When you have endometriosis babies seem to be everywhere

It’s time for confession. Unlike many of you, starting a family has never been particularly high on my priorities list. It wasn’t really so when I was healthy, and I suspected a desire would leap out from somewhere when my fertility started to come under question with my endometriosis diagnosis – but it didn’t. I stayed calm. There was no urgency to try and conceive, there was no desperate sorrow that I know many of you face each day.

I sort of welcomed the finality of a door being potentially closed.

Seeing all these new arrivals, all the excitement leading up to other people’s new children. Even though it’s not something I want for myself (possibly ever). A part of me I can’t place still feels sad about it somewhere. Not enough to make me want to do something about it, just enough ambivalence and turmoil to remind me of what I might or might not be missing out on because of illness.

It’s time to deconstruct this feeling I am feeling.

Ambivalent is the best way to describe it

Don’t misunderstand me, I know plenty of you desperately want to start a family, it’s probably been something you’ve desired for years and want more than anything else, some of you need this more than a cure to your pain. Despite not having the desire I can totally relate to the heartache. I secretly hope everyone around me that wants the blessing of birth will be graced with it. I have no religious faith at all, but I hope for you all intensely every single day.

Part of it is sadness for myself and my partner, part of it is sadness for those I know around me who want a child so badly, and are reminded of how easily it can happen to others. People are naturally excited to hear when they are expecting, but so excited, they’re not (unreasonably) mindful of the feelings of others around them.

I have to admit though, in this new year so many people around me are excited about or are having children. I guess I’ve reached the age where this is extremely commonplace among my peers.

Existing parents can say some really daft things

People make crass comparisons with my illness all the time too, about how tired they are to be raising a family, how it must be similar to being ill all of the time (it isn’t, there aren’t many positives). I do my best to speak up about this, to point out that while I am not fussed in the least, saying something like this to someone else with endometriosis is rubbing someone else’s face in it, utterly insensitive and liable to reduce another woman to tears.

Then there are the people who go further and add that I haven’t lived a full life because I don’t have children. Utterly patronising. It’s a choice some people never get to make and it’s grossly unfair of others to assume why that might be.

Consequently, I’d argue you’re living life “version lite” if you’re living without a long-term illness or disability (or caring for someone who does) and don’t have the first clue yourself, but hey ho. The only people who top my respect list are people who somehow manage to raise a family and manage an illness. I don’t know how people can do it. I guess you find a way, but I’ve already found my limit.

Why do others people’s children still bother me?

It boils down to a couple of things:

There’s still a presumption in our society that you need to have children to be “happy” or “whole”

Naturally, I don’t think this is true, your life is full of whatever happiness you create. No one gets to decide that but you. It’s the judgement of others that upsets me.

I wouldn’t dream of telling people what to do with their children, so I don’t quite understand why people deem it appropriate to comment on my lack of desire to start a family, or anyone else’s situation for that matter. There are any number of reasons why someone doesn’t have children. It may be something completely out of their control. It may hurt just to see a child some days, let alone someone ask or prod into such a sensitive area.

This happens to all women, but it’s particularly cruel to do to anyone with endometriosis, when issues of infertility and painful/difficult sex are in the forefront of our minds. The only exception being questions from your health professional or consultants, because questions about your sex life or desire to conceive will impact directly on the course of treatment you experience.

So it’s the endless questions and butting in of others than riles me. People are nosy and rude questions about “when you’re having a child?” or “when you’re having your next child?” are best left alone. It’s frankly no ones business but yours.

It’s a reminder that my body is broken in some way

By it’s definition chronic illness makes my life so much harder, and raising a child – the most natural of human endeavours is another thing that will be made harder for me. Another thing where I have to work out the right balance, navigate like it would be a difficult task. It’s another reminder of something I’m incapable of, something just outside of my reach.

It’s hard thing for anyone to achieve but it seems like an impossibility to me looking outward in, something that I don’t think I’ll personally get to experience. Our illnesses have a habit of isolating us in this way.

The treatment for my illness parallels pregnancy

The ultimate insult. I’m on a cocktail of hormones and tablets that give me some of my quality of life back, but do so by emulating the very experience others think I know nothing about. I haven’t had a period in about four years. At one point I had morning sickness for about two years. Nausea still follows me around like a hungry dog.

I’ve experienced all of the stress and struggle of those first few months of pregnancy with none of the reward.

Why don’t I want children?

Some say I am a little bit selfish for not wanting a family. To take that to it’s logic conclusion, I think I’m being a little altruistic if anything. I am (by my own admission) only just about able to manage my own life right now. I am unwell a good proportion of the time. I don’t see how I could manage raising a child without having to ask for extra help from my partner and extended family. I think it would impact my quality of life horribly, and I personally wouldn’t be able to give a child the time, attention and care they need.

It’s something you have to want 100%, it’s something that has to serve as it’s own motivation and reward, something you’re completely passionate about. There’s no doubt in my mind that the hundreds of women with endometriosis around me want and deserve it more, and they’ll flourish if given the chance. I think I’d struggle, I don’t think it would be the making of me like it would be for others. Bottom line, I am not sure, and as a result it’s not something I’ll pursue, but I am certain it’s not something I’ll regret. The only thing I’m not sure of if if I hadn’t have become ill maybe it would be less black and white for me, but I don’t like to think about “what if” scenarios like that.

Life has to be about choice, and when everyone else is free to make their own choices about life, well I’d like the same liberty to make mine. I just wish people understood the lack of desire/inability to have children as well as the need for them.

Even so, having part of the choice taken away from us? That’s still quite hard to deal with, no matter how you feel about it.

11 responses to “When you have endometriosis babies seem to be everywhere

  1. Thanks for the insightful post. I have never had children myself and find the questions from people, even my own family, hard to answer. At my age now, I sometimes wonder what it would have been like, however I have also spent a lot of my adult life sick. Multiple surgeries, many days in pain. I rely on my husband to do a lot of the work around the house, hired a housekeeper to do the inside work. I just don’t have the energy and it takes all the will power I have to get through a work day. Sometimes, it’s all I can do to make it home so that I can take some pain medication and have a few hours of relief. The pain meds are a double edge sword for me. I can’t sleep because of the side effects but without the meds, I don’t have any relief. I am so happy that I found your blog, it is nice to see that I am not alone in how I feel.

    • Sounds very familiar Elly. A few hours a pain of pain relief are the most precious thing I have right now, I don’t have the headspace or the physical energy to try and share that with a child, it wouldn’t be fair.

  2. Elaine Minett-Smith

    I fully understand your thoughts on this. I have chosen to try for a family and will only be keeing to natural conception and do not want to go down the path of IVF, my husband is fully supportive in that decision too. Although the risk of miscarriage and ectopic pregnancy increases with endometriosis and I’m more worried about experiencing those than not conceiving at all. It’s going to be emotionally tiring from that respect but I would like to try, although I will stick to my limits and understand that it just might not happen.

    Those questions are awkwardly annoying and the comments made can be very insensitive. I also find it difficult knowing when someone is excited about expecting. It is a reminder of the difficulties I experience and the possibility of never having that feeling for myself.

  3. Sara

    I had my child at 17, as you can imagine no one really said congratulations, but people today (16 yrs later) even health professionals are quick to say how lucky i am. No one gives a thought to the effect my illness has had on that child, or how hard my partner and I have tried to be ‘normal’ to hide the worst from him. Even through all my surgery’s and hormonal treatments people still say “when are you having another?”
    Like the one I’ve got isn’t enough for them. The saddest part of my story is last year he moved in with his step mum and natural father- he said to me he wanted to know what it was like to live with a mum who isn’t sick all the time. I don’t share my story lightly, I understand everyone’s journey is different- even though we may share the same pain- but the opportunity to share with a community of women who may just understand me was a chance I had to take. Thankyou for letting me get that off my chest! sending you all pain free days! 🙂 I love the blog it really helps to ease the feelings of loneliness that come from other peoples lack of understanding of our illness, thanks heeps Michelle.

  4. Hello! My name is Liz. I am57 and had horrific periods that included nausea & vomiting. At the time I was told to suck it up and take some Tylenol. A heating pad -at best! Now I have been suffering with intractable rectal pain for ten years after a simple OB GYN procedure. My question is Does endorse continue after menopause? Could these threads be somehow wrapped around my rectum causing me pain from the time I stand up to the time I go to bed? I am in so much pain! Thanks for any comments. All tests are negative. The endo specialist I saw said he would not touch me as in “do no harm!” Gawd! Help me!- Liz

    • Hi Liz, it is possible for endometriosis pain to continue after the menopause, however most women get natural relief at that stage. Rectal pain too can be a symptom of endometriosis – but it could be a complication of something else. I’d urge you to seek another opinion on your symptoms, it’s not acceptable for you to have to continue to live like this.

  5. Mariana

    Hi thank you for sharing your experiences with us. You made me feel that I’m not the only one with the condition.
    It is a daily struggle for me too. I was pain free for 4 years after my laparoscopy and my fertility returned and I had my second child. Now pain is worse than ever. Is painful to carry my kid. I’ll ask my GP for referral to my consultant.
    Take care.

  6. Holly

    Nausea follows me around like a hungry dog- so well put!!

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

My other sites

Pioneer Project - Video games, UX and sustainability