Does any one here ever feel like their losing the mind? I feel so lonely but at the same time canāt bring myself to meet with people, I donāt even know why this is, I feel so sad and frustrated at the constant symptoms yet I canāt even cry to feel a release.
I will be having surgery no 3 soon in a BSGE centre, I had my pre op last Wednesday and have felt so strange since, I canāt really explain it, I really want this surgery to make a difference to my health and Iām trying to positive but it feels like being on a roundabout that I canāt get off, the same cycle of referrals, appointments, scans then surgery only to not feel better then having to do it all over again š ( I know many of you here experience the same cycle) I really hope this time itās all removed and I get just I bit of relief. Also I feel this huge guilt for seeking help again as I know so many woman have it so much worse than me including many of you here. The Endo nurse at the centre has rang me a few times to give advice and support, she seems lovely but she sings hymns to me down the phone and tells me to pray and think positive thoughts which isnāt so helpful and I donāt believe in god ( it also makes me feel quite uncomfortable and I actually donāt know how to react to her).
sorry I know this post doesnāt make much sense and Iām really not looking for sympathy, as I know everyone here is suffering and that I donāt suffer as bad as some, I guess I just wanted to write down some of my thoughts and feelings and felt this is a safe space to do that.
Bless you, Iām so sorry youāre feeling like this.
I honestly end up laughing about my situations when in reality deep down I am so exhausted of it all. I think my coping mechanism is like making it light hearted with jokes.
I am soooo sick of going to bed in pain and waking up in pain.
Sick of getting no help. Sick of being terrified of my period.
Sick of not being able wear the clothes I want. Sick of watching others in their 20s living their lives whilst Iām just surviving.
Itās absolutely awful, and it mentally exhausts me. Feels a battle every day just to function!
I am only at the beginning of my Endo journey so I donāt really have any advice as such. Suffered for 11 years but only found out what Endo was this year and my first surgery is 19th dec.
But just so you know, youāre not alone. I bet every other woman in the group can absolutely relate to you. And always get things of your chest!! Xxx
I always worry when I chat to friends and family Iām a broken record but itās a huge part of our lives, it takes over everything. Itās so draining xx
Best of luck with your surgery. Your story really resonates with me, feeling behind in life is really terrible, especially when it's due to things beyond our total control. Sending massive hugs.
You arenāt on your own in feeling like this. Iām sorry that you do too, comparing yourself and your symptoms to the experiences of others with the condition is not always helpful I found. Pain is pain and the way this compromises our day to day lives is hurtful and uniquely so. Be kind to yourself is a cliche but there is truth in it because the relief you get from practicing it is real. Finding the balance between that and self advocacy is crucial, its an ongoing process-we never stop moving or growing all the time and that is why it is a battle to function but the heartening thing I find from this is we leave the person we were yesterday behind because we can never be that precise set of chemical reactions again at a cellular level.
Each day is new and we can choose how we approach it that is the thing that is in our power, the approach can be a state of mind- choose a different commute each tiny choice we make builds the colour of and nature of our day. I find journaling is helping me at the moment-it doesnāt always help but I donāt especially want to talk to my friends/ family about my condition right now unless they have it too they find it overwhelming and I donāt necessarily want to deal with that- it doesnāt make them bad people or friends but there are things they wonāt understand and I really wouldnāt want them to because really feeling it is not pleasant . Journaling helps sometimes if I do it over a few weeks and I read back- if Iām still thinking about the same things I try to address why that is if itās different I think about how this is positive or if I have let that thing go. I use that to think about how I will manage the coming weeks. Iām sorry I know that is long but this is a condition where it seems like there are very few short answers. I hope this helps you a bit x
Sending so much love. It is so OK to feel this way, I totally relate. The guilt of constantly presenting with the same (worsening) symptoms, saying the same things. But we shouldn't feel guilty, as we deserve kindness and support.
You are not alone in this, I have had a break from University due to my suspected endo alongside severe OCD/anxiety forcing me to reconsider my career. The endo symptoms affected my ability to return more than I'd anticipated and I'd had no luck with my GP at that point (no plan, no answers etc.). I'm 23 and I feel as though I have very limited quality of life, which I'm fighting every day to change - some weeks are harder than others.
My best advice to anyone is finding what you are able to do that takes your mind off things and empowers you when you're struggling. My partner sometimes takes me to a coffee shop drive thru and grabs me a hot chocolate, and we'll sit in the car talking about other things. Getting out in a comfortable way can really help break up your day to help you to continue in a better mindset, or if you really need a day off, allow yourself that. I'd also suggest yoga or some form of relaxing activity, like reading, podcasts, baking. Anything you enjoy that is feasible.
Be kind to yourself, find those who you can confide in (if not, use this forum!!), and remember on those darker days just how strong you are. Everything we see around us in this generation, be it social media or film, TV etc., warps our view of reality, when really, it's a highlight reel of people's days, weeks, months. Don't feel guilty for having bad days, or needing support - you are human, it is more than normal. I majorly suggest doing a clear out of your social media following and following pages that make you feel positive, seen, motivated. Small things like this can really make a massive difference.
I feel I'm now waffling, but I'm always here if anyone needs a chat. Endometriosis/suspected endo can be so isolating, but you are one of many who silently suffers day to day and we need to change that
P.S. - Regarding the nurse singing hymns, it is not offensive to express that you are atheist/agnostic and don't find religious approaches helpful. Care should be patient-centred after all.
thank you all for your kind and supportive words I have read the comments and they have greatly reassured my that 1) Iām not going mad and my thoughts and feelings are a normal reaction to this awful disease and 2) itās ok to have the surgery that I need.
TennisCourt I total get the exhaustion and constantly trying to find something to wear that is comfortable and does show the bloating it really does affect our self confidence. Good luck with your surgery lovey I hope it brings you great relief xx
Ursa80 thank you so much for your kind words and advice I love your positive attitude, I have been trying to take Better care of myself especially leading up to my surgery as I feel is will help with the healing, I used to journal my thoughts and feelings maybe I should go back to it as is does help and it is hard to talk to friends and family because as you said they really canāt fully understand what we are going through. Xxx
eloisejm im so sorry this awful disease has affected your studies and career choices, Iām 42 and only started to really get sick in my mid thirties I only imagine how hard it is for you having to limit the things you do when you are so young. Take care lovey and I hope things improve for you xxx
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