hockey sticks"... if you know what I mean! NO doctor has ever performed a pap smear on me without me experiencing indescribable, intense, excruciating pain.

Years ago when I lived in two other cities and I had pap smears by other doctors. No one has ever done it without me wincing, jumping off the table, accidentally holding my breath (which is not good because holding your breath just tenses up muscles & things), and simply not knowing how I'll get through it!

PLEASE NOTE:

If you aren't aware of it already... speculums come in different sizes. If you, like me, have very severe pain with pap smears, I highly (!) recommend asking your doctor if he or she has a smaller-sized speculum. It matters!

So, YES, all of this pain I had during today's pap smear was with a SMALL speculum. (Can you imagine how I would manage the regular sized one)? Anyway, I knew how much it would hurt. We're talking pain beyond that with non-pap smear pelvic exams... which also are excruciating and also cause me to reflexively jump off of the exam table.

The jumping, of course, only worsens the pain but I cannot help it. It is a reflex. If anyone out there reading this has had this happen (and I know some of you "get it" because I've talked w/women in my local group who are also like this), you are not alone! I looked like a Mexican jumping bean jumping up and down off of that exam table. My poor doctor... I wouldn't want to be my doctor! I've never had a pelvic exam that was not this painful. (I've certainly had worse, with docs in my former city).

I should stop here to mention that part of why my pelvic exams with either my GYN or my pelvic pain specialist are so VERY painful is that I have numerous illnesses that affect pelvic pain/vulvar pain/abdominal pain:

+++ vulvodynia or vulvar vestibulitis I'll have to do another completely seperate post someday on the difference between the two conditions --- but one pelvic pain specialist thinks I have vestibulitis and the other one (a 3rd opinion doc) thinks I have vulvodynia... In the meantime, consult the National Vulvodynia Association for info on these --- http://www.nva.org/. Also, please note that vulvodynia is being rsearched by an organization called CureTogether. See my July 15th post on their new medical research organization for more info on them. Also refer to their website: www.curetogether.com.

+++ interstitial cystitis

+++ pelvic congestion syndrome

+++ irritable bowel syndrome

+++ ... and, of course, endo!

Since any one of the above can cause painful gynecological exams, it's no wonder that I fly off the table when the doctor does any part of the exam.

Anyway, it ALWAYS is the case for me when I have to see either of these docs for an exam (but especially if it's a pap smear day)...

I of course have my period. There is no scheduling around this. First of all my periods aren't regular enough to schedule for them. Second, even if I'm nowhere near due for my period I almost always get it on or right before my pap smear appt. It never fails! There is no sense trying to reschedule when it happens a couple of days before a pap because the rescheduled appointment would fall into the same "Murphy's Law" category and I'd get my period on whatever day I rescheduled it for.

Anyway, I finally made it out of the house (quite an accomplishment with the fibromyalgia pain that greeted me first thing this morning)! Then I drove 45 minutes to where my doc is. Then the waiting game. At I sat in the waiting room, I distracted myself by filling out the HMO update/patient info form and scribbling additional notes for the doctor on my typed-up-at-home-in-advance medical history/update.

I learned long ago with a great doctor like this who is so thorough that his form for each annual exam is detailed (about 6 pages long!) that I need to write SEE ATTACHED on the whole doctor form and bring my updated version of events with me. (I need to actually do this for all doc appointments since my meds change frequently and I keep getting new diagnoses to pass along to all my other docs so they are all on the same page).

Sooooo, I turned my things in to the receptionist: the HMO/patient form, the doc form marked SEE ATTACHED, my newest HMO card, and the typed up stuff I brought with me.

Then I read things to get distracted until they called my name. The distraction is key for me when the anticipation of a painful exam creates overwhelming anxiety and fear in me.

They called my name and took me back. I did all the "nurse stuff". (Yay... my blood pressure medication is working as my BP was MUCH lower today than it has been)!

Then the doc comes in. Now this has to be one of the nicest people I have ever had the pleasure to meet. His bedside manner is impeccable. He REALLY cares about each and every patient. He knows me very well after many years on this journey together and tries extremely hard to be gentle with the exams. He listens! He is knowledgeable about alternative medicine. He is just awesome any way you slice it. All of this does not alleviate my fear of the imminent pelvic exam... especially the pap smear part!

I fill him in on some major changes in my health (for the worse) since I last saw him. Then it was exam time. I swear to you I tried with every fiber of my being not to jump off the table. However it is an unstoppable reflex. How else to explain that I'm telling my body "stay still and it will hurt less!!" but yet I jump?!

So the exam hurt like "h-e-double hockeysticks" as always with any gynecological appt. That was a given.

Then (!!) the huge relief that it was done hit me!!! I was so happy that my annual exam (pap smear and all) was done for another year.

Oh, sure, I may see my pelvic specialist 3 times a year on top of the GYN appt I had today (give or take)! Yes, that will hurt like "hockeysticks" too! However, for me, it's that pap smear that is the hardest part, pain-wise. So once I was done with today's exam, a HUGE weight was lifted off of me!

Anyway, my annual exam (including the necessary but very painful pap smear) is history for 2008. Yay!

In addition to having that doc appointment behind me, I had the extreme pleasure of visting with my friend and fellow (local) endometriosis support group member: Alicia. Yes, I mean THE Alicia... You may also know her as "yaya" and she frequently posts comments on my blog. She has endometriosis and infertility. (Her personal blog is: http://www.yayastuff.blogspot.com/ and she occasionally posts about those topics, among others).

Anyway, seeing Alicia in person was just what I needed today. After waking up to fibro pain, after realizing that the severe Charlie horses in my left foot from yesterday were planning to stick around (!!!) and hadn't left overnight, after trouble simply getting OUT OF THE HOUSE, after a problem with my van when it was time to leave that necessitated another stop en route to the doctor, after driving 45 minutes to the city, & after enduring the exam... her smiling face cheered me right up and distracted me from my troubles. Alicia is one special lady! Today I got to meet her husband for the first time. Someday, I'm hoping to have an "open" endo meeting where spouses and significant others can attend. My group is overdue for that. In the meantime, I only get to hear about local endo support group members' loved ones in meetings, online, & by phone. So it was a treat to meet her husband after hearing so much about him from Alicia and reading Alicia's blog!

Anyway, Alicia helped me out today and basically alleviated some worries I had about the appointment. It's hard to have a pity party when Alicia's around because she is so bubbly and fun and wonderful! So seeing her while in the city was great. (By the way, I live in the sticks so all of my specialists are 45 minutes each way. That's a lot of gas money but I have to "hunt down" the docs who can handle a "complicated" patient like me). COMPLICATED. That is what my primary wrote on my chart the other day... that my case is "complicated". She meant no offense by this, of course. I AM complicated)!

Anyway, THANK YOU to Alicia (A/K/A "yaya") for brightening my day!! :) Alicia defines TRUE FRIEND!

Sooooooo, for anyone who read my depressing post headline this morning (see earlier in this post), I have updated my post's title (see above) to reflect my improved mood, relief at having exam over, and gratitude at having such a lifelong friend as Alicia who is only 45 minutes away (45 minutes which really isn't all that bad, all things considered, since I do live in the sticks).

I'm glad the appt is over!

P.S. My Tori Amos CD for 90 minutes round trip helped my mood too! Never underestimate the power of music!!