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Update after surgery
On the 6th of September I went into hospital to have endometriosis excised and ovarian drilling, I was told it was pretty straight forward laparoscopic surgery. The only complication I was told about was bleeding, to a girl with a bleeding disorder I already thought bleeding would be an issue; this is where things got complicated. Unfortunately during the surgery the bleeding was more complex, while trying to cauterize the bleeding to an artery my ureter was actually burned off and urine was pooling within my abdomen. This wasn’t discovered until the 8th of September, after numerous CT scans, ultrasounds and x-rays as I was in agony. I was sent via ambulance to a bigger hospital. I was given another CT scan and had an emergency laparotomy to discover what the fluid was that was pooling within my abdomen; a sample was sent to the lab. My body went into shock I had developed pneumonia so the doctors decided to insert a central line into my neck and leave the breathing tube in and keep me sedated. Twelve hours later my sister and parents were called asking how long it would be until they could get to the hospital as they needed to take me back in for another laparotomy by an Urologist to insert a stent, reimplant my ureter into my bladder with the complications of losing my left kidney. Thankfully I was lucky and my kidney was fine. I spent another day in the ICU and about lunch time on the 10th of September (my 21st birthday) the sedation was lessened and the breathing tube was removed. I spent two weeks in hospital – I was only meant to be in hospital one night – numerous days on morphine and fentanyl pumps and other high dose pain killers. I was discharged on the 20th of September and went to my parent’s house as I couldn’t do anything as I was just in agony. Unable to life anything over 5kgs due to the multiple laparotomies. 10 days later I was readmitted to hospital for 5 days to try and control the pain, which unfortunately hasn’t lessoned even 3 months later.
Six weeks after being discharged I was actually readmitted due to chronic pain and vomiting I actually lost 4kg in a week due to not being able to keep anything down. I spent three days in there I was only released as I had to go in again into the operating theatre to get the stent removed at a different hospital two hours away. Since then, I have been on multiple pain killers which left be stuck in bed for the first 2 months, I have spent a lot of time asleep, seeing multiple doctors. My gyno who did the surgery decided the pain I am in is no longer related to gynaecological issues and I was sent to see a gastro doctor to see if it was related to my bowel, the specialist told me the first day I met with him he didn’t believe the pain was related to the bowel. Even though he didn’t think it was related he decided to do a colonoscopy and sent me for an MRI. The colonoscopy was clear which didn’t surprise him. I actually had the MRI last Monday and got the results on Thursday, they showed scar tissue on the left side where all the surgeries were (The endometriosis wasn’t excised on the right side as they were afraid of bleeding).
My GP has been amazing over this period; I started b12 shots again two weeks ago as it is shot due to the bleeding, ill need it three times a year. My GP referred me to an endometriosis specialist for a second opinion who I actually seen yesterday afternoon which has left me feeling sad and confused as what I want to do next.
He wants to do another surgery to clean out my abdomen but first see my haematologist to get her opinion on the precautions that need to be taken, do a blood test to see if my ovaries are working/how many eggs I may have. He thinks it might be a good idea to freeze my eggs. His concerned I may be going through early menopause. His only seen 2 people at my age go through it. I asked would a hysterectomy help if another surgery doesn't (as my GP and I were discussing it) and he said he was already thinking of it. One day I want kids. I'll go do the blood tests on Monday. It isn't something you should have to decide so young. If you’re going to have kids when you find the right person or if your even going to have a uterus next year. He also said he wasn't 100% sure what is causing the pain as it is odd it started after the first mirena was put in, he thought an infection could be there but it would of been seen in the other surgeries. He is going to have a think about it. It is heartbreaking to think about it. Having to decide am I going to be able to have kids. I knew since 19 I was going to struggle but thought I was ok with it but this is surreal. Today I am very angry, disappointed and upset; you honestly shouldn't have to deal with this stuff at my age. I am at a point where if a hysterectomy will give me a quality of life I would do it as at the moment I have none, I am on so many narcotics to get through the day.
Please make sure you know of all the complications with your surgery. I don't want this to happen to anyone else.
Six weeks after being discharged I was actually readmitted due to chronic pain and vomiting I actually lost 4kg in a week due to not being able to keep anything down. I spent three days in there I was only released as I had to go in again into the operating theatre to get the stent removed at a different hospital two hours away. Since then, I have been on multiple pain killers which left be stuck in bed for the first 2 months, I have spent a lot of time asleep, seeing multiple doctors. My gyno who did the surgery decided the pain I am in is no longer related to gynaecological issues and I was sent to see a gastro doctor to see if it was related to my bowel, the specialist told me the first day I met with him he didn’t believe the pain was related to the bowel. Even though he didn’t think it was related he decided to do a colonoscopy and sent me for an MRI. The colonoscopy was clear which didn’t surprise him. I actually had the MRI last Monday and got the results on Thursday, they showed scar tissue on the left side where all the surgeries were (The endometriosis wasn’t excised on the right side as they were afraid of bleeding).
My GP has been amazing over this period; I started b12 shots again two weeks ago as it is shot due to the bleeding, ill need it three times a year. My GP referred me to an endometriosis specialist for a second opinion who I actually seen yesterday afternoon which has left me feeling sad and confused as what I want to do next.
He wants to do another surgery to clean out my abdomen but first see my haematologist to get her opinion on the precautions that need to be taken, do a blood test to see if my ovaries are working/how many eggs I may have. He thinks it might be a good idea to freeze my eggs. His concerned I may be going through early menopause. His only seen 2 people at my age go through it. I asked would a hysterectomy help if another surgery doesn't (as my GP and I were discussing it) and he said he was already thinking of it. One day I want kids. I'll go do the blood tests on Monday. It isn't something you should have to decide so young. If you’re going to have kids when you find the right person or if your even going to have a uterus next year. He also said he wasn't 100% sure what is causing the pain as it is odd it started after the first mirena was put in, he thought an infection could be there but it would of been seen in the other surgeries. He is going to have a think about it. It is heartbreaking to think about it. Having to decide am I going to be able to have kids. I knew since 19 I was going to struggle but thought I was ok with it but this is surreal. Today I am very angry, disappointed and upset; you honestly shouldn't have to deal with this stuff at my age. I am at a point where if a hysterectomy will give me a quality of life I would do it as at the moment I have none, I am on so many narcotics to get through the day.
Please make sure you know of all the complications with your surgery. I don't want this to happen to anyone else.
I just had my second surgery last week all went somewhat well but nothing that she said she was going to do happened and she didnt remove an embedded ovary that was stuck to the pelvic wall. The same area in which I was having severe pain. Good news is I only had superficial Endometriosis meaning that the Pill has worked to suppress the Endo, bad news is the scar tissue was causing a bowel obstruction. Glad that was fixed because I was doing 3 enemas a week for 3 yrs because of the blockage.....argh
I have tried that actually. I should say that I probably didnt give it a fair shot.I guess I expected a miracle to happen. I still have it and should try it again.
I was on Amitriptalyne for 3 months and gained a lot of weight and I would wake up feeling like crap.
Right now I take Cymbalta for the depression and anxiety, Flexiril for my TMJ at night and Marvelon continuously which works wonderfulf for me.
I get really bad nerve pain. What bothers me the most is the hypersensitive skin patches that I get every now and then. I get them on my head, arms, stomach, hips and yesterday on my entire right leg below the knee to the ankle. It lasted all day but I am okay today. I wish I knew what triggered them. They feel like a sunburn, no rash and the skin is sensitive to touch even with clothes. Do you get this?
I have tried that actually. I should say that I probably didnt give it a fair shot.I guess I expected a miracle to happen. I still have it and should try it again.
I was on Amitriptalyne for 3 months and gained a lot of weight and I would wake up feeling like crap.
Right now I take Cymbalta for the depression and anxiety, Flexiril for my TMJ at night and Marvelon continuously which works wonderfulf for me.
I get really bad nerve pain. What bothers me the most is the hypersensitive skin patches that I get every now and then. I get them on my head, arms, stomach, hips and yesterday on my entire right leg below the knee to the ankle. It lasted all day but I am okay today. I wish I knew what triggered them. They feel like a sunburn, no rash and the skin is sensitive to touch even with clothes. Do you get this?
I am sorry to hear that you also live with nerve pain! Have you tried gabbapentin for it? I wish I knew the risks, I was only told bleeding would be a factor.
I totally understand. Same with me. I have severe nerve damage from my surgery. I guess I knew the risks and they outweighed the pain at the time.
Thank you!
I am sharing because I don't want this to happen to anyone else! I wasn't aware of the risks involved, now I live with chronic pain and have no quality of life.
I go see my new specialist Friday the 25th, he is schedualling another survery. I wont let this out to my family and friends but I am beyond scared, what if it happens again? I've also decided its the last try before pushing for a hysterectomy at 21 because I can't keep going in for surgeries. It's to depressing after seven not helping.
I am sharing because I don't want this to happen to anyone else! I wasn't aware of the risks involved, now I live with chronic pain and have no quality of life.
I go see my new specialist Friday the 25th, he is schedualling another survery. I wont let this out to my family and friends but I am beyond scared, what if it happens again? I've also decided its the last try before pushing for a hysterectomy at 21 because I can't keep going in for surgeries. It's to depressing after seven not helping.
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