Helping women with chronic illnesses

Category — Infertility

Father’s Day And Infertility: A Rough Weekend For Many

While I am all too aware that there is nothing anyone can magically do or say to ease the pain infertile couples may experience around holidays such as Father’s Day, the link below may be useful for some:

My thoughts are with those who are headed, in a couple of days, into a potentially difficult and emotionally painful weekend.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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June 13, 2013   2 Comments

Mother’s Day Message

Struggling with infertility and feeling anxiety about Mother’s Day? You are not alone.

You may find this the RESOLVE page (which includes tips on coping with holidays) helpful:

In the past few days, I have noticed some of the posts here on my blog from prior Mother’s Days have been receiving quite a few visitors. I will include a couple of them here for anyone who may find them helpful. It’s important for those struggling with infertility to know they are not alone in their struggle:

If you are struggling with infertility, miscarriage or pregnancy loss please know that however isolated you may feel, you are not alone. There are many others dealing with similar struggles. While this may not be any consolation, some people find it helpful to know that they are not alone.

If you know someone who is struggling with these issues, please be aware that today may be especially challenging. Whether the person/couple you know needs space, a listening ear, or just simply to know that you sincerely care will depend on the person/couple and the situation. What is most helpful to one person will be different for another.

If you have a friend or loved one who is struggling with these issues, please try to be there for them in whatever way you can. If you’re unsure of how to support the person/couple, ask what you can do to be supportive (if anything). If you’re asked to give space (a.k.a. to do nothing right now), do that. If you are asked to support in some other way, please do what you can to do so. Your friend or loved one will likely appreciate your efforts to be compassionate and supportive.

My thoughts go out to everyone who is struggling with this holiday. Please know that there are many people who do care.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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May 12, 2013   No Comments

REALLY?!? Is THIS Truly Your Idea Of Meaningful Endometriosis Research?

For anyone who isn’t familiar with the “REALLY?!?” skits on Saturday Night Live, I’m including a video clip with an example of one here. When I became aware yesterday of a newly published endometriosis study, these type of skits just popped into my head.

For me, sometimes humor is the single best antidote when something really gets under my skin. So, I guess it’s not too surprising that an SNL skit ran through my head while I was reading about the recently published endometriosis study I mentioned earlier. One of the first things I did I after I saw something about the study was email my friend Endochick.

It is a common occurrence for me to run endometriosis-related items by her when I find them upsetting. I find it helpful to see if she shares my perspective when such situations arise. The study came to my attention because I received a Google alert email notification for it. (She and I are each signed up for Google alerts for articles that mention the word “endometriosis”. Subscribing to these alerts is a means of staying in the loop on endometriosis news). In any event, she had seen the recently published endometriosis study before I emailed her. When I shared my “REALLY?!?” reaction to it, she had a very similar reaction.

At this point, I suppose it’s about time for me to share some information about the endometriosis study I found so objectionable (not to mention objectifying!) The study is called (and I swear to you all that I am not making this title up!): Attractiveness of women with rectovaginal endometriosis: a case-control study. That’s right. The word “attractiveness” is literally in the name of the endometriosis study. (Feel free to pause at this juncture to marvel, let your jaw drop, or swear). The preceding link will only get you to the abstract for the study. (Those wishing to read the entire study are required pay $31.50 to access it).

Needless to say, there is absolutely no way I was going to pay $31.50 to read the full article when it was very evident from the title alone that it would really make me angry! If money were no object, I’d still have no desire to financially support such “research” by paying to access the article. As anyone who knows me can probably guess, I still wanted to get my hands on the full study. The title and a peek at the abstract were not enough. I wanted to see the entire article before writing about it here. Reading online summaries of it just isn’t the same as reading the source article. Thankfully, a thoughtful friend of mine had the ability to access it. So, I was able to read the full article about the study (that was inexplicably published in Fertility and Sterility). I won’t attempt to do an in-depth analysis of the study. Instead, I will share (as briefly as possible) my perspective on the value (or complete lack thereof) of a study such as this one. Obviously, I am not able to publish the full study here for legal reasons.

Let’s just say that the full article was every bit as revolting as I had anticipated. While I was preparing to write this post, I came across the following hilarious article about the study: A study rating female attractiveness: the journal Fertility and Sterility publishes misogyny. Let me clarify why it was funny to me. In part, it made me laugh out loud because one of the great many things I ranted about in my email to Endochick was that I found this study to be misogynistic. So, when I happened upon Dr. Jen Gunter’s characterization of the endometriosis study, I found her words humorous and validating as well.

Here are just a few of the things that ran through my mind when I learned of this study regarding the attractiveness of endometriosis patients. Why not study prevention of endometriosis? Why not find the cause(s) of it? Why not study how to improve the treatment options for the millions of women and girls living with endometriosis? Why not study improving fertility in those endometriosis patients struggling with infertility? Heck, why not (gasp) study to find a cure for endometriosis?

To wrap things up here, I’m going to respond to this study (Attractiveness of women with rectovaginal endometriosis: a case-control study) — “REALLY?!?”-style. The study article was 7 pages long. I’ll try to make this as painless as possible.

It’s “REALLY?!?” time…

(1) The doctors who conducted the research for the aforementioned study looked at what age the study participants first had sexual intercourse. (Having read it in context, I can tell you that this was part of their “attractiveness of endometriosis patients” theorizing).

REALLY?!? — Sigh. You think that studying when women first had sexual intercourse is a meaningful use of your time – when you claim to be studying endometriosis? I think not. Please see the paragraph I posted earlier for some ideas of better uses for your endometriosis research time.

(2) The title of the study is: “Attractiveness of women with rectovaginal endometriosis: a case-control study”.

REALLY?!?That is your study’s article title? Wow, you’re not even trying to disguise the fact that the main focus of your “research” was to have yourselves (a handful of doctors) literally “rate” women’s “attractiveness” on a graded scale?! I have a question for you. Have you ever watched that movie about the allegedly shady origins of Facebook? You know… The one where people were rating students on campus based on their physical appearance using the software that was allegedly some sort of prototype for what we now know as Facebook? That’s what this rating of women’s appearance reminds me of. You’re doctors. Don’t you have medical training that equips you to conduct meaningful studies using scientific methods? Have you no shame?

(3) From the study (in the conclusion section): “Women with rectovaginal endometriosis were judged to be more attractive than those in the two control groups. Moreover, they had a leaner silhouette, larger breasts, and an earlier coitarche”.

REALLY?!? — After all of the time and effort you put into this endometriosis research study, this conclusion (and it is word for word from the study, people) is the best that you can produce? The fruits of all your labors on this study are summarized in the two sentences above? REALLY?!? This truly was the focus of your “endometriosis research” study? Nothing about prevention of endometriosis, improving treatment options for patients, finding clues that could lead to a cure for endometriosis? Just a focus on where the endometrial implants were located in the women judged to be “more attractive”, who had larger breasts, who had a leaner silhouette, and when the women from each of the groups first had sexual intercourse?

While I can’t post the entire study, I can post some quotes from it. So here are a few. Brace yourselves. Bear in mind that these are direct quotes from the endometriosis study published in Fertility and Sterility. I include them here because I think they provide some extra insight beyond my “ranting” into the ridiculousness of the use of time and energy by these researchers (for those who haven’t read the full study):

Some endometriosis study quotes that boggle my mind:

“However, in order to limit potential unintentional seductive behaviors that might have swayed the raters’ judgment, information on the specific hypothesis of different degrees of attractiveness in the three study groups was not given in advance of the physical evaluation”.

“This finding could be explained by higher attractiveness and, hence, higher male sexual demand, even in the adolescent phase”.

“As an example, a higher breast-to-underbreast ratio (large breasts) might have been more attractive to male than female raters”.

Endometriosis researchers/doctors can do better than this. They must. Endometriosis research that improves quality of life for patients while searching doggedly for clues as to cause(s) of endometriosis and while diligently searching for a cure absolutely must take precedence over research that instead focuses on the physical appearance and sex lives of patients!! Seriously, I don’t understand how a study like this even gets funded. Let alone published in a major medical journal. In the meantime, millions of women and girls the world over are living with this serious illness. A study such as this not only misses looking at the many crucial topics of interest to anyone serious about researching endometriosis but it takes resources away from looking at what truly needs to be studied.

I can think of many useful topics for endometriosis researchers to investigate. Studies that focus on the physical appearance of endometriosis patients do not make that list. I find it offensive that doctors at a university are conducting such research and I find it even more appalling that a medical journal such as Fertility and Sterility is giving the study legs by publishing it.

At the risk of sounding redundant, I will ask again… Why not study prevention of endometriosis? Why not find the cause(s) of it? Why not study how to improve the treatment options for the millions of women and girls living with endometriosis? Why not study improving fertility in those endometriosis patients struggling with infertility? Heck, why not (gasp) study to find a cure for endometriosis?

The women and girls living with this illness deserve better than this. An endometriosis study where doctors spend time rating physical attractiveness is not my idea of a meaningful use of time or resources. We deserve better than this.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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December 1, 2012   18 Comments

A Holiday Time Re-Post

Originally posted 12/20/2010 with the title:

Family, Facebook, and Frenzy:
A Holiday Infertility Meditation

Today’s guest blogger, Dr. Diane Rasmussen, 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 (one in 2008 and the other in 2009) due to endometriosis-related complications. A professor, she loves both research and teaching.

As Jeanne noted in her wonderful last post, this is a stressful time of year. We’re told (and, for some reason, we believe) that we’re supposed to maintain a big smile full of magical holiday cheer while we host a delicious dinner for friends and family, bake fattening cookies for the office party, buy the perfect gift for the dog groomer, play Santa to our kids…

Wait a second! I can’t do all that! I mean, I don’t have kids!

“Why don’t you have kids?” a woman I had just met asked me recently.

“I can’t have them due to severe endometriosis,” I replied tersely. You’d think I’d be used to this now, I thought to myself. But I never get used to that question. I also never get used to the fact that people with children sometimes assume my schedule is more flexible than theirs, or the fact that people who don’t know the real story probably think my husband of seven years and I are waiting for some inconceivable (pun intended) deadline to start “trying,” or the fact that my friends with children must think I really want to see Junior’s mug-shot-of-the-day every time I log in to Facebook. (Note: if you are my Facebook friend and you do that, I may have hidden your updates some time ago.)

However, those are all mere annoyances. Speaking personally, the time it hurts the worst is when I go to a worship service. All the children are asked to come to the front of the sanctuary to hear a story, and then we have to sing to them as they head to their classes after the story: “Go now in peace/may the spirit of love surround you/everywhere you may go.” But I can never sing: by the time the story is done, I am crying too hard to sing, although I do hope love and peace surround them. It’s not their fault I can’t have a child, after all. That said, their presence makes it difficult for me to attend services, despite the (theoretical) idea that one goes to worship services for spiritual renewal.

Could it get any worse? Cue the holidays. “Christmas is for children,” we’re told. The kids are performing holiday pageants, the toy department at your favourite discount store is overflowing with games and action figures, and your co-workers are all conversing excitedly about the trips they and their kids are taking over the break. Or their kids are coming home from university for a few weeks. Or their kids are bringing the grandkids home. Or whatever.

If you are reading this post seeking answers for how to get through the holidays, I’m not sure I have any concrete advice for you. I struggle with it myself, and I just want December to be over so we can get back to “normal” life. As a childless-by-choice friend suggested, the only sensible ways to get through the holidays are either (1) remaining under general anaesthesia through January 3, or (2) checking into a luxurious hotel with no phone, good books, and room service.

Just don’t forget the underlying message: especially during the holidays, family makes everything worthwhile, and if you don’t have a family of your own, you have nothing.

Wait a minute. Is that true?

I have a supportive husband who sees me as a person rather than a mere baby-making machine, wonderful friends, a Chihuahua who curls up by my side every night, and a rapidly developing career that I love – so many reasons for gratitude! On the other hand, I have multiple chronic illnesses that frequently inhibit me from living life as easily as others do, and I lost my wonderful dad to frontal lobe dementia in May 2010, an absolutely devastating personal loss that will never leave me.

But no matter how I examine my life, no matter how much I ponder my strengths, my weaknesses, or both, I always come to this conclusion: I am more than my (in)ability to have children. And, if you want to be pregnant but are not, you are so much more than that too.

We are definitely the sum of our pasts and our present selves. Sadly, I am watching so many people I know struggle. I know people who have had multiple recent deaths within their inner circles, who have gravely ill spouses, who are going through divorces, who may not be able to see their children (even though they have them), who simply cannot keep up with the societal expectations of the season, and so on. So many of us are just doing the best we can to get through it all right now, whether we can’t conceive, or the fruitcake got burned…

Lately, I’ve been struck by the devastating situations that children face at this time of year (and all year, for that matter). My nightly news broadcast keeps reporting that local charities do not have nearly enough toys for all the children that can only get holiday presents through donations. I have also seen a series of advertisements for a foundation seeking money to buy medications to treat leprosy in impoverished children. So many parents worldwide do not have jobs, or homes, or grocery money.

And then I think, I’m not rich, but I do have a job, a place to live, and a stocked kitchen. And I suppose I could think, It’s not fair! I could provide for children more easily than they could, and they have them! But, in actuality, I’ve been thinking, you know, there is more than one way to “mother” or “father” in this tragic world, and we can all start today…

As I conclude this post, I want to return to the subject of my wonderful dad, who would have turned 68 on December 15. He worked hard, played hard, and made people happy with his kind nature and silly jokes. He exemplified the kind of person I strive to be, and I hope he is watching me from wherever he is with pride. The twist? He was my adoptive father, but I never thought of him that way, and I’ve never known a more loving dad. Of the countless lessons I indirectly learned from him, the most important was that your “family” is by no means limited to blood. I’m not suggesting adoption is the answer for everyone, and I’m not diminishing the devastating loss we all feel with infertility. But I wouldn’t exchange my life (or either set of parents) for anything.

That said, I do believe that we are all one family on this planet, and as my favourite band U2 once brilliantly sang, “We get to carry each other,” a fact that us humans frequently fail to remember. And this particular family is what makes everything worthwhile, and if you don’t have your Earth family (and, hopefully, some love and peace to go with it), then you have nothing.

A fate even worse than not being able to post your own sonogram photos on Facebook.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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November 22, 2012   2 Comments

Father’s Day: Infertility, Quality Of Life – Research On Couples

In thinking/reading about Father’s Day and infertility, I came across an interesting research study. I thought I would share the link to it here for those who are interested. Too often, researchers have not looked at the couple as a whole (when studying the impact of infertility on quality of life).

To read the abstract, click:

The full text article, ‘Congruence of quality of life among infertile men and women: findings from a couple-based study’, can be accessed:

Father’s Day can be a time of grief and sadness for those who have suffered loss (such as infertility). If someone you know is struggling with such holidays, consider asking if there is anything you can do to be supportive. Each individual and couple is unique. The best way to know how to provide support is to ask.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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June 17, 2012   No Comments

Mother’s Day: Tips From RESOLVE Chat

On what is the eve of Mother’s Day (at least here in the United States), the link below may be helpful to some readers here:

My thoughts go out to anyone who is struggling (or has in the past) with infertility, pregnancy loss, insensitive comments from people, and the time/energy/stress involved with investigating, paying for, and pursuing family-building options (of all sorts) in the face of infertility. My thoughts go out to those who are childfree-not-by-choice.

Given the statistics, it is highly likely that you know someone (or multiple people) who are struggling with infertility. Many people dealing with such struggles are very cautious about sharing this information. If someone has entrusted you with information about their struggle with infertility, I think it’s important to be be mindful of how excruciatingly painful it can be. Mother’s Day is one of those especially difficult times for many. Please try to remember those who are coping with such situations.

Last but not least, Mother’s Day can be difficult for others who are not struggling with infertility. For those who lost a mother or a child, it can be a very painful time. Each year when I do a Mother’s Day post, someone I know online points out another life situation that makes this weekend emotionally difficult for them. There are many such situations. The point I wish to make is that I think it’s very important to remember how difficult this weekend can be for some people and to support them in any way possible. Thank you.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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May 12, 2012   2 Comments

National Infertility Awareness Week 2012

It is National Infertility Awareness Week (NIAW). Often, when we read about infertility online we hear about the struggle of those who are actively trying to conceive… or perhaps about life after a struggle with infertility that includes children. However, there are many others whose stories with regard to infertility may not be heard quite as often. I believe it’s important for the voices of those who are childfree-not-by-choice to be heard as well.

Please take a moment to check out what Lisa wrote here called:

It’s important to increase awareness of the many ways in which infertility impacts men and women. I appreciate Lisa sharing her perspective on her blog and wanted to share it with my readers.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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April 25, 2012   4 Comments

MUC Gene Research: Endometriosis And Infertility

If you’re looking for some light reading, the research listed below is not it. If you’re interested in reading thought-provoking, detailed information regarding research on endometriosis and endometriosis-related infertility, this is an interesting read. For those of you who are not signed up for Google alerts on the topic of endometriosis, you may wish to consider signing up for them.

Today, I received an email alerting me to the newer study below. The notification led me to a site with which I wasn’t particularly impressed. As is so often the case, though, with such alerts that notify me of a site talking about a research study, I found the notification helpful in the aspect that it told me of the study so that I could then go look for the actual research itself (rather than someone’s interpretation of it). I won’t give my own interpretation of this research. Instead, I’ll include the links here for those who wish to read it themselves:

(After clicking the above link, just click “provisional PDF” – at the bottom of the abstract – to see the complete article).

It’s always refreshing to me to see meaningful endometriosis research. With so many endometriosis patients impacted by infertility, I found this research to be a breath of fresh air.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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March 15, 2012   2 Comments

Infertility Treatment Savings: Action Needed

Thanks to seeing Kelly’s post on Twin Peas Blog and Podcast, it came to my attention that there is infertility-related legislation pending at the federal level that affects people in the United States.

As anyone struggling with infertility can tell you, medical treatment for infertility can be extremely expensive. There are very few states with legislation that financially assists those struggling with infertility. Federal legislation (details below) that will assist those struggling with infertility is certainly a step in the right direction.

The more people who take just a moment to speak up about why this is important, the better the chances that it will become law.

As mentioned in the proposed legislation:

“The World Health Organization formally recognizes infertility as a disease, and the Centers for Disease Control and Prevention have stated that infertility is an emerging public health priority”.

Let me say that again because it bears repeating…

Infertility is recognized as a disease.

People who struggle with infertility are no less entitled to appropriate medical treatment than people with other medical conditions. It is discriminatory to deny medical treatment for infertility. By enacting legislation that will make infertility treatment more affordable, the unfair cost burden that infertile couples face for uncovered or under-covered infertility treatment will not disappear but it will be lessened.

The RESOLVE site has links that will quickly and easily direct you to the information you need to contact your legislators to express your support for Family Act of 2011, S 965.

Visit RESOLVE for information on how you can help.

Not directly affected by infertility? Before you move on, please consider this:

Infertility affects approximately 10% of the population. Since infertility strikes diverse groups-affecting people from all socioeconomic levels and cutting across all racial, ethnic and religious lines… chances are great that a friend, relative, neighbor – or perhaps you – are attempting to cope with the medical and emotional aspects of infertility.

Infertility treatment is expensive and even when there is coverage, the out of pocket expenses can be cost-prohibitive. Why not take a moment, using the RESOLVE link to access the information needed, to support those around you who struggle with infertility (or to speak up for yourself)? It only takes a moment and the more voices the legislators hear from, the better. Please spread the word about this legislation on social media sites such as Facebook and Twitter too. Feel free to post this link to help get the word out. If you have a blog, please consider mentioning this legislation there.

Thank you.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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June 29, 2011   4 Comments

Father’s Day: Is It Easier For Men To Deal With ‘Parenting Holidays’?

Recently, I asked a friend who is struggling with infertility if her husband might be interested in writing a guest post here regarding Father’s Day and infertility. I floated this idea out a few weeks in advance because I knew that it would probably require some thought on his part (as to whether or not to write such a post). After all, it’s an emotional topic.

My friend later got back to me and let me know that her husband had given it some thought and had decided not to write such a post at this time. Apparently, though, my having posed the question about the guest blog post triggered some conversation for this couple.

I try not to make generalizations about one gender or another but over the years I have heard many cases of men who talk less about their infertility struggles than women while still being profoundly affected by the struggles. I myself believe that the way our society socializes boys and girls to grow into men and women has a lot to do with how readily men discuss their feelings about the infertility struggle… or not. Many men I know of (who are struggling with infertility) spend less time talking about it than their partners. However, that does not necessarily mean that they spend less time thinking about it or feeling the many emotions associated with infertility struggles.

I was reading the article Father’s Day and the Fertility Challenged. I think there are some men who seem less fazed by the hoopla surrounding Father’s Day than, say, their wives might regarding Mother’s Day. I understand the author’s point that the marketing for Father’s Day is typically more subtle than for Mother’s Day. At the same time, I wonder how many men are out there hurting, grieving, and suffering in silence. I wonder how many men don’t feel comfortable fully sharing their feelings of grief and loss.

Perhaps they have difficulty articulating these feelings? Perhaps they are watching their wives deal with the grief and loss and they wish to spare them additional pain? Pamela Mahoney Tsigdinos touched on this topic (how her husband coped) in her award-winning book Silent Sorority.

I think one of the most important things to remember is that men are affected profoundly by infertility struggles. They may or may not have easy access to the resources that can assist them in coping with their situation. Again, I don’t wish to over-generalize but based on my observations it seems that women struggling with infertility tend to have a better support system than men for dealing with it.

In the course of writing this post, I came across numerous articles regarding the topic “Father’s Day can be tough for men with male factor infertility”. While I have no doubt that this is true, I certainly don’t think that the challenges associated with infertility struggles (for men) are limited to those with male factor infertility. Whether infertility is determined to be male factor, female factor, or a combination of both… the challenges of infertility affect people in all of the above groups.

So, going back to the title of the post… Is it easier for men to deal with parenting holidays? I would argue ‘no’. Women struggling with infertility who undergo infertility treatment have to deal with hormones, injections, and various invasive procedures. This certainly adds layers of additional stress. At the same time, the men who love them and are by their sides throughout the treatment process are on the same complicated journey. They are there supporting and worrying about their wives.

It’s important not to overlook the feelings of men who struggle with infertility. If you know someone struggling with infertility and/or pregnancy loss, be aware that holiday weekends like this can be especially painful times. For couples who have struggled with miscarriages, holidays like this can be especially tough. Your support for your friends, co-workers, and loved ones who struggle with infertility may well make a frustrating, challenging, heartbreaking time just a little easier.

Finally, here is a link from RESOLVE: The National Infertility Association that some may find helpful:

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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June 17, 2011   8 Comments