How to deal with the loneliness of Endometriosis

This is a guest article I received with one endo warrior’s reflection of how they cope with the loneliness that is caused by endometriosis. She feels much of the problem is due to the fact that this disease focuses on ‘female organs’ which are usually a taboo subject to talk about in public.  This is her article ….

Why Endometriosis is often described as the loneliest condition to overcome.

‘When I first discovered Endometriosis, I felt very much misunderstood. My mother offered to make me tea to make the pain go away and would remark that I was possibly over reacting to the pain. It is one of those moments where you wish you could touch the person who doesn’t understand and allow them to feel the pain for just 5minutes.


I think the reason it is so lonely though is because the condition is somewhat private. We are talking about our “women’s bits”, those bits that we don’t talk to most people about and now we have to try and explain to our boss, work colleagues or others around us who don’t understand why we are in pain, that it is our uterus and it is swollen and bloated because of blood sticking and not coming out properly, we just don’t want to go there.


When someone says they have a stomach ulcer, it is easy. People sympathise and they can somehow relate. With Endometriosis they couldn’t possibly understand, unless they have personally experienced it. It is also incredibly hard to explain to a man....


The other massive loneliness factor is how it affects our relationships with men. First we have to explain the constantly changing emotions. Men struggle with emotions as it is and now they have a girl who cries for no reason and gets upset. It is easier once we know these relate back to Endometriosis and our hormone imbalance but they still happen and they can cause massive fights, distrust and friction.


To make matters worse, we then have to explain that we experience pain during sex. This varies and we might have days where we are totally fine but ultimately, we are not the “ready anytime women” which we feel we need to be to make our man happy. This can make many women feel inadequate and not able to make her man happy, once again causing friction in the relationship.


To top it all off, there is a chance of not being able to have children. For some women this is the last and final straw.


It is a long struggle for many women out there with Endometriosis and some women try for years without success. It becomes obsessive and debilitating and many women feel they have nothing, unless they are able to bring children into the world. This is just another very hard thing to share publicly and difficult for those around us to understand.


For me the simplest thing which I find lonely about the condition is that people just don’t understand how I feel.


When I explain the condition, it is hard to understand and then when I feel pain, they can’t see anything so they dismiss it either as me being “attention seeking” or that I am simply over reacting.


They say it is in my head and that I need to just toughen up or get over it. It is a lonely place as I just want them to feel it, sympathise with me, get it...... just get what I am really going through. There are days when I want to scream at them for questioning me or doubting me and it can make me quite angry. Naturally the pain gets much worse when I let these sort of feelings and thoughts dominate me.


Thing is, though there are all these things that can make us all feel so terribly alone, there is also one fantastic, amazing thing which can make us all feel like we are in this together and that there are many, many girls out there who share what you are going through. It is the internet. Without it we would all be in our own little homes, possibly crying to ourselves wondering if this pain would ever end or if there would ever be an easier way.’


This story really shows how important it is to stay in touch with other women in the endo community and the vital role that the internet has in providing support and advice networks so that women do not feel like they are struggling with this disease alone.

 To get support

To  get support from other endo warriors  join the private Facebook group here

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