What to do when they don't find Endometri... - Endometriosis UK

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What to do when they don't find Endometriosis?

MikanRIN profile image
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Hi! I have a question. I started having a brutal period pain when I was 16. It felt like I was getting stabbed by knives or as if someone was dragging my uterus all around as if it was made out of dough. Not every period used to be like this. But the recent years every period is like this. It feels like I'm dying when I'm on my period. It just hurts so damn much that I cry and almost scream. When I try to go to the toilet I faint and I almost always feel like I'm about to puke. I can't get out of bed cuz it hurts so much. 1 year and a half ago I started to have pelvic and lower stomach pain without being on my period. It wasn't everyday. It happened once a week, then it happened twice a week and soon I felt that pain everyday. Now I can hardly walk because it hurts so much and I can't have a job. A half year ago I did a laparoscopy. When I woke up from the surgery they told that they had found nothing. But when I read the journal it said that they had found tiny white blisters deep inside that they didn't know what it was. They said my pelvic muscles were really tense and sent me to a physiotherapist. After 2 months of physiotherapy the doctor said I wasn't gonna get better. That my pelvic muscles were still super tense. She said I have to get a meeting with my surgeon. And that's where I am now. I've been waiting for my surgeon for about 3 months. Everyday it hurts, everyday is a fight against my own body. I'm afraid of having this meeting with my surgeon because I asked her "Is it normal to be in such pain that you can't even get out of bed". And she said yes. So I fear she may send me home with a few painkillers and then be done with me. I just feel so alone and scared. I don't know what's causing the pain. I don't know if I ever will understand. It's hard to live with this daily pain without understanding it. I hope for a miracle, that they will find what's causing the pain. But I can't see the light at the end of the tunnel. It feels like I'm gonna be left alone with the pain and that no one will help me. Is it possible to miss Endometriosis during a Laparoscopy? Is it possible I had my surgery too early? I'm 24 years old. Could it be something else? I only wish to know what it is. I used to be a dancer. Now I can't move without feeling cramps in my lower region. If I'm gonna live the rest of my life being tortured by pain, atleast I want to know why. I don't wish for an incurable disease! I wish for answers! Because the worst thing, the absolute worst thing right now is not knowing why. I hope someone can give me advice or some hope. I wish to have a normal life again. I want to have a job and a family. But all of those things feels impossible right now thanks to the pain.

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MikanRIN
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