How to explain it to somebody....? - Endometriosis UK

Endometriosis UK

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How to explain it to somebody....?

Laurajaey profile image
9 Replies

Hi guys,

My boyfriend is starting to get 'frustrated' (is one word to explain it)...

He has given all the usual motivational speaches about how I need to get past the pain etc.. and now we're at the point where if I explain how I'm feeling he literally says 'I've said all I can say.. there's no point repeating myself'. Now, this isn't an opportunity for me to slag him off.. but what on earth do I say when he wants to mess about and I'm crippled to the point I'm struggling to move?

I don't want to keep saying oh I can't do this or that I'm in pain?

How do I make him understand that it's not just in my head.

I had awful hip pains last night, and today I've woken up with bruising All the way up my sides, to my ribs (not visible). I just don't want to keep saying the same thing and him get annoyed with me?

There is now tension in the house and I'm just overly exhausted with my body and thoughts.

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Laurajaey profile image
Laurajaey
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9 Replies
kellymarie26 profile image
kellymarie26

It's really hard and lonely.

Like any illness if your the one going through it nobody else can quite understand what your going through.

Unfortunately with it being a chronic condition it becomes part of your every day life and your boyfriend needs to understand and support you through all of this.

It's hard to explain to someone what and how endometriosis effects you.

I'm married and after having my laparoscopy it registered with my husband a bit more to actually how dibilitating it is. In reality he still doesn't really understand and will never know the pain it causes me.

Perhaps it would help your boyfriend understand a bit more if he researched it online xxx

Laurajaey profile image
Laurajaey in reply tokellymarie26

Thank you, Kelly.

He hasn't actually seen me go through the surgery, so I suppose he just sees it as me moaning a lot. Which I try not to do too often. We've only been together since December 31st, and my lap was in September, so I was fully healed etc.

I think research would be a good idea, although he did say that his ex had it. I may investigate and find out what he actually does understand about it.

I hope this approach sheds some light on the situation.

Thank you for the advise xxx

Conneryh profile image
Conneryh in reply toLaurajaey

Hi Laurajaey,

I had a similar problem, I agree with Kelly that it is hard to communicate an illness especially when the other person not only cannot walk a mile in another's shoes but for a man it must be hard because they don't even have the same equipment. It doesn't help the medical community by and large isn't even recognizing our situation.

It's hard to explain to someone what and how endometriosis effects you.

Like Kelly after having a lap and diathermy it registered with my bf. But all the other symptoms eased for a while and in less then 2 years they are inviting me back for more! I invited my bf to research online and attend doctors appointments with me, I think that helped a lot. He doesn't really get sick, so it is hard for him to understand.

I have tried to stay positive (which is v hard) but I keep trying new things, and I hope I can reduce the symptoms. But it was hard when I spoke to a specialist the other day and she said I can't cure it, and I will have to make life adjustments. However, after hearing that I realized that we have our crosses to bear, and that if he loves me then he will understand - which he is doing.

Kelly said that "Unfortunately with it being a chronic condition it becomes part of your every day life and your boyfriend needs to understand and support you through all of this.

" I agree, its wearing when everything is ok!

You mentioned that your bf's ex had endo, and it could be that instead of coming into your situation fresh. The previous conversation/ relationship problems maybe playing out in his head? Perhaps if he could distinguish the 2 relationships, without the history then it might change?

Anyway hope the above is of help xx

GrittyReads profile image
GrittyReads

Maybe get him to have a look at the 'Endo UK' website, with some of the explanations. Also, there are some other online communities - as well as some on here - where there are links to some pretty graphic talks and films. Recently I saw a clip of Susan Sarandon, Rhianna and other women talking about their years of pain and mis-diagnosis. Also, somewhere, on here - there is pretty horrific film, taken inside the abdominal cavity as top notch endo surgeons examine all the areas around the uterus, fallopian tubes, bowel, etc. and point out all the endo that has to be removed. It's pretty extreme if he is tickle-stomached ... but perhaps loads of men just do need to face up to how tough things can be for women.

Hopefully someone has kept some of these links and can send them to you, or Phone/email 'Endo UK' and they may be able to give you the links.

Caveo profile image
Caveo

I'm in exactly the same situation as you right now!!! I've been told that on top of working full time that 'I am' responsible for the house i.e. cleaning, washing, ironing, shopping etc etc. I've now got CFS (chronic fatigue syndrome) on top of it all and I actually feel like he resents me for now giving him a 'normal' relationship!! I feel very alone and inadequate right now xx

humanbean profile image
humanbean in reply toCaveo

What is your other half responsible for? Anything at all?

ScoobyG profile image
ScoobyG

Hi,

Sorry to hear that you are not always getting the support and understanding that you need. I was given the following link to a film from my endo specialist nurse. I found it very moving at the start (made me cry but was week after lap!). Perhaps watch it first and if you think it may help then watch it together with their other half

Login to Gumroad.com

Username: endowhat@gmail.com

Password: endowhat?

Hope it helps

Private70 profile image
Private70 in reply toScoobyG

I tried nothing related to endo

ScoobyG profile image
ScoobyG in reply toPrivate70

Go onto the Gumroad.com site. Click on top left corner and go to log in. Log in with username endowhat@gmail.com password endowhat? And it takes you straight to the documentary film

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