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Endometriosis
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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.
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.
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.
Endometriosis
Although various symptoms come and go weekly, the daily chronic fatigue is relentless, feeling like I’ve been drugged nearly every morning. I spend more time thinking about wanting to just go home and lay down than anything else throughout my day.
Endometriosis
At its worst unbearable. You would do anything to make it stop. Like someone ripping your insides out. Stabbing in stomach stabbing up the anus. Feeling sick. Hot sweaty. Like bad period pain with indigestion and a kidney infection at the same time. Rolling around on the floor.
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.
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.
Endometriosis
Dr said he had never seen so much endo in a person my age. I started my period at 14 I was diagnosed at 16.
Endometriosis
Endometriosis has taken so much from me. It has broken me in ways I never thought possible. It has shattered my outlook on life. I hope to one day be the happy, whole person that i used to be, but for right now, im fighting a silent battle
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.
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.
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!
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.
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.
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.
Endometriosis
I am depressed and continually anxious! I’ve tried to take my life a good few times which I am extremely disappointed with myself because I have my 21 year old daughter to live for and I don’t ever want her to see or know that hard time I went through
Endometriosis
At its worst, the pain is unimaginable. I was bed bound and completely dependent on others for a few days each month. The depression that caused and the thought that things would never get better had me thinking of ending my life.
Endometriosis
I was diagnosed in 2020…after 10 different doctors all telling me I was stressed or crazy, I was treated like a junkie trying to score pain pills, trying all different meds, no one took me seriously.
Endometriosis
I would rather give birth every day than go through my endo flare ups. They ruin my life. I walk with a permanent limp, look 8 months 2/3 weeks a month.
Endometriosis
The pain was horrendous like a twisting knife cutting into you it took my breath away unbearable I used to pass out on the bathroom floor I lived on my own it’s a very dangerous disease if you live alone you really need a call alarm
Endometriosis
It has changed my life. It is taken away my life. It has made me realize that there are worse things than death.
Endometriosis
I really feel like giving up a lot. I’m not living anymore I’m just here waiting for next painkiller or next appointment.
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.
Endometriosis
I can’t walk most days, it’s in my spinal nerves. I am 37 stuck in the broken body of a 60 year old. Pain is 8 out of 10 or more every day. And I am restricted from doing so many things with my life. I feel trapped.
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
Endometriosis
Pain, bowel, bladder issues. Blood loss, headaches, leg pains. Now I’m older kidney issues. Extreme tiredness. Migraines.
Endometriosis
I hate hospitals now due to it all
Endometriosis
I’ll never forget reading about a nurse talking about caring for women, saying something like ‘these women are in so much pain that they are relieved to be diagnosed with an incurable illness’ – it describes my experience perfectly
Endometriosis
I’m physically exhausted daily. I cant be me. I constantly wonder when the next flare up will hit me. Its a very anxiety loaded diagnosis
Endometriosis
They need to focus more on this matter and try to come up with a solution and problem solve the lying issue so girls such as myself ; and many of thousands of others can stop suffering !
Endometriosis
The pain is excruciating, I have been knocked over by car I’d rather go through that again than the Endo pain.
Endometriosis
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 .
Endometriosis
Endo is always at the forefront of my mind. I cried in the baby clothes section at target atleast 3x since I booked my second surgery. I booked 2 weeks ago.
Endometriosis
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.
Endometriosis
I’m in pain everyday the whole day, I am exhausted all the time. I only wear black pants because my period is not regular and I have a fear of soiling myself.
Endometriosis
I don’t put any effort into fertility concerns because I don’t want to put my body through trouble.
Endometriosis
Every single day I have pain. Not one day goes by where I do not experience any pain. I am bloated most days. A few years after my surgery I was diagnosed with may thurner syndrome. A few times a month that flares up with my endometriosis.
Endometriosis
Endometriosis has made starting a family nearly impossible…. I’ve experienced 3 miscarriages naturally, three IVF cycle with 34 embryos and none of them making it to blastocyst. Endometriosis has robbed me of my dream of becoming a mother. It has been devastating
Endometriosis
They don’t understand, we are not heard, we are not seen, there is not enough research on endometriosis in women. They do not know our pain!!
Endometriosis
I’ve expierienced the worse pain in my life with Endo. Nothing has compared so far. It messes up how I answer the pain scale because in comparison everything else feels like mild discomfort.
Endometriosis
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.
Endometriosis
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.
Endometriosis
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.
Endometriosis
During flare ups when the pain is at its worse it can be very overwhelming, I have feelings of anxiety and depression, feelings of not being good enough or a burden on my partner friends and employers
Endometriosis
Pain started with first period. It was so heavy too.
Endometriosis
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.
Endometriosis
for 30 years it was not good, i was told it was normal, it was IBS, lifestyle choices i was just overweight, i was ignored and gave up- until it became so bad, i also had to fight for the right pain medications
Endometriosis
People need to see the damage it does it’s not just a period disease it’s grown into my bladder, super glued everything together, my bowel doesn’t work properly. Damaged my tubes and give me nerve damage in my womb
Endometriosis
I feel like there is an emptiness in my heart for the child I never got to have. I feel like I am damaged.
Endometriosis
I would like to see a cure or treatment that allows us to have minimal symptoms but also to be recognised as a disability
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