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    Just joined the app

    Just joined the app to hear and share stories of endometriosis, chronic migraine, vulvodynia and hidradenitis suppurativa. Looking forward to it!

    #Endo #endometriosis #chronicmigraine #Vulvodynia #HS #HidradenitisSuppurativa #Migraine #Headache


    Do you or someone you know struggle with endometriosis?

    I've been struggling with Endometriosis since I am 13 years old. Please share your story if you can relate!


    #Endometriosis #Endo #EndometriosisAwarenessMonth #mentalandphysicalhealth #MentalHealth #podcastepisode #Sharingmystory


    #tired #fedup #painuponpain #EDS #Endo

    I'm tired of feeling tired.

    I'm tired of feeling fed up

    I'm tired of spending all day in bed as I can't do/face anything else

    But most of all...

    I'm tired of being in excruciating pain due to my endo on top of my Chronic pain due to EDS!

    I know there is an end to this but it seems to be so far away as I don't have a date for my op yet, not to mention the fact that that might not even stop the pain!


    I want to get back to work but at the same time I'm terrified that I won't cope when I do!


    Has anyone experienced hypermobility after starting visanne? #Endo #Endometriosis #Hypermobility

    When I first started Visanne (Dienogest/
    progestogen only pill) I pretty mutch immediately was getting Joint Pains and started to be noticeably more flexible. I was hypermobile my whole life but my problems never were as severe as now. I went to the doctors multiple times but every single one of the thinks it can’t be connected to this medication. I switched medications for a while and my symptoms improved a tiny bit. But as soon as I restarted Visanne my issues started to worsen again.

    I think the explanation of one of my doctors that „it‘s just in my head“ doesn’t work out because I am „measurably“ more flexible. By that I mean I can touch the floor much easier I‘ve got many new stretchmarks that at just not explainable otherwise ect.

    If anyone has ever experienced something similar or has any advice I would be very grateful to hear from you!

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    Extra-pelvic endometriosis isn’t rare; endometriosis specialists are

    It’s not okay that endometriosis patients are so mistreated and ignored that I am at the point that any medical appt makes me feel extremely scared and anxious. It genuinely fills me with rage at this point. The fact that I’ve been treated like literal garbage by so many doctors for so many years—for over a decade—that seeing someone new makes me this upset is a disgrace. To be vulnerably honest, friends, I really do feel like I’ve been traumatized by this over the years, after having to deal with this many salty doctors’ snide comments, dismissals, and deflection of blame onto me as if I am not sick—instead I’ve been treated like my mind is the problem—all because of their bruised egos that they weren’t skilled enough to help me, or their ignorance due to THEIR lack of knowledge about my illness.

    I have seen three doctors this year alone who have refused to even believe me. They offered me nothing more than some iteration of: “no one has that much pain from a period try ibuprofen,” even after seeing my book-length chart & my surgical diagnosis! Before I was diagnosed it was even worse—I spent almost two years (my whole MA) in pain almost every day, physically & mentally, and I had no choice but to cope as best as I could with zero assistance from any of the many, many doctors I went to see during that time. It stopped me from being as social and active in my program as I wanted to be too—and it was all because my doctors were a joke who said I was fine &/or who told me my pain wasn’t even real and that I should see a psychiatrist. They were awful. They made me feel completely hopeless. At my lowest point, I even started to question my own mind and my own bodily experience. They treated me like I was “hysterical” to the point that for a while, I actually felt like I was losing my mind.

    The worst part about all of this though is that these doctors, the people who I should have been able to rely on to help me, didn’t just fail to do their jobs—they also made my illness and my pain significantly worse. If I hadn’t been dismissed, derided and put down by doctors for the last decade that it was growing in my body, then my endometriosis wouldn’t even have progressed to its current multi-organ state. Now it’s so painful I can barely function most of the time. How messed up is that?!

    Our society teaches us that doctors can be trusted and they always know more than we do—endometriosis patients can confirm that is a LIE. We, the endo warriors, are the true experts when it comes to endometriosis. The majority of OBGYNs and primary care doctors know less than we do, worldwide, and that is a serious problem. #Endo #Endometriosis #endometriosisawareness #MedicalTrauma #MedicalPtsd #ChronicIllness #Misdiagnosis #access #HealthCare #Diagnosis #reproductivejustice


    Trying to think this is funny, but it’s not really … #Endo warrior

    Anyone else wish they could invent a wearable diaper shaped heating pad for pain ?


    Can’t stop crying and so overwhelmed #fibropain #BipolarDisorder #Endo

    I am sitting here waiting for the sun to come out (if it decides to due to our Winter weather!) crying from the endless pain, the dark thoughts and the overwhelming feeling that my life is again spiraling out of control. I just found out there is another cyst on my last ovary and the oh so familiar pain of endo is becoming unbearable. Fighting that with my never ending pain due to fibromyalgia it just never seems to end. I know my state of mind isn’t helping, the last connection I have with my dad who passed away is being sold and there is so much pressure from my family who shows no support and doesn’t believe there is anything wrong with me to be on top of it all. I just am struggling to find reason…purpose, anything to grasp on to. I feel like I want to give up because it’s all too much. No matter how I try to explain the pain, unless you have experienced it, you can’t understand it and there are always the comparisons, oh I am in pain too you know…I constantly feel like saying it’s not a competition!!
    Thanks for reading this message, I needed to express myself without judgment or without anyone minimising my pain. Xxoo


    Period talk

    Why does nobody talk about the fact that the most important and trusting relationship a woman can have is with her tampon and pad choice. Don’t you get anxious if you are unable to buy your usual “preference”? I can’t imagine going into a store and just making a selection at random, I need my tried and true favourites to carry me through the month. #ChronicPain #Period #Endo #IIH #ChronicIllness


    laparoscopy for endometriosis... how quickly does the pain come back?

    Hi guys... I had a laparoscopy done two weeks ago. A cyst was removed and spot of endometriosis. I am now back in pain? Is this normal? I am so upset to have less then two weeks pain free! #Endometriosis #Endo #ChronicPain