Endometriosis UK
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Loneliness.

This is a big step for me posting on any sort of website about my feelings and emotions. Being an introvert 99% of the time doesn’t help but I feel at such a loss.

It’s so weird how you can go your whole life surrounded by friends and family that you think care about you.

But when your having a rough time everyone scatters away with no show of care or consideration to how your feeling or what your going through.

I’m know I’m not the first person to feel this let alone post about this.

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Hey, everyone here is always looking out for each other as we all understand what we go through.

I feel lonely most days as I never see my best friend or boyfriend (long distance) and I can’t go out due to pain or have to plan around it which can be hard.

My parents never really show care when I’m in agony during my period so I’ve learned just to go through it alone and stuff.

If you ever need someone to talk to or a friend, just PM me 💕

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Thank you ❤️

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I feel like all the crap I’m going through in my health and around me is very difficult to just deal with.

I feel even my boyfriend doesn’t care most of the time and just expects me to get on with everything going on.

xxx

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Guys don’t understand that much tbh as they don’t go through it. My bf tries to cheer me up and understands my mood swings at certain times of the month.

Could try getting your bf to read about endo and that may help a bit.

I understand that’s it’s difficult to go through as I’ve had a rollercoaster of pain and emotions in the past few years but it’s gotten worse especially my period. Try to talk to someone you trust like a best friend or parent etc. Xx

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I’m so up and down lately with my moods and he knows it difficult but when I’m so low and upset crying he just doesn’t acknowledge me.

He knows so much about endometriosis and how bad it’s been for me, he’s been to all my appointments but I sometimes get the feeling he just doesn’t care. My family aren’t very understanding they’re quite ignorant to the illness but you can’t educate everyone 😳.

I feel like a right moaner lol but my friends don’t want to understand they’ve kind of distanced themselves whilst iv been in and out of hospital but iv come to terms with it’s life. If people care they would ask and want to be around but not everybody does.

xxx

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Yeah I know exactly how you feel. My parents don’t understand that much either plus I’m still waiting for a lap to diagnose endo.

My best friend doesn’t understand that I rarely feel like going out because I get tired and can’t drink because alcohol causes me severe heartburn and stuff.

Endo definitely shows who your real friends are and stuff xxx

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Aww I hope you get your appointment soon, I had my diagnostic lap in October 2017 to confirm the endometriosis. I’m waiting for my excision now hopefully it’s with the next two months🤞

It’s been tough since then trying to manage with various pain meds and all the side affects you get with them.

I know your feeling with friends its like your not going out over a silly reason but until your in that amount of pain you won’t understand. I found alcohol and caffeine made my symptoms worse but it can differ from person to person.

xxx

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Yeah the waiting list is 23 weeks here 🙄 and yeah the side effects of different hormone pills really got me so I stopped taking them last year as I would get so angry and then cry over an advert for pizza 😂😂

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Hi there, it is very lonely at times to think you have family and friends that you would be there for but don’t always get the same back. I hope you are feeling a little better after reading some of the posts on here and seeing how we all feel too sometimes. It’s not nice and anytime you just want to express your self we’re here xx💛 xx

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Thank you for reading and listening ❤️

I think that’s all we simply need is to be listened and talked to.

To be asked are we ok.

How’s our day going.

It’s easy to get so consumed in our lives and what we do but I think if I can make time for my friends and family so can others.

Endometriosis has really shown me who cares and has genuine concern for my wellbeing

xxx

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I feel for you all too, I've been suffering since dec 2015 when I was diagnosed with pelvic inflammatory disease. My life has been on hold since then, numerous infections, hospital admissions, antibiotics, ongoing heavy bleeding, 2 laps, living with chronic pelvic pain. My mum is the only one who truly understands what I've been through. She's been with me in days I can't stop crying, in pain , emotional. My Hubble is understanding but doesn't want to know about the icky stuff. He just wants to see me better. He said to me the other day just snap outta it. I gave him a mouthful for that as u can imagine. My so called best friend I don't see hardly ever, don't even get a text message asking how I'm doing. My true friend died a few years ago and I know if she was here today she would be asking and texting how I am. I've come to accept it now, the friends I have here don't Care to know how I am. They message photos of their kids to our group chat with all their achievements without a thought or a care about me who can't have a baby naturally. Maybe one day they may go through similar and look back thinking I should have been there more. life sucks sometimes but I feel God trying to teach me lessons that I'm yet to understand fully x

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It’s so hard isn’t it. You try your hardest to be up beat and put a mask on but sometimes I think not today. I need to be able to express how I feel to let it all out!

It’s awful with friends isn’t it. For me my two closest friends and in-laws and at such a difficult time they have just dropped me. It’s so upsetting as iv been there for the at the drop of a hat!

I always pray to myself and hope that tomorrow will be a better day. I’m so sorry to here about your troubles to conceive 😞 my problems with endometriosis started after my first child. He literally is everything to me 💙 iv given up on the hope of another child as it’s just too mentally and physically draining.

I hope we can all someday get understanding and compassion from the people we want it most from ❤️ it’s so hard living with a chronic illness that nobody can see but we feel in so many ways.

xxx

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I know that feeling too. My parents and siblings live 3 hours drive from me via the motorway but I do have my husband and our children. Unfortunately since my symptoms have progressively got worse I reduced my work hours & I'm spending more time at home alone. Friends have disappeared out of my life completely now, I'm never contacted or asked out by anyone and what really upset me was my oldest friend of 25 years hasn't contacted me since my last surgery 8 months ago,not even a text. My husband and kids are out all day and enjoy doing their own things during evening and weekends.

I feel lonely on days when I am really suffering pain as I think I get a little depressed but when I feel better/ in less pain I make sure I go out and do all the stuff I couldn't just to make my feel normal.

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I totally understand you. I work the hours I can but it take such a toll on my body physically.

I long for the days I could jump up and whip around the house and be out and about with my boyfriend and son like it was nothing.

I think iv come to terms with my anxiety and depression after a long time of denying it all. I look back at how endometriosis has changed me as a person. I appreciate the people who care and ask about how I’m feeling but sadly iv lost some very close friend and family.

xxx

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I have never felt so lonely in all my life.

My husband works shifts including weekends so when I’m home from work I’m literally home alone for whole days. I totally get what you’re all discussing.

I thought I had friends but like some of you they have all disappeared out of my life very quickly including 2 who were my bridesmaids only 2 years ago. One of these has been my friend since primary school (38 years ago!) and until 40 knew how hard it was to be childless. Luckily for her she became pregnant and their son is now just 2 - I never hear a peep in person but get inundated with fb posts and group chats about how bloody marvellous her life is and how wonderful it is to have a child blah blah blah - I can’t believe how quick people can forget about how they hurt being childless.

I’ve been waiting for a date for tube removal and endo excision since Feb. I haven’t seen/spoken to any friends about this as haven’t seen anyone. I now have my date for the end of June and won’t be telling them I’ll just get on with it myself as hard as it will be. I guess I’m defined to remain lonely but it sucks

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It’s like loneliness just sweeps into emptiness. You don’t what to think or do. It’s made me different around people after being so alone mentally I’m always on edge. My social anxiety can be so heightened at the thought of being in crowds for so long I shut down and almost make myself invisible.

My closest friends and family know the struggle of me trying to have another child and the endless complications but don’t care anymore. Now at 28 I’m on the medical menopause and my consultant thinks this is for the long haul.

I’m still waiting for my excision date I’m hoping it’s in July. But I think it’s just going to be pushed back further. It’s comforting to know we’re not alone. Eventually people will open their eyes and realise the amount of pain we suffer mentally and physically. 💛

xxx

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I truly believe we should all stick together and be there for one another. Although my family have close friends are grey but siblings are not talking not just because of this but because I ended my marriage in 2011 since then my sisters have not spoken to me but it’s a long story, however I’m very lucky to have support from parents , uncles and aunts and am truest grateful. I have to have an hysterectomy and agave had a hormone injection to stop my cycle which it has . Anyway just want to say I hope tomorrow is a better day for us all xx💛💛

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100% agree ❤️ It’s amazing to find some comfort in other women suffering from something so awful but we can still find a sense of hope within each other.

My close friends that are my in-laws turned away from me form other reasons mainly because I cou don’t cope with the pain of my endometriosis and mentally shut down. Having a family member terminally ill aswell and they didn’t care to think how I was feeling. ❤️

xxx

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I feel like I wrote this.

Honestly!

Had my lap only 10 days ago.. still in recovery mode, still have another 2 weeks off work. Still not feeling good and taking things easy.. where are all my friends now? Hardly talking to me or asking how am I.. it’s pretty bad.

Out of sight out of mind.

I know how you feel with long distance me and my husband did long distance from hull to London for 4 years. I feel you.

You aren’t alone. These threads are so understanding x

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It’s so sad to think that the people we care for and will be there for at the drop of bat forget us.

Today I actually spoke to my doctor about how I was feeling. Iv never really opened up and always skirted around my issues. I feel better but struggle to see light at the end of the tunnel.

I hope your feeling better after your lap and resting that’s the best thing you can do. Also as much as we say to each other don’t stress we still do lol. Stress has contributed so much to how I feel physically and mentally... it’s draining

It’s amazing to see and read women lifting each other up when society shows us comparing and competing with each other.❤️

xxx

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Thank you so much

It’s bad but even some of my good friends keep going oh so your back to normal now or ignoring me completely because I’m not been fun and able to do things.

You learn a lot about people and apart from family most friends are fickle

It happens when people get pregnant and have a baby too apparently a lot of people drop off the surface off the earth because you have another priority

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It’s like the universe has shifted when you have a child and you can’t maintain a social life or friendship 😳. I find it so irritating!

We all have each other and I feel that’s all that matters to me ❤️ Women that can understand the struggle of a chronic illness but still be positive and a good person to those around them.

xxx

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I feel like any chronic illnesses is similar in a way, a life change a life swap and a priority swap and people dwindle away because it’s easyier and because you become the one with the problem

Think god for this site!

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I really am sorry, how have you been today xx

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Much better today thank you 😊💛

Spending quality time with the people that appreciate you can always lift you up.

How are you today?

xxx

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That’s great, sorry it’s late been a tad busy helping and spending time with loved ones as it would have been my nana birthday last week. Anyway how are you on this fab bank holiday, Xxx

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