• Mon, Apr 8 2013

I Was Diagnosed As Infertile At 20 – And Then I Got Pregnant

infertileI was 20 and in college when I was diagnosed as infertile. I’d been taken into hospital for a pelvic scan after months of severe, sudden stabbing pains in my abdomen. The sharp but irregular muscular pains in my ribs finally became so horrendous that my general practitioner thought he should do something about them that wasn’t simply a painkiller and his usual advice that I “try to eliminate stress.”

I went to the hospital alone for a transvaginal ultrasound that revealed an enormous cyst on my left ovary. It was so large it had started to cut off the blood flow, the doctor informed me in the kind of tone that most of us might use after being on hold to a particularly unhelpful call center for an hour. Apparently it was now “withered” and, from what else he’d seen “in there,” my chances of ever successfully conceiving were virtually nil.

I didn’t know enough at 20 to question this doctor – a man who presented himself as the be-all-and-end-all of my chance at motherhood – or why he didn’t schedule me in to have my now defective ovary removed. I was too traumatized to ask for a second opinion.

I did know that I’d always wanted to be a mother and that his reaction to me dissolving into hysterical tears – “Go outside and wait for a nurse”- was entirely inappropriate. The male nurse I spoke to should not have let me leave the hospital in tears, alone and without anyone at home to meet me. But in my rush to get out of there I didn’t advocate for myself.

I was in such a state that I took a wrong turn and ended up walking through Manchester’s Moss Side, an area comparable to parts of Baltimore in terms of safety, and where a group of teenagers took great delight in following me up the road jeering at my hysteria. I’m only glad camera iPhones weren’t a thing in 2002 or I’m sure they would have filmed and live-tweeted it too.

I cried every day for six years over the fact that I’d never have a child of my own. I found it impossible to be around the babies and young children of older relatives. I bonded with one so closely that my brother joked I was planning to kidnap her.

About eight years after the fact, when I’d reached the point of actually being able to tell people – because for a long time this shit rendered me mute – I sought therapy. I was incentivized to seek help after reading the story of an infertile woman who had come to terms with her diagnosis until her friends started becoming grandparents. She then found herself thrown back into grief for the children she never had.

That, I realized, was too much for me. I could not cope with feeling so desperately sad all over again in my pensionable years, especially since I was now married and my husband was having to deal with it too.

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  • Tea

    Things can change. My mother and stepmom were both diagnosed as infertile, for the same reasons actually, and nature found a way. Sometimes things heal, sometimes scans are wrong. I am a bit baffled that they left your ovary in after it “flipped”, I’ve heard that can be a huge risk of infection, but I’m no expert.

    • http://www.xojane.co.uk/author/alisande Alisande F

      Now that I know more I’m baffled by that too. It makes me wonder if that consultant could have had the wrong patient notes in front of him?

    • Tea

      That’s very much possible. I’ve known three people who had an ovary “flip” (I’m sure there’s a proper term for it, but they’re too weighted by a large cyst or end up contorting and cut off blood supply) and it’s not a ” Wait and see” or an ” Oh that’s too bad, it’s dead.” kind of situation, it’s always been a “We need you prepped for surgery ASAP” kind of thing. The body can have a lot of trouble breaking down that much dead tissue and it’s a big infection risk.

    • http://www.xojane.co.uk/author/alisande Alisande F

      Yeah, that’s happened to friends of mine too.

  • russie

    Thanks for writing this and for being an inspiration!
    I’m sorry to hear about the miscarriage, but there’s a light at the end of the tunnel (sorry for the cliche), and I’m really glad that you’re heading towards it!
    Tune into your body – I truly feel that we have the ability to make things happen by using our minds – positive thoughts bring positive results!
    Looking forward to reading about your successful pregnancy and gorgeous new baby!

    • http://www.xojane.co.uk/author/alisande Alisande F

      Thank you! That’s really kind xx

  • EmmaFromÉire

    Dia is Mhuire duit!

    So happy for you that you know know that you can conceive. Sorry to hear about your miscarriage, but i’m sure it’ll only be a matter of time before you’re expecting again!

    Was it an Irish doctor who misdiagnosed you? I’ve found myself that there are doctors, particularly the older male GP’s, who want absolutely nothing to do with ”laides reproductive issues”. Whether it be simply prescribing the pill or looking into more serious issues like the infertility, I will always choose a younger, female doctor.

    • http://www.xojane.co.uk/author/alisande Alisande F

      No, it was a Doctor in the UK. He was older and a complete pig but he was supposed to be a consultant gynecologist. My GP here is a middle-aged woman and she’s great. All the gynecologists and obstetricians I’ve seen in Ireland have been really professional and helpful, thank God.

  • jessica

    I’m really shocked by how you were treated. I too had a very large ovarian cyst when I was about the same age (19). I was rushed in to emergency surgery and told that there was a chance that I would never be able to have kids and all that but the compassionate way in which I was treated by the staff made all the difference. Especially since I was away from home on study abroad at the time and had no close friends or family with me at the time. I’m so sorry you were treated like that! Also, it is so odd what your gyno said to you since even if one ovary is removed, you still have another. With only one ovary it is much harder to get pregnant but not impossible. I really don’t understand what was going through that guy’s head or why he had to be so cold about it. Glad things turned out well for you and good luck in the future!

    • http://www.xojane.co.uk/author/alisande Alisande F

      I genuinely don’t know what was up with him. The more I think about it the more I’m sure he had the wrong notes but even so he was out to treat someone badly that day :( I’m glad you got more sensitive treatment. It would have made such a difference.

    • http://twitter.com/ptownstevesgirl Ptownsteveschick

      My experience when I was young also led me to always, always find a higher up to complain to if I get an off feeling from a dr. The on-call dr who was working the weekend I started going into labor was so rude to me on the phone, that I actually prayed that my daughter would hold tight until Monday. She was born on Tuesday, but I made sure to tell my regular Dr that his fill in was unacceptable, and it turned out I wasn’t the only one to complain. Unless they are a single dr owned practice, your dr will always have a boss.

    • http://www.xojane.co.uk/author/alisande Alisande F

      Yeah, I’m very quick to let medics know when their behaviour is unacceptable these days. That experience left a *very* sour taste.

    • jessica

      Jeez. I’m a midwife and I’m not going to try to pretend that mistakes don’t happen sometimes in a busy practice BUT if you’re going to be telling a patient something so serious, you better make sure you’ve got the right chart in front of you.

    • http://www.xojane.co.uk/author/alisande Alisande F

      Obviously, I don’t know what went on exactly but it’s the only plausible explanation I can really think of.

  • http://www.facebook.com/valerisexton.jones Valeri Jones

    I am so sorry that you had to go through this, but I’m glad to know you have a happy ending! I myself, as well as several of my friends, were told that we couldn’t have kids at relatively young ages, too. Every. Single. One. Of us have children now. When I later went for further fertility testing through a gynecologist, I will never forget the advice she gave me. She said, “The most a doctor can give you is an educated guess. That’s what we’re trained to do. But the human body is an amazing thing, so never underestimate it.”

    I kept repeating that to myself over and over again when trying to get pregnant with my son. The only help I had to have, other than some reassuring words from friends, was an $18 pack of ovulation strips that I bought from Wal Mart. I got pregnant the first month we tried.

    Good luck to you!

    • http://www.xojane.co.uk/author/alisande Alisande F

      That is very reassuring to hear. Congratulations on your son! And well done for staying so positive xx

  • Sandy B

    I just wanted to tell you that this piece was beautiful, even though you did make me start tearing up at work! I hope that you keep writing here.

    • http://www.xojane.co.uk/author/alisande Alisande F

      Thank you so much. That’s really nice to hear xx

  • Helen Hyde

    If you thought you were infertile, why were you using condoms?

    • http://www.xojane.co.uk/author/alisande Alisande F

      My husband is super-cautious and responsible so insisted even after we were married. (Obviously, I used them before we met so as not to get any STI’s.)

    • Helen Hyde

      Oh I see! Thank you for clearing that up. Sorry if I came across as rude, I was going for confused… I wish you all the luck.

    • http://www.xojane.co.uk/author/alisande Alisande F

      No problem xx

    • Gangle

      Any fertility specialist will tell you to wear a condom if you do not want children, even if you are in a relationship, even if you are infertile. Unless you have had a hysterectomy you still need to wear ‘em to be sure to prevent a pregnancy.

    • http://www.xojane.co.uk/author/alisande Alisande F

      I was also concerned about ectopic pregnancies so we carried on using them.

    • Gangle

      Of course! I forgot to add that. That is absolutely also a reason to not ignore contraceptives. I am so sorry about your miscarriage, btw. I hope that you are seeing a better specialist, and you are able to get on top of your infertility issues and have some happy news soon!

    • http://www.xojane.co.uk/author/alisande Alisande F

      Thanks xx

    • Helen Hyde

      Did not know that!

    • Gangle

      Thats ok, you don’t know til someone informs you!

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  • Melanie

    This is a good reminder that we should all be diligent in our own research about our bodies and seeking out second opinions. It is definitely possible to become pregnant even with one working ovary, so I don’t get why he would tell you that. Doctors are not god, and they are often wrong. I’ve recently been told by my doctor I need to have a hysterectomy because of infected ovarian cysts on both ovaries. It may come to that, but I am currently seeking out every other option/possibility. It’s good to share these stories because it reminds people to empower themselves when it comes to their own health, and not to take what one doctor says as the final word. Best of luck getting pregnant!

    • http://www.xojane.co.uk/author/alisande Alisande F

      Thank you for your comment and good luck message. I am hoping people will read this piece and question their doctors more/ worry less about their chances xx

  • http://twitter.com/ptownstevesgirl Ptownsteveschick

    When I was 14, I had much the same thing happen to me, except they told me they were going to remove the cyst and ovary and even scheduled a surgery. Two CT scans, and a final ultrasound before the surgery determined that nothing was wrong, they said the pain and apparent “cyst” must have been a portion of inflamed intestine. I had my mom to help me through the hysterical parts, but I still remember leaving on the day before I was supposed to have surgery in complete shock and anger at the misdiagnosis. The OB who I went to see later lost his license for misconduct with patients. Lesson learned, always get a second opinion!

    • http://www.xojane.co.uk/author/alisande Alisande F

      Oh my goodness, that sounds horrendous. Thank God they didn’t operate!

  • http://www.facebook.com/skyebellematilda.brand Skye Belle Matilda Brand

    I’m not sure if things are similar there, but here, in Vegemite Land, we have the legal right to request copies of oh medical records. Its a pretty simple process & mostly costs nothing (if you require postage or reprints they may charge to cover costs).

    • http://www.xojane.co.uk/author/alisande Alisande F

      That’s not a bad idea. I should look into it.

  • http://www.facebook.com/jessica.heckner Jessica Massey Heckner

    Just a question- why were you using condoms in the first place if you thought there was no way you would get pregnant??

    • http://www.xojane.co.uk/author/alisande Alisande F

      To prevent ectopic pregnancies, mostly, and because my very responsible husband insisted until we started trying to conceive. And as Gangle points out below, fertility specialists will tell you to always use condoms to prevent an unwanted pregnancy even if you are diagnosed as infertile.

  • mamanas01

    Great story. I encourage all women to become educated and be the strongest advocate for thier fertility. Research, research and research. Also join a blog that have similar women experiencing infertility. I have had two natural ans successful pregnancies in my 40′s thanks to taking the lead on my treatment. Ironically, my treatment was no treatment.

    • http://www.xojane.co.uk/author/alisande Alisande F

      Thanks, and well done on taking control of your situation. Congratulations on becoming a mother!

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  • http://www.shesallwrite.me/ Carla Riseman

    Last September, my (now former) OBGYN, without even a tiny hint of empathy, told me to get a hysterectomy because I’d never conceive or carry a child again. My husband and I stopped being careful while I considered the hysterectomy surgery–where would I get it done? When? Who would help us during my recovery? 10 weeks later, I conceived. I’m due in 10 weeks and I can’t tell you how glad I am that I dragged my feet in scheduling that hysterectomy.