When to tell your partner about your Endo.

[jdys]

I am a 24 yr old and have been diagnosed with Endometriosis for a year now. I am determined to not let it get in the way of all aspects of my life. I have still managed to continue successfully in my arts career, even with symptoms of fatigue, chronic pain and moments of anxiety. (I'm proud of myself and what I have achieved so far!

Even though I have wonderful supportive friends and family, the one issue I am now encountering and finding difficult, is when having met a new partner.

When I was diagnosed, I was with someone who wasn't supportive nor understood the condition, who made me feel like damaged goods. That ended, and it's taken me some time, but I am now happy again and have met someone special. We have had sex but the day after I am always in pain, plus I find it hard to reach orgasm (to their disappointment and mine). It's still early days as far as a long term relationship go, with us only being together a month, but the charade of 100% energy and health us wonder-women hold is hard to maintain and i know it is inevitable that soon I will need to explain a fatigue attack or pain.

I would appreciate any support you are able to give, or any experience you think I could take some strength from.

Hoping you are well,

jdys

[Crawfie]

Firstly well done for all you've achieved - this disease is so debilitating. I was finally diagnosed last year after suffering for 13 yrs and being fobbed off by Dr's.

There are a lot of endo groups on Facebook which offer support and advice for everyone - might be worth your partner having a look at those and of course there are lots of information for partners on the net.

Ive been with my partner for 7 yrs and have hidden as much of the pain and symptoms ive suffered with until recently when i collapsed at home and he had to take me to A & E which was when someone medical finally started listening to me.

Have had a lot of ups and downs with him as i dont think anyone will ever truly understand let alone males, even females think its just a painful period!!! If only that was all it was.

Good luck xx

[LeyaC]

I think you should explain from the get go, next time youre in pain say that you get this pain from time to time and its because you've got Endo. Explain briefly what it is and say that that is why you've had trouble with sex. He could either not understand at all and leave which would be unfortunate or he could be very supportive and want to come to all the appointments with you. Like Crawfie said there are pages he can look on to help him but if he doesn't care and doesn't want to be with you after finding out then just let him go. When you fins the right one, he'll stand by you no matter what. Its still very very early days yet as to whether he is the one but if he has any feelings for you then he should be fine with it. I mean you've had sex many times in only a month so there must be some feeling there, and hopefully more than lust!! Good luck to you and I hope he is supportive for you.

Leya x

[bcairns24]

Im in a similar situation in that I am 24 and suffering with Endo while trying to maintain a 'normal' life. I've bwwn with my partner for almost 5 years and I find the best thing is honesty in all areas not just endo. I would explain to him how endo makes you feel and make it really real for him. When I give my OH pamphlets or websites to read it just grosses him out a bit. So im just explain the symptoms as I feel them. If he can't be understanding and supportive then he's maybe not a good influence in your life anyway.

As far as sex goes its about redefinind what sex it. For us, having sex doesnt need to include intercourse each time as that can make me feel bad. The best thing you can do is buy a clitoral vibrator that way you can get your rocks off without having to do the deed and your OH wont feel like your missing out. Make sure to get him to use it on you though so he doesnt feel like he's being replaced!

Hope that makes sense! Good luck! xx

[Impatient]

I tell anyone and everyone - upfront. In part because it will quickly explain why i am a fussy eater these days, don't touch alcohol, get knackered and sore doing basic things and so on. Also it spreads awareness. It is so common everyone knows someone with endo even if they don't know they have endo, and maybe has a close relative with endo that has yet to be diagnosed.

Perhaps they have a mum or sister or girlfriend with endo - or one day become a father to a daughter with endo.

But having said that I am much older than many on this forum, and don't feel shy or coy about these things which 25 years ago would have been a whole different story. I do admit that. So speaking as the middle aged me I would advise to be upfront - explain you do have endo and how that affects you including sex pain.

It might be that you open up and discuss other ways to have fun without causing you pain. Sex should not be something you dread, or loathe to have because it gets increasingly painful, that is a sure fire way to kill a relationship if you are not communicating and are not willing to explore other ways to make each other feel loved and not hurt.

If your partner is aghast and runs a mile or is not willing to research the disease or be in any way sympathetic - now is the time to find out. And have a chat if he hangs around about what kind of support you need and expect at bad times and if he shows no signs of wanting to support you then kick him out the picture till he has grown up.

Not all men are man enough to cope with the news - and some never grow up. These are not potential lifetime partner material.