16. In ‘n out of the hospital
The past few weeks have been very tough. The pain started to get worse a few months ago. It got heavier, but I didn’t really listen to it. I didn’t take the rest I needed. Honestly, I really don’t know why I did that. I want to be competent in everything in life and now I am not at all. The only thing I can do is lay in bed all day. I can’t walk straight anymore because the pain radiates to my left leg, my upper thigh, my hip bone and my butt cheek. And because I didn’t get the rest I need, I just made l everything more difficult for myself. It is stupid I know, but I just want to be normal.
Is it a bad thing, wanting to live a normal life like any other 27 year old woman?
I don’t feel sick usually. I don’t feel like I have a chronic disease. I think that’s the part that makes it even harder to accept. Also people don’t really understand it because they don’t see that I am sick, which is also my own fault because I never show it to anyone. But is it really my fault? Is it a bad thing, wanting to live a normal life like any other 27 year old woman? I want to be able to do my job and go to work, I want to go out with friends and eat whatever my tummy desires. It’s just so hard to accept that I am not able to do all these things on a daily basis. The daily tasks are even too much for me. And beside the pain, the mental part is getting harder and harder every single day.
Three weeks ago, the pain started to get even worse. I had a fever and had to throw up all night long. The next day, my body hurt so badly and I recognised the kind of pain from a few years back. The pain was starting to get worse again and felt the same as when I was hospitalised in 2017. I couldn’t sit up straight anymore, couldn’t walk, everything hurt. So at the end of the day I figured I should see a doctor. I’ve called the hospital, told them what I was feeling and they advised me to come see a doctor. So I went there because they wanted to see me immediately. Luckily I was together with my mum. I went from the general practitioner to the ER and from there to a gynaecologist. They checked my blood and saw that I have an infection. They decided to give me antibiotics, two different ones, that I had to take for two weeks straight. A few days later, they wanted to see me again to check if the antibiotics are working for the infection, so they checked my blood again and did an internal examination with an echo. Everything seemed fine but they wanted to do a CT scan as well to make sure all the other things were excluded. With other things I mean like scary things. A week later I got the test results back. Everything seemed fine which is actually a good thing, because there were no other scary things happening in my body beside the fact that there is endometriosis hurting me like hell. The gynaecologist referred me to another hospital, another gynaecologist who is specialised in endometriosis. She wanted me to have a conversation about having surgery that would possibly help with reducing the symptoms.
She told me that there is a possibility that it wasn’t endometriosis.
So three days ago I had the appointment with the other gynaecologist. She was fucking horrible. Honestly, I’ve never had such a rude doctor in my life, except for one time but he was a man, so he wouldn’t understand I thought. This doctor was a woman. Specialised in endometriosis so I figured that she would be a perfect fit. I am not sure what my expectations really were, but at least I thought that we would discuss a surgery because multiple doctors recommended me to have surgery in order to reduce the symptoms. This doctor on the other hand.. She was very rude. She basically told me that the pain was in my head, that I was making it up. Also she questioned the doctor that did surgery on me before. She questioned the photos of the laparoscopy. She told me that there is a possibility that it wasn’t endometriosis. After that she said that my symptoms were very much like endometriosis, so it probably will be endometriosis, which really confused me. I was literally so shocked by her way of communicating, how is it possible that you are a doctor?!
Anyway she wanted to do surgery on me she said, but she wouldn’t advise me anything. She just told me that it was my decision and that I had to think about it. I get it but honestly I don’t, because you are the doctor. You are the professional, you should know what to do best. You should fucking advise me. She told me to think about it and decide whether or not I want to do surgery, so she will call me back within a month to ask me what I want to do. Oh and also I was asking about freezing my eggs because I’m very scared that I will not be able to have kids. I asked her if that would be a good option for me, just to be sure, and she told me she couldn’t see the future so she wouldn’t know. Then she said that there is no way that she could see if I’m fertile or not, after that, she became a bit vague and all of a sudden told me that she wanted to check my bloods for certain values that can tell if I’m fertile or not. I was so confused, it was the strangest appointment I’ve ever had. Her main advice was that I had to accept the fact that I am sick and that I have to live with the pain. It will never ever go away, not even with surgery. The surgery will only reduce my symptoms by 60 till 70% if I’m lucky, that’s what she told me. So as you can read, it was a very successful appointment. NOT. This really demotivated me and actually hurt my feelings so bad.
I think about calling another hospital, which is also specialised in endometriosis, where I have been before as well. I will call them soon to see if I’m able to get an appointment. Keep you updated.
Love,
Andrea