Scared Mom, Full of Endometriosis and Cysts – Tina’s Story

I’m sitting in front of my kid’s school crying in my van – something I’ve done a lot this week. I spent my teen years and 20s dealing with painful heavy periods that were anything but regular. 28 day cycle…what’s that? They put me on the pill young to try to control the bleeding and the pain.

I married at 25 – wanting to be a mom all my life. We started trying to conceive on our honeymoon. Five years later after many many tears and negative pregnancy tests we discussed IVF. After finding out that my husband and I both seem to have issues we decided we couldn’t handle more heart break and decided to start the adoption process. We have since adopted two amazing children that I love more than I ever thought possible.

In 2006 I had to have my gall bladder removed after bring sick for over a year. Then in 2008 an balloon ablation to try to control my excessive pain and bleeding. Then a year or two later another ablation – this time a rollerball ablation.

In December 2011 I started having excruciating back and side pain. After escarole trips to emergency where they did nothing but give me morphine, I finally got an ultrasound which found a massive cyst on my left ovary.

A thirty minute surgery was scheduled to remove my ovary and my tubes. Three hours later I woke up violently vomiting up find out the surgery was not successful. They got in there and found out I had endometriosis everywhere – attached to my bowels, bladder, ovaries, uterus.

The doctor said it was so bad she called a fellow obgyn in with her to look at it and they looked around in me for 2.5 hours taking pictures. They couldn’t get to my tube or ovary – all they could do was drain the 12cm. cyst. After that she put me on visanne to try and slow the growth of the endometriosis.

Why did the surgeons not see it when removing my gall bladder? For the last couple years I’ve been treated like I’m crazy, or weak, or whining and I am none of those things.

Here I am four months later, I’ve had a light period since December 1st – so 49 days and counting) and I just found out the cyst they drained is back and already 8cm. They feel that a full hysterectomy, removing my uterus and ovaries, is the way to go at this point. It seems like it will be high risk because of all the endometriosis dissections that will need to be made.

They won’t be able to do it laparoscopically and will need to do the large incision across my stomach. They’ve said I will need to go on hormones because I am only 40 and menopause would likely hit hard because I am not close to menopause yet.

I’ve found so many horror stories online of bad post-op recovery and returning endometriosis due to hormones that I’m left crying every day not knowing what to do. My biggest fear is not waking up and leaving my kids without a mom. My second fear is having yet another unsuccessful surgery. My third fear is bring horribly sick post op again. My fourth concern is asking for help during recovery as my husband works long hours and my kids are eight and eleven and have busy lives that I need to keep going while I’m out. I’m also concerned about being off work this long.

Can anyone share words of wisdom or encouragement as I need to come to terms with things and make a decision. I need to make a list of questions to ask my surgeon. I need to stop weeping uncontrollably. Thank you for this website!


in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

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