Seven frequently asked questions about endometriosis and fertility.

The business of making children is complex. The business of having children is extraordinarily more mind-blowingly overwhelming. The business of not having children is a different matter altogether. And the business of not (yet) having children, if you’re an endometriosis sufferer, potentially a source of such omnipresent and all-pervasive misery, despair, bitterness, despondency and torment that its essence cannot be expressed in words.

Because endometriosis and children not always go hand in hand. Because endometriosis and fertility are sometimes mutually exclusive. Because when you can’t have something, but others can, the sad desperate wretched obsession, driven by the powerful hormonal waves of despair, is beyond comprehension and beyond endurance.

“I’m sorry sisters, but I just can’t stand all these women who are posting the pictures of their children on this forum. It breaks my heart. I know it might make me look like I’m a bad person, but I can’t bear it”

Familiar? For those not yet ‘blessed’, or those who never will be, this is a painful but true and not isolated sentiment.

“I’ll keep posting the pictures of my children. Why shouldn’t I?”

The other side of the story will ring true for the defiant ‘blessed’ ones.

And so the truth lies somewhere in the middle or nowhere at all. For who really knows what pain lies at the bottom of your weary heart. For each of us the path is different with a different set of heartbreaks and disappointments, joys and successes, hopes shattered and hopes fulfilled. Below is my take on the seven ‘frequently bothering us questions’ about endometriosis and having children that seek to address the key issues I’ve come across that relate to endometriosis and fertility.

1. Will I be able to have children?

I don’t know. Nobody can predict the future. Endometriosis UK, the leading UK charity, states that it depends – see link: Endometriosis UK – Fertility – on the severity of your disease and individual variations and all sorts of other things – pot luck maybe, who really knows. The advice is often cold, dry, unemotional; the doctors won’t commit either way; whatever information is available is so generic it’s difficult to apply it to you situation.

There’s a part of my brain that understands that it’s all about the quality of my fallopian tube passage and other such physiological aspects, but this doesn’t address the emotional issue of having to wait for months, each one feeling like ten years, after the Zoladex treatment, just to see if you’ll have the chance to ‘give it a go’. It may be that the doctor simply got it wrong and now you are in a no man’s land, hurting and uncertain, the process of trying unnecessarily delayed.

I don’t know, but emotionally, it’s likely to be a roller-coaster, no matter what the outcome. So strap on your seatbelt, sister. It’s gonna be a real rough ride.

2. Is it embarrassing and wrong to resent others for having children?

It’s neither embarrassing nor wrong to feel a feeling. All feelings are natural – even the negative ones. Is it right to be openly expressing feelings that may hurt others and about which the others can do precious little? Is it their fault that they’ve been lucky? Verbal criticism is in most circumstances  neither fair nor constructive. Unhappy emotions rarely bring comfort.

And so you somehow must work out for yourself that kindness feels better than anger, however hard it is to turn resentment into compassion. We don’t know what the lives of others are like. Judging another person’s life on one point alone is oversimplifying things. Our own tragedies often seem more tragic than those of others. But life is rarely that simple. To you I say, be kind to yourself and be kind to others. You don’t know what they’ve been through.

3. I have children. Why should I feel bad about letting the world know about my happiness?

Simply put, you shouldn’t, so don’t. Congratulations, and well done. I couldn’t be happier for you. That is without doubt totally smashing.

I think the key here is how those with children present to the world this very happy outcome. Could going onto a cancer forum to boast about being cancer free be construed as unfeeling and insensitive by those who are dying of the disease? I’d argue, it could. Similarly, there might be situations where an unfiltered demonstration of your fertility, to those for whom the attempts at procreating have not yet borne any fruit, or for whom the process is proving to be a struggle, can cause pain. To you I say, be considerate towards others.

3. Will I ever recover after my miscarriage?

Yes, and no. Sadly. No, because for the rest of your life, the memory of this little life inside your uterus is going to be most precious and unforgettable. The grief will lessen but will never completely go away.

Yes, because one day after the harrowing ordeal of losing your precious baby – that as well as an ocean of blood, consignment of dignity, and what may seem like at the time all hopes of ever becoming a mummy – you will wake up and you will feel slightly less desperate. Cling to whatever hope you can find inside your broken heart and keep trying. Have loads of sex. As long as you can find hope, and as long as it’s still what you want, don’t give up. To you I say, be persistent.

4. What to do now that I’m not able to have children?

This is most painful out of all of the questions addressed here. During the Endometriosis March 2015 in London, there was a woman who reached the point of ‘too late’. And you know what? I couldn’t bring myself to talk to her. Her pain was too much. I couldn’t bear it for her and I didn’t want to see myself reflected in her eyes. Yes, I was a coward and left her on her own to deal with her pain.

In the article I read last week, another woman, unable to have children for whatever reason said that she flipped the perception of being ‘childless’ into being ‘childfree’ and embarked on a journey to Tibet to find herself. I’m glad she had the funds and ability to do so. Not all do.

There’ll be people who will avoid you. There’ll be people with the more, or more likely, less helpful advice on how they successfully coped with this or some other unrelated life trauma. There’ll also be people who’ll hold your hand and pass you yet another glass of wine, and listen to you and be by your side on your terms – no matter what. What I’m about to say to you is not a piece of advice – I don’t have any to give. It’s merely my dearest wish for you. Find friends. Find comfort. Find peace.

5. How am I to cope with hurtful comments about my infertility?

“Well, don’t worry, I can always make a baby for you! I’m so fertile I knew I was pregnant with both of my boys straight after having sex.”

Negative comments about fertility don’t have to be aimed directly at your infertility. Sometimes, it’s the simple seemingly innocuous boasting about their ‘high’ (as opposed to your ‘low’) fecundity that you’ll find hurtful. You now have a number of options of dealing with the situation which include the following:

Option 1. For the brave and direct: Tell them there and then, that you find their comment hurtful. Explain why in calm terms. Shame them into better behaviour.

Option 2. For those who wish to avoid conflict: Tell them that you’re glad things worked out for them. And then ditch them as friends – that can be very refreshing. Trust me.

Option 3. Laugh at them: If your pain is not too bad and you can muster a little laugh, turn the situation into a little joke. “I know he’s hot, but that’s a really weird way of trying to get into bed with my husband.”

Option 4. Feel sorry for yourself (strongly not recommended): there are times in life, and those come more often than we would wish, when you have to find the strength you didn’t know you had. Let your partner help. Find a good counsellor. Have endless cups of tea with your best friend. Talk about it. Then talk some more. Try different ways of coping with it. But if you feel you’re spiralling into a bottom-less well of despair, don’t go with it. Consult your family doctor. There are ways to help you cope with your depression. Don’t be afraid to ask for support and help.

6. Does my age make a difference?

Yes, your age can make a difference. There’s an expiry date on one’s fertility. That’s a fact. However, please don’t rely solely on the information you find on google. It can be soul destroying. Consult a doctor. Science means real miracles these days. Avail yourself of the miracles of science. Don’t feel guilty about ‘leaving it too late’. None of us can influence how our life pans out and rarely do we have the insight and wisdom of us tomorrow, today. Use the wisdom of your age to guide you through this hard time, and don’t give up hope.

7. I’m not sure if my partner wants children. What shall I do?

The nuances of procreating are obvious, simple, and well understood. You can’t impregnate yourself. Furthermore, the concept of pairing up to produce and raise children is there for a reason. A problem shared is a problem halved and having a partner can be helpful. But heigh, we live in a modern society and fathers are no longer mandatory.

You may find yourself relying on an unreliable person. You may find yourself single. You may find yourself in one of the countless permutations of ‘things having gone to pots’ relationship-wise.

In the movie How Do You Know, the heroine asks her therapist about that one piece of advice which can help anyone, no matter what their circumstances. The therapist answers by saying: “Work out what it is that you want, and learn how to ask for it.” She comments about how wise it is, but then immediately notices that both are really hard. “Yes”, he says. But the key thing is that as a person you’re stronger than you think just to get to where you are now. To you I say be kind to your partner, but clear about what your wishes are. If you’re single, there’re many forums for single mums and want-to-be-mums who I’m sure will be more than happy to give you all the advice you need as well as the necessary support. Take small steps to get to where you want to be. And good luck.

 

It’s strange how life works out. One day you’re living your life relatively happy, whatever happiness is, the next your doctor is breaking the news that you have a disease that affects your fertility. Now the painful periods make sense, so you feel reassured on some level, but on a different level a new kind of worry also enters your brain. Will endometriosis affect my ability to have children? Will endometriosis affect my fertility? You freak out. You become desperate. All you can focus on is your childlessness, or inability to have more children, or other people having children. You lose your ability to connect with others as you become increasingly single-mindedly focused on that one aspect of your existence. But the experience shouldn’t have to be that painful and traumatic. Whenever you can find hope and cling to it. Be kind to yourself.