Becoming A Hyster-Sister

I have decided to join a special and strong group of woman who have had hysterectomies. My endo decided to rear its ugly head after four years of being somewhat pain-free and regular. The first part of this decision involved social norms and motherhood.

I was brought up in a Christian home where it was silently instilled in me that I would grow up and get married then have children. According to my mom, I would be cursed with a daughter like me. LOL But that is not how my story unfolded. Diagnosed with endometriosis at 21, I was urged to have children way too early. All I could say is NO. I was not married and didn’t have the financial means. As time passed, the doctors urges became louder yet my situation remained the same. It warped my mind. Every guy I dated was instantly inspected for daddy qualities. I am pretty positive that my messed up mindset had a nasty effect on my relationships.

Then I got married…I really thought that we would have a white picket fence life. I was still young enough to conceive and at this point still had one good fallopian tube. Plus, he was open to invitro fertilization or even adoption. But then he got sick. He contracted Lyme disease. At the same time, I was diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia. He was a medical student and after researching Lyme he became very concerned that he would pass it to a child or me. We stopped having sex. We also discussed what it would be like to realistically raise a child. Two sick parents. That sounds like fun huh.

His Lyme made my endo look like a mere inconvenience. His doctors didn’t know if he would get better but chances were he would get worse. He did. He now resides in a wheel chair and is about to embark on brain surgery due to infection and lesions. My endo remained my monster under the bed. I had excision surgery in 2012 and that had helped until recently. But I still had issues with CFS.

I began to look at the situation from my unborn child’s eyes. Even if we had stayed together, dad would be wheel chair bound, in-and-out of the hospital and mom would struggle to get out of bed, walk upright or do anything without the assistance of pain medication. What fun!

So maybe I wasn’t meant to be a mother. That is a really though pill to swallow. But maybe infertility goes hand-in-hand with endometriosis because it is in the best interest of the child. We know there is a genetic component, making it highly likely to be passed down to female children. And, don’t they deserve a mom who has energy and isn’t in pain constantly? I am not saying that this applies to all women with endo or even any other woman other than myself. Situations and support systems vary from woman to woman.

So, step one? Kick my anxiety and depression’s ass. I started on medication about a week ago. I stopped crying nonstop. Then, I am going to find a counselor who specializes in this sort of thing and can mentally prepare me for losing my lady parts. Step 3 Find a doctor in Arizona who is well known and uses excision. Then do it! 

Becoming A Hyster-Sister

I have decided to join a special and strong group of woman who have had hysterectomies. My endo decided to rear its ugly head after four years of being somewhat pain-free and regular. The first part of this decision involved social norms and motherhood.

I was brought up in a Christian home where it was silently instilled in me that I would grow up and get married then have children. According to my mom, I would be cursed with a daughter like me. LOL But that is not how my story unfolded. Diagnosed with endometriosis at 21, I was urged to have children way too early. All I could say is NO. I was not married and didn’t have the financial means. As time passed, the doctors urges became louder yet my situation remained the same. It warped my mind. Every guy I dated was instantly inspected for daddy qualities. I am pretty positive that my messed up mindset had a nasty effect on my relationships.

Then I got married…I really thought that we would have a white picket fence life. I was still young enough to conceive and at this point still had one good fallopian tube. Plus, he was open to invitro fertilization or even adoption. But then he got sick. He contracted Lyme disease. At the same time, I was diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia. He was a medical student and after researching Lyme he became very concerned that he would pass it to a child or me. We stopped having sex. We also discussed what it would be like to realistically raise a child. Two sick parents. That sounds like fun huh.

His Lyme made my endo look like a mere inconvenience. His doctors didn’t know if he would get better but chances were he would get worse. He did. He now resides in a wheel chair and is about to embark on brain surgery due to infection and lesions. My endo remained my monster under the bed. I had excision surgery in 2012 and that had helped until recently. But I still had issues with CFS.

I began to look at the situation from my unborn child’s eyes. Even if we had stayed together, dad would be wheel chair bound, in-and-out of the hospital and mom would struggle to get out of bed, walk upright or do anything without the assistance of pain medication. What fun!

So maybe I wasn’t meant to be a mother. That is a really though pill to swallow. But maybe infertility goes hand-in-hand with endometriosis because it is in the best interest of the child. We know there is a genetic component, making it highly likely to be passed down to female children. And, don’t they deserve a mom who has energy and isn’t in pain constantly? I am not saying that this applies to all women with endo or even any other woman other than myself. Situations and support systems vary from woman to woman.

So, step one? Kick my anxiety and depression’s ass. I started on medication about a week ago. I stopped crying nonstop. Then, I am going to find a counselor who specializes in this sort of thing and can mentally prepare me for losing my lady parts. Step 3 Find a doctor in Arizona who is well known and uses excision. Then do it! 

My Story

I always had painful periods and was lead to believe that it was just one of those things that women have to deal with. But the pain continued to get worse and worse. Of course, I still thought it to be normal. At the age of 18, I had immense pain on the right side of my pelvis to the point that I would pass out, literally dropping to the floor.

I went in for my first laparoscopy and they found my intestine wrapped around my ovary, choking it. However, they didn't find any endo. I was unfortunate enough to get a horrible surgeon, Dr. Cynthia Phillips who is no longer in practice. (Thank God!) She perforated my intestine and sent me home bleeding internally. Twelve hours later my mom rushed my back to the hospital because my lips literally peeled off due to lack of oxygen. Another 12 hours passes and I was back in the OR having emergency surgery that left a zipper like scar up my belly.

Two years later, I go to the ER because of horrific pain. They noticed a tumor or cyst on my right ovary and refer me to a OBGYN. Initially, they thought it to be a dermoid tumor – a very odd tumor that is benign but has teeth and hair in it. GROSS! As you may have guessed, that was not the case. In fact, it was a huge lump of endo. I remember being very upset because I knew a little about endo and knew that there was no cure.

As time went on, my endo got worse. I was told if I wanted to have children I better do it fast. I thought WTF! I'm only 22, have no boyfriend, am still in college and broke as a joke. How the heck am I going to get pregnant and better yet how will I pay for this kid. And, should I really have a child just for the sake of having one?

This messed with my head beyond belief and every guy I dated I immediately judged as to whether he was daddy material. The answer was always no.

I opted for Lupron instead of pregnancy. I got a shot every three months for six months. I don't remember this period very well. I think I blocked it out because I was so depressed, angry and alone with my disease. My mother remembers it well and reminds me of how mean and moody I was. The Lupron helped for a while and I had about two years of being relatively pain free.

After a while, I became indifferent about my disease. I was sick of dealing with it and I had lost my insurance so I couldn't get treatment anyway. Fortunately, my best friend also had the condition and helped me out when I was in extreme pain.

I let a couple of years pass, finished college, got a good job and INSURANCE. By then, my best friend had found a world class group of doctors and I followed her lead. Last February Dr. Mangal spent five hours removing my endo and my appendix. I was referred to Dr. Mathias who has done his own primary research and clinical trials and found that woman with endo have mini seizures in their colons. These seizures excite the nerves and aggravate the disease. He also found that we are insulin resistant and the sugar in our blood furthers the condition.

He put me on a low glycemic diet, meds for the seizures, Omega-3, Super vitamins and olive oil. In addition, I went on Lupron. However, this time it would be daily injections and add back therapy to cut down on the side effects.

I have to say that shooting up every morning is not the best part of waking up. But the thought of having children is.

So here I am coping with the hot flashes, crying and overall feeling crappy. Hoping that whoever reading this post realizes that they are not alone.