Recent Diagnosis

[Nashee90]

I’ve been diagnosed with Endo recently and I’m really struggling emotionally. I have so many thoughts whirling around my head and just coming to terms with the fact that the pain isn’t all in my head is a mixture of relief and upset.

I’m feeling really lonely and that no one in my family really understands. They say that they’re here for me, I try to be understanding when they say clumsy things or are frustrated I’m not myself atm but it’s making me feel so annihilated.

Has anyone else suffered with overwhelm during their initial diagnosis/have any tips for family that don’t really “get it”? ♥️

[Stash7]

I was diagnosed in Feb and feel completely the same. You are definitely not alone.

After my laparoscopy, I felt happy and relieved but as the weeks have gone on, I've felt more and more unsure. I have so many questions and thoughts in my head.

Family are very supportive but they don't know what to say really. I guess there's not much they can say (that's how I feel anyway). I've decided to focus on myself for now and not include family too much. They will have to wait until my head is in a better place.

I've been reading a lot about endo to try and learn more about it. I have a follow up appointment in April so I want to be as prepared as possible. Have all my questions written out, possible treatment options etc. I have also spoken to my gp who referred me for councilling. I have had my initial assessment and they were so understanding. They have referred me to a councilling service that focuses around people who have long term health problems.

I spoke to endometriosis uk via chat last week and they were really helpful too. They suggested I start a symptom diary which I've decided to pair with a mental health/thoughts diary which is helping.

I know its really difficult but know you are not alone in this x

[Nashee90 in reply to Stash7]

Thank you so much it’s really comforting to know you’re not the only one who feels this way (although I wish nobody had to go through all this).

I find writing questions etc down helpful too because when your heads all over the place I’m likely to just go into appointments and blank.

I feel like keeping it to myself too it’s slightly difficult because I have to live with family atm I feel pressured to say I’m fine when I’m not so people don’t feel helpless because they can’t solve it if you get me.

I think counselling would be really helpful you’re totally right. It’s a big thing to come to terms with and help outside family and friends is probably best I’m 100% going to look into that! Using the chat and symptom diary and things I hadn’t thought of either.

Thank you!♥️

[Stash7 in reply to Nashee90]

Everyone is different and everyone you deal with will be completely different. In terms of your family, they may feel helpless already, sensing you are not okay? Maybe being honest with them and explaining how you feel may bring some comfort to you all? Obviously I don't know the situation or your family so can only talk from my experience.

I woke up myself today and said to my partner 'today is a bad day. I don't feel good with pain and mental health'. Not to draw attention, or get sympathy etc, but just so he is aware, especially when I cry over silly things or I'm grumpy haha. He makes me an extra cuppa and gives me a few more hugs on days like today. Sometimes it's not about them understanding the diagnosis or issues, but them just being there to brighten your day, as I'm sure you would do for them. x

[mimilover]

Please feel validated knowing others have felt this way. NO ONE gets it unless you’ve had it. I think drs are finally catching on. FINALLY. Friends and family don’t get it. Or ever really validate it. But people on here do . Including a few drs with it …..I’ve noticed . You can have it stay dormant and have a good life .

[mimilover]

Yes I like her reply much more ! Family doesn’t know what to say. I have a dr appt this week and I am armed with questions also .