Need help: How do people cope with having... - Endometriosis UK

Endometriosis UK
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Lost-sole
Lost-sole

How do people cope with having endometriosis i was diagnosed at 18 10 years later still feel very lost and lonely I experience mood changes and low self esteem because of it I have been single a 5 years as I don't know how to explain about the problems it gives me feel worthless and unattractive

22 Replies
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Firstly can I say that I am sure you are not unattractive or worthless, if you believe you are then others will treat you like that. You are a brave woman battling this awful disease. I don’t know what stage you are at with having any treatment or medication?

I find this site really helpful, lots of lovely ladies who can give you advice. I came on here as I didn’t want to keep talking to my friends and family, they don’t have gynae issues so don’t fully understand.

I know there is an Endometriosis phone line so you can call and discuss things with them, I have personally not contacted them but I think it’s about having supportive people around you.

Please don’t feel like you are alone, if you ever need to chat them PM me or post on here x

How do you stay so posative? X

Hey I don’t know if am that positive, I feel better some days then the next day come crashing down. Emotions can be all over the place and can cry at the slightest thing.

How are you feeling today?

x

Been a long hard day at work today painfully day was glad to get a bath but i spoke a little to a lady I was working with coz she asked me what was rong with me these days but along said a little but it's a start right x

Allthatglitters is right! I agree.. focus on you first before you focus on anyone else. I feel like a hormonal wreck since my diagnosis and am sick of feeling like this. I am trying things like excercise, yoga etc and talking more about it. I keep it to myself alot but I find it helps to share when I actually do. I find this community helps, so even if you don’t want to speak to anyone else, please always share with us.

Lost-sole
Lost-sole in reply to 079me

I go to gym 4/5 times a week unless taken to my bed with a hot water bottle manage to go with pain relief and wat really healthy coz it is supposed to help but it's not if things are getting worse don't like talking about it coz friends and family don't really understand

079me
079me in reply to Lost-sole

Wow, your amazing going to the gym so much! You put me to shame!! I felt a bit like that, like they won’t understand, and with some, I was pleasantly surprised! Some were a dissapointment though! Do you know what triggers the moods etc? I am wondering if mine is my pill but I think its just my frustration mostly at the condition.

Lost-sole
Lost-sole in reply to 079me

I blame myself for having the condition worry that it is getting worse and will continue feel lonely and don't like thr fact that actually it effects others aswell not just me so feel I have to protect them and myself that I can't be told am not intrested coz I want kids one day

079me
079me in reply to Lost-sole

Is it definite that you will not be able to conceive? I am sorry to ask but I really hate the fact that you feel this way and there may be options. please do not blame yourself for your condition! If you had a friend who had our condition and you didn’t, you wouldn’t think they brought it on themselves and it is their fault would you?! Don’t be so hard on yourself!!

Lost-sole
Lost-sole in reply to 079me

No one.can tell you that is want happen but it's had 10 years to get worse blocked it out for many years keeped myself going caring for people at work my sisters kids my grandma I would give them hope feels like I have every symptom there is for the condition I just think leave me alone let my be now

Lost-sole
Lost-sole in reply to Lost-sole

I was 18 when I was diagnosed you would think I would have got my head around it by now wouldn't you

I don't really know we're I am ever I had a scan on my kidneys coz they thought it was kidneys stones turns out it is the endometriosis getting worse as the gp said and adviced to go back in pain continued I worry am 28 single and would love to be mum but no idr what to do if getting worse

I am 35 without kids but i do have a partner, but like you, I worry it will not be possible. My sister keeps suggesting freezing my eggs but with all the other procedures and things I have had and my mental state, let alone the feeling of not being able to cope if I did have a baby, I am hesitant.. some days its hard enough to take care if myself when I am having a bad spell.. I try to just take a day at a time because trying to always face that what ifs was like trying to climb an impossible mountain.. I hope this helps.. just know you are not alone.. x

Lost-sole
Lost-sole in reply to 079me

It costs so much to freez eggs I looked ino it don't have that kind of money I did meet sameone a year back but as soon as he found out about the condition he lost intrest in me then that question always comes up do you want kids one day I never know what to say x

079me
079me in reply to Lost-sole

I am so sorry to hear that you had that experience. Don’t give up. Anything worth having is never easy. Would IVF be an option? I believe you get 3 attempts on the nhs before you are 40? Am not 100% sure though, and didn’t know if they would do egg freezing.. I admit am too scared yet to do all the investigating incase its not what I want to hear. Stay strong! Anybody would be lucky to have you part of their life! Don’t underestimate your worth!

This sounds exactly like me, it’s hard enough to care for myself at times let alone another human x

My big worry is ino been on my own am not in a.position to have kids am really old fashioned that way and they wouldn't have to be right person and a few years together but I don't seem to want to let people in and I have low self esteem anyway feel ugly and depression takes over me x

Lost-sole sorry to hear you feel like this. Sounds like you have built a wall up around you and don’t want to let people in. I was similar when I was going through Recent Endo diagnosis and operation (3 weeks ago). I wanted to keep it all to myself and not let those closest to me know or understand. I started to feel isolated and lonely and looking back I feel

I brought that on myself by creating the barriers and not allowing others in. As soon as I did start to open up and talk, it changed my mind set overnight and it really felt I had let people in, they felt better that I had discussed things with them and let them know how I was feeling. Yes I broke down with my Mum and yes I cried like a little girl but she was there to hug me, pick me up and make me feel like I wasn’t alone, I had so much positive things in my life and I needed to focus on them!

Sounds like your already committed to the gym and that’s great. This might sound silly but have you got a pet or could you look at getting one? A cat, a dog? A dog will get you out and about, chatting to other dog owners and the love you will get from a pet will be endless!

Your 28, your still young to find that one so don’t stress!! There are so many fertility treatments available for you to try when you are in that position. First you need to build yourself up, look at yourself and realise all the positives you have. You won’t always feel like this, your so strong for copying on your own but it’s sounds like time you need to let others in.

Once you do feel a bit stronger, you may just find that you find someone. Good luck to you x

I work 12 hour shifts so a pet isn really samething I can do right now but I understand what you are saying think I just made a choice to forget about it over the years but because am not in top or pain and finding out it is what makes my back and side hurt so much made it hit home over past week x

RicEndoUK
RicEndoUKAdministrator

Hi Lost-sole,

I'm really sorry to hear you are feeling so low. You are definitely not alone in feeling this way.

AllthatGlitters rightly mentioned that Endometriosis UK have a helpline if you feel you need to talk to someone who understands. You can find details here:

endometriosis-uk.org/helpline

The charity also has a number of support groups where you can go and meet like-minded people. You can see if there is one near you here:

endometriosis-uk.org/find-a...

It is sometimes very hard to get yourself out of low mood/depression so if it gets too much, please do see your GP who can refer you to other services which may be able to help you come to terms with your feelings about endometriosis and yourself. You can also refer yourself to psychological therapies so you don't need to go via your GP:

beta.nhs.uk/find-a-psycholo...

I hope this helps and please do let us know how you get on.

RicEndoUK

Volunteer Moderator

I work in mental health so I am aware of what can be done it just easy when saying it to others not so much your self

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