As told to Kathleen Guthrie Woods
Mari has been through the wringer, specifically the wringer called stage II endometriosis. While it’s considered a “mild” condition, its effects on fertility can be devastating and cruel.
As I read about Mari’s journey, I, like Mari, wondered how many other LWBers have been suffering from this. Is endometriosis part of your childless-not-by-choice story? If so, I hope you’ll share some of your experience in the Comments.
When asked “What’s the best advice you’d offer someone like you?”, Mari replied: “Follow your gut, do whatever you need to do to get answers. Explore all your options. And most of all, take care of yourself.”
Here’s how Mari took care of herself.
LWB: Describe your dream of motherhood.
Mari: My dad died when I was 14, so my dreams of motherhood included having a boy and seeing my father in him. My husband has red hair, and I always imagined we would also have a little girl, with wavy red hair and freckles. We’d dress them in knit hats with animal ears and witty onesies. We would go camping, carve pumpkins, find a great sledding hill nearby…every season would have special moments.
LWB: Are you childfree by choice, chance, or circumstance?
Mari: By chance and circumstance. My husband and I had a lot of anxiety about parenthood, so we left it up to nature the first year. Much to my surprise, it didn’t happen. So I got in the game and tracked my basal body temperature, etc….still nothing. Meanwhile, everyone around me seemed to be getting pregnant without trying. When was it going to be our turn? What was wrong with me? Maybe this delay was just the universe telling us to go have an adventure while we can. So we took a trip to Japan, something we always talked about doing someday. I had hoped to conceive a “souvenir” while we were there. Shortly after our return, I decided it was time for fertility testing. We passed everything with flying colors except for what my doctor thought was a fibroid on my HSG [hysterosalpingogram] X-ray. I scheduled hysteroscopic surgery for removal, but it turned out to be just an air bubble on the X-ray from the contrast fluid. I felt like such a fool for getting my hopes up that this would be our fix, and for paying several thousand dollars for NOTHING. We tried IUI [intrauterine insemination] once after that, then decided to keep trying on our own since we couldn’t find anything wrong. A few times I wondered if I had endometriosis, but my OB/GYN wasn’t concerned since adhesions didn’t show up on the X-ray or in the pictures they took with the hysteroscope.
LWB: What was your turning point?
Mari: This spring I was at the outlet mall for a girls shopping trip. We went into a kids clothing store for my nieces and nephews, as we do every year, but I couldn’t bring myself to walk around and be reminded of my broken dreams, to feel my heart sink each time I saw clothing I would pick for my own little ones. So I hung out by the door, watching glowing mothers parade in and out, feeling so many awful feelings. Then the tears came. I realized I wasn’t going to be able to move forward until I had answers. I went to see the fertility specialist again who recommended laparoscopic surgery, since endometriosis makes up about 40% of unexplained infertility cases. My OB/GYN advised against it, saying I could put that money toward IVF. But I went with my gut and did it anyway, based on my history of painful periods and IBS (irritable bowel syndrome) symptoms. And I was right: Surgery revealed stage II endometriosis, with adhesions near my bowel and appendix.
LWB: Where are you on your journey now?
Mari: We’ve spoken with adoption agencies and have had an IVF consult, but can’t bring ourselves to commit to what would be an even more expensive and emotionally draining journey. Stage II endometriosis equals mild endometriosis, so we’re back to leaving it up to nature, even though our chances of conception are slim. I’m fed up with hope, with bullshit miracle stories about a friend of a friend who conceived a unicorn by eating a rainbow. I just want to “be” for a while. To sum it up, I would say we are taking a break until our Plan B becomes clear to us.
On your journey, was there a turning point moment when you listened to your body and defied an “expert’s” advice? Perhaps you pursued a test that confirmed a barrier you suspected, or perhaps it was that moment when your body announced it was DONE trying to conceive and nudged you forward into grieving and acceptance. We’d like to hear from you. Please visit the Our Stories page to get more information and the questionnaire, and consider sharing your story with women who truly understand what you’re going through.
Did you know Kathleen Guthrie Woods is getting ready to tell her own story? The Mother of All Dilemmas follows her journey of pursuing being a single mother then embracing a life without children, and explores the reasons our society still presumes to calculate a woman’s worth based on whether or not she’s a mother. Keep an eye on LifeWithoutBaby.com for announcements about the book’s release.
Brandi Lytle says
Thank you for sharing your story, Mari. I, too, have endometriosis. Mine isn’t nearly as severe as others, but it does cause me pain & was part of the reason my husband and I were never able to conceive. We found our plan B and are now traveling the acceptance of childlessness (with more good days than bad). I hope that you find your plan B and peace with your journey, as well.
Mari says
Thank you!
Mel says
Thank you for sharing your story. I also have Stage II endometriosis and IBS. I went to see an OB/GYN a couple of years into our infertility journey because I (and the fertility specialist I was seeing) suspected endometriosis. She first told me to go on birth control pills. I reminded her I was trying to get pregnant–that was why I was seeing her. I said I’d like to have the lap surgery done. She said, “go as far as you can with fertility treatments and if they fail then we can talk about doing surgery.”
!!!!
I was heartbroken and left her office in tears. I didn’t have $20,000 for IVF! My insurance covered the lap! I gave up for a few years and then found a wonderful OB/GYN who got me in quickly. Sure enough, endometriosis.
We’ve tried some low-level fertility treatments but because of the endo and IBS and the monthly heartbreak I finally did opt for the birth control pills just for some peace, for some mental space to figure things out. Crazily it has been a lifesaver and I’m terrified of going off of it and living back in the endo/IBS nightmare.
Best wishes to you as you figure out your next steps. I<3
Mari says
Hi Mel,
I was also shocked when my OB/GYN suggested skipping laparoscopy and going into IVF blind. With more severe forms of endo, IVF is not an option. Not to mention laparoscopy is typically covered by insurance – but in my case, they denied coverage a few weeks after, saying it wasn’t medically necessary, and I was going to get a bill for over $10,000! I spent an entire weekend drafting an appeal letter, which included articles from medical journals that demonstrated how endometriosis is a chronic disease and laparoscopic surgery is the only way to diagnose and remove adhesions. You can appeal up to three times, and I expected it to be a losing battle. A few weeks later I received another coverage statement in the mail, this time showing my cost to be less than $2,000. I couldn’t believe it! It felt so good to have a win.
Thank you for your response and I’m sorry to hear you have had a similar experience. I just started back on the pill for pain relief as well. It’s supposed to suppress endometriosis, so hopefully it will increase our chances of success down the road if we decide to do anything further.
irene says
Thank you for sharing your story, Although i may not have endo, I am cnbc due to unexplained infertility and I can relate to this in many ways .. our dreams are similar except I want a baby girl (will most certainly be happy with any gender regardless) I have been to a few vacation spots thinking and wishing i’d conceive but it never happened .. i have/had dreams of going to the pumpkin path/apple picking and save certain activities for m child when i don’t even know if it’s going to happen now .. although our tests were cleared my gut says something is wrong .. i tried clomid failed 4 rounds and had 1 iui and gave up because i felt like a lab rat and cash cow for the fertility clinic and obviously the iui never worked .. i decided to not go through with further fertility treatments and trying to heal whatever unknown thing that is going on inside me .. and just “be” although someday are extremely hard .. i have to keep going .. sorry for the ramble .. lots of support, love and understanding your way
Mari says
Hi Irene,
I wholeheartedly agree with you, IUI is expensive and the success rates are low, which is why we only did it once as well.
I’m so sorry that you are in infertility limbo. Not knowing is the worst part, when your mind turns against you and you start blaming yourself. Follow your gut and do whatever you need to do for your own well being.
Kerry says
I wholeheartedly agree with that last sentence. I wish I had been more assertive in carrying that out for myself. I had endometriosis probably as early as middle school or high school but didn’t get diagnosed until my late 20s because I didn’t push doctors enough for answers. It was difficult to speak up for what I needed because so many people (including female bosses) still don’t believe endometriosis is real. With all of the pink ribbons around right now I can’t help but wonder if people cared as much about endometriosis if we would have more answers about causes and better treatments than going straight to hysterectomy. I put it off as long as possible to leave the door open for pregnancy but ended up with life-threatening complications.
Brandi Lytle says
I’m so sorry, Kerry. I suppose we just have to keep talking about this illness to raise awareness, hoping that validation and answers will come in the future.
Mari says
Oh Kerry I’m so sorry. You are right, it’s really unfortunate how little is understood about endometriosis. I also struggled with crippling monthly pain as a teenager, with the pill being the only thing that brought relief. Doctors always said it was normal, but crippling pain is NOT normal.
Margaret says
Mari, Thank you so very much for sharing your story, your dreams, and the steps you’ve taken or considered. My step-son and daughter-in-law are in this infertility limbo and it has been very hard on them…and hard on us. Do you have any advice for us, as parents-grandparents? I have vacillated between waiting for daughter-in-law to want to talk and me initiating any conversation — but is that fair? Should I be asking more questions – and if so, what? I worry about trampling on her heart even if my intentions are to be supportive. I worry about offending her as though I’m sending the message that own self-worth as a person is tied to being a mother, too. Much love to you and hubby.
Brandi Lytle says
Margaret, it sounds like you are really trying to take your son and daughter-in-law’s feelings into consideration, which is very sweet.
To answer your questions, I can only speak from my perspective as someone who struggled with infertility for ten years and is now four years into accepting a childless life. I always appreciated it when people allowed me to talk and didn’t make me feel like I was making them uncomfortable. I was always very open about our struggles (but not everyone is). I never wanted (or needed) advice such as “relax” or “adopt.” Those words are hurtful.
My mom was amazing at just listening and allowing me to express any and all emotions without judgment. She actually wrote a blog from her perspective on my site. You might check it out–http://notsomommy.com/perspective-from-the-mom-of-a-childless-woman/
I hope this helps a little. The infertility journey is so difficult and complex. Sending hugs to you and your family…
Margaret says
Thank you Brandi. I will check out your mom’s blog and appreciate your willingness to reach out.
Brandi Lytle says
🙂
Mari says
Margaret, it’s wonderful that you are so being considerate of your stepson and daughter in law’s feelings. I think all you need to say is that you are there for them if they ever want to talk, and that you support them no matter what.
I have been fortunate to have incredibly supportive parents and in-laws such as yourself. Even so, it’s hard not to feel like I’m letting them down by not pursuing IVF or adoption.
Best of luck to you and your family.