Adenomyosis · Endometriosis

The ‘F’ Word

This article comes with a trigger warning. 

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Have you ever been asked how many months pregnant you are or when you are due when in fact you’re just bloated from a big meal or have put on weight?  If you have, do you remember how it feels?  Did you find it was a funny coincidence or did you feel embarrassed and angry?

Now multiple that feeling by about one hundred when you think about how those who are facing fertility problems are asked.

I’m going to talk about fertility, the ‘F’ word that brings unseen amounts of worry, stress and heartbreak for a lot of people.  It isn’t a subject we are necessarily comfortable talking about, partly because it’s such a sore topic, but also because not a lot of people understand.  There is also the minor problem that we may be looked upon as being jealous if we are talking about it with people who already have children.

With patients who have Endometriosis, fertility problems can arise due to a number of things;

  1. the location of Endometriosis growths can block structures such as fallopian tubes, meaning eggs cannot travel
  2. Endometriosis adhesions and scar tissue can pull structures and distort them, sometimes sticking them to other organs
  3. the inflammation associated with Endometriosis can have an effect on egg quality and also the environment for fertilisation/conception

Now, it goes without saying that infertility is not guaranteed alongside a diagnosis of Endometriosis, and plenty of patients with varying stages of the disease get pregnant with no problems.  It is also worth remembering that people in the normal population without Endometriosis or any other chronic health conditions can have problems getting pregnant too.  Sometimes there is no known reason why infertility is occurring.

Since I write about Adenomyosis as well, I think it is important to note that similar to Endometriosis, fertility problems are not guaranteed with this disease.  With Adenomyosis, fertility problems are linked to the increased risk of miscarriage and the fact that the womb lining has changed from uterine growths.

Perhaps one of the saddest things with Endometriosis and Adenomyosis is that one of the symptoms is a swollen belly – typically termed “Endo Belly”.  This presents as a very swollen, tender and painful stomach that is a result of certain triggers.  It often causes us to look anywhere from a few weeks to a few months pregnant, and it is hard to hide.   It is ironic and sad because it is like being something you may struggle to actually achieve in real life – imagine how hard it must feel to look so pregnant yet never be able to experience the real thing? .

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And unfortunately, this “Endo Belly” may often leads to people in the “normal world” mistaking us of actually being pregnant, leading to embarrassment and emotional pain when we are forced to face the truth.  I’ve known fellow Endometriosis sufferers to actually go along with the thought of being pregnant, as its too much effort or too hard to explain the truth to someone who won’t really understand.

Whilst I have never been in this situation (which I am thankful for, as I really don’t know how I would react), I have changed the size of my work uniform to a bigger size, as I was getting sideways glances at the size of my stomach.  I knew exactly what the consultants and patients were thinking, and I was not about to give them a chance to actually ask.  I also spend a lot more time in loose, comfortable clothing and I find myself more and more choosing outfits that will hid a swollen stomach.

Learning that you have fertility problems or going through the rollercoaster of IVF is incredibly hard – it can be traumatic and frightening and an unenjoyable process.  Whilst it is inevitably hard to process, there are certain situations that might become difficult or we have a hard time facing.  For example, we may find it extra tough when our friends or family members start to become pregnant or already have babies of their own – we may feel jealous, avoid seeing them or never be able to express our true joy and happiness for them because of how we are feeling.  Personally, I find this tough but more so when the pregnancy “just happens” and the woman “didn’t really want to have children”.  This may be judgmental of me, but Endo Bunny is a place where we can be honest and comfortable being so.  In these circumstances, I just wish people would appreciate it more – they are so lucky to have a body that does this amazing thing, where other people are not.

Another situation that we may find hard is when less-educated GPS, consultants or other healthcare professional force the idea of becoming pregnant, telling us that “we don’t have long” or should “hurry up and have a baby soon”.  I have been in this situation and whilst to some degree it is true for me (in the sense that the longer I wait the hard it may be), I only want to have a baby when it is right to do so.  It doesn’t even have to be a healthcare professional who suggests this – I’ve had friends and colleagues in the past think they know my disease better than me and tell me “having a baby will solve all your problems”.  You know that whole “my friends sisters cousin found this helpful…” etc?  It’s just like that, but only you have to sit there and internally roll your eyes whilst you can’t believe the rubbish they are coming out with.

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There is also the fact that a lot of healthcare professionals – even gynaecologists – believe becoming pregnant will cure both Endometriosis and Adenomyosis.  Even though becoming pregnant may improve symptoms for some patients, it definitely does not do the same for everyone – a large population of us will find pregnancy painful, and I’ve know ladies who have.

So how should we cope/handle/deal (whichever fits best for you) with fertility, when we know there is a chance it could be a problem?

Well, firstly it is best to talk to your Endometriosis or Adenomyosis specialist, as they have seen inside you and will have a better idea.  They might be able to tell you of methods to help “preserve” your fertility, such as taking contraceptives or hormones to reduce Endometriosis growths.  They might be able to flush blocked tubes or remove a problematic spot of disease.

Secondly,  surround yourself with the best support system you can – having people to talk to about your worries or problems is super important.  Even if you don’t know if you have any problems falling pregnant, it’s good to be able to talk about what is bothering you and be reassured.  If you are going through IVF or facing treatment, having them around you will do you the world of good.

And thirdly, open up (if you are comfortable) to others in the Endo or Adeno community who are experiencing similar problems.  I have found a lot of support and love from the online community, as being able to ask for peoples experiences of certain medications or consultants invaluable.

With regards IVF, I plan on writing a separate article on that, as it is a complicated and multi-factoral process.  But, if you know you may need a hand getting pregnant, your GP or consultant will be the first person to turn to as they will be able to refer you to the right people.  Currently in the UK, most NHS fertility services will only accept patients who have been trying unsuccessfully for around 2 years.  That is a long time, right?  However, my GP advised me that patients with pre-existing conditions that are linked to fertility problems have a shorter wait – I have been advised 6 – 12 months, but please check with your own GP as some services will differ dependent on location.

The other thing to mention, that makes me really cross, is that fertility services on the NHS are being less and less funded, meaning that patients are having less chances to have treatment for free or some even have no chance at all.  Where I used to live, NHS fertility services have been cut by a third.

If you are thinking of going to a private fertility clinic, then make sure you do your research and seek recommendations from others – I think there is nothing more valuable than a personal review or recommendation.

I don’t want this article to be negative, so rest assured I have come across many in the Endo and Adeno community who have had lots of babies with no problems – even some who gave up on IVF only to fall pregnant out of the blue (can you imagine how much of an amazing surprise that must have been?).  Some ladies have had IVF for the first child only to fall pregnant naturally the second (I remember once being told that sometimes your body needs to be shown what to do, and then it’ll learn to do it itself – I love that saying!).

It is important to stay positive as best you can, and I send my love to anyone who may be feeling similar to what I’ve wrote about.

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