After 10 years of struggle with menstruation pain, uncontrollable bleeding, abdominal pain, lower back pain on the left side of my body, chronic fatigue, migraines and mood swings they finally diagnosed me with endo five weeks ago.
Today 15/7 I had my laparoscopy and they found endometriosis on my left side uterus, ovary, bladder, lower pelvis, and peritoneum. This is my story:
Around 1pm they took me up to the operation waiting area. I was scared to go under as I never had surgery before. So I was crying and shaking. When I was laying on this operating table. I spoke to the professor who diagnosed and did the surgery on me. I asked him the question: “what if you find adhesions in my intestines will you proceed to a laparotomy instead?” He reassured me that this would not be the case. This was my scariest thought so I needed to know for sure. After finding a vein which has always been a difficult issue in my case, the nurse put the mask with gas over me really fast and after four or five inhalations it all went black. Around 2:45pm I woke up in recovery. When I woke up the pain in my shoulder was killing me. My eyes felt like they were glued together. The pain around my bellybutton was the worst. They had to give me morphine 4 times to relieve me from the pain. My blood pressure was very low 9/5,5. Around 4:30pm they took me back to the room. Once back in the room I started feeling dizzy. My belly was enormously bloated and my face and eyes were swollen from laying tilted head down. I could go to the bathroom an hour after I got back to the room. It was painful and I got dizzy. I also started bleeding again. They gave me some paracetamol when the pain started to flare up. Two hours back in the room I could finally drink some water. I have been sober since last evening at 9pm. After three hours they sent me home. Getting in a wheelchair and getting in the car was extremely painful. The car ride home was excruciating, every bump and turn killed my shoulder. Getting out of the car was even worse as the pain started to flare up really bad. My husband and dad had to help me both to the sofa. Then the pain hit me really bad. In my shoulder and belly. I started shaking uncontrollably and crying due to agony. Once down and my arm lifted on a pillow I got a bit better. I took a painkiller around 8pm and after 25minutes the pain was bearable. My husband applied some tiger balm on my shoulder and neck, the warmth of this really helped with the pain. I ate some Royco chicken soup and a grainy Swedish cracker. It felt really good to have some warm fluids going down my belly. I have walked around three times in the garden to have some pain relief of my shoulder. Getting on and off the sofa and toilet is the worst. Laughing is not possible and hurts like hell, my husband makes me laugh all the time and this is really hard now. Trying to force a non painful laugh is also too funny so yeah I’m kinda screwed here being married to a clown (love you babe and thank you for taking care of me right now)
I’m a person who always shoots around the house doing things, taking care of my cats and dogs, cooking food for my husband and me, but now I feel like a burden, the old ball’n chain. I’m really thankful to have a husband who understands what I am going through. I hope everyone has someone to help them out and deal with this disease and the after effects of it. We deserve to be helped and taken care of.
The pain now is like a 5 out of ten. Some side effects are bloated belly, shoulder and neck pain, swollen fingers, sensitive breasts, vaginal bleeding, and no control on the bladder when peeing. It’s now 2:00 am and I’m staying on the sofa for the night. At 5am I will be able to take a painkiller again. Hopefully the pain will stay like it is now. Emotionally it’s been a rollercoaster ride. Four days before the procedure I started with some Movicol stool softener and also 1 enema. Nothing happened. Luckily in the hospital they gave me another enema and Eureka. My bowls started moving and it took me four trips to the bathroom to relieve myself. Constipation is also one of the symptoms of endometriosis. And this is one of the worst symptoms for me. Your belly bloats up and the stool accumulates and gets hard. It’s very painful when you finally have to go. Sometimes the anus tears and bleeding occurs. Sleeplessness is also an issue. You have these up and down thoughts. Staying positive is hard and tenses your body. I only slept for 3 hours before the procedure. Taking a bath really helps me to release some stress and relax my body. I was so nervous and anxious. Friends and family sent me positive messages and that really helped a lot. We are not alone in this pain. I found out that two of my old friends dealt with the same illness. We don’t know this of each other because this illness is not visible, we do not seem sick or ill, but the pain is like getting an anus tattoo all the fucking time I bet you that. The pain makes you double folded on the ground and not being able to do your daily routine. We have to spread more awareness on this disease. Doctors don’t make the connections between the symptoms fast enough and millions of women walk around with this disease that spreads endlessly throughout our bodies. Something needs to be done about this. Our pain is real and is not between our ears. In the long run, this can lead to infertility, painful sex, pelvic floor muscle cramping, and even various cancers in the lower abdomen, ovaries and uterus. This is serious people.
Thank you for listening to my story. And all you strong women out there I feel you, stay strong.
We can beat this illness by spreading awareness and sharing our stories to get women diagnosed faster.
Love,
K.