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Age: Not specified
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.
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Age: Not specified
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.
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Age: Not specified
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.
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Age: Not specified
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.
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Age: Not specified
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.
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Age: Not specified
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.
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Age: Not specified
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.
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Age: Not specified
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.
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Age: Not specified
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!
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Age: Not specified
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.
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Age: Not specified
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.
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Age: Not specified
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.
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Age: Not specified
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.
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Age: Not specified
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
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Age: Not specified
My pain is located in my lower abdomen my lower back and down my left leg, I also experience extreme mood swings, hormonal acne, bowel and bladder issues, bloating and fatigue. I have recently began taking low dose monjaro and it has had a surprisingly positive impact on the severity of pain. However I have also recently experienced liver failure due to the volume of pain medication I have to take and the length of time I have been exposed to it .
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Age: Not specified
It varies by day. Some days, it feels like someone’s craving your insides, like you’re a jack-o’-lantern. Other days, it makes you bloat like an eight-month-pregnant woman. Sometimes, it’s like someone’s beating you with a baseball bat. Your energy levels are low, you’re always exhausted, and most days, you’re in pain.
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Age: Not specified
It’s tough. I feel like a bad mother when I don’t have the energy to do it all for them. I feel like a bad wife when I’m in pain or sexual activity is painful and my husband feels bad despite not trying to hurt me. I feel like a terrible coworker, and nurse when I have to miss time for my illness. And a bad friend when I miss out on plans from pain and exhaustion.
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Age: Not specified
Completely isolating because no one can see it. If I showed how I feel I’d lose my job and marriage. People say they care but can’t cope with listening or understanding what it can possibly feel like to always be in pain and know that the daily pain will increase around every period. To know there is absolutely nothing you can do about it because there is no cure or treatment that works for you.
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Age: Not specified
I was finally diagnosed in 2018. They only found it because I was having surgery for fibroids. For years, no health care professional believed me. I was made to feel like I was crazy. One doctor told me I must be from another planet. Another gynecologist told me I was too skinny to have endo. I saw every kind of specialist and they all assumed I was mentally unstable.
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Age: Not specified
Emotionally, it’s hard. Especially with the infertility piece. It’s hard to watch other women’s bodies do what they were designed to do, so easily, and sometimes accidentally. Meanwhile, there are those of us out there who have to look at the science of why things work the way they work, and try to work with that, and it still doesn’t always work out how you want or expect it to.