Endo repelling friends..: Hello ladies, I’m... - Endometriosis UK

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Endo repelling friends..

EndoWarrior21 profile image
13 Replies

Hello ladies,

I’m new to health unlocked but thought I’d try getting support another way because at the moment I’m feeling very secluded from everyone around me. I had surgery a year ago in June and found out last week I need surgery again in the next few weeks to remove adhesions sticking my ovaries to my pelvis.

Everyone keeps saying “well you’ve done it once so it should be easier the second time” no one seems to understand how horrible this condition truly is and how lonely I feel. I have no friends because I get such bad anxiety when making plans because I worry I’ll have a flair up, that I never see anyone. All I want is a group or at least one girl friend that I can share things with and actually be honest about how shit I feel sometimes ☹️ Sorry for the depressing post I just don’t know who to talk to. I’m only 21 and feel like I should be enjoying my life not sitting around feeling this sad..

Thanks in advance for any reply’s x

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EndoWarrior21 profile image
EndoWarrior21
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13 Replies
SeenGreen profile image
SeenGreen

I feel the same, do have friends but they're all away at uni, don't know what else to say but didn't want to read and run :) giving you a big fat virtual hug but sorry to say can't give any tips in the friend making department as its something I struggle with too. You can always be honest on here.. X x

Stk19 profile image
Stk19

I'm sorry for how you're feeling :( I never in a million years thought an online group would make me feel any different but it really does help, as we are all unfortunately fighting the beast that is endometriosis. I totally understand how you feel, unless somebody has it too, people don't truly understand. Don't be sorry for your post, I can't speak for everybody but I know that I've been in your exact position, I fully understand how you're feeling. Keep fighting girl! You can always message me if you need! Have a read through other posts, you might find some helpful tips or just a bit of relief that you aren't the only one ♥

Malahide36 profile image
Malahide36

Hi ,

It is a horrible condition and I think one of the loneliest illness around as no one wants to hear about period related pains or bowel symptoms.

However, I find this site a great support and I also thought I would never get support from online.

It is good to know not alone in the suffering.

My only advice is also to get a really good GP who will look after you well.

My Gp has been invaluable .

My heart goes out to you . I hope you get relief from surgery and start to enjoy your life again.

Be good to yourself meantime

.😀😀

Lucie2015 profile image
Lucie2015

Sorry that you are feeling like this. I really don’t think people understand how awful the condition is unless they have it. It also seems that people just think it’s the ‘norm’ when you are having a bad day due to being in so much pain and feeling rubbish. One of my family members is like ‘oh, just the usual then’ if I explain I’m not feeling great. I had an op last May and I’ve got another one in 3 weeks. I am dreading it as well as I hate hospitals and procedures etc. I hope everything goes well for you and time goes quickly. X x

EndoWarrior21 profile image
EndoWarrior21 in reply toLucie2015

Thank you all for your lovely, kind words of support. It is so nice to be reminded by people suffering the same problems, that how I feel isn’t unusual. Sending love to you all! Xx

Peren profile image
Peren

I’m sorry you’re feeling low. People don’t understand endo and your friends probably don’t mean to make you feel like they are. I’m sure they have your best intentions at heart.

Is there an endo support group in your local area so you can get face time with people in the same position as you?x

EndoWarrior21 profile image
EndoWarrior21 in reply toPeren

Thank you all for your lovely, kind words of support. It is so nice to be reminded by people suffering the same problems, that how I feel isn’t unusual. Sending love to you all! Xx

Confused_con profile image
Confused_con

You are never alone, ever. We are all fighting this awful fight against endo.

If you ever want to talk, shout, cry, or anything you can message me or anyone on this group, we are all here for one another. Sisters together fighting the endo fight xxx <3

EndoWarrior21 profile image
EndoWarrior21 in reply toConfused_con

Thank you all for your lovely, kind words of support. It is so nice to be reminded by people suffering the same problems, that how I feel isn’t unusual. Sending love to you all! Xx

Chrysta123 profile image
Chrysta123

Just as the others have said this is actually a really good support network, I was in the same position as you in that no one understood what I was actually going through and just kept saying ‘it can’t be that bad’ or ‘take some paracetamol’ including near enough every gp I saw!

While it is rubbish any of us are in this position and each of us are probably going through slightly different things posting on here and getting the support of these lovely ladies in the same boat has really helped me so don’t be sorry about the post, we all need someone to talk to!

I hope your second op goes well x

EndoWarrior21 profile image
EndoWarrior21 in reply toChrysta123

Thank you all for your lovely, kind words of support. It is so nice to be reminded by people suffering the same problems, that how I feel isn’t unusual. Sending love to you all! Xx

Brambledoggy profile image
Brambledoggy

Can I recommend a book to you? It’s on Amazon. Heal Endometriosis naturally by Wendy K Laidlaw. It’s a big help. Even if you do nothing, you’ll know what you “should” be doing. Another is The Doctor will see you Now by Tamer Seckin. They are both great must-reads for us endo sufferers. If you’re only 21 (I’m 48 and still suffer hugely) you’ll need to be 100% informed about how to help yourself going forward because the medical profession (IMO) are failing us on a global scale. Also I urge anyone reading this post to look at a website drseckin.com. Based in NYC I realise, I’m in the UK, but you’ll get one of the best in depth reads about your condition and so will be able to make informed decisions. Last time I was in America I was delighted to see a national TV advertising campaign spreading endometriosis symptom awareness. We need it here too. There’s WAY too much guesswork going on with this condition. I don’t believe laser surgery helps at all, is merely a temporary fix and the way forward is DEEP EXCISION SURGERY. Think of endo like a dandelion that needs weeding, if you only remove the flower, the root will continue to grow and spread. I understand your isolation totally. It’s horrible and endometriosis has an ugly face!! We all have good days and bad. I’m sending you a virtual hug and hoping it’s a good day. Apologies if I sound preachy, I’m just frustrated and sad for all our pain. Nina.

Northernmonkee1 profile image
Northernmonkee1

People just don't get it due to hormones and treatment and pain !!! I nearly lost my friend of 30 years !!! We understand and are all here for you. It is an awful condition misunderstood and with rubbish management. Is there an endo UK group near to you? Also, my endo nurse literally saved my life do you have access to one? I was in severe pain and she sorted extra tests for me. But she has also listened to me during outpatient appointments and how I am feeling.

I have also accessed counseling through work.

Work colleagues don't get it and the only one who used to ask me about my pain and she left. People without endo don't get it. We all deserve much better.

Take care good luck with the op and you aren't alone xxx

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