Endo Surgery 1 Year later: Recovery, Complications, Mistakes, and Upcoming Surgery

 

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Background Story: April 16th, 2015 was the day I went into the hospital for a laparoscopy surgery to verify I had endometriosis and to clean all the excess tissue that was growing in bad places.

I arrived at the hospital for about 8 am with my grandma and my aunt; my parents were away when I received a late-notice call with the surgery date (about 3 days prior).  By 1pm, I was wheeled into the operating room. In the operating room I spoke with the anesthesiologist and the next thing I knew I was trying to fight off the anesthesia.

Next, I woke up in the recovery room-delirious but conscious enough I was able to talk to the nurse and hear things that were happening around me. I asked her for the time, and it was 3:30 pm. Longer than expected. I tried to sit up because I did not feel my stomach or the bandages but she held me down and asked me if I am in pain. Now, I had a laparoscopy surgery on my stomach…but the only part that was excruciating is my right shoulder. She elevated it and put a pillow under it.

After I woke-up in another room all by myself. It was about 5pm and the nurse from that room was checking my blood pressure and told me it was very low…and that I sleep a lot. Next thing-I am waking up again about an hour and a half later with the voices of my aunt and my grandma walking down the hallway. That night, everything was okay and I was released from the hospital and went home straight to bed.

Complications: I immediately knew something was wrong when the doctor told me I would be able to return to the ice the following week. However, I did not know what went wrong until a month later (late May). That is when I found out my case was one in a million and the surgery did not work.

When they were trying to get in, my stomach was contracting and they could not get proper images or see what they were doing. After several attempts they had to stop or it would have become risky especially with how low my blood pressure was dropping.

Mistakes: After I was told that I was “One in a Million,” I was sent for a Pelvic MRI. One test I knew in the back of my mind would not show anything but I still went. Sure enough, like every other test I was sent for (over 5+ years), nothing showed up except excess liquid in my Pelvic area. ***The liquid has yet to be explained by a doctor.

***Side Note*** Endometriosis is NOT seen in medical tests EXCEPT surgery. With symptoms, side treatment (birth control/pre-menopause), ruling everything out and if you have ovarian cysts doctors can have a good estimate but no confirmation until the surgery is performed.

***Side Note 2*** If nothing shows up during laparoscopy surgery, it DOES NOT mean you do not have Endo. In a lot of cases, the tissue grows in area surgeons are unable to get too.

After I was told that nothing showed up in the test I gave up. That was it. I was on to the next doctor, for the next diagnosis. This became my biggest mistake. I was fine until December 2015. In December I got a really heavy period and the pain started about a week before the period and lasted several days after the bleeding stopped. Now, I normally get a bad period every once in a while, so this one did not bother me.

January came along. I was at the Montreal Canadiens VS New Jersey Devils hockey game on a Tuesday night, with a close friend when I started to feel unwell. The pain was getting really bad that I could barely stand after first period. By the end of the game my friend was really worried. The bus ride home after was brutal. I was barely able to stay focused and my skin was extremely white. He thought he would have to drive me home but I put it off knowing I would get home okay…but I knew it would be close. Because of the pain and the symptoms (I was throwing up several times a day), I missed several classes that week of school. That weekend I had a skating competition, and from the start I was unable to focus. I competed two routines in the same night. The first one was the best of the two but anyone who knew me really well, knew something was wrong.

This is where the next mistake came in: I just came back from the Dominican Republic (the Monday)–day before the pain started at the hockey game. I thought it had something to do with the stress of starting school, work, skating, competition…or even something I ate on vacation…I never put the links together.

A few days after my period in January I saw the doctor and he AGREED that birth control (3 months straight) is no longer beneficial…and INSTEAD I should have ANOTHER surgery. But, he does not feel comfortable redoing it, so he gave me a referral for another doctor…but because I did not have pain in February and only one severe day in March I put the appointment off. I mean who wants to go through ANOTHER surgery for nothing?

March 31st came around and I was in worse pain then I was that week in January and my insides were flared, that the swelling made me look 7 months pregnant. I ended up caving in and calling another doctor and made an appointment for April 21st to find out about the surgery.

I got my period a few days late and after a day of almost no bleeding it was done. The pain went away and returned earlier this week (Thursday night April 14th). It was blindsiding pain like I had during the hockey game. The only difference was, instead of a hockey game, I was coaching figure skating…and later had to skate. The coaching was brutal especially with my stomach flaring making me look 9 months pregnant, but the skating helped slightly.

The following day I went to the rink with the pain even worse then the night before. I ended up falling asleep there and then before I skated I went to the pharmacy to pick up one of the many types of pain killers doctors have prescribed me. But I saw Midol…that I could take to reduce the swelling and decided to try that because most of the pain was from the swelling squeezing my organs together.

Upcoming Surgery: Today is exactly 1 year since the surgery…it is also the third day in a row since the swelling and the pain started. I am unable to go longer then a few hours without any pain meds, once the effect is done it sends me crashing into a ball on the floor. The bright side is I am seeing the surgeon on Thursday April 21st and hoping to get an estimate date of when the next surgery will take place.

There are a few different things to note:

-2010 I was a stage 2 with Endometriosis *based on the symptom location*

-2015 Doctors’ believed I was at a Stage 3 with Endometriosis-especially AFTER the surgery.

While the surgery is there to help with the pain…One things doctors NEVER tell you is, there is a high chance you will need at least one more surgery.

The surgery is more of a temporary cure and some people end up having one as soon as two months later.

The surgery risks the Endo to rapidly spread.

And while it has been exactly a year since my last surgery, the doctors believe it has spread, and that the second surgery should have been done months ago.

Endometriosis is NOT only found on the uterus and ovaries. It can literally affect any internal organ…even the brain in extreme cases.

Doctors have told me (recently) that in my case it is affecting the intestines, bladder, ovaries, uterus and kidneys.

The kidney was recently added when I kept getting infection symptoms, major back pain and peeing blood…but there was NO sign of an infection in the kidneys or urinary tract system.

Advice: Those who suffer from any menstruation pain…it is NOT considered normal and you should be checked out as soon as possible. Surgery is the only true confirmation, but medical tests rule out other possible diagnosis and there are other options that doctors will try BEFORE the surgery. Most cases take up to 7 years to get diagnosed.

This is why I decided to come out with my story on Endometriosis, even with how uncomfortable it has been doing so. The more people know, the more they can get helped and not suffer as long as many people have.

Please Read the previously published post: “Endometriosis: The Fear of Pregnancy

To know more about Endometriosis: Click Here

 

 

 

 

 

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