Endometriosis Guest Blogger: One Brave Woman's Struggle Coping With Endometriosis... Melissa Ralston's Letter Of Intent To Do Battle! (UPDATED)

Please meet today's endometriosis Guest Blogger...

Melissa Ralston!

Melissa Ralston is a registered social worker with a degree in social work, psychology and several counselling certificates; a mom; and a fellow endo survivor of 18 years. She has led a Yahoo Support Group called "Goddesses of Endometriosis" for the past 7 years, providing emotional support and educational services on the topic of endo and available treatments.

Melissa started her endo symptoms when she was 12 years old, however despite persistent complaints to her doctor, was not treated adequately for this disease. Melissa did not receive a diagnosis of endo until her left kidney went into failure due to strangulation caused by the endo growths, and had to have surgery to remove the growth. Following the diagnosis, and while she was experiencing early miscarriage after miscarriage, Melissa had seen no less than 7 specialists, who offered no effective treatments other than "having a baby if she were married, but since she wasn't, a hysterectomy could be done". After a failed round of Danazol, followed by more birth control pills which never helped, Melissa found an endometriosis specialist on her own. Melissa was lucky enough to conceive and carry to term, and received her second lap within 3 months of her son's birth, during which she also received a diagnosis of stage 1A endometrial cancer. Melissa has survived the devastating effects of losing a job based upon her health status, having her relationships destroyed, as well as putting up with severe reactions to many of the medications that she has been on for treatment.

Aside from endo and cancer, Melissa lives with fibromyalgia, rheumatoid arthritis, inflammatory bowel disease, migraines, and asthma, many of which co-exist in many ladies living with endo.

EDITOR'S NOTE:

I have had the privilege and honor of getting to know Melissa over the past few months through extensive communications via email and Facebook. Like so many endometriosis patients, she has been through great adversity. Melissa has shown great leadership and has supported the endo cause a great deal. Her sense of humor and positive attitude often leave me chuckling. Her emotional journey is compelling. Even more compelling is her positive outlook and hopeful attitude that endo cannot and will not defeat her or take away her hope. Melissa inspires other chronically ill patients!

Melissa's online support has helped a great number of endometriosis patients.

Here is Melissa's letter to her endometriosis!

Dear Endo Cells,

This is your official notice that I have had it up to HERE with you. For far too long you have been causing me nothing but pain; physically, socially, and emotionally. Luckily you haven’t caused me financial ruin as I do have top of the line pharmaceutical coverage, although you have made it difficult for me to work at times. I am here to say that I am no longer going to let you get away with the path of destruction you have left in your wake.

From the time I was just a “baby” of 12 years, I have felt your unwavering disruption to all that is joyous in life. You destroyed my blood counts through the intense, prolonged bleeding “cycles”. The birth control pills that were prescribed to “regulate you” seemed to have no effect on you whatsoever. Week after week I would find myself at the ER, to the point where I believe I had frequent flier miles, if not at the very least having my file labelled as a drug seeker. However, even the best pain drugs out there that they would prescribe would still leave me in pain. At one point, you were still causing me pain despite taking Percocet every 4 hours, long-acting morphine every 12 hours and Demerol every 6 hours for the “breakthrough pain”. Is there even such a thing as “breakthrough” when the pain doesn’t go away to begin with?

I’ve done multiple pharmaceutical treatments to get rid of you. You tricked the birth control pills, every brand that I’ve tried that is, still continuing to cause me pain and heavy bleeding.

You didn’t like the injection of Depo-Provera, so much so that you decided to cause me to have convulsions, mood swings, severe depression, heavier than even heavy blood loss leading towards blood transfusions, all of which ended with me having my first of several "D&Cs", all in the name of trying to get rid of you. I did two rounds of Danazol, which helped to slow you down a bit, but in the end it appears to have led to the onset of fibromyalgia. Who knows maybe I was also destined to have fibromyalgia appear at some point in the future. I have tried the NuvaRing, which only lasted a few hours before you rejected that treatment completely. At least it was a quick decision. I had a Mirena inserted, you still decided to bleed every day for 6 months and then decided to have regular cycles anyway. I added the Arimidex and Micronor to the mix, you still decided to be hormonal pain in the butt by not responding to three medications all used at the same time. Because of these treatments, my risk of cancer has been raised, especially since I already do battle against endometrial cancer. You have also decided that you hated my left kidney and killed it by cutting off the blood supply. Thanks again. At least when you attacked my kidney you made the doctors sit up and listen and I finally had a name to call you other than hell.

[Editor's Note: Here is some information regarding how endometriosis can affect the kidneys in some patients]... See NDT: Nephrology Dialysis Transplantation.

You have devastated my dreams of a large family, leaving me with only the hope of the possibility, however slim, of having one more child. You have found me pregnant quite a few times, but with the exception of my beautiful Jacob, you have taken those away from me. It’s a pain that I will never get over, however it is easier to get through over time.

You have caused me great emotional pain. When you are a young teen, you want to fit in more than ever with your peers. However when you have to take days off school at a time, every month, this doesn’t bode well for friendships. You want to be able to go hang out with your friends, but when you’re exhausted and in pain, the only place you end up going is bed. You have seen many boyfriends come and go, unable to withstand the fear of someone they love never getting better, or the burden that our caregivers go through. You have met with several doctors, prior to finding the great knight who is determined to slay you. These doctors all suggested pregnancy, but with you endo, pregnancy appears to not want to stick with my body. Many times I’ve been tempted to have a hysterectomy just to cut you out of my life, however I know now that it’s not likely to help me out oh so much considering you’ve attacked my bowels and bladder. I’ve had you cut out of my bowel, but you make a sneaky return. I’ve had you cut out of my bladder, but the real issue might be your counter-part, interstitial cystitis. I used to have more bad days than good, and that made me one very sad lady.

I’ve taken the few gifts that you’ve given me; experience, knowledge and a driven desire to kick your butt and used it to help others. For the past 7 years I have run a support group for women with endo called Goddesses Of Endometriosis. Close to 1000 members and still growing, I have been able to use your negativity towards doing good, helping others to battle this disease at where they are at on their journey. You have allowed me to meet, educate and receive wonderful thank you notes from women all over the world. For this I am grateful, as helping others helps me at least feel like I’m contributing something towards getting rid of your existence. The website is: Goddesses Of Endometriosis.

I am now embarking on my next journey with you, trying to conceive another child with my partner. Leaving the medications behind has reminded me of just how much I dislike you. But I am determined to continue on with my life, with or without you. I am not going to let you destroy my dreams of one day completing my Masters and going into private therapy practice. I am not going to let you destroy my desire to have a happy family life. You may still make your annoying self known to me, but the only way you might limit me is physically. I am not your emotional and social hostage.

Sincerely,
Melissa Ralston
Leader of Goddesses Of Endometriosis (Yahoo Support Group)
Site for this group: Goddesses Of Endometriosis

EDITOR'S NOTE:

I thought Melissa's story of courage and hope would be the perfect way to round out the year.

Happy New Year!

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UPDATE:

Melissa started a new endo blog tonight and I just had to update this post to reflect it!

Endometriosis: Facing the Battle Head-On


See my blog roll entry titled:

A New Blog -- "Endometriosis: Facing the Battle Head-On"... {{{{{ NEW BLOG AS OF 12/31/2008!! }}}}}

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

Endometriosis Blog: Obituary Of An Endometriosis Support Group Or Beginning Of A Better System?

Fasten your seatbelts! This will be a long post because it's about a topic very near and dear to my heart. So please bear with me!! When I get emotional, I get even wordier than usual (hard to imagine, I know)! :)

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If you're having trouble slogging through this whole post, please consider checking out the 5 related links near the end of this post. I believe many readers can relate to them!
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Before I begin with a bunch of questions (questions I'll pose below) or proceed to write my local endo support group's "obituary", I want to begin by focusing on the positive!!!

I AM VERY THANKFUL AND GRATEFUL FOR HAVING HAD THE OPPORTUNITY IN THE LAST 7 YEARS TO MEET AND GET TO KNOW SOME OF THE MOST FANTASTIC WOMEN I HAVE HAD THE PLEASURE OF MEETING ANYWHERE, AT ANY TIME, IN MY LIFE! I HAVE FOUND NUMEROUS ROLE MODELS WITHIN MY LOCAL ENDO GROUP: ROLE MODELS FOR COMPASSION, "GIVING BACK", SHARING THEIR PERSONAL STORIES FOR THE BENEFIT OF OTHERS, ETC. I AM SO HONORED TO HAVE MET SO MANY OUTSTANDING WOMEN WHO ARE COURAGEOUS, STRONG, THOUGHTFUL, AND WHO PERSEVERE THROUGHOUT OFTEN DAUNTING SITUATIONS AND DEBILITATING SYMPTOMS. THESE WOMEN ARE INSPIRATIONAL AND HAVE ENRICHED MY LIFE AND THE LIVES OF OTHERS IN SO MANY WAYS!!!

Is online support the "wave of the future" (as some have suggested to me in recent weeks)? Can online support replace in-person support? Does it have to be either/or???

Or is a *combination* of online support and in-person support the optimal situation??? (My personal opinion on that last question is that a combination IS best when at all possible... but I'll get into more details below. In-person support is REALLY powerful. Having experienced both, I see the value of each).

Are in-person support groups phasing out in general? Or does it depend on factors like geographical area, the condition/illness requiring support, the nature/severity of the illness/condition/situation for which the support provided by a group, gas prices to get to meetings, people's work schedules, people feeling too overwhelmed or exhausted to add one more thing to the schedule(!), or a combination of these and other factors?

First let me share some fond memories. Our group has helped many women find ---

+ EACH OTHER!!! I have met some of the most wonderful, caring, supportive, well-informed, strong, compassionate women in our support group that I have ever met anywhere in my 39 years. I will always treasure the special moments of shared support, compassion, information-sharing, and grace that I have witnessed in the past 7 years. Our support group has helped many women in meetings, between meetings, in person, by phone, and via email. The last phase of this in-person support seems to have led me here. While I didn't know it at the time that I started this blog in June, it may well provide online support to those who cannot attend in-person meetings regularly (for a variety of reason which I'll talk about separately).

+ comfort, support, healing

+ the ability to find high quality doctors in our area

+ validation/understanding/decreased isolation or loneliness

+ links to other support groups relevant to their condition (i.e. fibromyalgia, interstitial cystitis, and infertility support groups)

+ articles about endometriosis and related conditions, relevant news stories/research

+ links to other helpful resources relevant to our group members (i.e. support for group members who have gone through breast cancer... which endo patients are at increased risk for)

+ opportunities to connect with other women who share much in common with them (pain symptoms, marital strain, infertility, micarriages, etc)

+ a venue for learning about alternative treatment options that might not have been discovered otherwise

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Obstacles for in-person support...

Here are the most common reasons endometriosis patients have outlined for me as reasons its difficult to attend support group meetings:

(1.a.) TIME. Time is so precious nowadays for everyone. It's extremely difficult for endo patients to simply add one more thing to their schedule.

(1.b.) I am listing "TOO SICK TO ATTEND" as tied for first place because it is just as common a reason for women not being able to attend meetings!

(2) Women who are feeling better and would like to stay on the mailing list but do not attend meetings regularly because they don't need the support currently. This is understandable! (Who wants to drag herself to a meeting when she's feeling better when she could be at home spending that time with her family, curled up her in PJs reading, watching TV, etc.)

(3) Patients whose needs have essentially been met and are doing pretty much OK but wish to remain on the mailing list to "stay in the loop"... and just in case they should need support/info down the line.

(4) Women who had quite a drive to meetings and either have issues with drowsy driving associated with medications, have trouble with gas prices making the drive prohibitive, etc.

(5) Patients who have been fortunate enough to conceive sometimes have difficulty obtaining childcare so that they can attend the meetings.

Within the group of women who find time their biggest challenge for attending in-person meetings... there are many subcategories. Women have work scheduling conflicts, women have other commitments on the same date, women need that time during the meetings to recover from working all day and adding a meeting after a full work day is totally beyond their capabilities or just plain impractical, etc...

This leads into category (1 b). Many women are simply TOO SICK to make it to in-person meetings. This has been the most heartbreaking part of the last 7 years for me. The very women who express the GREATEST need for support and who are VERY interested in attending meetings often are simply to sick to attend. Over the last 7 years, I have tried to be as available as possible as possible to group members between meetings because I knew that some patients simply can't make some or even any meetings due to the very illness for which they desperately want/need support.

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As far as the questions I posed at the start of this post, I can't answer all of these questions. What I can do here is simply share the story of one local endometriosis support group. Much of our local support group's story has been covered in previous related blog posts. I'll list these at the end of this article and I strongly encourage readers to check them out! There is a great deal of information in them that I believe readers may find interesting and/or helpful regardless of whether they have ever or will ever participate in "in-person" support groups!

There's a great deal to cover here with the group having provided support to local endometriosis patients for 7 years. If I cover it all in this post (especially when I detailed it previously anyway in other posts) this post will become WAY too long. So I'll skip the details for now and refer readers to those posts for more information about the wonderful things our group members DID accomplish while we still had regular monthly meetings.

While I will miss having monthly meetings and the enormous opportunity they provided to help others and to learn a great deal from fellow endometriosis patients, I realize that sometimes "good things must come to an end". While I accept the fact that we will no longer have monthly meetings at the location & time we've met for 7 years... I have faith that we have a core of very interested support group members who will find more creative and flexible ways to have some in-person support... just not necessarily as often or in as structured a fashion.

I am at total peace with the changes in how we'll proceed from here and (despite my gloomy post title!) that this change is for the best and I'm actually feeling relief that I no longer have to struggle to try to "hold the group together" in its previous form. Group members know where to find me and now have some additional contact info to communicate with other fellow group members who have shared their contact info. I have done everything humanly possible to keep the group afloat in "traditional form"... especially since the endo groups on either side of me closed within the last few years and our group has been the only remaining endo support group in our part of the state.

I just keep telling myself that a former endo support group leader who sent me a compassionate, thoughtful email about the potential "closing" of the local group had a good point... that online support (blogs like this, messages boards, websites for organizations who deal with endo support, research, information, etc.) may truly be the "wave of the future".

My personal belief is that some occasional in-person support is a fantastic addition to the great online support available in so many formats! I have felt the positive energy in the room when the group members present have "aha" light bulb moments (as Oprah would call it) or when group members realize, "oh, she 'gets it'... " --- or "these people really 'get' what I'm talking about"!

I keep local group members' contact information 100% confidential and always have. With the traditional group format unraveling, I have been asking interested group members for permission to share their contact info with the group. In this way, the remaining "core" of interested group members can remain in contact with each other without me necessarily needing to be the "gatekeeper".

This will assist me in engaging in more self-care/less time trying to "save the group" and will allow for a better sense of "ownership" or belonging for the core members to communicate with each other - and - for all of us to divide the responsibilities of organizing any in-person, informal meetings.

We can meet 1:1 or in small groups at locations, dates, and times of the subgroup's choosing. We can have the meetings really informally at coffee shops... just hang out and chill. Like a "girls night out" where we happen to all have endo and we spend some time talking endo and some time just having fun.

In the last few weeks, it became apparent that our group was potentially heading for "extinction" in its current form and I sounded the "alarm bells" to let the group know where things were potentially headed... at least regarding the format we had become accustomed to.

I went through feelings of sadness and loss. I know there is a need for a group like this because I got 2 calls last week from new members. Calls don't always translate to meeting attendees, though.

At the same time our current meeting schedule is just impractical (on many levels) and it's not fair to the wonderful library that has provided free meeting space for 7 years to call and cancel as many meetings as I have in the last year when the library is turning others away from using the room.

However, in addition to feeling sadness and concern that women who haven't already found our group may have a much lower chance of finding us now, I have received some unbelievably supportive and heartwarming emails and calls from local group members. This has lessened the blow of the group "dying" (at least "dying" from its current form of monthly meetings). With all of the great suggestions and supportive/helpful comments I have received in the last few weeks, I know that existing support group members who care to stay in touch will and that those whose needs have been met or who don't find attending in-person meetings practical for whatever reason WILL still get the support they need within our community.

The saddest part for me is not knowing how to reach out to those who hadn't yet found us. For example, women who have not yet been diagnosed and who will look for an endo support group in the future in this area won't be likely to find us. This was hit home recently when the local city newspaper printed its quarterly "health section" newspaper pullout that features support groups like ours (for free) to inform the community.

As I touched on earlier, I got calls 2 days in a row from potential new group members recently and had to explain that I wasn't sure if our next meeting was going to happen or not. (I had called an "emergency meeting" to discuss our group's future. It was to be held tomorrow night. I have cancelled it). While a couple of group members had replied "maybe" to the meeting invitation RSVP, a handful had said no, none had said yes, and the vast majority hadn't responded at all.

I just knew it was time to discontinue our monthly meetings. This doesn't mean we can't "morph" into another format. I am hopeful that the small but determined core of local support group members who have contacted me will find creative ways of staying connected.

I have received some VERY thoughtful, considerate, compassionate emails and calls from local support group members who wish to continue to stay connected with other endo patients in the area, who reassured me that they have found the group very helpful, who made suggestions such as virtual meetings or meeting at a coffee shop on a quarterly basis, who like staying in the loop with the emails I send, etc.

We may not meet every month in the future and we may not meet in the same location as before. However, based on the feedback I've gotten from our group members I am confident that there is a relatively small but interested core of our local support group members who will stay in touch, continue to network with each other, keep sharing our success stories & our challenges, and continue to belong to a group of women committed to staying connected.

OK. Now I'm going to do the "obituary" of our "traditional in-person monthly support group".

Then, more importantly, I will share hope for the future of continuing in-person support as a supplement to online support and and as adjunct to the information provided by healthcare providers.

We'll quickly cover the past first and then get into the future. I'm determined to focus on hope and positivity once I get through this quick "obituary". I just need the catharsis of getting through the sad part before I can move onto the happy/hopeful part. So bear with me.

On August 8, 2001 our local endometriosis support group held its first meeting. Since then we have helped dozens of endometriosis patients in our community. Like so many support groups around the country, we have had our struggles over the years with low turnout but have managed to stay active with monthly meetings for 7 years.

While many women expressed great interest in our group, our monthly meetings got smaller over the years. The number of group members on our mailing list went up and down over the years (people moving away, new members finding our group, women deciding they no longer needed support, women returning to group meetings when their symptoms flared or they needed to make decisions such as whether to have surgery) but our mailing list averaged about 40 women in the last few years. (We started out with about 20 women on the mailing list back in 2001). That's not bad for a city the size of the area this group has served.

I believe this may well be the death of a traditional support group and the beginning of a new era of support... My hopes for the future of our support group restructuring into something more workable for its members are strong.

I mentioned above that I would be sharing HOPE for the future of continuing in-person support as a supplement to online support and and as adjunct to the information provided by healthcare providers.

My personal belief is that the majority of Traditional Western Medicine healthcare providers are not GENERALLY inclined to provide much, if any, information regarding alternative medicine options. One of the biggest benefits of our group for members was access to high quality info on alternative treatment options. Group members learned about acupuncture, physical therapy for pelvic pain, Chi Nei Tsang, nutritional changes that might be helpful, homeopathy, aromatherapy, info on environmental impacts on endo patients and their fertility, the benefits of massage therapy, and many other modalities that their healthcare providers might or might not have made them aware of. I believe alternative medicine was one of the most interesting topics discussed in our meetings. I certainly got great feedback from members who tried new treatments and got great results.

Please see the article below. It contained FIVE related articles to this one.

Friday, August 8, 2008 Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

The 4 links within the article listed above are:

Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient

Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!

I have been a member of a "traditional/in-person" endo support group (here or in other cities where I lived previously) since 1992, when I was first diagnosed. I will miss the monthly meetings but I look forward to staying in touch with the numerous amazing women I've met through the group. These are women I almost certainly wouldn't have met any other way. Many are lifelong friends now!!! While I will miss the structure of monthly meetings, I have every confidence that many of our current group members WILL stay connected and continue to give one another high-level, compassionate, meaningful support.

So with this "endometriosis support group obituary", I'm sad but I'm also very hopeful. This is a bittersweet time. No matter how frequently, or infrequently, I have contact with members of my wonderful local group... I know we've helped many people. In addition, I know this blog will continue to help people online. Not only does this give support to women without them having to leave their homes but it reaches a worldwide audience and has already given me an awesome opportunity to connect with awesome readers of this blog and fellow bloggers (chronically ill or otherwise)! I am very grateful on so many levels.

I encourage readers to comment on this post! Maybe your local support group is struggling and you are looking for ideas. Maybe you have used online support only and have never tried in-person support or it's not available in your area. Maybe you have used in-person support in the past but haven't used it recently. Maybe your local group (like so very many endo groups) closed due to low attendance. I'd love to hear your feedback!!

In a funny way, I'm actually looking forward to this new chapter. I truly believe this is what's meant to be at this time and I'm embracing the opportunities it provides. I have taken some time to accept it and make peace with it and I really do see it as an opportunity rather than a "death" of our group... in spite of my post title. That title was a reflection of the sadness factor but I'm honestly looking forward to what good can come out of this transition for our local group. Who knows where this could lead? Maybe having a more flexible time/date/location based on who wants to attend a particular meeting will increase participation? You never know!

THANK YOU to my local support group members for being so thoughtful, informative, strong, and supportive. You all have a special place in my heart!!!! :)

I have loved the opportunity to meet so many incredible women through this group!!!

Nothing will ever take away the amazing, close friendships I have made with other endo patients right here in my community. Their kindness and selflessness are unmatched and I am so very grateful!!

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"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has".
-- Margaret Mead
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Our group has improved the lives of many women and their loved ones! We should look at the positive things we've accomplished AND look ahead to the additional positive things we'll accomplish in the future!!

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: Quote of the Day

Quote of the day... The importance of communicating and discussing our challenges (and triumphs!) with others is crucially important. Please see the quote below. It sums up the importance of keeping lines of communication open:

"However much we are affected by the things of the world,
however deeply they may stir and stimulate us,
they become human for us only when we can discuss them with our fellows...
We humanize what is going on in the world and in ourselves only by speaking of it,
and in the course of speaking of it we learn to be human."
- Hanna Arendt in "Confiding"

This quote was provided by:
Ed Madara ed@selfhelpgroups.org
Director 973-989-1122 x15
N.J. & American Self-Help Group Clearinghouses
www.selfhelpgroups.org

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

Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!

We’ll call post this “Part Two”:

I will pick up where I left off with the TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient “cliffhanger” post.

Here is where I left off:

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

If you have not yet read the August 5th post, you may want to read in reverse chronological posting order so that things are in context!

So once I had found the contact information for The Endometriosis Association in the Barnes & Noble bookstore, I went home and called them immediately. At that time, there was a phone number specifically for people who were new to The Endometriosis Association that took messages for call back. (I believe that there is just the main number for The Endometriosis Association now)…

The Endometriosis Association can be reached at:
Phone:(414) 355-2200
Website: http://www.endometriosisassn.org/

I PERSONALLY HAVE FOUND A WOMAN NAMED SHELLEY HOUCHIN TO BE EXTRAORDINARILY HELPFUL AND SUPPORTIVE! SHE IS THE SUPPORT PROGRAM COORDINATOR AT THE ENDOMETRIOSIS ASSOCIATION HEADQUARTERS. I WOULD HIGHLY RECOMMEND CONTACTING SHELLEY IF YOU HAVE ANY QUESTIONS ABOUT ENDOMETRIOSIS SUPPORT GROUPS OR THE ENDOMETRIOSIS ASSOCIATION IN GENERAL. THIS WOMAN IS VERY PASSIONATE ABOUT HELPING ENDOMETRIOSIS PATIENTS AND IS A FANTASTIC RESOURCE! SO IF YOU CALL OR EMAIL THE ENDOMETRIOSIS ASSOCIATION, JUST ASK FOR SHELLEY HOUCHIN AND SHE WILL BE VERY HELPFUL!!!

Anyway, someone called me back shortly after I left my message in 1992. The woman was very helpful! Since this conversation took place back in 1992, I don’t remember the exact details but I know she was very nice. I do know that I ended up joining The Endometriosis Association as a member. My membership meant that I began to receive The Endometriosis Association’s newsletter.

The newsletters were the first time I heard stories from women like me who were also endometriosis patients! There were letters that endometriosis patients had written to The Endometriosis Association published in the newsletters and the stories sounded like I could have written them!!

Around this time, I became aware of a book which was published in 1987 called Overcoming Endometriosis by Mary Lou Ballweg. (Overcoming Endometriosis was followed by The Endometriosis Sourcebook by Mary Lou Ballweg and The Endometriosis Association in 1995 and Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and The Endometriosis Association in 2003).

Overcoming Endometriosis, which I read in 1992, helped me to realize that there were many fellow endometriosis patients in the world. Between the newsletters and the book, I was starting to feel less alone.

Somewhere along the line it came to my attention that there was an Endometriosis Association support group right in my city. I had never been to a support group before and didn’t know what to expect! I was quite nervous about calling the Group Co-Leader but I was very ill from endometriosis and so I got past my nerves and placed the call.

I sure am glad I made that phone call!!! The Group Co-Leader was very warm and welcoming. She told me about the support group: where & when meetings were held, some idea of what meetings were like, some of her own personal experience as an endometriosis patient, etc.

IT WAS SUCH A GREAT PHONE CALL! I KNEW THAT I HAD TO GO AND CHECK THE SUPPORT GROUP OUT!

At the time I was a shy, quiet 23 year old with zero knowledge of support groups... back in 1992. The idea of going to a meeting where I would talk with people I didn’t know about my endometriosis made me apprehensive. However, the phone call from the welcoming Group Co-Leader helped a great deal! Also, I was too sick NOT to try a meeting! What did I have to lose? I knew I might very well have a great deal to gain! If the other support group members were even half as nice as the woman I had spoken with on the phone, I’d be foolish not to go!

So the next meeting night arrived. I went to the meeting by myself. This particular support group used a conference room in a hospital for their monthly meetings. Still a bit nervous, I had no doubt that I was doing what I needed to do in order to find the support I so desperately needed!! I walked into a small room with about 3 women sitting at a table. It was still a few minutes before the meeting was scheduled to begin. I believe one more woman arrived after me and then we started the support group meeting.

What a breath of fresh air!!! To sit in a room of women who all automatically “got it”, who all had some idea of what I was experiencing, and some of whom shared many symptoms with me... it was so exciting! I learned a great deal in just that first meeting. This particular group had each woman take turns (only if they chose to speak) talking about any endometriosis-related topic she wanted.

The women typically began by introducing themselves, when it was their turn to speak, for the benefit of new meeting attendees like me. Some told their “endo stories”… brief summaries of their endometriosis journeys to that point. Some talked of having trouble deciding whether to have another laparoscopic surgery or not. Some talked about prescription treatments they were on or had tried in the past. Others talked about alternative medicine (a term that was new to me at the time). It was made clear that I could just listen if I wanted to and that I didn’t have to talk.

By the time it was my turn, I was ready to talk!! I was still shy and quiet but hearing the other endometriosis patients’ stories helped me to relax and open up. I explained how I found the group, that I had talked to the Group Co-Leader prior to the meeting, and that I was very much in need of support! I explained that I had been recently diagnosed with endometriosis and was just beginning to learn about it!

The welcoming response I got from my fellow endometriosis patients was touching and comforting! I felt like I really “belonged” there and this was only my first meeting!! I was very glad I “took a chance” and “dragged myself” to that first support group meeting.

From that point on, I went to every monthly meeting I possibly could! In fact, I scheduled around the meetings as best I could. I was working many hours at the time and it wasn’t always easy to fit the meetings into my schedule. I did my best, though.

I MADE TIME FOR THE SUPPORT GROUP MEETINGS!!!

The support group taught me so much and so quickly! It was a whole new world! I didn’t feel like it was “me against the world” anymore! I finally knew the name of my illness, I was learning more about it rapidly, I got tips on finding a better doctor than the one I had at the time (which was sorely needed!), etc. I was very pleased with the amount of information and support I received at these meetings.

Most months we had 2-6 women in attendance. That was plenty! In fact, we had to keep our turns brief enough to allow each person the opportunity to talk. The meetings were 2 hours long and we often occupied the room right until it was time for us to vacate it!

Now I will fast forward a few years. I accepted a job in a new city. While the city was fairly large, I didn’t know if there would be support group available there. I was pleased to discover that there was. Unfortunately, I didn’t make many of the meetings in that city because I was working a very unbalanced schedule of 80+ hours a week (on average). I did make a couple of meetings in that city, though.

Two years later, I returned to my hometown and resumed the meetings at the location I had originally attended. The group was as warm and welcoming as ever! My work hours were cut way back and I began attending almost-monthly again.

Now I will fast forward another 3 years. I got married & moved again to a third place. This time it was not a city. The rural area where I had moved to did not have an endometriosis support group very close to where I lived. There was a support group in the nearest city AND the one I had just left. The driving distance was a bit much for me to attend either one very regularly.

I did not even know about the endometriosis support group in the nearest city to where I had moved; I found out about it later on when I had decided to form a group closer to where I lived!

So, in the course of starting up my own group... I became aware that there was an endometriosis support group in the city closest to my new home (slightly closer than the group I had just left). I spoke to that Group Leader and I contacted The Endometriosis Association’s headquarters for information on how many women lived near my rural area and whether or not it made sense to form another support group. They sent me data on members in my area and women who had contacted EA for information. Many were "on my side of town", as it turned out.

To make a long story short, I decided after speaking to the Group Leaders from the two nearest cities that it would be worth forming a new (additional) group. The Group Leader from my “new city” was very helpful!!! She gave me lots of tips for how to start a new group! She recommended an EXCELLENT class given by the local Mental Health Association called “Facilitating Self-Help Groups”.

Please see my previous posts:

Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

So I attended the class, talked with the Group Leaders from the endometriosis support groups on either side of me, and formed a new group.

This Friday will mark my support group’s SEVENTH anniversary! Unfortunately, the other two support groups no longer meet. Like so many groups around the country, these groups decided to discontinue their meetings.

For awhile, we had all three groups active and running. It was great because I had 2 experienced Group Leaders to bounce things off of and they bounced their ideas off of me too.

The group in my “new city” closed first. I was sad to see it close. The very experienced Group Leader had stepped down to take a job out of the area. I asked one of my most enthusiastic support group members if she’d consider stepping in so that we could keep both groups active. This would give women in the area two locations to choose from. We ran in tandem for a little while but her group closed and I absorbed any interested members from her group into mine.

Awhile later, the group from my “old city” closed down as well. This was very sad for me because that group meant so much to me! There were still members in it from when I joined in 1992! Unfortunately, the remaining group members weren’t attending often enough & regularly enough for the group to stay active.

This left me with the only active group in an area covering two moderate sized cities and their surrounding areas. I was more determined than ever to attract new members and keep my group from closing down as the other two had.

I am still in touch with the former support Group-Leaders from both cities!

It has been a couple of years since then. Our smallest meetings consist of two people. Our biggest meeting ever had 15.

EVERY SINGLE MEETING IS WORTHWHILE, REGARDLESS OF HOW MANY WOMEN ATTEND!

I had a couple of “no show" meetings about two years ago. That was when I implemented a new policy that if I didn’t get at least ONE person to RSVP that she was definitely planning to attend, I would simply cancel the meeting. I learned that sitting in an empty room waiting to see if anyone will show up is no fun. I haven’t had a “no show” meeting since!! Either we get 2-5 women (at an average meeting,including me) or I cancel 24 hours in advance with the building/meeting room where we meet. Problem solved!

I encourage you to read the related posts I mentioned above. Who knows?? Someone reading this may get inspired to find a local endometriosis support group, attend meetings, OR start a group if there isn’t one that is nearby!!

I have also created a poll regarding self-help groups and support groups! Please see it in the right sidebar of this blog and exercise your right to vote for the option that applies to you!!

I hope that SOMETHING in this post, in the other two recent posts about self-help groups/support groups/volunteering, and/or in the “PART ONE” post to this one: TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient will be helpful to ENDOMETRIOSIS PATIENTS AND OTHER CHRONICALLY ILL PATIENTS IN NEED OF SUPPORT!!!

You may have an appropriate support group in your backyard and not even know it!!!

I will close this post with a quote that was recently brought to my attention. I believe it’s perfect for this post:

“One of the most important capabilities of community self-help groups is that ordinary people can develop such groups in their local communities when none exist, and subsequently their group usually serves as an extraordinary resource to many in that area for several years. I still find it amazing that to start a group, a person doesn't need a grant, an agency, or even an office - just the inspiration and a few other people who share their experience and hope. What significantly helps in providing such inspiration is a person's knowledge of an existing national organization or a model group, which can provide them with basic information so they don't have to ‘re-invent the wheel.’ "

This quote is attributed to E. Madara, "Mutual Aid Self-Help Group Developments” Community Psychologist, 39 (3), Fall, 2006, p. 21.

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

Endometriosis Blog: Results Of YOUR FEEDBACK On Endo Blog TOPIC CHOICES POLL!

You may or may not have noticed the poll that has been in the right sidebar for awhile now entitled: "What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer)."

Well, obviously some of you have seen it because you took the opportunity to cast your votes! Thank you to those who did vote! The more feedback I get from endo blog readers, the better I can tailor the blog to meet your needs.

HERE ARE THE RESULTS OF THE POLL ---

"What Endometriosis (Or Related) Topics Interest You Most? (You May Check More Than One Answer).":

Chronic Pain and/or Illness:
41%

Infertility and/or Miscarriage:
16%

Co-Existing Illnesses/Conditions (i.e. fibromyalgia, interstitial cystitis, irritable bowel syndrome...):
50%

Endo's Impact on Relationships:
25%

Stress and/or Anxiety:
25%

How Support Groups/Networking with Fellow Patients Can Help:
16%

Integrative/Alternative/Complementary Medicine:
33%

All of the Above:
33%

Other:
0%

While this poll is obviously not a scientific one, I think the high percentage of readers interested in Integrative/Alternative/Complementary Medicine is significant!

So, I will continue to focus in this area especially in the future. I've also made note of the interest in the other topics mentioned in the poll!

There are many things I take into consideration when deciding what to post here on the endo blog...

For example, I pay close attention to which posts get the most feedback with posted comments. I will also take into account the results of this poll. Also, I review statistics on which parts of the blog get the most clicks. The traffic monitors sometimes give me clues on how to proceed as well. All of these bits and pieces of feedback really help me to customize the blog to meet your needs!!

I really want to emphasize that your feedback on polls like this truly helps me decide what to write in the future.

So will your posted comments on this blog!!!!!

Some days I may just post what I'm in the mood to post but I always try to keep in mind what information has been meaningful to me AND to my local endometriosis support group members. This really helps me to figure out which topics may also be of interest to you!!

While feedback on posts I've already made IS VERY HELPFUL, it doesn't tell me what I may be MISSING or SPENDING TOO LITTLE TIME ON. I'm afraid I don't read minds. :) :)

Soooooo, if there is an endometriosis-related topic you'd like to focus more attention on, please let me know. Perhaps there is something we've touched on that you'd like to discuss in more depth. Maybe there is an endometriosis-related topic that you would like to suggest that we haven't talked about? The more feedback I get from blog readers the better!

I am looking forward to continuing to receive more feedback like your comments and poll results in the future. It really WILL help to shape the direction of this blog if I know what your needs are and how this blog can best serve them.

We have already spent a good deal of time discussing the "Co-Existing Illnesses/Conditions (i.e. fibromyalgia, interstitial cystitis, irritable bowel syndrome...)" category on this blog.

I DEFINITELY plan to continue to focus quite a bit on these topics as they scored highest from the readers who took the poll on what topics are most interesting or informative.

So please keep that feedback coming! It really helps guide me as I'm deciding what topics to include and how much time to devote to each.

By the way, now that the results of the poll are posted here I plan to remove it from the sidebar shortly and replace it with something fresh.

Thank you! :)

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

Endometriosis Blog Announcement: New Feature On This Blog --- Infertility/Pregnancy Loss News Source Available In Right Sidebar!

I am pleased to announce a new feature available on this blog! This feature will serve as a means of connecting you with a superb blog (including a blogroll within) that you may find extremely helpful.

Many women with endometriosis are affected by infertility and miscarriages. I came across the outstanding resource I'm getting to in a moment on Pamela Jeanne's infertility blog:

http://www.coming2terms.com/

I thought this feature would be a fantastic addition to this blog --- that serves so many women experiencing infertility. (Several of my local endometriosis support group members have had at least one miscarriage as well).

If you are interested in accessing this new feature: "Lost and Found: News Source for the Infertility/Pregnancy Loss Blogosphere", simply scroll down the right sidebar of this blog until you reach the gray (vertical and rectangular) "Lost & Found" logo.

Once you see the gray "Lost & Found" logo, just CLICK ON THE LOGO ITSELF to get to a WONDERFUL blogroll of sites on these same topics and more! When the site it then connects you to appears on your screen it will say, Lost and Found and Connections Abound. "In the end the love you take is equal to the love you make".

This blog (Lost and Found and Connections Abound) may well be the most comprehensive source of blogs on --- infertility; miscarriage; adoption; "family building when single"; "gay and lesbian"; general helpful sites and support;"in the news", "IUI and IVF"; "Living Child-free After Infertility or Loss"; Pamela Jeanne's awesome blog http://www.coming2terms.com/ (which has been listed in my favorites for some time now); etc. and more! It's the most complete list of info that I have EVER SEEN on these topics. It's really astounding!

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

Inspirational Endometriosis Blog I Found Today!!!

Wow!

I found an amazing (!!) endo blog today!

It's SO outstanding that it inspired me to post about it here AND include it in my list of favorite sites (just see the very bottom of my blog's homepage to view my favorites).

Her site is full of amazing content, includes humor, is emotional/honest, and is just a wonderful blog I feel compelled to share:

http://i-am-not-endo.blogspot.com/

Please check it out! I'm sure you'll enjoy it as much as I do. It's really special!

Have a fantastic day!!!

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

ENDO SURVIVOR! Our Very First Guest Blogger With A Message Of Hope and Determination - Elaine's "Endo Story"!!!

Editor's Note: Elaine refers several times in her article to BCPs. This is short for the birth control pills that she took to treat her endometriosis. As always, PLEASE refer to the disclaimer at the top of this endo blog's homepage. This blog does NOT dispense medical advice. This is one woman's story of her endo journey. Elaine is a former (volunteer) endometriosis support group leader.

Today's First Ever "Jeanne's Endo Blog" Guest Blogger is Elaine:

"Endo Story": I Am An Endo Survivor by Elaine

I am writing this to those at various stages of diagnosis and/or treatment of endometriosis, not because I have any answers, but because my story shows that there is sometimes a rainbow following the rain.

I am an endo survivor.

I am 46-years-old as I write this. I am told by my gynecologist that I am officially in peri-menopause. My understanding is that this is the stage women practice to go through “real” menopause. After the suffering I have been through I am ready to embrace menopause with open arms.

Every 25 – 30 days, I begin to watch for my period. I have the same feelings as every “normal” woman out there doing the same, or at least I think I do. Finally do, as the case may be, as this wasn’t always the way it was. My anticipation of my period wasn’t always just dreading the inconvenience, the occasional cramps, and the tiredness that I get now. Also, unlike a woman who might take these feelings for granted, I rejoice now that I am able to feel “normal” dread and the not the previous dread that I used to feel.

I was late bloomer. I didn’t start getting my period until I was fourteen-years-old. I remember wishing it would start, feeling left out of conversations with peers who knew the experience first hand. Whoever said “be careful what you wish for” knew the truth. My first period came with cramps. By my third period, I had diarrhea, nausea, cramps, mood swings, and a heavy flow. Did I mention cramps? Later, I would add bloating; lower back aches, vomiting, and breast tenderness.

Unlike many women with endometriosis who have a hard time being diagnosed, I did not. I was self diagnosed immediately. I had text book symptoms and a sister who paved the way. My mom suggested a visit to the same MD that performed my sister’s laparoscopy, but as a young teen, I was terrified of the pelvic exam. I was also determined to avoid a two-day hospital stay and surgery! I preferred to suffer. Besides there were some months that weren’t actually that bad.

Once when I was in High School, I fainted during an attack of cramps. The nurse told me I had to see an MD or I wouldn’t be allowed back on her couch in following months. I stayed home from then on when I knew that cramps were going to interfere with learning.

When I entered college and got my first job, missing days became more of a challenge.

I saw the doctor who treated my sister. A diagnosis wasn’t difficult, as I mentioned I had text book symptoms. He prescribed Birth Control Pills (BCPs) and life became tolerable.

Unfortunately, BCP didn’t solve all of my symptoms and the doctor suggested a laparoscopy. The next few years began my doctor hopping years. I changed doctors each time they suggested surgery, which was usually after I got my first prescription for pills and returned due to symptoms. I took anti-nausea medications, and pain killers, and was eventually diagnosed with Irritable Bowel Syndrome (IBS).

I stayed on BCP, avoiding surgery until 1988. I was 27 years old and had suffered through over 150 periods. However, after all my doctor hopping, I chose to put my trust in the wrong doctor. I chose an MD with no training in laser surgery. She had a partner who was suppose to assist, but at the last moment, he left to deliver a baby. I ended up having a diagnostic laparoscopy only that confirmed what the MD had been telling me all along, but I now had a few grainy Polaroid ® photos to prove it.

During my post surgery visit with my MD, I questioned medications popular at that time for treating endo and the connection with suicidal thoughts. My questions appeared to influence her decision not to have me take medication other than to continue with BCP. Basically, I had the surgery for nothing.

Well, I guess two good things came from having the surgery:

One, I joined the Endometriosis Association and that lead to me meeting wonderful people who offered support and advice through a local support group.

And, future MDs that I met didn’t jump in right away wanting me to have surgeries. Although, at least one pressured me to let him do a surgery just to be sure the diagnosis was correct. I only went to him once, but soon after I found an MD willing to change my BCP prescription to help when the symptoms returned, grew worse, and or side effects were bothersome.

I changed BCP over 20 times during the 23 years I was on them. Some I took only 3 months, some I used for years. Some I revisited after being away for a while and found they worked better than before. A wonderful doctor even battled my insurance at one point to get them to pay for a brand that they had moved off the drug formulary to encourage the use of generics.

A woman attending the support group almost had me convinced that I needed to have routine laparoscopies to know what was going on. She supported the concept that the BCP masked symptoms while allowing the endo to continue to grow while I naively went about life. I had so many fears at that time about my future, and many unanswered questions. I worried about scarring from surgery as much as I worried about scarring from the endo growths. I worried about my future. I could only qualify for disability insurance with endometriosis as an exclusion, so I worried about becoming unable to work.

I never did have a second surgery. I began taking Phenobarbital for bowel cramps and IBS.

It was during this time that I discovered that hormones affect bowel cramping. I felt a new understanding of why the pain meds didn’t help my menstrual cramps – they were bowel cramps. It is easy to confuse the two.

Eventually I went off the Phenobarbital with the help of an MD who suggested over the counter GasX to control cramps, limiting fatty foods, and increasing fiber. It was also around this time that I started eating yogurt. These days ads on television tout yogurt with active cultures as a cure for bowel issues, but back then, I made the link when I began feeling better with yogurt.

I also added calcium pills, multivitamins, fish oil, and exercise to my life. I found yoga helped strengthen my back muscles and reduced the lower back pain. Earlier, I had been told by a physical therapist that there was nothing they could do to help the endo induced pain. So I credit the yoga and yogurt for that help.

In 2004, I was advised to stop taking BCP during a time when I was trying to have heart symptoms evaluated. I had planned (with my MDs encouragement) to take BCP right through to menopause.

This new development really caught me off guard. BCP were a necessity in my eyes. I couldn’t go without them.

Well, I now know that I can! I feel normal for the first time in my life. I dread the idea of hot flashes in my future, dry skin, mood changes, etc, but I love the idea that I can join in conversations with peers for the first time in my life and feel “normal”. (Although I may tire of that quickly once I have a hot flash).

I have to admit after so many years on BCP, I had stopped having periods and had gotten used to this. It was kind of tricky to get back into the habit of counting days and planning on a period each month. But, I am pleasantly surprised to find that although I have cramps, they are nothing like what I had before, and that my periods are more regular than before.

I don’t know what truly helped my endo. The 23 years on BCP? Yogurt controlling my IBS symptoms? Exercise (relaxing with yoga)?

I just know that for the first time in my life I feel good.

My wish is for all women with endometriosis to reach this point.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com. The "endo story" above was written in its entirety by Elaine (an endometriosis patient and former endometriosis support group leader).