-
Topic: Endometriosis
It took 13 years to get diagnosed. No GP believed me. I ended up paying privately to have a consultation with a specialist. GP’s told me loads of insulting things throughout this period. Like my periods wouldn’t be painful if I gained weight or it was just normal and I needed to get used to it.
-
Topic: Fibromyalgia
The pain is constant. It never goes completely away. I go to bed and wake up with a severe headache. This does not include the migraines I also have. My body hurts all the time. Nerve ending pain, headaches, pain when standing, sitting, laying down, sleeping and resting. It has sucked all the enjoyment out of my life. I have to cancel outings because going will be too much and cause a flare.
-
Topic: Fibromyalgia
It feels like the most intense horrible burning pain shooting throughout my body like high pressurized water shooting through a pipe. My body feels completely weak, as if I can’t lift a finger. My brain fog is so intense I can’t form simple sentences. It feels like my whole body is panicking terribly all the time. It’s so hard to keep control of my body and my emotions. Just the daily struggle.
-
Topic: Fibromyalgia
Even when I manage to sleep through the night, I feel like I’ve been awake for days. Some days im so exhausted that being awake makes me feel like throwing up and I want to crawl out of my skin. Sometimes I cant even move because my body literally refuses to work with me due to the exhaustion.
-
Topic: Childfree
I always thought it would be best to not have children however most of the partners I’ve had have wanted children so I just thought that I might one day but didn’t want to make plans to. I got out of a bad relationship in my late 30s I thought I’ve stayed child free this long. I will definitely stick by this decision for Good now.
-
Topic: Childfree
I think its odd how so many people think children are objects to fulfill or take care of them but then call child free people selfish. I think its narcissistic to want kids just for what they can do for you. I think the only good reason to have kids is because you feel equipped and called to raise another human to be the best version of themselves.
-
Topic: Endometriosis
Despite my high pain tolerance, the pain I get on my period is the worst pain I have ever felt in my life. It’s about tied with IUD insertion, which was done with no pain relievers or numbing. Endo pain is the first type of pain that has made me cry and made me want to throw up. It makes my legs weak, and I end up walking bent forward and shuffling my feet, like an old woman. It makes it hard to concentrate.
-
Topic: Endometriosis
I saw several doctors, many of whom told me things along the lines of ‘you’re too young for endometriosis’, ‘it’s a weak pelvic floor’, ‘get pregnant, it’ll make the symptoms go away’ and I was even accused of drug seeking. I have spent many, many days in agony and still do because I feel like I’m never going to be taken seriously. Finally, I had the surgery, but even that didn’t fix my symptoms. Once again, I was back to square one.
-
Topic: Endometriosis
I consider suicide frequently. I fantasize about walking into traffic. I cannot sleep. I cannot eat. My legs are heavy. I feel like I’m being eaten alive from the insides. I have a diagnosis. I have had all the surgeries. I have done all the treatments. No one takes my pain seriously. I cannot imagine having a romantic relationship. I cannot imagine much of a future. I would not mind dying.
-
Topic: Endometriosis
I struggle with extreme pain and fatigue. I live in an unpredictable body and that makes it hard to plan my life. I struggle with feeling overwhelmed, like a burden, I worry people don’t believe me. I think I often mask and downplay how I’m actually feeling to make the people around me more comfortable.
-
Topic: Endometriosis
Pain is as if my entire pelvic region has barbed wire around it, when I move the barbed wire pulls tighter, when I stay still too long the barbed wire pulls, it’s never being able to be fully comfortable and having to constantly adjust. I’ve had to give up every physical thing I used to love because the pain flares during and following got too intense to manage.
-
Topic: Endometriosis
It’s draining daily, whether that be excessive bleeding, fatigue or pain you can’t quite explain unless someone has experienced it. It affects what you wear, what you eat, how many hours you work, and I even go to bed when my 5 year old son does. I keep a heat pad in my office and have to sometimes wear loungewear to work, luckily I have understanding colleagues. I also have to heavily rely on my family to the point we live in the next street.
-
Topic: Endometriosis
Dealing with this disease has opened my eyes to how much the medical system hates women. Why is it that we have to continue to push for answers for our bodies. I was accused of being a drug addict because I was dealing with such pain. Everyone treats me like I’m making up this disease, even after I have had 3 surgeries, one being 9 hours long.
-
Topic: Endometriosis
Some days I compare the pain to labor pains. I have had two children, so I know what that feels like. Some days I describe it like this: Imagine a person grabbing your insides and twisting them together like a wet towel, but the towel is on fire. The bloating is horrible as well, many days my clothes don’t fit which is very disheartening. I live an active lifestyle, and workout at least 5 days a week. Some days, I can hardly manage a long walk at the gym because the exhaustion is so bad. And yet-we power through!
-
Topic: Endometriosis
The pain radiates through every part of my body. Some days it feels like a sharp jagged tool inside me and is ripping its way through every part of my guts, uterus, bowels and body until it’s done. There’s a point where you have to just surrender to the pain and allow yourself to know that there is another side to it.
-
Topic: Endometriosis
It was horrible, it was intense and constant pain, it was painful sex, it was periods that would flood and go on forever, it was insane pain during ovulation, it was brain fog, fatigue and insomnia. The irritability was destroying my relationship, I felt like I was going insane because doctors and hospitals wouldn’t believe me, I thought I was making the pain up.
-
Topic: Endometriosis
The time and energy that goes into taking meds at a certain time, going in for mid cycle ultrasounds, taking pregnancy test, and having blood draws is exhausting and begins to feel isolating, filled with grief, and frustrating. In my experience I have blamed myself for not being able to conceive which has fueled quite a lot of self hatred in that aspect.
-
Topic: Endometriosis
Terribly painful periods. At one point I was taking my Mothers cancer pain meds. I take 2-4 in one go and start hallucinating from the strong pain killers – but the pain was just that unbearable that I needed the pain meds so badly. Initially it was just thought to be bad period pains. Later on it was thought to be bad IBS and intolerance of things like lactose and gluten.
-
Topic: Endometriosis
Unfortunately, I feel like the healthcare system failed me for many years. By the time I was finally diagnosed, my endometriosis had already progressed to Stage IV at just 19 years old. I often wonder how different things could have been if someone had listened sooner. Earlier diagnosis may have prevented some of the pain and suffering I’ve experienced
