Face Making

Artist Gwenn Seemel’s bilingual blog about art, portraiture, free culture, and feminism.

What “infertile” means

2011 . 07 . 12 - Comments / Commentaires (8)

Last month, someone important to me had a baby. I’ve known people who were procreating before, but this was different because the new father was a very close friend of mine growing up. We don’t talk much anymore, but something about the birth of his daughter threw me in a way that I wasn’t expecting.

I happened to be at my parents’ when news came and, at some point during the day, I had a bit of a break-down about my infertility. My mother tried to console me by reminding me that my partner and I hadn’t even tried to have a child yet. I furthered her argument by telling her that we weren’t even sure that we wanted to be parents.

Still, I was sad. Illogically sad, but sad nevertheless.

In retrospect, I see what was—and is—going on for me.

While it may not be proven that I am sterile, everything having to do with lady bits and procreation and children is colored by my endometriosis, the disease that might make me unable to reproduce. Sure, my body may be perfectly capable of making babies, but, when it’s a challenge to have sex that isn’t at least a little painful and when I rarely go a day without aching and fatigue, it’s hard to feel fertile.


This month, I’m writing about infertility and disability a bit more since I’m participating in A Somewhat Secret Place, a show focusing on disability and its status in art and in society. For more information about the exhibition, visit its blog or go see the work in person!

939 NW Glisan
Portland, OR 97209

Open: 7 through 30 July
Hours: Monday through Saturday from 11 AM to 5 PM

Closing party: Saturday 30 July from 6 to 9 PM

- Labels matter.
- Disability and my sense of self
- Ready

CATEGORIES: - English - Endometriosis - Philosophy -

Gwenn Seemel on Liberapay     Gwenn Seemel on Patreon

(8) Comments / Commentaires: What “infertile” means

-- Jessica -- 2011 . 07 . 12 --

Endometriosis presents itself in so many forms, even within the same person. I find this fascinating and frustrating. I’ll have a painful cyst within my ovary that makes me question my fertility and I cry over possibly not being able to have kids. Months later I have such strong, nauseatingly painful cramping and bleeding during my period that I curse being this kind of fertile at all, crying once again over my body’s seeming inability to just be normal.

In other words, I hear you.

My therapist told me after I was diagnosed with polycystic ovaries in addition to endo that she thought I wasn’t afraid of infertility, I was afraid of doors closing. Of that option being gone, whether I wanted it or not.

Thanks for writing about all of this. It’s nice not feeling alone amongst other women, even virtually.

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-- Julie Blackman -- 2011 . 07 . 12 --

When I was in my late 20’s and early 30’s, I had endometriosis - discovered after many months of unsuccessfully trying to conceive, painful cramping and periods. It seemed every friend of mine had babies during this time and with each new birth, I mourned. Each month when my period came and I wasn’t pregnant, I mourned. It was one of the most difficult times in my life.

I had a hysterectomy at age 35 and adopted 2 babies wanting to close a painful chapter in my life and move forward. Now I am nearly 60. Like all loss, the pain goes away, but can rear its head from time to time in unexpected ways.

You are not alone in this journey. If you want to talk, I’d be happy be a support.


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-- Amanda -- 2011 . 07 . 12 --

This is something I have struggled with a lot this year. We knew that with my Endo I might be infertile and actually despite how heartbreaking it would be for us not to have a family when we desperately wanted one, we came to a peace about it and decided to try for a year and if it didn’t work to then look into adoption.

I then fell pregnant straight away… shocker, right? What no one ever expected though was that my body would allow me to become pregnant and sustain a very healthy pregnancy in terms of the baby, but take an unbelievable toll on my body. I was feeling nauseous even before I got a positive test. By week 6 of my pregnancy I was bed bound with the sickness. By week 8 I was almost hospitalised due to dehydration. By week 13 I was finally able to get out of bed but I was still fighting the urge to throw up all day long. I waited and waited for it to end but it never did. By week 23 I went to my doctor in tears, unable to gain any weight as I couldn’t eat I was so sick. They finally put me on anti-emetics and now at 29 weeks I have finally caught up on the weight gain but still get nauseous every day, just it is manageable now.

At my worst I was unable to eat, drink, move or even talk without throwing up. I lived in hell and lonely isolation and I resented the pregnancy. The one thing I had always known I wanted and I resented it. It was made doubly worse as the hypermobility of my joints left me with an unstable pelvis by 20 weeks, and I am in pain daily with my hips and back. Add to this the stabbing pains I now get thanks to the scarring from the Endo and previous surgeries being stretched and you start to get the picture of how traumatic it has been on me physically.

Endometriosis may not have affected my fertility as such, but my body just isn’t very able to cope with pregnancy. I fear falling pregnant again and going through it all. I have had to make a choice to say “yes, I am fertile and can have babies, but I don’t think my body can take it” and that is hard. And the guilt that comes with resenting what so many women never have the chance to experience is unbearable.

I love my child and cannot wait to meet him. I would never regret having gone through this, but at the same time it has been one of the darkest times in my life rather than one of the happiest and I am not willing to put myself, my husband and my child through that ever again. And that affects me deeply because suddenly it is a choice I have made, albeit because of my health, but it is still a choice rather than infertility that could have been thrown at me.

My husband tells me he knew I’d be ill because I always got so ill with my periods and the various hormonal treatments they tried to control my Endo.  And that just brings it all home to me… Endo may not have robbed me of the chance to have a child, but it has certainly robbed me of the chance to ever feel like a “normal” woman. And that is the hardest thing to accept sometimes.

Sorry for the extremely long comment, it’s just this post really spoke to me and I wanted to let you know that although I’m coming from a slightly different angle, I totally get what you’re saying.


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-- Carolyn -- 2011 . 07 . 14 --


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-- Gwenn -- 2011 . 07 . 14 --

Thank you all for your comments.  It’s fascinating to see the different versions of the same basic story played out.  That and the virtual hugs make me feel less alone.

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-- Sunny -- 2012 . 03 . 03 --

hi Gwen,

I’ve been reading bits and pieces of your blog for the last month or so and I’ve only now learned of your difficulties with endometriosis.

In reading this entry, I thought maybe I could bring a bit of hope to your world by telling you a (very) brief bit about myself.

I turned 33 a couple of days ago and I have two children. Madison, almost 14, and Wes, just turned 9.

I was diagnosed with endo when I was 16 and I had my first laparascopy. My specialist told me in no uncertain terms that the disease was exceptionally bad (stage IV) and that they could only remove some of the adhesions. In a year, they would go back in and remove some more.

When I had my scope at 17, not only had everything they’d removed grown back but more adhesions had grown on top of that. It was suggested that if I were planning to have children, that I consider doing so sooner rather than later, not because it would “cure” my disease, but because the disease itself was bad enough that if I were to wait, I probably wouldn’t have the option of having them at all. The surgery had “cleared me out” enough that ideally my fertility would remain intact long enough to give me a chance.

Well, I’m nothing if not proactive and long story short, my boyfriend and I decided to try for a baby. It took me a year to get pregnant, but it happened, and that’s the story of Madison.

Things didn’t work out with the boyfriend, but that’s a whole other story.

Fast forward to when I was 23. I had just had my 3rd laparoscopy and it was the same story. The disease was extensive. They cleaned up as much as they could of it and I knew I would be in less pain for a while, but as you know, this disease doesn’t really stay “fixed” after surgery and it would only be a matter of time before things grew back and the pain would be as bad as it was before.

I hadn’t planned on having another child and I didn’t have any prospects but it was suggested that I try to have another to “cure” the disease. I was too young to have a hysterectomy, they said, and I should at least try to have one more blah blah blah.

But then I fell in love and got engaged. And we wanted to have another child. It took almost another year but I got pregnant - with stage IV endo - and 10 months later my son was born.

I have since had two more laparoscopies and at this point I’m just waiting it out, with pain, until I can safely have a hysterectomy (as in, when menopause would naturally occur).

So why am I telling you all this? Because TWICE, with stage IV endometriosis, when they told me it would probably not be possible, I conceived, so I’m just saying that it IS possible. Everyone’s different of course, but just know that it’s not necessarily *impossible*.

Be well. :o)

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-- Gwenn -- 2012 . 03 . 05 --

Thanks Sunny!  It’s outrageous how many people I know through one connection who end up being someone I can understand through this disease, and still so many people don’t know what endo is.

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-- Sunny -- 2012 . 03 . 05 --

Yep, I totally know what you mean. Every time I switch doctors and I need them to prescribe me painkillers, they treat me like I’m a drug addict exaggerating my pain to get drugs. I have to keep a copy of my last surgery report to show them that I’m not lying. How are you supposed to get regular people to take this disease seriously when I have a hard time getting my own doctors to do the same?

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