How do you talk to your partner about how... - Endometriosis UK

Endometriosis UK

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How do you talk to your partner about how you feel/what's going on?

shazlovesevo profile image
15 Replies

Hey ladies,

Hope you're all well!

I've been with my Fiancé for 6 & a half years. I met him when I was 14 years old and he was 16. When we met I had a disability and was on crutches due to having Perthes Disease. I had a hip replacement in 2015 aged 19 so my hip is much better and I'm no longer on crutches. I was so shocked that this handsome young man took me for who I was. We instantly clicked! We are best friends, we get on so well, we love the same things, we are still so in love!

The only thing I struggle with is talking to him about how I feel.

He's only been to one of my endometriosis appointments. He didn't come to my last one on Tuesday last week where they did an internal examination, they saw how much pain I was in and said they are concerned about the pain I'm in. I had excision surgery for stage 3 endometriosis in may and my symptoms have never gone away, I also had mirena fitted during surgery which hasn't really helped apart from stopping my periods. Pain is worse than before surgery and still have all the symptoms I had before surgery. Anyway the hospital want to know why I'm in so much pain and are referring me for an MRI scan. They also started me on prostap injections for 6 months. My Fiancé wasn't there as he was at work but I find it difficult to talk to him about how I feel. I'm not sure if he just doesn't like to think about how this condition is affecting me. I'm due to start an apprenticeship soon, waiting for start date but I just feel so Ill! In my last job I was only doing office work and even that was making me flare up more.

I just don't know where my life is going at the moment.

My partner is amazing and tries his best to help me, I just struggle to talk to him about things. We live at my parents house, he works all week and stays his parents on a Friday, we go there for tea on a Saturday night then he works on Sunday so he's not with me alot of the time to see how bad things are for me. He's very close to his family so I think it's nice for him to stay there. He doesn't go out and drink or anything, he's a home bird lol. He's a really nice person, he's got a good job with a great salary and I just feel like I'm holding him back with me been ill and not working and he wants us to move into our own place but wants me to be working and pass my driving test before we move out. I don't want him paying for everything all the time. I feel so guilty. I'm not on any income whatsoever at the moment.

The main purpose of this post was to see how you all talk to your partners about how you feel and how do you get them to understand you?

Many thanks!xxx

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15 Replies
Louoakley profile image
Louoakley

Awe Hun you still aren't well are you? Are you still at north staffs? Xx

shazlovesevo profile image
shazlovesevo in reply to Louoakley

Hey hun,

Nope I feel like crap😐 Yeah I'm still at North Staffs :)

How are you feeling? Not spoken for a while xxx

JeanOsborne profile image
JeanOsborne

Oh Hun I feel for you as I'm in the same boat. I have trouble talking to my husband too even though he's been amazing. I tend to keep it to my self so as not to stress him out any more than he already is, but I am trying to open up more. Like if I'm in pain I don't try and hide it. I think we just need to try and be more open and honest with them.

Take it easy sweetheart.

shazlovesevo profile image
shazlovesevo in reply to JeanOsborne

Oh Jean I'm so sorry to hear you're in the same boat 🙁

I'm glad you've got a great husband there for you! I think sometimes we just need a cuddle and a little support and understanding. How are things with you? Hope you're well xxx

JeanOsborne profile image
JeanOsborne in reply to shazlovesevo

Hi Hun, not too great. Bowel has got a lot worse recently. GP finally agreed to refer me for a second opinion, this was in October. When I hadn't heard anything by xmas found out he had deleted it. Said he would do another one and send a copy of it to me also. Went to see him about something else and he printed off a copy for me. Still haven't recieved one in post so I suspect he hasn't sent it. The referral letter put me in a really bad light so wrote a letter myself. I've also put in a complaint with practice manager.

Just feel like I'm banging my head against a brick wall.

Good news is I'm having a cystoscopy tomorrow to find cause of bladder pain.

You're right sometimes all we need is a cuddle.

Stay strong Hun. Sending big hugs.

shazlovesevo profile image
shazlovesevo in reply to JeanOsborne

Oh Jean!🙁

I am so sorry you're having a rough time & been messed about! It's not nice at all! Well done you for putting in a complaint, some doctors are a bloody waste of time aren't they!

Glad to hear you're getting your bladder pain investigated, Im suffering with bladder pain at the moment, it's painful when I wake up in the morning if I don't go straight to the toilet and also hurts my stomach when I wee, I had my urine checked with specialist last week and all clear, it's started since I had my prostap injection so maybe something to do with that?

Good luck for tomorrow let me know how you get on and hope the doctors buck up soon and help you!

Xxx

JeanOsborne profile image
JeanOsborne in reply to shazlovesevo

Hi Shaz thought I'd let you know I've had to cancel my cystoscopy as I've come down with a cold. Just my luck. Lol.

shazlovesevo profile image
shazlovesevo in reply to JeanOsborne

Oh no! There's always something isn't there!😧

I Hooe you feel better soon hun! Big Hugs!🤗xxx

I don't have a significant other but I've had to explain to many friends, I think the most important part is being honest.

Say that you want to talk about your condition, that you are unable to do certain things, are in pain and say some days you just need support and understanding.

Could you write him a letter, then have him read it then discuss after?

If it's about sec I would discuss it with him, say that you want to talk about sex, there's different positions and even things you can use from preventing him from going deep which can aggravate the pain.

shazlovesevo profile image
shazlovesevo in reply to

Hey hun,

Thank you so much for your reply! I could try the letter to him! That's a great idea thank you! He's very understanding with the sex pain, he's brilliant and knows what hurts me and what doesnt. Thank you for the ideas hun.

How are your friends and family with understanding?xxx

in reply to shazlovesevo

My friends are great, I've lost a few on the way but the real ones have stuck with me and are always worried about how I'm feeling. My school prinicipal just made me switch to another school with a better self paced program so I won't be seeing them much though, hopefully I'll make new ones:)

My mom understands but my grandmother doesn't but she's also very old fashioned so explaining to her is tough.

shazlovesevo profile image
shazlovesevo in reply to

You always find out who you're true friends are when you're going through a tough time!🤔 I'm so glad you've got some great friends there for you hun, & that's great that they have moved you to a different school, hopefully you will feel more at ease there!

I'm glad your mum understands & well some people are just set in their ways arent they!😅xxx

Soph1990 profile image
Soph1990

Hey, my name's sophie, I'm new on here so not very elequent with my replies yet so bare with me haha

I'm very fortunate in that me and my fiance talk about my endo a lot and as he puts it we are fighting this disease together.

My family, fiance and I had never heard of endo until I was diagnosed at 20 and over the last 6 years we have all been educating ourselves about it since. I highly recommend you talk to him about reading, blogs and websites are helpful but a book called The Doctor Will See You Now is a must read for anyone effected by endo, it explains what endo is and how it effects us in a brilliant way, my mum read it in no time and said it was amazing, I am still reading it as I end up in tears everytime I open it.

Me and my fiance are currently saving for a house and I physically can't work full time so don't bring in as much money as him which he never makes me feel bad about but effects me now and then which I talk to him about and am constantly appolagising for even though he says there's no need.

It's hard for the people we love to see us in pain but he needs to understand the illness you have in order to be there fighting it with you. Honesty really is the best policy.

I hope anything I have said helps in some way

Soph xx

in reply to Soph1990

I love the doctor will see you now!!!

shazlovesevo profile image
shazlovesevo in reply to Soph1990

Hi Sophie!

Thank you so much for your reply!

I am so glad to hear that you have an amazing supportive family & partner there for you! That is always a great thing to hear!❤

I have tried to explain things to him, he's very set in his ways, he's like his mum in a way, he's career driven and just wants me to work so we can get somewhere in life. He does understand what I have but pretty much tries to blank out what I'm going through. Gosh I make him sounds horrible!😂

It's so hard to explain!

Like say if I'm having a bad day and don't feel too good, or I say I'm tired, he will say yeah you've had a busy day doing nothing but he smiles when he says it. He just likes to wind me up! Haha, like I'd just like to sit and have a conversation with him about it and him ask some questions and be interested instead of just nodding his head! I think it's probably just men to be honest!😂😂

Your partner sounds like a keeper to me! He sounds very supportive of you! I know deep down my Fiancé knows what I'm fighting and what I'm going through but I think he just prefers to havw a laugh about things, he's very positive!

I hope everything goes well with thinking the saving sweetie & I can't afford that book at the moment but will defo invest in it when I have some income!

Again, thank you millions for the reply!xxx

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