'Jeanne's Endo Blog' Honors Alicia Of 'Yaya Stuff'. Hear Her Brave Story Of Endometriosis-Induced Infertility...

It is Endometriosis Awareness Month!!!

The following is a direct re-print, with permission, of a post written by Alicia (aka Yaya) of Yaya Stuff. She posted it today on her blog and I asked her if I could share it here as well. Alicia is a true friend in every sense of the word. I met her through my local endometriosis support group. I am very fortunate to have such a wise, sweet, caring friend as Alicia.

Endometriosis is one of the most common causes of infertility. Alicia knows all about this devastating combination: endometriosis and infertility. Alicia's candid writing style and open manner help many, many infertile readers on her blog and I'm honored that she has given me permission to re-print the following blog post. For more info on Alicia's journey with infertility and adoption, see her blog Yaya Stuff.

Alicia's Post:

Infertility.

Young Momma from Perfect Pen and I were emailing and she asked some questions (I encourage questions! Knowledge is power! ;) And I decided to turn my response into a blog post because there is some important information that I thought other readers could learn from it.

Below is my response email:

_________________

That's why we aren't doing infant adoption-I could not stand having a baby for a month and then having the birth mom take it back. I would lose it. Completely lose it. We're getting very excited for the mundane process to be over so that we can get our child! Right now we are looking into a 10 year old girl. The problem with any of the kids we would potentially adopt is that they will have emotional issues (rightfully so), but honestly, I think we are strong enough to handle that, and have the background to handle that. It just takes a lot of patience and persistance. Having waited 6 and a half years now for a child, we are well versed in patience and persistance. Fertility treatments....yup....not fun. I've semi-moved-on already from the bio-baby idea. I would love a bio baby. But, I'm so over all these hormones and crap making me big and fat and moody.

I've told my husband I'll do one more. One more pregnancy, whether it be successful, or another miscarriage, that's all I can handle and then I need to move on from bio-kids. It's been a rough road. It's hard having friends and family start trying for kids after us, and now have a few kids under their belt, while we still just want our first. It's hard going to parties and get togethers where conversations revolve around people's kids and we sit there in silence. It's hard seeing all these "mommy clubs" and knowing that I want nothing more then to be a part of them, but I just can't seem to be. Have you ever wanted something more than life itself? Something so much that you would literally give your arm for it? That's how I've felt for 6 and a half years. So when friends and family around us suddenly say 'We're gonna start trying for a baby!' and *boom* the next month they are pregnant, it aches. When they are able to tell everyone about their pregnancy from the very beginning and experience the joys of being pregnant, without fear that they'll lose their baby, I'm jealous. I want that. I will never experience a joyful pregnancy. It will always be filled with fear that loss is just around the corner. I can never get my hopes up.

I guess the hardest part of this road is that people just don't understand. They don't know what to say, so they say nothing. Friends and family don't know how to show support, so they ignore our pain and losses. We feel so alone in our struggle most of the time. Sure, we're happy and live a wonderful life, but there is always this part of us missing. There is this ache we have that will not go away. If you know someone with infertility or infant loss, be there for them. Let them talk about their babies. Let them talk about what they are missing out on. We can tell when you feel uncomfortable, so that's why we stop talking about it. Be unconditionally there for them. After a loss they will want distance. Don't take this personally. They need to heal.If you announce your newest pregnancy or birth, they might need distance again. We ARE happy for you, but we are also aching for what we don't have.

_______________

It's a hard job being friends and family to Infertiles, or those who have experienced Infant Loss. But we need you there. Without you there for us in the hard times and to distract us on bad days and to laugh with us on good days, we'd have no one.

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

"Jeanne's Endo Blog": What Can I Expect From Having A Laparoscopy???

Today I received an email from my friend Alicia (aka Yaya) of:

Yaya Stuff

Here's what Alicia's email to me said:

One of my infertile blogger buddies just posted that she has a laparoscopy coming up:

Confessions from an Impulsive Addict

Thought we should keep her on our radar since this is her first one.

Alicia

After reading Alicia's note, I stopped over to the blog she had mentioned.

By the way, I should highlight the fact that this email from Alicia is a classic example of her going out of her way to help women with infertility and/or endo!!!

Anyway, I posted a lengthy comment on her blog and the thought occurred to me to turn it into a post because several people just this week (!) have come to my attention as being undiagnosed with endo and heading into laparoscopies. Each of these women was anxious!

So in my comment on her blog (see what I posted below)... I explained what I have experienced with laparoscopies. Also, I know MANY women who have had laps and wanted to reassure her that there are plenty of us ready and willing to help her with laparoscopy questions since we've had them (numerous laps for many endo patients).

Here is the comment I posted on the blog:

Confessions from an Impulsive Addict


Impulsive Addict,

Hi! I'm the Jeanne that Alicia (aka Yaya) mentioned above. She sent me an email about you after seeing your laparoscopy post. She wanted to "send you some support".

I have endometriosis and I have had 7 surgeries. Six of them were laparoscopies and 1 was a laparotomy ("major surgery") with a large incision. In that major surgery, I had 2 surgeons working as a team. One removed the endo. The other (a colorectal surgeon) removed a foot of my colon. While they were in there, they discovered a carcinoid tumor on my appendix. So out went the appendix.

I TOTALLY understand your fears and anxiety about having surgery.

Don't hesitate to email me with any questions you have about laparoscopy... because I have had 6 of them!

Here's my email address (written out to foil the robots/spammers): endendo [at] frontiernet [dot] net

Here's my surgery history:

1992: 1st laparoscopy, diagnosed w/endo. Unfortunately, this Dr ended up being a real jerk. I got the correct diagnosis… just no pain relief.

1993: 2nd lap with a more skilled doc who went in and got what the first GYN missed!!

1994: 3rd lap... more endo removed

1996: laparotomy with hemicolectomy/bowel resection due to malrotated colon/paraduodenal hernia that was causing partial intestinal blockage, endo removed again, carcinoid tumor/appendix removed

2003: 4th lap... endo removed again, interstitial cystitis diagnosed via cystoscopy the same day while under anesthesia. (IC and endo often co-exist in the same patient)

2004: 5th lap... believe it or not, the pelvic pain specialist I now see (highly skilled with endo) did not find any endo in this surgery! However, he diagnosed me during this surgery with pelvic congestion syndrome (by also doing a venography to confirm). He also removed a 3" cyst (non-endo type cyst) from my left ovary. This cyst was a "normal" type of cyst that any menstruating woman could have (as far as tissue type) but clearly it needed to be removed since it was 3"!

2008: 6th lap... this lap was for the purpose of cutting a nerve. Nerve cutting is a "last resort" type procedure. I had off the charts pain for several years leading up to this surgery and had gotten nerve blocks, etc. This was one of the 2 out of 7 surgeries where endo was not found. This surgery didn't go as planned. Let’s just say 2 nerves were cut (despite me consenting to one) and the results of the surgery were not good with the nerve cutting (long story). Nothing for you to worry about! Totally different kind of lap.

I’ve had 6 laps so I have lots of personal experience plus I know a slew of people who have had laps as well.

So, if you have questions about laparoscopy, I'm here to help!

Here are some of the "tips" I suggest to women having a laparoscopy:

1) Find out how experienced your surgeon is. Some docs know far more about endo than others. You don't want to have extra surgeries down the road because the first surgery didn't give you the most "bang for your buck". I do not want to increase your anxiety in any way but having a surgeon who really knows endo is really crucial when going into a lap for the reasons you mentioned.

2) Try to relax. It is totally understandable that you are anxious about having surgery --- but worrying about it isn't healthy for you. Whatever coping mechanisms you have to get through the next few weeks without fixating on the lap will help you. Some examples might be: relaxing music, candles (if you're not allergic like me), meditation, acupuncture (VERY HELPFUL!!!!), vegging out & watching TV, blogging, etc... Whatever will distract you from thinking about it will help. Getting all worked up about the lap will get stress hormones going in your body. Not helpful.

3) OK. The surgery. Yes, it's surgery. Yes, it's outpatient. Yes, it's easier than an inpatient (major) surgery... like the 1996 laparotomy that I had.

However, here is a heads up.

In my personal opinion, doctors minimize the recovery time most women need after a lap.

I started a local endo support group in 2001. (That group is where I met Alicia). I have heard many, many stories from women about their recovery time exceeding what doctors predict. DON’T be scared by this but DO give your body TIME and REST after the surgery to properly recover. It’s very important to get rest afterwards!

I've been in endo support groups (the local, in-person kind) since 1992. I have talked with MANY women who have had laps.

I started my blog last June and have heard many more women's stories.

Between the support groups and the blogging, I have heard hundreds of women's stories about their laps. I can try my best to answer any questions you might have.

Obviously I can't give medical advice but I can share my personal experience and the stories of hundreds of other women.

Anesthesia has improved immensely over the years. My last couple of laps were much, much better.

So you are most likely not going to have the type of anesthesia side effects that were common in the 1990s.

The doctor inflates the abdomen with carbon dioxide to allow for better visualization. The laparoscope is used differently by different docs (i.e. number of incisions).

The small naval incision is a given. The question is how many other incisions the doc chooses to make.

Additional incisions allow for instruments to be inserted in multiple locations. (Essentially the doctor can see what's going on much better with the extra instruments/incisions).

If the doc sees something that looks like endo, he/she takes it out. A biopsy is done of the tissue to verify that it's endometrial tissue. Don't be scared by the word biopsy. It's just what they use to tell if it is/isn't endometrial tissue.

Doctors can't always tell endo just by looking at it.

Anyway, assuming you have endo... the doc will remove it, then stitch up the very small incisions (don't worry, they are small), and they'll wheel you off to the recovery room.

You'll wake up... probably feeling pretty feeling foggy. (Everyone's different in how they react to anesthesia). The nurses in recovery will watch you and they have certain criteria to follow on when to switch you from recovery back to your outpatient "room". (It's one of those rooms with curtains for sides but it’s a room).

Once you get to your room, your loved one (hubby in my case, mother in the early years) will tell you what the Dr said about how your surgery went.

You won't talk with the Dr directly until your post-op appt. So it’s important for your loved one to really listen to what the doc says re: how the surgery went, what was found, etc. My husband's phone can do audio recordings. I had him record what the Dr said about my surgery (with the doctor's permission to record his comments). Or the loved one could jot some notes down re: what the doc said post-op.

That way, I didn't have to anxiously wait the 1-2 weeks after surgery to get to the post-op appt & find out what the heck happened. That wait would drive me bonkers!

The post op appts used to always be 1 week after but nowadays they seem to be more like 2. (I personally think 1 week was better).

Anyway, TAKE IT EASY after surgery. Lie down, definitely no lifting, rest, rest, and rest.

Docs tend to minimize when it comes to laps. Surgery is surgery. Yes, you'll be sore. But the pain meds will help and the more rest you get the better you'll feel.

If you try to get too active too soon, it's not good. I've made that mistake. Trust me. You'll want plenty of rest afterwards.

4) Recovery at home... Everyone is different but I would plan on having a very sedentary week after surgery. Some people find it helpful to have a loved one help out. For example, my mother-in-law stayed with us after one of my laps. She took care of my daughter, who was in pre-school at the time while I rested and my husband was at work.

It helps to plan ahead for whatever help you may need.

Don't let anyone pressure you to do too much too soon. Don't buy into any guilt trips. Your body will need time to recover.

Recovery is much better now post-lap than in years past. Docs are better at getting the carbon dioxide out. This is huge because back in the 1990s, I'd get these terrible chest and shoulder pains post-lap and it was the CO2. The good news is docs have improved greatly on getting the CO2 out!

REST, REST, REST

5) Results of lap... if they find that you do have endo, you'll have the proper diagnosis that will enable you to get whatever treatment is appropriate for you.

If it's not endo, the laparoscopy will enable them to look around for other issues.

So the good news is that it's highly likely that this lap will give you some answers or insight or relief... regardless of what it is that they find!

6) I know you're scared. I don't know anyone who doesn't have some fears going into a surgery. These feelings are normal. A first surgery is often scarier because of the whole "fear of the unknown" factor.

That is why I wrote some of the stuff above. While it may not all sound fun, I personally would rather go into something like a lap armed with info than head into "the unknown".

I can provide you lots more info offline if you like.

I have blogged extensively about endo and many women comment on my blog that have not yet had a lap to confirm their endo but strongly suspect they have it.

Feel free to look through my blog because you may find info there that's helpful to you heading into surgery.

I'm generally faster moderating comments than answering direct emails but you're welcome to contact me via either method. :)

I'm sorry to have babbled on so. I just wanted to try to make you feel better. Alicia's email to me had your link and mentioned you were heading into your 1st lap. So I just wanted to stop by and let you know that I'm available if you need an ear or if you have lap questions.

Having had 6 of them, I've learned a few things along the way. :)

I know it's scary and I know the wording on those forms can be freaky.

What may give you some peace of mind is to set up a health care proxy. Sounds complicated but it's not!

You can get the form at any hospital. Here's what I did. I listed my husband as my health care proxy. If I'm unable to advocate for myself or I'm incapacitated in some way, I authorize him to make medical decisions on my behalf.

For example, with my last surgery... I explicitly told my doctor in the pre-op appt "I do not want to have a hysterectomy unless there's cancer”. I went over my wishes in detail with my husband. I designated him as my health care proxy.

That way, I have the peace of mind that my wishes are being respected (say, protecting fertility) while I'm under anesthesia.

That made me feel better. I believe it's so important for patients to advocate for themselves and to delegate that duty to someone they trust if/when they are going to be unable to speak for themselves.

I'm sorry to get all serious on you. It's not all doom and gloom!

They might find endo, remove it, and help you somehow (pain relief? fertility?)

I know MANY women who have had laps that would be happy to talk with you about their experiences. If that would give you any comfort or peace of mind, let me know!

I'm a big believer that "fear of the unknown" is far worse than reality most of the time. Knowing what to expect may calm you down heading into this surgery.

I have posts about coping mechanisms, the healing power of music, relaxation etc. You may find something on my blog that will "calm your nerves" a bit about the lap.

Hang in there!!!! When I read your post and heard how worried you sound about surgery, I felt compelled to respond with this detailed comment because I want to help!

So, use these next few weeks to prepare. Take advantage of the notice to make arrangements for your recovery period, for example. Instead of dreading the wait for your lap, use this time to use or develop coping techniques, relaxation, stress reduction, etc.

I know you'll be relieved to get the surgery behind you. That's understandable. However, if you use this time to prepare, physically and mentally, things will go much more smoothly than you might think.

I hope this comment makes sense. I've had terrible insomnia and have been getting very little sleep lately. So I'm feeling dizzy and out of it right now from being so tired. So I apologize if this comment is talking in circles at all.

I'm exhausted and in pain and on my last little bit of energy right now.

I hope something in here is helpful!!

Again, don't hesitate to contact me if you have questions or just need to talk to someone who has had numerous laps before.

I'm sending positive energy your way and wishing you a smooth surgery and recovery.

Remember... after the surgery:

REST, REST, REST :)

Take care and try to relax... For me, acupuncture is at the top of my list when trying to calm down!

Have a wonderful night! :)

{{Hugs}}

I'm around if you need me!!!

Jeanne

February 20, 2009 5:54 PM

Hopefully this will be helpful info to anyone out there reading this who is wondering about laparoscopies or scheduled for a first laparoscopy.

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

VIDEO: 'Jeanne's Endo Blog' -- Any Patient Or Caregiver Who Deals With Chronic Conditions Can Probably Appreciate This Fantastic Video!

As I am far too tired to write a post, I decided it was high time to post a video. Loyal readers of this blog may recognize it from when I posted it months ago (or may have seen it in the YouTube video "slideshow" located in my blog's right sidebar).

Just because a condition isn't visible doesn't mean it doesn't hurt!!

(Video posted on YouTube by "booknhorsefreak" on October 10, 2007)

When I first saw this video, it made me cry and gave me chills. When I just came across it again (months later), it did the same thing to me. Whatever condition(s) you may have, you will probably relate to this video on some level. Between the gorgeous pictures, the perfect words that accompany them, the way this whole video just resonates for patients and caregivers alike, and the hauntingly beautiful music on the clip (sung by Natasha Bedingfield)... I have a feeling it will move you as it did me!

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

INFERTILITY, IVF, & Keeping Hope: Sarah Motes Ashley - Singer. Songwriter.

YouTube description of the following video:

"Five years, six IVFs, 30 pounds: what infertility is doing to me. Music video by Sarah Motes Ashley and Somebody's Band for the International Infertility Film Festival".



(Video clip posted on YouTube by "sarahmotesashley" on March 28, 2008)

SEE SARAH'S SITE --- Sarah Motes Ashley: Singer. Songwriter.

If you are interested in seeing her sing live, there is an option from her website that allows you to submit a request for a particular geographic area if you wish. Sarah Motes Ashley was the winner of a 4th Annual International Infertility Film Festival (IIFF) in 2008.

See the International Infertility Film Festival (IIFF) site for more information about the film festival.

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

Guest Blog Post: Kelly Damron's Journey With Infertility - Author Of "Tiny Toes: A Couple's Journey Through Infertility, Prematurity, and Depression"

Meet Kelly Damron.

I am a fan of Kelly's blog Twin Peas Blog And Podcast and I asked her if she would be so kind as to write a guest blog post for my blog. She kindly agreed to guest blog and here is her thorough, in-depth, and compassionate article. I am thrilled to share it here.

Here is some information about Kelly taken from her blog profile:

Kelly Damron survived infertility only to experience the premature birth of her twin daughters. She rebuilt her marriage that had been on the brink of ending in divorce all because of infertility. In her blog she talks about infertility and much more.

Below is Kelly Damron's guest post. I'm honored to have her guest blog here!

Many women who have endometriosis struggle with infertility. For purposes of full-disclosure, I've never had endometriosis. I cannot imagine the pain you feel each month nor can I relate to the stress that disease places on your body. However, I can relate to your desire to have a baby and how infertility can compound the challenges you already face.

Quickly I'll share my story. My husband was diagnosed with male factor infertility (he had poor sperm). We had tried to conceive spontaneously for 12 months before both of us went to the doctor for testing. I underwent every possible test to determine if I had blockages, endometriosis, lesions in my uterus, etc. You name it and I was tested for it. With male factor infertility, as with endometriosis, your options for getting pregnant can be limited. In our case, the best option was in vitro fertilization with intracytoplasmic sperm injection (ICSI) -- which is where they manually inject the sperm into an egg because the sperm isn't able to fertilize the egg on its own. We were lucky and conceived using IVF/ICSI. We thought we were really lucky when we found out it was twins. After all, many women I meet tell me how they want twins or that they wanted twins. However, my twin pregnancy ended early at 30 weeks gestation. My girls were only 2.5 pounds each. They spent 7 weeks in the Neonatal Intensive Care Unit. One of my daughters had a preemie disease and had a life saving surgery when she was only 4 weeks old. Today my girls are healthy and happy. They don't seem to have any long-term consequences of their prematurity. We are lucky and truly blessed for the gift we have been given. Thank goodness for medical advances - they got us pregnant, kept us pregnant and kept our girls alive until they could survive the outside world on their own.

Now onto the real reason for this post. Jeanne asked me to write a post about infertility for her readers. I'm honored that she trusted me with this subject and gracious she asked me to be a guest blogger.

As challenging as it is for people to understand what endometriosis is, it's even more challenging for them to comprehend infertility. Many people consider infertility to be a lifestyle choice. The comments can be cruel: it's natural selection, you weren't meant to have kids, etc. However, infertility is a disease. It is a disease of the reproductive system and can impact both men and women. When you look at the underlying causes of infertility you can pinpoint the disease (except for unexplained infertility which is about 15 percent of all infertility cases). Medical reasons for infertility include, but are not limited to, endometriosis, Polycystic Ovary Syndrome (PCOS), male Varicocele, etc. Male factor accounts for about 30-35 percent of infertility and 55 percent is female or combo male/female factor. No matter the reason, infertility is stressful, sad, private, and lonely.

When a woman is diagnosed with cancer or heart disease she talks freely about her diagnosis and receives compassion from friends, family, co-workers, etc. People understand cancer and heart disease. These are also deadly diseases that if not treated can kill you. This is not the case with infertility. If you are diagnosed with infertility it is very unlikely that you face death. However, you might feel dead inside. I did. I wanted a child more than I wanted to live another day without one. Some of you can probably relate. Some of you might think that I was a little dramatic. Each of us handles our crises differently and this should be okay.

What do you do, though, if you want a baby yet you're faced with female and/or male factor infertility? My advice is to start looking for answers to your questions. You may not even know what your questions are, that is okay too. There are a ton of resources for you. Here is a short list:

InterNational Council on Infertility Information Dissemination, Inc. (INCIID)

RESOLVE: The National Infertility Association

American Fertility Association

Fertility LifeLines

Fertility Today Magazine: "America's Leading Expert in Reproductive Medicine"

About.com: A source for infertility information and discussion forums

My Fertility Plan: Not sure where to start? Contact My Fertility Plan to save money and time before you start your journey

Infertility is complicated by the stigma faced by both men and women. For a man, sperm production can be associated with his manliness. Same logic can be true for women and being pregnant/having a baby. Other issues are the political and/or religious argument against fertility treatments. As you may know the Vatican recently voiced their opposition to assisted reproduction, especially IVF. If you are Catholic this may put you in an awkward place in your family building journey. And I haven't even explored the cost of family building, whether its fertility treatments or adoption, it's expensive and more often than not there's no health insurance coverage...

To end this post I'm offering a few tricks that I learned along the way. Some of these I didn't practice and some I did.

1. Infertility is a couple's disease. It doesn't just impact you, even if you're the one with the medical issue. You are both in this together. My husband and I didn't take this approach initially and our relationship suffered because of it.

2. Communicate often with your partner. This is something my husband and I didn't do well. We made a lot of assumptions about what the other person wanted, and we were often wrong. It created a lot of conflict and almost led to divorce. Be open and honest. It will serve your relationship better in the long run.

3. Tell your friends and family members what you are going through. Often women will tell me this backfires on them. They are often disappointed with the lack of support they receive once they tell all. My logic is that when you let them know you learn who can support you and who cannot. It's always good to find the shoulder you can lean on as it may not be the one you were expecting it to be. I expected my friends who had gone through infertility to be my greatest supporters; instead it ended up being my friends with children. My infertile friends wanted to move on and forget once they got pregnant. They were no help at all, who knew? When those you love are not supportive I think it's because they don't understand the disease or how it makes you feel. Use this as an opportunity to educate them. Point them to websites or blogs they can read. They'll come around eventually and if they don't there is a lesson to be learned here too.

4. Do your own research. Before and after your doctor appointments educate yourself on the terminology, options, etc. My husband and I did this when we got our first set of results and it helped prepare us for discussions with the Reproductive Endocrinologist. It was nice to be able to talk with the doctor and understand the terms he used. It was comforting to know that the information he provided was similar to what we had read.

5. Ask a lot of questions. Whether you seek referrals from others who have been there, done that or ask your doctors/nurses question, make sure every question you have gets answered.

To the readers of Jeanne's blog, I'm offering you one of my two ebooks, free, which are generally only available to subscribers of my blog.

Send Kelly an email at info [at] twinpeas [dot] com and she’ll send you a copy.

Choose from:

A. 30 Questions to Ask Your Doctor about Infertility and Treatments

B. Managing Your Relationships and Your Sanity During Infertility


Best of luck to you on your journey to build your family.

Kelly Damron
Author of "Tiny Toes: A Couple's Journey Through Infertility, Prematurity, and Depression"
Blog: www.Twinpeas.com/wordpress.

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

Infertility?? Check Out Alicia's 'Mommy Wannabe Club' To Connect With Others!!

Meet Alicia.

Some of you may know her by her nickname ("Yaya"). I first met Alicia through my local endometriosis (in person) support group. She is a fellow blogger and a strong, inspirational woman who works intently at advocating for patients with a history of infertility and miscarriages/pregnancy loss.

Alicia's passion, drive, determination, caring, humor, and compassion have attracted a flock of readers to her blog. She is helping great numbers of people. It is an honor to call Alicia my friend, to learn from her, to watch her advocacy efforts blossom, and to witness the multitude of ways she is helping others!

She is also becoming a great source of information on adoption and the foster-to-adopt process. Her blog covers all of these issues and much more.

Here is a brief biographical sketch about Alicia from her blog profile:

"Read along in my quest to become a Mommy, one way or another. It's been 6 years and several miscarriages, but I'm not giving up!"

My friend Alicia of the blog Yayastuff has launched a new venture!


Visit Mommy Wannabe Club


She has started a social network called the Mommy Wannabe Club.

Here is her blog post about it:

Wednesday, December 31, 2008 Mommy Wannabe Club

Alicia asked me if I would help her get the word out about her new club. I am honored to assist her efforts in any way I can!


View my page on Mommy Wannabe Club

Perhaps some of you reading this may be interested in joining?

Thank you Alicia for everything you do!!!

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

Jenni Saake's Tips For Coping With Infertility At Holiday Times...

Recently, I was thinking about how the holidays can be a particularly challenging time for infertile couples. With all of the holiday get-togethers (often with babies and small children present) and with all of the "holiday expectations" many face this time of year, I decided to contact Jenni Saake for ideas on coping tips for dealing with infertility at holiday time.

I didn't have an email address for Jenni, who I "met" online several months ago through National Invisible Chronic Illness Awareness Week.


Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network


So I sent her a twitter message asking if she had any ideas for writing a post about coping with infertility at holiday time.

Jenni Saake is the author of:

Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage, and Adoption Loss



Here is a site with information on her book, referenced above:

Hannah's Hope

After contacting Jenni on twitter, she sent me several messages back with feedback on my question. I really appreciate her quick response and I'm including links she provided here. Hopefully they will help readers struggling with infertility (endometriosis-induced or otherwise).

Here are the links Jenni Saake provided:

1)

"Surviving 'Parent's Days': 101"

This is an article written by Jennifer Saake. [This article is geared for Mother's Day and Father's Day but may also help when coping with other holidays, per Jenni].

2)

The Road Less Traveled: A Journey Through Infertility

[This article written by Meridith at the cited link].

3)

Great Books For Christmas Gifts For The Reproductively Challenged Woman

[This article written by Barbara Winters at the cited link].

To contact Jenni Saake, you can click link below to visit her on twitter:

Jenni Saake (aka "Infertility Mom")

A few months back, there was a seminar on blogtalkradio talking about "Medications, Illness, Fertility and the Desire for Motherhood" with Jenni Saake. (Her seminar is available in the blogtalkradio archives).

Just click the "blogtalkradio" icon in the sidebar to access her seminar from last fall.

Related link:

Wednesday, September 10, 2008 Endometriosis Blog: National Invisible Chronic Illness Awareness Week - "Medications, Illness, Fertility and the Desire for Motherhood"

Hopefully's Jenni's links above and her blogtalkradio seminar will be useful for readers coping with infertility at this challenging time of year!

THANK YOU JENNI!

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

(VIDEO): Menstruation Education Courtesy Of Disney And Kotex!

Disney & Kotex paired up to produce this video clip in 1946 (posted on YouTube). I stumbled across it today and felt compelled to post it here. Before posting the clip, I asked my friend Alicia (aka Yaya of Yayastuff) for advice at presenting this clip in a sensitive manner. (I'll leave the insensitive part to the video clip itself). For those unfamiliar with Alicia's background, here is her "about me" summary from her blog:

Alicia aka "Yaya" says --- "Read along in my quest to become a Mommy, one way or another. It's been 6 years and several miscarriages, but I'm not giving up!"

Below this clip are the captions Alicia came up with for it. (I asked her for ideas because she's much funnier than I am and because I didn't want to offend any readers with this clip. It is either offensive, funny, or both... depending on who is watching it and their mood/life situation...

So here is Alicia's "movie review":

"Dang those hormones!"
"Just Blame The Pituitary"
"Mother Nature Hates Me"

Despite Alicia's intense suffering on her path to motherhood, she continues to retain her keen sense of humor and I thought including her "video captions" with this video would be a perfect fit. I wanted to be sensitive to readers that might take offense to Disney and Kotex's mini-film (about 10 minutes long). It is NOT included here to offend (!!) but rather to assist women my age at comprehending at what the generation before us was taught! Perhaps between the utter nonsense and sexism in it, you may find some twisted humor in watching this video and picturing it being shown in sex education classes in schools. It's no wonder mothers the age of mine are generally not comfortable talking about periods and period pain!!

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

Endosulfan Pesticide Banned in New Zealand: Endometriosis, Infertility, Breast Cancer & Pesticides...

Do you have endometriosis, infertility, or breast cancer? Then this post may be of interest to you.

I am currently reading a book called Silent Spring (for information regarding this book, please see the environmental section of the right sidebar of this blog).

It talks about a number of things including pesticides. I am about 2/3 of the way finished with this book and I look forward to telling you more about it in a future post.

Interestingly, I just last night received a Google alert for endometriosis regarding a pesticide called endosulfan that has been banned in New Zealand.

Here is the Google alert I got that was flagged for the key word "endometriosis":

The New Zealand Herald: Cancer group delighted with ban

The reason this is particularly interesting to me is that the Silent Spring book I'm currently reading was written decades ago and covers the dangerous effects of pesticides, insecticides, and herbicides.

ALL THESE YEARS LATER, SUCH TOXIC CHEMICALS AS THOSE WRITTEN ABOUT IN SILENT SPRING ARE STILL IN USED IN SOME PARTS OF THE WORLD.

It is alarming that the warning bells of Silent Spring were not heeded and that chemical companies' profits appear to have won out over public health, the well being of the planet itself, and common sense. Rachel Carson's prescient story of the profound impact of such toxins is mind-boggling to me.

Endosulfan has been banned in many countries as per the preceding wikipedia link.

Per the wikipedia entry on endosulfan, it is registered for agricultural use in the United States.

Here is an excerpt from the endosulfan wikipedia entry:

Health effects

Endosulfan is one of the more toxic pesticides on the market today, responsible for many fatal pesticide poisoning incidents around the world [see the wikipedia entry for footnotes]. Endosulfan is also a xenoestrogen — a synthetic substance that imitates or enhances the effect of estrogen — and it can act as an endocrine disruptor, causing reproductive and developmental damage in both animals and humans. Whether endosulfan can cause cancer is debated.

For more information on endocrine disruptors, see the "Our Stolen Future" website.

This book is next on my reading list and I plan to review it in the future.

After numerous quotes from and references to this book on this blog, I am finally going to read it in its entirety! (See book info in right sidebar of this blog).

First, I need to finish reading "Silent Spring"!

Related articles:

There are numerous articles that have talked about some of the topics mentioned in this post. For more info from past posts, please use the search engine located in the top left corner of this homepage. Type in your search word and then just click search to be routed to previous articles.

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

Endometriosis Blog: November Is National Prematurity Awareness Month

Today I was inspired to write a post after reading an excellent article posted by Kelly Damron!

Her blog is called Twin Peas Blog and Podcast: Infertility and Premature Birth resources and experiences.

I was just reading Kelly Damron's blog post regarding the fact that November is National Prematurity Awareness Month.

I didn't realize until reading Kelly's post that November 12th was National Prematurity Awareness Day because I hadn't heard about it until after the fact!

However, again, the entire month of November is National Prematurity Awareness Month

When certain conditions get more attention and research dollars than others, it's hurtful and damaging to those who have the "under researched" issues that are less talked about in public circles.

Now don't get me wrong. I'm not advocating graphic descriptions of laparoscopic surgeries at the dinner table. What I am saying is that if a bladder cancer patient can discuss his/her condition with family and friends... then patients with endo or patients with infertility/miscarriage history and/or adoption proceedings should be able to discuss their situations just as freely... if they wish to do so.

As Kelly alluded to in her blog post, relatively little attention is given to events honoring "infertility, loss, and premature babies" and that there is much more publicity given for other conditions. This simply should not be the case.

Here are my thoughts after talking with many women who have or have had infertility, miscarriages, and had premature babies...

1) Our society as a whole doesn't know how to deal with these issues. People may gave good intentions to be "polite" and to not be "intrusive". They may avoid discussing these topics for fear of upsetting couples dealing with these issues. However, this can lead to isolation of the couple and make the healing process harder for them than it would be if they felt they could talk openly about it. While patients who go through these emotionally draining and exhausting issues all have their own ways of dealing with their situations, most that I have met WANT to talk about it.

PLEASE NOTE: For open and candid discussion about infertility, miscarriages, and starting the adoption process, please see my friend Alicia's information-packed blog Yayastuff.

Alicia's candor about the wide range of emotions she has been through on her journey is a testiment to her strength and determination. Her courage is inspiring her many readers on her blog!

2) Illnesses or conditions that affect or are related to reproductive organs tend to be less openly discussed than others. For example, endometriosis is rarely brought up in casual conversation but if a person were to talk about asthma or diabetes, the conditions would/could just be discussed openly. There are people who are uncomfortable discussing issues that make them feel awkward. It has taken years for me to do a 180 degree turn from being quiet, shy, and downright mousy about my endometriosis (and other) symptoms... to being open, candid and comfortable talking about my illnesses as if they were any other. (It took me a few years to fully comprehend that I have nothing to be embarrassed about or feel awkward about. If others don't feel self-conscious discussing their conditions, why should I feel muzzled about my health issues)???

I'm not sure if my theories answer Kelly's question or not but I have seen in working with many women in endometriosis support groups that there is often a "stigma" or a level of embarrassment that women sometimes feel when discussing "taboo subjects" such as periods, cramps, hormones, etc. This is truly unfortunate.

How can we band together to make headway on these issues if people aren't talking much about it? If the people dealing with these conditions don't feel at liberty to discuss them with anyone but fellow patients, how will anything ever change for the better as far as awareness?
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Please see previous articles I have written about the other (related) awareness days and/or weeks that I heard about in time. Thanks to Kelly, I heard about awareness month in time to post about it for November!

Related articles:

Wednesday, October 15, 2008 Stillbirth Awareness and Research Act

Sunday, October 19, 2008 Endometriosis Blog -- RESOLVE: National Infertility Awareness Week Is October 19-25, 2008 -- Reminder

Tuesday, October 21, 2008 Endometriosis Blog: National Infertility Awareness Week -- A Personal Story

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

Endometriosis Blog: National Adoption Awareness Month

November is National Adoption Awareness Month.

My husband told me yesterday he had heard something about this on the radio but he didn't catch whether it was an awareness day or month.

I just saw this blog post on my friend Alicia's blog, Yayastuff.

Alicia's November 16, 2008 blog posts refers readers to another blog that features an adoption post by Felicia.

I would like to thank Alicia for bringing this post to my attention and Felicia of The Life Of A College Stay At Home Mom for writing about awareness month!!!

Alicia and her husband have officially started the adoption process. Please see her blog for more information about adoption: Yayastuff.

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

Endometriosis Blog: Letters And Petition Sent To Oprah And The View To Create Awareness & Understanding About Endometriosis

Below is the letter I sent to Oprah. Since there is a character limit on emails to Oprah & since there is no option to include the petition as an email attachment, I snail mailed it.

A similar letter was sent to The View .

PLEASE KEEP ADDING SIGNATURES TO THE PETITION!!! I AM SUBMITTING NAMES NOW IN AN EFFORT TO GET A FEATURE ON ENDOMETRIOSIS TO AIR AS SOON AS POSSIBLE BUT THIS DOES NOT MEAN WE CAN'T CONTINUE TO ADD NAMES TO:

Create Endometriosis Awareness & Understanding Petition

Here's my letter to Oprah:

Dear Oprah,

For 26 of my 39 years, I have suffered symptoms of an illness called endometriosis. I have had 7 abdominal surgeries since 1992.

This illness affects an estimated 5.5 MILLION women in North America and 89 MILLION women worldwide.

The definitive way to diagnose a patient with endometriosis is to perform a surgical procedure called a laparoscopy. I had endometriosis for 10 years before I was finally diagnosed at the age of 23. Sadly, this type of lag between onset of symptoms and diagnosis is VERY common.

I was diagnosed in 1992 with endometriosis. I have participated in endometriosis support groups for 16 years. These have been immensely helpful sources of information, support, and resources. Through endometriosis support groups I have met so many strong, caring, empathetic, wonderful women.

Over the years, I have heard so many heartbreaking AND heartwarming stories from women with endometriosis. The heartbreaking stories have covered the impact endometriosis can have on women’s relationships, overall quality of life, career choices, fertility, self-esteem, and overall physical health. The heartwarming stories have covered the many ways endometriosis patients support each other, the ways family and friends show their love and support to patients, and the tales of doctors who respect their patients enough to take their symptoms seriously.

I recently started an online petition to create awareness and understanding of endometriosis. In the short time since I started this petition, women AND men from around the world have signed it. As of now, we have signatures from the U.S., the UK, Puerto Rico, Canada, Australia, and South Africa. I felt it important to write you now (versus waiting for more signatures to be added) because there has been a great deal of press lately for the two women from Dancing with the Stars who have been diagnosed with endometriosis: Lacey Schwimmer and Julianne Hough. These women were diagnosed within days of each other and many media outlets have reported about their diagnoses of endometriosis.

Unfortunately, some of what has been reported in the media about endometriosis (in relation to these two women) has been confusing or even misleading to the public. For example, multiple media outlets report that Lacey Schwimmer received a diagnosis of endometriosis. However, there is no mention of her having had a laparoscopy. In fact, she has not missed a single week performing on the show. Laparoscopy remains the only method for a definitive diagnosis of endometriosis. Julianne Hough’s laparoscopy took place the day AFTER she announced on Dancing with the Stars that she has endometriosis (and that she’d be having her appendix removed during the next day’s surgery). There are no media reports to indicate that she had had a previous laparoscopy. In fact, she was interviewed as saying that she’d had symptoms for the 5 years leading up to her recent surgery. So it would appear that her diagnosis was given PRIOR to the laparoscopic surgery she just had.

While there may well be more ‘behind the scenes’ to Ms. Schwimmer’s and Ms. Hough’s stories that might clear this confusion up, the fact right now is that the general public is hearing that these two women have been diagnosed with endometriosis WITHOUT THE BENEFIT OF HAVING THE LAPAROSCOPIC SURGERY THAT, TO DATE, IS THE ONLY DEFINITIVE MEANS OF DIAGNOSING THE CONDITION.

After hearing multiple media reports about the diagnoses of endometriosis for both women from Dancing with the Stars and hearing the mixed message that the public is receiving, I decided it was important to speak out about the FACTS on endometriosis.

That is why I started an awareness petition and that is why I’m sending you the link to this online petition sooner rather than later. I think it’s crucial to correct the record about endometriosis as soon as possible -- WHILE ENDOMETRIOSIS IS STILL BEING TALKED ABOUT IN THE MEDIA in the wake of the two Dancing with the Stars women’s diagnoses.

PLEASE see the link below to the online petition to “Create Awareness & Understanding About Endometriosis”. It contains 110 signatures & 49 comments to date:

Create Endometriosis Awareness & Understanding Petition

The comments on this petition are eye-opening, educational, heartbreaking, and compelling. At the same time that many of the petition comments break my heart, it is so wonderful to see not just endo patients speaking up but mothers, fathers, sisters, husbands, mothers-in-law, grandmothers, etc!!

It is hard to single any petition comments out because they are ALL so important and valuable. However, one remark that stood out to me and tied together just about all of the other comments was this:

***** “Knowledge is power” *****

One endometriosis patient wrote me pleading that I make sure this petition gets into the hands of someone who can help create awareness and understanding of endometriosis. I feel a responsibility to get this message out to the public.

All who have left comments on the petition seemed to echo this previous statement… that we need to get the petition into the hands of someone with the power and/or ability to help educate the public about endometriosis and to help not-yet-diagnosed endometriosis patients to seek out appropriate medical attention for this serious illness.

I ask your assistance in getting the FACTS about this illness disseminated to the public. If you would be so kind as to consider airing a segment on the topic of endometriosis, we would greatly appreciate it!

This illness affects up to 89 MILLION women. Yet, many women suffer in silence due to factors such as:

* Inability to find a doctor skilled in diagnosing & treating endometriosis

* Misunderstanding or lack of awareness about endometriosis and the symptoms associated with it

I have seen marriages that were strained by endometriosis (many resulting in divorce with endometriosis being a factor that led up to it) and I have met dozens of women who experience infertility and/or terrible pain. I have met women who are unable to follow their chosen career path due to the severity of their symptoms. (This by no means implies that endometriosis patients are not capable and hard-working!! In fact… many endometriosis patients I know personally, of those still physically able to work outside the home, have a tendency to overcompensate for their illness by being very high achievers and being exceptionally productive in the workplace).

Please see my blog on endometriosis and other chronic illnesses:

Jeanne's Endo Blog

Please consider airing a story on the facts about endometriosis. Creating awareness and understanding of this illness is SO important to SO many women and their loved ones!!!

Sincerely,

Please keep spreading the word about endometriosis. Please sign the petition if you have not already done so. Please encourage your loved ones to sign too (anyone wishing to create awareness & education about endometriosis is welcome to sign). The better we spread the word, the more signatures we'll get. If necessary, I can re-submit requests for endometriosis airtime in the future and I'll use the growing online petition when I do so!

Thank you!!

Related link (that contains many other related links):

Saturday, November 8, 2008 Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View

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

Endometriosis Blog: Infertility Awareness Week Guest Blog -- Reprint From "Yaya Stuff" Blog (Alicia's Firsthand Experience With Infertility)

This is infertility awareness week.

PLEASE NOTE:

The following post on infertility is reprinted from Alicia's blog with her permission.


Please see her Yaya Stuff blog:

Yaya Stuff: My Life: Random thoughts, Daily Events, Miscarriage, TTC, IF, Adoption, Endo, Friends, Family, Nanny Job, Fur-Babies

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Wednesday, August 20, 2008

Infertility Support Group Meeting

Last night I attended a support group meeting for Infertility. I always walk away from support group meetings in a better mood. It's awesome to be in a room full of people who know exactly how I am feeling, without me even saying a word. Last night's meeting was on Chinese medicine to help infertility, and also gave people a chance to voice questions and concerns about living with infertility. It's nice to know that I'm not alone in my daily thoughts that surround my infertility. The woman running the meeting gave the wonderful advice (you've probably heard it before) of "Thou Shall Not Covet". It is hard for women with infertility to not feel jealousy over seeing women with babies and knowing that we want that so badly, but just can't have it. Jealousy, frustration, anger, sadness, and self-hating thoughts (ie; my body is not good enough, my body is a failure) are just a few of the near daily thoughts for a woman suffering with infertility. Not to mention that it also wears on a marriage and relationships. The monthly cycle is intensified for a woman with infertility. We count days constantly, we worry about over-exertion, we worry about timing. Then...we believe we are pregnant, we believe that "this is the month", we start taking every little symptom as a pregnancy symptom. We get our hopes up.....then.....once again.....our period shows up and these thoughts/dreams we just had all over again (that we promised we wouldn't indulge in this month) are crushed/shattered/destroyed. And don't even get me started on weight gain. Every month when we think 'I'm pregnant!' we start to eat a little extra, then, we're not pregnant, and all those extra calories were for nothing. It's a perpetual cycle. I just want to know, when will I get my happy ending?


PS. For my 'infertility readers'-in the left column of this blog is a song you can play that reminds me and helps me with my battle with infertility. It's called 'Chasing Pavement' by Adele.

"Thou Shall Not Covet"

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The "Chasing Pavements" song Alicia referred to in the above post is in the music player in my right sidebar.

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

Endometriosis Blog: National Infertility Awareness Week -- A Personal Story

This week is infertility awareness week...

My friend Alicia has numerous insightful, informative posts on infertility and miscarriage... based on her firsthand experience.

Please see my friend Alicia's blog for personal insights on infertility and miscarriage:

Yayastuff -- My Life: Random Thoughts, Daily Events, Miscarriage, TTC, IF, Adoption, Endo, Friends, Family, Nanny Job, Fur-Babies (**For posts on specific topics please see 'Labels' in left column of blog**)

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

Endometriosis Blog -- RESOLVE: National Infertility Awareness Week Is October 19-25, 2008 -- Reminder

The following post contains information from RESOLVE, The National Infertility Association...

This is a re-run of the October 10, 2008 post that first mentioned this infertility awareness week. I wanted to be sure to mention it again now that we are in the awareness week itself!

RESOLVE:
National Infertility Awareness Week
October 19-25, 2008

RESOLVE: The National Infertility Association

The following information is taken directly from the RESOLVE website listed above. I just wanted to pass this along for anyone who is interested in checking it out.

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PLEASE NOTE:

If you are interested in registering for the web chats mentioned below, please see RESOLVE: The National Infertility Association.

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Join us for two Web chats led by leading fertility experts
on different topics surrounding infertility.

Moderated by Barbara Collura, Executive Director of RESOLVE
Tuesday, October 21, 2008, 8:00 p.m. ET
Cancer and Infertility
Speaker: Lindsay Nohr Beck, Founder and Executive Director, Fertile Hope
Cancer survivor Lindsay Nohr Beck will lead a discussion about the options available for cancer patients in the different phases of diagnosis and treatment. In her discussion, Lindsay will review the available resources that can help you communicate with your oncology and fertility teams, provide you with financial assistance, and support you in getting through this difficult time.

Click here for helpful resources about cancer and infertility.

Register here.

Wednesday, October 22, 2008, 8:00 p.m. ET
Get “In the Know” About Your Fertility
Speaker: Dr. Alice Domar, Assistant Professor, Harvard Medical School; Founder and Director, Domar Center for Mind/Body Health at Boston IVF
Dr. Alice Domar, the “Fertility Goddess” according to Vogue, will lead a discussion about both the physical and emotional impact of infertility. Through the discussion, you will have an opportunity to learn more about the causes of infertility in males and females, tips for coping with the emotional impact, as well as available treatments and resources that can help couples navigate medical costs.

Register here.

Not able to participate in one of the discussions? The information will be posted on www.resolve.org/takecharge and in the new RESOLVE Resource Library after the discussions.

The Take Charge! Web chats are brought to you by Fertility LifeLines™, a free support service provided by EMD Serono, and by RESOLVE: The National Infertility Association.

Fertility LifeLines™ and RESOLVE: The National Infertility Association will keep your information confidential and will not use the email addresses provided for purposes other than to send reminders about the Web chat programs. We do not sell your personal information to anyone.

Thank you.

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

Endometriosis Blog -- RESOLVE: National Infertility Awareness Week Is October 19-25, 2008

The following post contains information from RESOLVE, The National Infertility Association...

RESOLVE:
National Infertility Awareness Week
October 19-25, 2008

RESOLVE: The National Infertility Association

The following information is taken directly from the RESOLVE website listed above. I just wanted to pass this along for anyone who is interested in checking it out.

+++++++++++++++

PLEASE NOTE:

If you are interested in registering for the web chats mentioned below, please see RESOLVE: The National Infertility Association.

+++++++++++++++

Join us for two Web chats led by leading fertility experts
on different topics surrounding infertility.

Moderated by Barbara Collura, Executive Director of RESOLVE
Tuesday, October 21, 2008, 8:00 p.m. ET
Cancer and Infertility
Speaker: Lindsay Nohr Beck, Founder and Executive Director, Fertile Hope
Cancer survivor Lindsay Nohr Beck will lead a discussion about the options available for cancer patients in the different phases of diagnosis and treatment. In her discussion, Lindsay will review the available resources that can help you communicate with your oncology and fertility teams, provide you with financial assistance, and support you in getting through this difficult time.

Click here for helpful resources about cancer and infertility.

Register here.

Wednesday, October 22, 2008, 8:00 p.m. ET
Get “In the Know” About Your Fertility
Speaker: Dr. Alice Domar, Assistant Professor, Harvard Medical School; Founder and Director, Domar Center for Mind/Body Health at Boston IVF
Dr. Alice Domar, the “Fertility Goddess” according to Vogue, will lead a discussion about both the physical and emotional impact of infertility. Through the discussion, you will have an opportunity to learn more about the causes of infertility in males and females, tips for coping with the emotional impact, as well as available treatments and resources that can help couples navigate medical costs.

Register here.

Not able to participate in one of the discussions? The information will be posted on www.resolve.org/takecharge and in the new RESOLVE Resource Library after the discussions.

The Take Charge! Web chats are brought to you by Fertility LifeLines™, a free support service provided by EMD Serono, and by RESOLVE: The National Infertility Association.

Fertility LifeLines™ and RESOLVE: The National Infertility Association will keep your information confidential and will not use the email addresses provided for purposes other than to send reminders about the Web chat programs. We do not sell your personal information to anyone.

Thank you.

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

Endometriosis Blog: Infertility & Miscarriage --- "Letter To A Friend"

Below is a portion of a post by my friend Alicia on her blog. (Alicia has endometriosis and has experienced both infertility and miscarriage). After her post, you'll see my comment back to her below it.

Here is her blog address:

http://yayastuff.blogspot.com/

Since her post and my response are regarding infertility and miscarriage, I decided to include them on my blog. As Alicia as I are friends in addition to fellow bloggers and we belong to the same local endometriosis support group, I am calling this blog post "Letter to a friend".

In order for my comment to Alicia to make any sense, you need to see her blog post first.

See her post and my response below.

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Alicia's blog post:

Thursday, September 11, 2008

Why Am I Hiding?

I was just realizing that I've been stalling in terms of blogging lately. Is it that nothing is on my mind? Or is it that I'm scared to share the true thoughts of what's on my mind? I just looked through my previous blog posts and realized that of the 185 of them, there are 18 of them that I never published. Many of these have to do with infertility and miscarriage, and while it's clarifying in and of itself to write about these, I think I often choose not to publish them because these two topics are often seen as taboo in our society. They are the 'un-talked-about', the 'silent illness', the big elephant in the room, the shadow in the corner, or however you want to look at it. I pride myself on 'not caring what other people think', but then in seeing that I'm worried to post these types of things on MY blog where I can write whatever the heck I feel like, well, I'm just falling into the societal norms. I'm disregarding my true feelings on miscarriage and infertility for fear that it will make my readers uncomfortable. I wish that these two topics were more widely discussed in our culture. On the other side of the world, miscarried babies have their own shrine where people visit and leave toys and presents to the babies. That would never happen here in the western part of the world. Why? Why are we so scared to talk about these topics? Is it like the plague? Do people think that they will 'catch' miscarriage and/or infertility if they are willing to discuss it?
I recently attended another infertility support group meeting and it was amazing. You walk into a room where everyone knows what you are thinking, without saying anything. You walk into a room of acceptance where you can talk about missing your babies you've lost to miscarriage, and the other people in the room don't shudder in non-acceptance. It's an awesome feeling, to feel real, to feel validated, to feel heard. To be seen, truly seen, all of you. Infertility and miscarriage are consuming, dominating, controlling of all aspects of life. Why am I walking through life trying to hide these huge parts of me?

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My comment back to Alicia's blog post:

Endometriosis Blog: Infertility & Miscarriage --- "Letter To A Friend"

Friday, September 12, 2008

Alicia,

You are just so amazing. You are inspiring, brave, refreshingly honest, open, strong, kind, and insightful. When I read posts like this, I get very emotional. You are good at putting tears in my eyes. I mean that in the best possible way.

As you know, I have talked with many women from the local support group about both infertility and miscarriage. Unfortunately, endometriosis causes both of these to be more common.

What's amazing about you is that you are able to face things head on in a way many others can't or fear to. What's amazing about you is that you say what other people may just think in their heads. What's amazing about you is that you recognize the taboos in our society that are just plain wrong and you bring those subjects out into the open. I try to do the same thing with endometriosis.

I try to make people comfortable talking about it, hearing about it, understanding what it is and how it affects women and their familes (and their employers... and their extended families… and society)...

I try my best to speak out about things like infertility and miscarriage too... because I have heard SO MANY stories of pain and suffering and because I feel SO badly for couples who face this terribly challenging, emotional roller coaster ride.

Sometimes I myself am “too careful” precisely because I have heard the intense suffering of so many people.

As you know, I tried not to talk about my daughter to you (or have you hear her in the background on phone calls with you) back when you had just miscarried because I didn't want to be insensitive and remind you of all of the hurt and pain associated with your miscarriage by talking about my healthy daughter.

I now know from talking with you and seeing you return to work as a nanny that you are at peace with it. THAT IS WONDERFUL!

I wish that all couples who have been through miscarriage or infertility could be so at peace with it as you are. Don't get me wrong! By "at peace with it" I don't mean to imply that I am underestimating your very strong desire for a child!! I am NOT doing that!

What I mean is that you have a really extraordinarily healthy attitude about everything that is, frankly, sometimes astounding to me.

I have spoken with many women (and couples) who have been through these painful experiences. I must say that not all of them are anywhere near as open about it as you. Many are not. While the people at the infertility support group meeting you mentioned were "on the same page" with you, I know there are other infertile couples dealing with the pain quietly at home. The people who attend such meetings tend to be the ones who are open in a similar manner to you about these topics.

A friend of mine who has had 2 miscarriages and has battled infertility since then recently talked with me about the idea of attending an infertility support group. While she was open to it, her husband was not. She would have definitely gone if he was open to it but wasn't really comfortable going to a meeting without him.

Everyone is different. I ABSOLUTELY agree with you that our society is wrong about making people feel stigmatized about the topics of miscarriage and infertility!!! I agree with you that it's terribly unfortunate and such stigma DOES HAPPEN.

I know of women who attend our local endometriosis support group and/or who attend the local infertility support group (with or without their partners present) and they have found HUGE relief and support from talking with others. I wish that such groups could help everyone who experiences such a crushing loss... but I am not them and they are not me. Everyone is different. Everyone has their own coping style. Each person has her/her own way of grieving. There is no right or wrong way of doing that.

You know me. I believe that being open, attending support groups, talking about these issues is healthy and prevents “stuffing” emotions and potentially causing psychological self-harm.

HOWEVER, for some people who go through this... support groups and blogging are not the right answer. For some people these issues are intensely private and they have a right to be private about it if that's how they feel.

The trick for people who have not experienced infertility or who have not experienced miscarriage is being able to distinguish between people like you who are very open and want to talk about it and those who fall into the more "private-coping" category!

It is very hard sometimes to know which camp someone falls into. (Other times it’s pretty obvious). Until you said certain things to me (after your miscarriage) that I perceived as "a green light" to talk about children, babies, and my own daughter... I was careful when talking with you! I now know that probably wasn't necessary. (Well, maybe in the beginning after you first had a miscarriage even you might not have appreciated being inundated with baby/child talk, right??)

Other local support group members who have or have had infertility and/or miscarriage have held up very clear "red flags" that have made me careful about what I do or don't say in their presence... or even if I'll take a call from a local support group member who I know is infertile when my daughter is near the phone and easily audible through the phone!

I don't think it's black and white. I think for some people it's black & white in the sense that they are open ("green light") or “not open”/private about it ("red light"). Others seem to float back and forth. Some days their mood and circumstances allow them to feel more open. Others times (such as immediately following some sort of loss), they may feel more inclined to be private.

I ABSOLUTELY agree with you that as a society we should NOT make couples going through these situations feel uncomfortable talking about it! That isolation and/or stigma compounds the grief and loss!

At the same time, I'm not sure that your coping skills would work for every woman who has had a miscarriage. Am I making sense? I ABSOLUTELY hear what you're saying on this amazing and thought-provoking post. I just don't know if everyone has the same coping skills that you do --- to be able to be so open.

At the risk of sounding judgmental (not my intent!), some people who aren't “open” could probably benefit from being more open --- BUT some people really and truly need to deal with their losses privately because that's their style, personality, or way of coping.

So, I AGREE that our society needs to be educated about these issues, needs to be more open, and needs to embrace couples going through this. I also believe that couples going through this need to give clear signals to others as to which camp they are in (red light vs. green light).

If healthy, supportive communication about these topics is to happen, everyone needs to be on the same page about who wants to be open and talk vs. who wants to be private and not talk with just “anyone” about it publicly. It's very tricky.

Some people don't talk publicly about it but DO seek counseling from trained professionals who can provide support and coping skills. Some couples are like you… very open. Some are into support group meetings. Others aren't.

I AGREE with you 100% that we as a society need to provide that support, respect and listening ear for those couples who **DO** want to talk about it. I'm just not sure all couples going through it do, though.

Part of why some don't, I think, is precisely because of our society's warped way of not dealing well with these issues. Our society has become very preoccupied with pregnancy and babies. Think of the countdowns to when Tom Cruise and Katie Holmes’s baby would be born or when Jennifer Lopez would give birth. Our society puts such emphasis on Angelina Jolie and Brad Pitt's family planning or "baby bumps" on celebrities and I think that kind of thing just makes infertile couples or those that have gone through a miscarriage feel even worse! Our society has a strange way of framing parenting, childbirth, infertility, and miscarriage.

Other countries do handle it differently. Western society is behind on this… in my opinion.

I remember when my friend miscarried when she and I were in our 20s… and I mentioned getting a card for her. My mother said, "Oh, Jeanne… that wouldn't be appropriate"... and I thought, "why not?!" If I miscarried, I would perceive a card from a friend as a sign of support and kindness. My mother, on the other hand, thought it would be upsetting to her or "breaking etiquette rules" and that a card would only be appropriate for “other types of death”.

The way I see it death is death. If a woman/couple is excited and happy and thrilled about a pregnancy and then a miscarriage occurs, that is a huge loss! A death has occurred. I'm not talking about the whole controversy over when conception begins or any of that stuff. (I wouldn’t touch that topic on this blog with a 10 foot pole)!

I'm talking right now about the death of the dream that the couple had. There is profound sadness and grief... probably even more so than the grief one would have for someone who had lived a good, long life!

So I think it's a confusing issue for many. I think our society has much room for improvement on these issues. I know when you had a miscarriage that I struggled to give you the best support I knew how.

Part of why I tried so hard to support you is because it's the right thing to do and I believe that all in our society should provide the best comfort they can to couples who go through this. Part of my empathy was because I've heard SO MANY stories of grief and loss from support group members and from my friends/family members. Part of that was I knew how crushing a blow it was to you after years of infertility and I desperately wanted to do ANYTHING I could to help you, support you, assist you in finding helpful resources for coping, etc. I'm honestly not sure most people in society are equipped to provide that kind of support. If it weren't for my being an endometriosis support group leader for 7 years now, I would not have been able to help you in the manner that I did after your miscarriage.

Our society needs to be educated. Wonderful posts like yours go a long way towards that. I am so proud of you!

You are so strong, so compassionate, and just so downright amazing that you do bring tears to my eyes. Keep talking, keep blogging, keep being open, and keep giving clear signals of how your friends and family can best support you and Josh. You are a role model for so many women with your graceful, insightful, open-minded way of handling such adversity.

To miscarry after 5 years of infertility when you have an illness that makes you feel like your clock is ticking louder than most (endometriosis) and be able to be as strong as you are is really remarkable! I have seen many women go through these things but few have coped as well as you have. You have to realize that different people have different levels of coping skills and support. You have many, many friends and that must be very helpful to you. Honestly, not everyone has such a strong network of support as you do.

If you haven't had a chance to check out the widget for the "wear to make aware: infertility's common thread" campaign, see the sidebar of my blog to check it out.

Your positive attitude and strength will continue to carry you through --- just as they have so far... no matter what is in your future. You are one of the strongest people I've ever met! My thoughts and prayers are with you and keep doing what you're doing!!

Jeanne

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

Endometriosis Blog: National Invisible Chronic Illness Awareness Week - "Medications, Illness, Fertility and the Desire for Motherhood"

As mentioned in previous posts, this week's events for National Invisible Chronic Illness Awareness Week include online seminars. Callers can dial in and talk about various chronic illness-related topics.

Yesterday there was a seminar on "Medications, Illness, Fertility and the Desire for Motherhood" with Jenni Saake. (I was unavailable to participate at the time of Jenni's seminar but thankfully all of this week's seminars are available in the blogtalkradio archives)!!!

I had posted a general comment on the II forum yesterday (II is commonly used this week as an abbreviation for "Invisible Illness").

Then, last night, Jenni posted a comment on this blog (see Jenni Saake's comment in the comments section of Tuesday, September 9, 2008 Endometriosis Blog: National Invisible Chronic Illness Awareness Week - Shameless Plugs For Their Merchandise). She had seen my comment and had tracked down this blog since the "endometriosis" topic got her attention.

I have since listened to Jenni Saake's seminar and I'm sure many of our readers will find it helpful!!! If you are interested in listening to it, you'll simply need to register for a blogtalkradio login (a quick process)... and then login to blogtalkradio when you're ready to listen to archived seminars like this one.


The name of Jenni Saake's seminar is: "Medications, Illness, Fertility and the Desire for Motherhood".

Here's a description of the show (as listed on blogtalkradio):

Wondering if you should consider parenthood with your illness? Concerned about your fertility as well as the impact of medications? Jennifer Saake has lived 18 years of illness, with infertility for 10 of those years. Balancing both conditions includes: medication side effects (illness meds on fertility and fertility meds on illness), questioning sanity of wanting desperately to have children yet fearing how she would care for them when she can hardly care for herself, facing the frustration of attempted adoption when her health makes her less "marketable." She has written a book on infertility and loss and is praying about someday writing a book on living with chronic illness.

I encourage you to check out Jenni Saake's talk on blogtalkradio by logging in as described above. With Jenni Saake's personal experience with endometriosis, fibromyalgia, chronic fatigue syndrome (CFIDS), hormonally-induced panic attacks, infertility issues, investigating adoption, miscarriages, PCO (polycystic ovarian syndrome), surgery, pre-diabetic condition, artificial insemination, etc... I'm sure many readers here will have a great appreciation for Jenni Saake's compelling story!

Jenni's story is engrossing, informative, and very worthwhile listening! Please consider listening to this fantastic program!!

Here are two of her sites that she mentioned during the program:

http://www.hannahshopebook.com/
http://www.harvestinghope.blogspot.com/

This is a wonderful seminar that will appeal to many readers of this blog!!

See related posts regarding National Invisible Chronic Illness Awareness Week:

Sunday, September 7, 2008 Endometriosis Blog: Tomorrow is DAY ONE of National Invisible Chronic Illness Awareness Week 2008!!

Monday, September 8, 2008 Endometriosis Blog: ***TODAY*** Kicks Off National Invisible Chronic Illness Awareness Week 2008!!

Tuesday, September 9, 2008 Endometriosis Blog: National Invisible Chronic Illness Awareness Week - Shameless Plugs For Their Merchandise

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

Endometriosis Blog: NEW YouTube Video Clips! Endometriosis, Chronic Illness And Other Topics Of Interest!!

I just wanted to let readers know that the previous YouTube section of this blog has been deleted. It has been replaced with a new YouTube video clip section.

See the new YouTube video clips in the right sidebar under:

YouTube Video Clips: Endometriosis AND Other Chronic Illnesses

The previous YouTube clips were randomly pulled from YouTube using keywords like "endometriosis", "pelvic pain", and "fibromyalgia". There were also some ads that were interspersed between the clips on the previous YouTube clip section and everything then appeared in a rotating slideshow.

The new YouTube section currently contains video clips that I handpicked. While some ads may get added in later, right now the video clips showing are just ones that I selected.

I should pause at this point to apologize to anyone who had the misfortune of viewing my YouTube video clips last evening. YouTube does have a filter that is supposed to screen out objectionable material. It didn't work last night and I was a bit stunned at a couple of the video clips that were on my screen when I went on my blog last night!

Let's just say that the video clips that appeared last night were randomly selected by YouTube using keywords (not just ones like what I referenced above but also content words from within this blog). So (apparently) since this blog contains gynecological terms... when the filter isn't working (as I discovered last night), some inappropriate clips can appear! I'm sorry if anyone else had the misfortune of logging on last night and seeing them. I immediately deleted that slideshow last night.

Fortunately, I had already been working on putting together the new YouTube section for a few days before that. So I finished and installed the new YouTube section last night. The new YouTube video clips are ones I selected that I thought would be of interest to readers. (Hopefully if ads do get mixed in with the clips later I will be able to find a more effective way of screening out clips that are inappropriate for this blog).

There are 10 clips on the new YouTube area. Topics covered include some that will look familiar and others which are totally new.

One that may look familiar from the old slideshow (that I had found fascinating and didn't want to lose in the new YouTube area) is on a surgical treatment for endometriosis called "autofluorescence diagnosis of endo" or "spectral endoscopy".

In addition, topics covered in the video clips include the following: chronic pain/illness in general, fibromyalgia, chronic fatigue syndrome, the value of support networks/groups, interstitial cystitis, infertility, multiple chemical sensitivity syndrome, and mindfulness meditation with a clip of Dr. Jon Kabat-Zinn. Many of the illnesses I just mentioned are known to many readers of this blog as co-existing illnesses to endometriosis.

Another clip that will look familiar to those of you who saw the previous YouTube slideshow is the outstanding "Wild Horses" video clip about chronic illness and chronic pain. Accompanied by background music by Natasha Bedingfield, this clip is FANTASTIC and sure to be appreciated by anyone who is chronically ill (whether with endometriosis or otherwise). If you missed this clip the first time around, I highly recommend checking it out!

With these new YouTube video clips, you can toggle through to see the ones you want rather than waiting for them to automatically rotate as they did previously. To do so... simply click on the arrow symbol on either side of the video screen (about halfway down the screen). The left arrow will take you to the previous clip and the right arrow will take you forward to the next clip available for viewing.

If I'm not mistaken, you can also expand the size of the video clip by double clicking on the clip you want to see. (I was pretty tired last night when I completed this so maybe I dreamed it! I'm honestly too tired to check now so I'll let you explore the clips on your own). :)

I think these video clips are helpful for a couple of reasons. One is that they give a 'visual' that may be a bit more exciting to look at than than just reading text. Another reason is that they explain things in a way that I probably couldn't do justice to in print. Finally, I know when I'm tired and/or in pain that it's sometimes easier to watch a video clip than to read about the same topic. So the clips may be helpful in that way too!

I'll be anxious to hear your feedback on the new video clips. I hope you like them.

For previous posts on the topic of video clips --- on endometriosis and other chronic illness-related topics --- please see the following posts:

FRIDAY, JUNE 6, 2008 Video Clip: Lack of Endometriosis Surgery Reimbursement in the US (*** Please read the disclaimer at the top of this blog.***)

MONDAY, JUNE 9, 2008 YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...

MONDAY, JULY 14, 2008 Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***

FRIDAY, JULY 18, 2008 Endometriosis & Chronic Illness/Pain: YouTube Video Has Touched Many!!!

Let me know what you think! :)

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