Category — Co-existing Conditions

Given that I have not been feeling well enough to write a new blog post and the fact that I always write a post regarding Mother’s Day, I decided to post something short with a link to something I wrote last May. (I have already noticed many visitors to Mother’s Day posts from years past). With 1 in 8 couples affected by infertility, odds are good that you know someone struggling with infertility (whether you know it or not). Insensitive remarks and judgmental comments often drive those struggling with infertility to keep their struggle private.

This Mother’s Day, please show compassion to the women – and men – around you who are childless (whether they are childless by choice or not). We live in a child-centric society and being childless can feel very isolating. There are all sorts of reasons that people are childless. The last thing childless people need is to be judged by others or condescended to. Sadly, the childless people I have interacted with tend to get heaping doses of both judgment and condescension. Some people’s comments aren’t intended to be malicious but they are hurtful nonetheless.

If you have a friend or loved one who is struggling with infertility and you don’t know what to say/do to be supportive, the best thing you can do is take cues from that person/couple. They may wish to talk about it and they may not. They may be happy to tell you what is helpful and what is not. They may wish not to discuss it at all. Everyone is different and one person’s process for dealing with loss may differ quite a bit from another’s. By asking your friend or loved one how you can help, you show them that you care. Bear in mind that they are most likely inundated with unsolicited advice. This is why taking cues from them is really important.

This is a difficult time of year for anyone who has suffered a loss that results in Mother’s Day bringing up painful memories. This is not limited to those experiencing infertility and/or pregnancy loss.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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The migraine pain (over the past month) has ranged from mild at times to very severe at other times but it has never left completely (except for about three hours one day and for a couple of hours another day when I thought it was leaving but it quickly came back full force – even harder than before).

Sensitivity to light and sound have been severe all month. Sounds I normally wouldn’t be bothered by are very painful to my ears and head. I have had waves of nausea coming and going. Occasionally one eyeball will hurt for about two to three hours before dissipating.

Yesterday was the lowest level of migraine pain I have had since March 31st. I started to think the migraine was finally lifting. When I woke up today, my head was still not normal but I would no longer call what I have today migraine pain. I believe that I am now in the postdrome phase described here. I am hoping that my head will feel 100% normal soon. It has fooled me before but I think it’s really lifting this time. Time will tell.

Unfortunately, I don’t have the energy to write in very much detail about what has been happening with my migraines these last few months. In a nutshell, though, I was having some reduction in the number and frequency of migraines (after starting both physical therapy for cervicogenic triggers for migraines and acupuncture to treat migraines). I was still getting migraines but they weren’t as bad once I had started the cervicogenic migraine physical therapy and acupuncture focused on them. I was grateful to have some improvement. I knew there was no quick fix and that any improvement was worth appreciation.

Prior to starting physical therapy and acupuncture for migraines, I had noticed patterns in the timing of my migraines that suggested hormonal fluctuation is one of the major migraine triggers for me. The wonderful physical therapist who has been working on treating the migraines triggered by cervicogenic issues thinks I need to talk to my doctor about the hormonal situation. I plan to do so in my next appointment with my primary care physician (next week).

In the meantime, I saw the neurologist Thursday and it was an enormous waste of time. It was difficult for me to drive to/from that appointment. (If I don’t feel like it’s safe for me to drive, I don’t… no matter what I have scheduled. It’s not worth risking an accident). For nearly three weeks, I didn’t even feel it was safe to drive around town – much less to an appointment an hour away. Thursday was only the second time in a month that I had driven for more than five minutes. The amount of time, money and energy that were utterly wasted on that appointment totally frustrated me. That tale is far too exhausting for me to relive at the moment but the good news is that the brain MRI (looking for multiple sclerosis) yielded normal results. Maybe someday I’ll have the energy to get into more detail regarding why I believe the neurologist appointment Thursday was a waste of time.

I haven’t been online much but on the rare occasions that I have, I’ve gotten great support from other people who experience migraines. Let’s just say that apparently I’m not the only one who has experienced difficulty in finding a good neurologist for treating migraines. Thank you to those of you who have reached out to me regarding your own experiences with and knowledge of migraines. I really appreciate your support.

Now, please bear with me for going on a tangent about sleep apnea treatment… I had previously mentioned in passing the difficulty I have had finding a CPAP headgear to treat my sleep apnea. I got a new CPAP headgear on March 24th. I was very excited that (after years of unsuccessfully trying to find a headgear that my head could physically tolerate – no matter how carefully I screened out ones with materials I have a known allergy or sensitivity to), I had found one my head could physically tolerate (no sores on my head due to a reaction to the material of the headgear)! The fact that I had finally found one (pictured) that I wore night after night with no adverse reaction on my scalp was the good news.

The bad news is that the daytime fatigue and sleepiness I have experienced in about the last month (despite having gotten plenty of sleep at night… more than usual, in fact) has been so severe that I decided about a week ago to try not using the CPAP for awhile to see if the fatigue improves. (I am currently trying to determine whether the new plastic tubing for my CPAP machine might be out-gassing chemicals that are exacerbating my multiple chemical sensitivity, whether the fatigue is migraine-induced, or both). Since stopping CPAP about a week ago, the fatigue has improved a bit. However, the migraine has improved in that time too. So, it remains to be seen what caused the incapacitating fatigue and sleepiness I have been experiencing in the past month. I would very much like to go back to wearing my newest headgear, pictured above, if I can rule out the plastic tubing that attaches to it as causing any of my fatigue and sleepiness problems in the last few weeks. I know the risks of untreated sleep apnea (i.e. that cardiovascular trouble has been found to be up to three times more likely):

Needless to say, I am anxious to resume treatment for the sleep apnea since I don’t wish to increase my odds of having cardiovascular trouble. I’ve tried running the CPAP machine when I’m not wearing it to flush out the plastic tubing but I’m not sure how much good that has done, if the tubing is causing symptoms. I washed the tubing with distilled water, as directed, before using it. Other than allowing it to air out over time, I don’t really know how I can get it to out-gas more quickly.

Hopefully, the fatigue is from the migraines and not the CPAP tubing and I will be able to resume wearing my CPAP headgear soon.

My husband reports my snoring had stopped when I was using CPAP. According to the doctor who ordered the sleep study that diagnosed the sleep apnea, treating that should help the symptoms of all of my illnesses (since it’s not healthy to stop breathing throughout the night). The sleep disorder clinic had told me when I was diagnosed with obstructive sleep apnea that they recorded zero restorative sleep for me. Zero. I hadn’t had dreams in many years because I never reached that stage of sleep. With the CPAP machine, I was having dreams. That tells me I was getting into a deeper level of sleep than I had in years. Yet I was more tired than ever when I woke up each day. So, the trick now is to sort out whether the new plastic tubing is out-gassing chemicals that are causing the fatigue and sleepiness or not. In the meantime, I am seeing how I fare without it. Since the severe fatigue and sleepiness started right about when I started the CPAP and right about when this most recent migraine started, it’s hard to know for sure what’s the cause.

Managing the migraines and sorting out whether the CPAP machine is or isn’t causing the severe fatigue/sleepiness are what I’ve been focusing on lately. Other factors have prevented me from being online very much as well. Thank you for your patience. I am going to try to resume a more typical schedule for blog posts as soon as I am able. Several of you have sent me messages asking how things are going lately. I appreciate you thinking of me and would like to thank you for your support.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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I haven’t written a blog post in a couple of weeks because I have had a migraine for 3.5 weeks now and I have been offline the vast majority of the time.

However, I did want to mention that this is National Infertility Awareness Week 2011. Please click the logo below for more information from RESOLVE: The National Infertility Association:

Infertility is a disease that affects 1 in 8 couples of childbearing age. Odds are good that you know people who are struggling with infertility (whether you are aware of it or not).

“Infertility is a disease that results in the abnormal functioning of the male or female reproductive system. Both the American Society for Reproductive Medicine (ASRM), World Health Organization (WHO) and the American College of Obstetricians and Gynecologists (ACOG) recognize infertility as a disease”. [Source: RESOLVE].

Please consider learning more about infertility. It is common for well-meaning people to make hurtful and insensitive remarks to people who are struggling with infertility. (Hopefully increased awareness will make this phenomenon less common).

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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While I had many ideas for additional topics to cover this month, time has flown by and my energy has been limited. I decided to do a recap of the Endometriosis Awareness Month 2011 posts for those who may have missed one or more of them. First we heard from Dr. Diane Neal and Endochick in a guest blog post called:

Then I wrote this post about something I call “yellow-washing”:

Next I wrote this personal post regarding undiagnosed teenagers struggling with what may be endometriosis:

After that, I wrote about the importance of support here:

Following that, I talked about being sidetracked from Endometriosis Awareness Month by migraines:

Then, I wrote about the important topic of suicide prevention:

Finally, Jenn did a guest blog post about how chronic illnesses like endometriosis can affect one financially:

I would like to thank Diane, Endochick, and Jenn for taking the time and energy to write wonderful guest blog posts for Endometriosis Awareness Month. While I hoped to do more this month than I have, I have learned over the years that it isn’t wise to force my body beyond its limits. So, the many days this month when my body essentially told me, “no” when I asked it to do something, I didn’t force it. I listened to it because the consequences of not listening to one’s body can be pretty unpleasant.

I would like to thank everyone who has signed the petition and/or shared the link on social media:

Endometriosis Awareness Month may be drawing to a close but we collect signatures on that petition year-round. So, please continue to share that link on Facebook and Twitter. Just this month the petition gained 56 signatures. That’s not bad! Many who signed elected to use the optional field for comments. Reading through those comments, one cannot help but be moved and inspired to action. There is so much work to be done! Let’s keep getting the word out to people. Here is that link for the petition once again:

Thank you very much to everyone who has worked so hard and so passionately to spread the word about endometriosis, to foster awareness about it, and to take a close look at endometriosis organizations to ascertain whether they are advocating for patients as they claim. Taking the time to research organizations before supporting them (financially or otherwise) is worth the time and effort. Sadly there are organizations that purport to advocate for endometriosis patients but upon a bit of investigation, it becomes apparent that looks can be deceiving.

Thank you to everyone who is working to spread the facts about endometriosis and working to counter endometriosis misinformation.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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In the past, I have written many posts about the topic of suicide and about the frequency with which people search phrases like “endometriosis and suicide” before landing on my blog.

Endochick recently wrote this post: Why we need awareness #3.

While the three hour sampling of searches mentioned in that post did not include any about the topic of suicide, I know from talking with Endochick that her blog gets daily traffic on the topic, as does mine.

Since it is Endometriosis Awareness Month and multiple blogs get daily traffic on “endometriosis and suicide”, I decided that an important part of blogging for Endometriosis Awareness Month is to cover this topic.

There is more information about suicide HERE, HERE, and HERE.

Finally, I wrote about suicide prevention in general HERE after taking an informative class on suicide alertness.

If you are having thoughts of suicide, I urge you to contact one of the hotlines listed above. Please click the graphic above that pertains to your geographical area.

For more information on creating endometriosis awareness, please click below. Awareness is vital and help is available for those having thoughts of suicide. Please help us spread awareness about this serious illness.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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If you guessed number 3, you win the prize. Unfortunately, I have no prizes to give out. So, hopefully you will be satisfied to have as your prize the knowledge that you guessed right. Did the blog post title give it away?

Hopefully tomorrow’s acupuncture session will expedite getting this migraine to pass so that I can get back to working on Endometriosis Awareness Month. In the meantime, please sign and share the endometriosis awareness petition (see right sidebar for link).

P.S. For those wondering, my youthful skin took a hike awhile back and I don’t wear makeup. So, that leaves number 3 by process of elimination. While I cannot prove the woman pictured has a migraine, answer 3 is most logical due to process of elimination. Yes, I have insomnia that is making me punchy now. Thus the silly post.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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For 29 years, I have lived with endometriosis. Nineteen years ago this month, I was diagnosed with endometriosis via an outpatient surgery called laparoscopy. (By the way, this type of outpatient surgery is the definitive method for diagnosing endometriosis).

In the first ten years that I lived with endometriosis, I knew something must be wrong but I didn’t have a name for it. It wasn’t until March 1992, at the age of 23, that I was properly diagnosed with endometriosis.

Looking back, I am truly amazed at what I experienced in those first 10 years. That picture of the woman on the floor above triggered memories for me of how much time I spent lying on the floor in years past. Lying on the floor of the bathroom was a common thing for me because nausea and vomiting were a major problem for me in the early years.

I have written about endometriosis in regard to teenagers HERE and HERE. As you can see from the outpouring of comments on these posts, women who have lived through teen years with endometriosis symptoms are passionate about supporting girls who are currently going through similar experiences. They are eager to help these girls because they remember all too well what it felt like to live with endometriosis as a preteen or as a teenager.

I’ve also written previously about some of my own personal (least favorite) memories of being a teenager living with endometriosis.

Also, I was interviewed during Endometriosis Awareness Month in 2009 by Amy Jussel of Shaping Youth for the purpose of helping preteens/teens and their parents know what to look for, when to suspect endometriosis, and what to do about it:

I am passionate about the topic of endometriosis awareness. I am particularly interested in the well-being of preteens and teenagers who are living with undiagnosed endometriosis because I remember what it felt like as if it were yesterday.

Blacking out from the pain caused by endometriosis, vomiting with periods, excruciating abdominal pain that affected my quality of life in profound ways, severe hemorrhaging, frightening blood clots, intestinal pain, bladder pain, and so much more were my “normal” for many years.

When I was in high school, there were many times that I forced myself to go to school but was then physically unable to make it through the day. I was a straight A student and I WANTED to be in class. Nevertheless, any time I would reluctantly drag myself to the nurse’s office because my body refused to cooperate with my strong desire to be in class, the nurse always treated me as if I were some slacker who simply wanted an excuse to skip class. Nothing could have been further from the truth.

Once the nurse gave up on me being able to go back to class and she let me call for a ride, I would wait out by the front door of my high school. There were two stairways… one on either side of the short hallway that led out to the front vestibule area. There was a heater vent there. My high school didn’t look as dingy as that picture above. However, that heater vent reminded me of how I would sit on the floor, curled up and bent over in front of the vent as I waited for my ride.

It seems like the worst of these times in high school happened during senior year because many of the times I waited for a ride, my friend Nancy was there, by my side… keeping me company, cheering me up, and waiting for our ride. (There was some sort of rule senior year that you could schedule your study hall for last period and be able to leave before regular dismissal time. Somehow we managed to leave early without getting in trouble thanks to that awesome rule). I honestly don’t know what I would have done in my teenage years without Nancy’s support. She was always there for me and I will be eternally grateful for her support during one of the most challenging times in my life.

Eleven years after we graduated from high school, it was Nancy who stood by me as my maid of honor.

In any event, I really don’t want to get too dark and dreary talking about how difficult is was to be a teenager living with undiagnosed endometriosis. Quite the contrary. I decided to write this post in the hope that, like the other posts I have written about teens living with suspected endometriosis, teens and/or their parents who are searching the Internet for information might find this post and hear this message:

Without providing an elaborate list of the many steps I have taken between my teens years and now to cope with endometriosis and manage my symptoms, I’ll just say (in a short, simplified list) that after having multiple surgeries; trying various medications; investigating alternative medicine; finding that certain things (i.e. acupuncture!!!) have helped me greatly; and finding doctors who are knowledgeable, highly skilled, trustworthy, compassionate, and ethical… my endometriosis is much better-controlled now than it was years ago.

There is no cure for endometriosis. However, there is hope. There are a great number of treatment options (some of which are generally not mentioned by Traditional Western medical doctors) available. It takes time and persistence to learn about everything that is available (and there is a minefield I will generically label “scammers” to watch out for) but it IS possible to get pain relief or reduction and more.

One caution: To elaborate on what I mentioned above, there are many scammers who prey on endometriosis patients. There are doctors who call themselves “endometriosis specialists” but who I would not want treating me! It is absolutely imperative to find the doctor who is right for you. This process can be challenging and confusing. Just bear in mind that some doctors are very hyped up as being “experts” but that doesn’t necessarily mean anything. There are doctors who are great at self-promotion but that doesn’t necessarily mean that they can deliver on their promises.

Living with endometriosis is challenging. Getting diagnosed in the first place is typically challenging too. When you’re dealing with an illness where 10 years from onset of symptoms to diagnosis is the average, there is obviously much room for improvement in getting people diagnosed earlier.

No matter how challenging endometriosis can be (to get diagnosed in the first place or to live with it once diagnosed), things can get better. There are options available for managing symptoms. They may be difficult to find. What works for one patient may not work for another. Researching and making sure that options are safe and effective (as opposed to marketing scams and such) is very important. Mutual support between fellow patients is crucial and incredibly helpful.

My point is not to have a fairy tale ending here. There is no cure for endometriosis. In that sense, there is no fairy tale ending. However, things can get better. It is important to have hope. I am 42 years old. I have lived with endometriosis since I was 13 years old. That’s a large proportion of my life! I remember what it felt like (in my teens and most of my 20s) to lose hope, to be very scared, to be afraid I would never get pain relief, etc. I don’t feel that way anymore.

I have a sense of peace now that I didn’t have in my younger years.

Are things always peaceful? No way! Just ask any of my friends or loved ones. I can vent with the best of them. However, when I compare my outlook now with where I was at in my teens and 20s, it’s like night and day.

Despite the fact that I have been diagnosed with a large number of chronic conditions since my endometriosis was diagnosed in 1992 (many of which are co-existing conditions to endometriosis), I don’t feel the sense of desperation and hopelessness that I used to feel. Years of mutual support, support groups, meeting people online who “get it”, learning from other patients about things I never would have learned about from my doctors, doing my own research/reading, advocating for myself, and working with other patients to try to increase awareness of this serious illness have left me feeling empowered.

Please sign the endometriosis awareness petition. The comments left on it in the optional comment field by some of the signers bring me to tears. The more people work together, the better off endometriosis patients will be. By the way, thank you to everyone who has been sharing the petition link on Facebook and Twitter and those who have Facebook ‘liked’ the petition page. The number of people signing the petition has really picked up recently. Let’s keep it up!

An estimated 89 MILLION women & girls worldwide (conservative estimate) have endometriosis!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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Yesterday, I posted the following Facebook status. I didn’t take posting it lightly. After all, I am well aware that some of my own Facebook friends might not understand what my point is or agree with my perspective. Nevertheless, I decided it was a topic well worth discussion. So, I posted this comment yesterday afternoon:

CAUTION: Beware of yellow-washing. (Think pinkwashing only with yellow in its place).

Yesterday, as the first day of Endometriosis Awareness Month drew to a close… I found myself seeing an analogy between the pinkwashing phenomenon seen with breast cancer awareness and what struck me as a similar phenomenon involving the color yellow and endometriosis.

First, for those who are unfamiliar with the concept of pinkwashing… here is a definition of the term pinkwasher, courtesy of Think Before You Pink:

Pinkwasher: (pink’-wah-sher) noun. A company that purports to care about breast cancer by promoting a pink ribboned product, but manufactures products that are linked to the disease.

So, one may ask, what does all of this have to do with endometriosis? Well, I have certainly seen companies claiming to help the endometriosis cause that have pushed or do push products linked to (possibly causing?!) infertility, reproductive problems, endocrine disruption, etc. This is nothing new. Does this get me really fired up? You bet.

I noticed online yesterday that site after site and organization after organization (festooned in yellow ribbons or selling paraphernalia that purports to “increase endometriosis awareness”) were, in some cases, making money off of enthusiastic patients who are, understandably, aching for increased awareness. (I saw sites raking in big donations and I saw sites pushing “endometriosis awareness” merchandise. I also saw what smacks of data mining on Facebook. How better to market “endometriosis awareness” wares than to create pages that attract patients? But I digress). There wasn’t an overt exchange of funds in all cases. However, the parallels I noticed yesterday between pinkwashing and, for lack of a better term, “yellow-washing” were, to me, undeniable.

I wish to be very, very clear that my intent is not to upset any endometriosis patients or dampen their enthusiasm at wearing yellow shirts and/or ribbons. It wasn’t very long ago that I was fairly decked out in yellow myself (or another color for another awareness month for another of my chronic illnesses). The thing is that over the course of time (nearly three decades of living with chronic illness), I have come to view things differently.

As I witness the effects of pinkwashing and I see what looks like the advent of yellow-washing unfurling for endometriosis, I can’t help but wonder whether the sea of yellow I encountered yesterday (in the course of just one day working online) – some of which was linked to sites that DO receive money – is helping the endometriosis cause or not? Again, I do not wish to upset any fellow patients who are excited and enthusiastic about “getting out the yellow” for Endometriosis Awareness Month. I just can’t help but question whether yellow-washing will be to endometriosis what pinkwashing is to breast cancer.

Will yellow-washing follow in the footsteps of pinkwashing? Are there more effective and/or less harmful ways of promoting endometriosis awareness besides assisting yellow-washing to grow into a pinkwashing mimic?

A friend of mine tells me that her husband, whose mother died of breast cancer, is totally frustrated with the pinkwashing phenomenon.

Dr. Diane Neal, who you may have met in yesterday’s post, has written research papers on endometriosis.

Starting this fall, she will teach health information science.

She wonders “if such merchandising might be funneling much-needed research money away from worthy projects”?

Speaking for myself, I would like to see the cause (or more likely causes) of endometriosis pinpointed so that research can be focused on how to prevent it (if that’s possible), reduce the chances of potential environmental factors from making matters worse (i.e. exposure to endocrine disruptors), and find ways for the average diagnosis of endometriosis not to take 10 years.

Preventing or minimizing endometriosis may not be the massive money-maker that treating (please don’t get me started on the endometriosis treatment options currently available) or trying to “cure” endometriosis after-the-fact.

I have lived with endometriosis for 29 years now. It pains me (no pun intended) to see how little has been accomplished in the last few decades. It disturbs me to witness women going through the same “rat’s maze” in 2011 that I did starting in the 1980s and 1990s. It really troubles me to see endometriosis patients turned into cash cows (something I have written about before: Endometriosis Patients Viewed As Cash Cows?).

I think pinkwashing may well be a harbinger. Personally, I don’t care to have yellow-washing join the ranks of pinkwashing (and greenwashing, for that matter).

For more about pinkwashing, breast cancer, and organizations that seek information on how to PREVENT illness (trigger alert for my infertile friends on some of the links below), see these articles and websites:

New York Times: Think About Pink

New site: Breast Cancer Action

Environmental Working Group

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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As we kick off Endometriosis Awareness Month, two of my friends who have endometriosis have graciously agreed to write about their experiences here. I would like to thank them for speaking out about it. When we unite our voices together, they are stronger.

Dr. Diane Neal, is chronically healing from multiple illnesses including Stage IV endometriosis, polycystic ovarian syndrome (PCOS), hypothyroidism and lipo-lymphedema. She has never been pregnant. Her inability to conceive naturally was confirmed when she was forced to have both fallopian tubes removed due to endometriosis-related complications. A professor, she loves both research and teaching.

I’ve been ill with Stage IV endometriosis since age 12, but I wasn’t diagnosed until age 21 (that’s typical; the average time for receiving a diagnosis of endometriosis is 10 years from the onset of symptoms.) Ever since I was very sick every month starting with my very first period, I had a sense that I would never get pregnant. Maybe that is why I claimed for years that I didn’t want children; I’m not sure. My intuition was confirmed in 2008, when I had an emergency surgery to remove a very large ovarian cyst filled with endometriosis (this is called an endometrioma). During the surgery, the surgeon found that ovarian cysts had destroyed my Fallopian tubes. She had to remove one at the time of the surgery because it was so badly damaged, which was traumatic because I didn’t know there was a chance of that happening, and I learned about it – from my mother, not my doctor – after the surgery. My other Fallopian tube was cut apart a few months later, because the surgeon couldn’t access it for removal due to extensive endometriosis-related adhesions. With no functioning Fallopian tubes, a woman has no chance of getting pregnant, because the sperm can’t get to the egg.

I have multiple university degrees, a successful career that I love, a wonderful husband, a cuddly Chihuahua, and amazing friends and family. For those reasons and more, I can’t say I feel like my life is worthless in the slightest. However, as I enter my late 30s, I frequently wonder whether the experience of raising children is a not-to-be-missed life experience. Soon, my husband and I need to decide whether we want to attempt in vitro fertilization (IVF), consider adoption, or remain childless. IVF has unpleasant attendant side effects, and there is no guarantee it will work. As an adoptee myself, I believe that adoption can be wonderful. At the same time, adopted children are not replacements for biological children, and the bureaucratic process of adoption is daunting. (Honestly, how many natural parents have to be subjected to a “home study?”) The third option, remaining childless forever, sounds so permanent. (I’m an only child, so who would get the family photographs?) There is a difference between remaining childless and being childfree by choice.

At times, I fight feeling jealous of people who have natural children, especially those who have them effortlessly. We all know those people: “We got pregnant the first month we tried!” When I hear people complain about their kids inconveniencing them, I truly wonder if they know how blessed they are to have those problems. When I see photo after photo of my friends’ kids on Facebook, I wonder if my friends have heard of endometriosis or any other diseases that can cause infertility… or did they have similar problems, and beat the odds?

As I’ve learned, endometriosis won’t kill you, but it can cause indescribable physical pain, create powerful feelings of grief and loss, and alter the course of your life in unexplainably profound ways.

Endochick is a chronically healing endometriosis patient who also has diabetes insipidus, migraines, Sheehan’s syndrome, and dysautonomia. She is currently a graduate student. Her decision to pursue a Master’s Degree in Patient Safety was heavily influenced by her own firsthand experience as a patient. She is passionate about endometriosis awareness.

September 2006, the day my life changed.

There had been years of pain, years of massive monthly bleeds, years of self-medicating with Extra Strength Midol and Tylenol with Codeine. Years that blurred into a cohesive unit of agony and uncertainty. Years filled with “you’ll never have children” turning into “this pregnancy will be difficult” and then “this pregnancy could kill you”.

These were the wonder years. From the age of 14 to 26, I wondered. Was this normal? I would see my friends brush off the mention of their monthly “visitor”. “Visitor,” I wondered. “Mine doesn’t ‘visit,’ mine charges in, gun fire lighting the night sky, and seizes my life.” Mine was a third world dictator, and there was no United Nations to turn to, no respite for aching body.

At 18, endometriosis was “suspected”. Get married now, the doctors suggested. Whatever you do, one told me, have a child NOW. Two doctors refused to “confirm” my condition with a laparoscopy. Hormone treatments failed. I gained massive amounts of weight, suffered headaches, nausea, rashes, anxiety, and even panic attacks. Years passed and still doctors denied surgery to “confirm”.

It was not until I was 26 that I found a doctor to confirm I had endometriosis. It was stage IV. Adhesions covered everything – my ovaries, my tubes, my uterus, the cul de sac and even the intestines.

That year I began to blog. I was alone. No one around me could say those comforting words, “I know how you feel.” No one.

Isolation brought me to blogging about endometriosis. Through the blogging, I found solidarity. Women just like me commenting and e-mailing, “I thought I was alone”.

March 2011 – the journey has not always been smooth, but now I know I do not walk the road alone.

89 million women in the world with endometriosis. 89 million women who may feel lost and alone, but who are not.

We are truly stronger together.

Editor’s Note:

Despite what Endochick’s doctors implied, pregnancy is not a cure for endometriosis. (There is no cure for endometriosis).

A surgical procedure called laparoscopy is considered the definitive method for diagnosing endometriosis.

If you haven’t already, please sign the petition below. If you are a blogger and wish to display this petition link on your blog, please leave a blog comment to let me know and I will get the code to you so that you can display it. Facebook users can ‘like’ the petition (on the petition screen). Also, there is an optional comment field for each person signing the endometriosis awareness petition.

Interested in sharing the link for the petition on Facebook and/or Twitter? Here is a shortened link that can be posted:

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

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This post will be short and sweet. I just wanted to make note that Endometriosis Awareness Month is coming up in March.

If you haven’t done so already, please take a look at the Create Endometriosis Awareness & Understanding petition. You do NOT need to be an endometriosis patient to sign this petition. Anyone interested in supporting endometriosis awareness is encouraged to sign it.

There is an optional comment field for those who sign. If you take a look through some of the previous signatures, you’ll see that many endometriosis patients have shared this link with their loved ones.

Feel free to post the petition link on Facebook and Twitter. There is also an option on the petition to ‘like’ it on Facebook. Just click below to sign:

Interested in posting the petition badge included in this post (above) on your blog to help spread the word? Just leave a comment on this post and I’ll send you the code to display it on your blog. (The signature count updates itself automatically when people sign).

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support!

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).