The anxiety is real

[Bexn87]

Hi ladies, currentley sat on the sofa crying again at 2:30am does anyone else convince themselves there’s something else going on. I’ve been diagnosed with endo and awaiting to see a Gynaecologist but in the meantime it’s like a new symptom everyday. I’ve just woke up with excruciating neck pain right at the back of my neck so just had another cry and convinced myself I have cancer and they’ve missed something does anyone else do this it’s not normal I’m making myself ill. I’m scared to wake my husband up I feel like I’m putting on him so much just lately.

[endowarrior12]

Thank you for your post, I’ve had a night in the sofa doing the same thing as you, I’m sorry this reply isn’t very helpful, I just wanted you to know you’re not alone and your relatable post has made me feel less online too

[Bexn87 in reply to endowarrior12]

I ended up going a&e and I have a kidney infection so antibiotics I’m hoping it will clear some stuff up for me and I can get some sleep, hope your okay

[635703]

yes. I am pretty low with the waiting lists being so long. I have another 2 chronic health issues besides Endo. I never know the difference between Crohns and Endo symptoms.

The system has worn me down but I won’t stay here. The weather hasn’t helped and I hurt my back….just pulled a muscle. Health anxiety for us Endo Patients is real.

Oftentimes we have been medically gaslit and had our pain and symptoms invalidated by all Medical Professionals. This type of abuse is real and hurting women. Drs can have such an impact on us, They genuinely don’t realise how to speak to people who are Patients. I promise you this is not you. It’s a common thing in Medicine. It’s not okay. But I can’t change it atm.

You’re not alone 🥲💞🫂

[RedCat24]

I often sit and cry alone i know my partner struggles seeing me in pain so sometimes i dont like to put it on him 😔 I'm sorry your feeling this way but also glad to see you got help and there was a reason for your extra pain. I hope your feeling a little better now 💛

[ClaudiaGrace]

Hey Bexn87

I think the anxiety and the worry is one of the less talked about things actually, yes there’s pain but the lack of certainty anyone can give you about any of it alongside is awful. I constantly have new pains or symptoms and worry about what they are and if I’m ignoring something bad by assuming it’s my endo. I constantly worry that it’s getting worse and I should be doing something about it, even though there isn’t really much else I can do. I worry that deinogest is trashing my brain because I have word finding difficulties but I’m too scared to come off it. My anxiety carries across in to my work so I find myself getting increasingly anxious about work things. I’m also reluctant to go to the doctor about things like my heart palpitations because I think they think I’m a hypochondriac where I’ve gone there so much because of endo stuff.

So yes, it’s awful the anxiety about it all and as I said in another post I don’t think it’s helped by the way we’re treated. We should have regular check ups with consultants to manage and keep track of what is a life long condition. Not a couple of appointments to discuss surgery then be discharged after surgery as though we’re fixed. I agree with someone else also the doctors are often not able to respond in the sympathetic and containing way that we need them to.

Thank you for bringing this,

Really hope you’re feeling better after clearing your infection x

[635703]

it’s difficult to know when to see a GP, when to go to hospital, when to ask for help from our Partners or loved ones. It’s because we have been gaslit and had our pain invalidated and made out that we are hysterical women.

That’s not fair, it’s not right. We also don’t always have access with a Gynecologist who can be kind and gentle with us. Which we need aswell as answers and more treatments!

We are all in the same boat and it’s not okay. I hope The Health Secretary picks up on our cause and helps us in women’s/people’s healthcare as it’s so underfunded and we are neglected. ☹️😤🫂

Hugs and love to every Endo Warrior struggling!

[Bexn87]

I’m glad I found this forum and posted it’s made me realise I’m not alone feeling this way, non of us should have to feel afraid and unsure but it seems to be a new normal now unfortunately. Thank you for all your replies sending lots of love xx

[Earthmother1]

Hi Bex, my heart goes out to you. Ive been there many a time, the health anxiety is real. It doesn't help that we're not listened to, and that when we were told the problem was all in our head, actually turned out to be a real difficult to treat health problem, it causes us to lose trust in the professionals. It causes us to ruminate about our health, we're not being seen quick enough, we're not being treated properly, we're being fobbed off and given medications that don't work, we're in pain and tired and then we realise we feel lost and scared with no one to help us, we feel alone. My goodness we shouldn't be left alone to deal with this in a first world country. Yet here we are. What I do is to ask myself, have I felt like this before? Is this an old ache/ pain/ problem? If the answer is yes, then I tell myself to not worry for it will pass. If it's a new ache/ pain/ problem then I book in with the dr. Ive learnt that deep breathing really works in calming anxiety. I take a cocodamol or 2, pick up a book and read till I'm sleepy. If the issue is still there when i wake in the morning and I'm worried whether the problem is old or new, I book an appt with my favorite dr. It's really all I can do. And I have grown to realise that I have no control over hospitals and endometriosis. However we can control what we eat, the exercise we do, what we drink, the company we keep, and what we do for fun. But you certainly aren't alone my lovely. Sending big hugs.