My story began as a tomboy in Michigan with a mother that regretted having children too young. My sister and I heard the same message over and over, "Go to college, start a career, get married and then start a family."
The other clear message in my strong Christian family was, "No sex before marriage."
My periods have always been excruciatingly painful. I spent days each month writhing in bed, envisioning ways to chop out my entire abdomen, and wondering why God would make pain and bleeding part of our bodies' design.
In high school, a friend of mine said her doctor prescribed birth control for her painful periods. I asked my mom about doing the same. She freaked out, cried and yelled, accused me of wanting to have sex (I had never even made out with a boy at this point), and told me to take more Ibuprofen.
In college, I met a girl that had a name for her painful periods: Endometriosis. Her doctor had injected regular birth control shots of Depo-Provera to prevent her from having periods since the age of 14. At the time I had no idea how relevant her experience would become in my life.
I took a mental note, but listened to my mother. I continued gulping Advil every month, graduated college, and started my career. Finally on my own insurance, I consulted a doctor and went on birth control. It helped somewhat, although I still consumed enough Advil that I considered buying Pfizer stock. At least the pills gave me predictability to plan around my heavy periods.
I got married in 2003 at age 25. Sex was painful to the point that it became a chore that I suffered through to satisfy my partner. My doctor indicated endometriosis was a possible explanation for my painful periods and sex, but it wasn't much more than a comment at my annual visit. He also said that my uterus was tilted backwards, a condition common in women with endometriosis.
My husband and I decided to start trying to have children in 2006 so I stopped using birth control. Sex became more painful, but by July 2007 I was pregnant. We made the mistake of telling our families. I miscarried a few weeks later. My cousin sent me a card empathizing, sharing that she and two others in our family had struggled with miscarriages and infertility as well. I felt less alone and wondered how much of my struggle was genetic.
We tried again. I miscarried again.
No one knew of our second miscarriage. My mother asked often if we were still trying and reminded me how much they wanted grandchildren. My sister had no children by choice, and I was their only hope. My mother pressed for answers. I felt like I was being constantly attacked by paparazzi undeterred by my replies of "No comment!" I insisted to my mother that I did not want to talk about it. She kept pushing, appalled that I wouldn't trust her, and deeply offended that I didn't want to share. She cried and got upset. But it was my battle, not hers. I screamed that I did not want to talk about it and for her to stop asking. Then my cat bit her (and I secretly thanked him for coming to my defense).
The whole situation was so painful to me, and maybe I partially blamed my mother for my lack of babies. What if I had tried having children when I was younger? Could I have gotten pregnant then? What if she had listened to me about going on birth control? Could it have slowed the growth of my endometriosis? At this point my Depo-Provera friend had three beautiful babies. She had gotten pregnant immediately after stopping the shots; she was even on IUD birth control when she got pregnant with her third! Many people told me my miscarriage was because of stress. I worked very hard and had a successful, yet stressful career. What if the importance of career had not been drilled so deeply into my head growing up?
And the truth is we were trying, but the pain of sex was growing unbearable. I often ended up crying and clutching my abdomen afterward, wondering what it would be like to enjoy sex. My husband did not want to hurt me. At times he was sympathetic; other times he thought I was faking to get out of sex. He even thought I was cheating at one point. I was not faking or cheating, but the pain did make me try to avoid sex. The joy of making love for me was getting it over with and hoping I would get pregnant so I wouldn't have to do it anymore.
It was awful.
My husband began to believe my pain when we saw a documentary on TV about a girl with endometriosis and similar pain during sex. Endometriosis was now becoming a repeating word in my life that was hard to ignore.
I felt bad for letting my husband down, not satisfying him. And regardless of how much we tried in subsequent years, I never got pregnant again.
Without intimacy, our marriage (to me) evolved into a close friendship with an excellent roommate. I can't say how much was the endo and how much other factors contributed, but I fell out of love with him. And to me, although he is an amazing person that I love dearly as a friend, without romance there is no marriage. I left him in 2010 and we filed for divorce shortly after.
On a trip to Hawaii, I met my current boyfriend. Despite a long distance relationship, we agreed to try having children fairly quickly as we were both getting older and knew odds were against us. He already had two boys, but had always hoped for a girl. We also agreed to figure out a way to bridge the gap between California and Hawaii and move in together as soon as we could.
Sex wasn't as painful with him. I don't know why. Everyone's size and shape is different, and I also felt very romantically in love with him.
We tried to conceive for a year during our trips visiting each other. No baby.
I tried to rejoice in career successes and fill the childless void with travel, volunteering, and adventures for the non-pregnant like scuba, surfing, skydiving, and roller-coasters. Yet every month came like a bloody punch in the gut, reminding me that God doesn't think I am fit to have children. Did He think I would not make a good mother? Why didn't He want me to have children?
My mother called and told me that another second cousin was having a hysterectomy because her endometriosis had gotten so bad. My mother said it with such pity, the same pity as when she had about my miscarriage, that I told her nothing of my struggle. I did not want to be pitied. I did, however, take another mental note about endometriosis and the possible genetic link to my experience. I also contacted my cousin to gain some insight.
Near Mother's Day in 2012, I felt a pain near my right ovary. My abdomen was swollen and tender. I felt faint and very cold. I hate doctor visits, but something was wrong. The doctor said it could be an endometriosis flare up or possibly Pelvic Inflammatory Disease (PID). PID has many causes, including STDs. He took samples for testing and advised results would be available in a few days.
I called my long-distance boyfriend. Instead of being sympathetic to more womanly problems near the most painful holiday in my life, he freaked and accused me of sleeping around and getting STDs. I was crushed.
All the tests came back negative. No STDs. A subsequent visit to my gynecologist revealed a cyst on my right ovary had burst and I had been essentially bleeding internally. The blood had irritated the surrounding organs and my ovary and uterus had become enlarged and inflamed. The blood would gradually reabsorb and I would be fine.
My boyfriend was apologetic and we reconciled. He moved to California and we continued trying to conceive. No pregnancy.
At 34, I finally went to a fertility doctor. He agreed endometriosis was the likely cause of our challenges considering my ex-husband and boyfriend had had children in previous relationships. He advised a laparoscopy to confirm endometriosis and burn as much of it off with a laser as possible. I scheduled the first surgery and hospital visit of my life for January 2013.
The laparoscopy confirmed what I had suspected for years. I had endometriosis. He had tried to remove as much as he could, but advised a treatment of Lupron for 6 months. Lupron would put me in menopause and hopefully shrink the endometriosis so we could try for a baby again immediately after. I read many controversial things about Lupron and did not want to lose another 6 months of time if I could try right away. I do not know if it was the right decision, but I declined Lupron.
My boyfriend and I tried again for 9 more months. No baby.
I turned 35 in September 2013. It felt like the end. 35 is the terrible age where pregnancy becomes even more impossible and where reality began to set in that maybe I would never be a mother. I was more and more depressed each month, crying uncontrollably, my hope shriveling up along with most of my eggs. I thought about the future with no family, an old spinster alone at a nursing home with no one coming to visit, no heirs to the career wealth I had worked so hard to build.
My boyfriend was 48. Even if I got pregnant now, we would be old parents with a complicated life.
A fork in the road...keep trying or give up and stop the pain with a hysterectomy?
I prayed for answers. If God was answering back, all I could hear was that I was not worthy of being a mother. I believe that everything happens for a reason, but it was so hard to find the reason in this. This is one area of my life that I could not control with hard work and persistence.
I researched online and consulted relatives and friends around the world to arrive at my current plan:
1. Try natural and alternative methods for improving my endometriosis in one last ditch attempt to help ease the pain, moods, and fertility. This includes the Endo Diet, acupuncture, Traditional Chinese Medicine, massage, and trying to minimize stress.
2. Find an outlet to share experiences with others in similar situations, and share escapes--ways to cope. Hence this website.
3. Research and promote awareness to help cure and eliminate endometriosis forever. I want to be an Ex-Endo Sufferer and hope that we can all be Endo Exes someday.
If you were able to make it through that entire post, I would love to hear your thoughts and experiences. Please post comments!
Let the healing begin...
The other clear message in my strong Christian family was, "No sex before marriage."
My periods have always been excruciatingly painful. I spent days each month writhing in bed, envisioning ways to chop out my entire abdomen, and wondering why God would make pain and bleeding part of our bodies' design.
In high school, a friend of mine said her doctor prescribed birth control for her painful periods. I asked my mom about doing the same. She freaked out, cried and yelled, accused me of wanting to have sex (I had never even made out with a boy at this point), and told me to take more Ibuprofen.
In college, I met a girl that had a name for her painful periods: Endometriosis. Her doctor had injected regular birth control shots of Depo-Provera to prevent her from having periods since the age of 14. At the time I had no idea how relevant her experience would become in my life.
I took a mental note, but listened to my mother. I continued gulping Advil every month, graduated college, and started my career. Finally on my own insurance, I consulted a doctor and went on birth control. It helped somewhat, although I still consumed enough Advil that I considered buying Pfizer stock. At least the pills gave me predictability to plan around my heavy periods.
I got married in 2003 at age 25. Sex was painful to the point that it became a chore that I suffered through to satisfy my partner. My doctor indicated endometriosis was a possible explanation for my painful periods and sex, but it wasn't much more than a comment at my annual visit. He also said that my uterus was tilted backwards, a condition common in women with endometriosis.
My husband and I decided to start trying to have children in 2006 so I stopped using birth control. Sex became more painful, but by July 2007 I was pregnant. We made the mistake of telling our families. I miscarried a few weeks later. My cousin sent me a card empathizing, sharing that she and two others in our family had struggled with miscarriages and infertility as well. I felt less alone and wondered how much of my struggle was genetic.
We tried again. I miscarried again.
No one knew of our second miscarriage. My mother asked often if we were still trying and reminded me how much they wanted grandchildren. My sister had no children by choice, and I was their only hope. My mother pressed for answers. I felt like I was being constantly attacked by paparazzi undeterred by my replies of "No comment!" I insisted to my mother that I did not want to talk about it. She kept pushing, appalled that I wouldn't trust her, and deeply offended that I didn't want to share. She cried and got upset. But it was my battle, not hers. I screamed that I did not want to talk about it and for her to stop asking. Then my cat bit her (and I secretly thanked him for coming to my defense).
The whole situation was so painful to me, and maybe I partially blamed my mother for my lack of babies. What if I had tried having children when I was younger? Could I have gotten pregnant then? What if she had listened to me about going on birth control? Could it have slowed the growth of my endometriosis? At this point my Depo-Provera friend had three beautiful babies. She had gotten pregnant immediately after stopping the shots; she was even on IUD birth control when she got pregnant with her third! Many people told me my miscarriage was because of stress. I worked very hard and had a successful, yet stressful career. What if the importance of career had not been drilled so deeply into my head growing up?
And the truth is we were trying, but the pain of sex was growing unbearable. I often ended up crying and clutching my abdomen afterward, wondering what it would be like to enjoy sex. My husband did not want to hurt me. At times he was sympathetic; other times he thought I was faking to get out of sex. He even thought I was cheating at one point. I was not faking or cheating, but the pain did make me try to avoid sex. The joy of making love for me was getting it over with and hoping I would get pregnant so I wouldn't have to do it anymore.
It was awful.
My husband began to believe my pain when we saw a documentary on TV about a girl with endometriosis and similar pain during sex. Endometriosis was now becoming a repeating word in my life that was hard to ignore.
I felt bad for letting my husband down, not satisfying him. And regardless of how much we tried in subsequent years, I never got pregnant again.
Without intimacy, our marriage (to me) evolved into a close friendship with an excellent roommate. I can't say how much was the endo and how much other factors contributed, but I fell out of love with him. And to me, although he is an amazing person that I love dearly as a friend, without romance there is no marriage. I left him in 2010 and we filed for divorce shortly after.
On a trip to Hawaii, I met my current boyfriend. Despite a long distance relationship, we agreed to try having children fairly quickly as we were both getting older and knew odds were against us. He already had two boys, but had always hoped for a girl. We also agreed to figure out a way to bridge the gap between California and Hawaii and move in together as soon as we could.
Sex wasn't as painful with him. I don't know why. Everyone's size and shape is different, and I also felt very romantically in love with him.
We tried to conceive for a year during our trips visiting each other. No baby.
I tried to rejoice in career successes and fill the childless void with travel, volunteering, and adventures for the non-pregnant like scuba, surfing, skydiving, and roller-coasters. Yet every month came like a bloody punch in the gut, reminding me that God doesn't think I am fit to have children. Did He think I would not make a good mother? Why didn't He want me to have children?
My mother called and told me that another second cousin was having a hysterectomy because her endometriosis had gotten so bad. My mother said it with such pity, the same pity as when she had about my miscarriage, that I told her nothing of my struggle. I did not want to be pitied. I did, however, take another mental note about endometriosis and the possible genetic link to my experience. I also contacted my cousin to gain some insight.
Near Mother's Day in 2012, I felt a pain near my right ovary. My abdomen was swollen and tender. I felt faint and very cold. I hate doctor visits, but something was wrong. The doctor said it could be an endometriosis flare up or possibly Pelvic Inflammatory Disease (PID). PID has many causes, including STDs. He took samples for testing and advised results would be available in a few days.
I called my long-distance boyfriend. Instead of being sympathetic to more womanly problems near the most painful holiday in my life, he freaked and accused me of sleeping around and getting STDs. I was crushed.
All the tests came back negative. No STDs. A subsequent visit to my gynecologist revealed a cyst on my right ovary had burst and I had been essentially bleeding internally. The blood had irritated the surrounding organs and my ovary and uterus had become enlarged and inflamed. The blood would gradually reabsorb and I would be fine.
My boyfriend was apologetic and we reconciled. He moved to California and we continued trying to conceive. No pregnancy.
At 34, I finally went to a fertility doctor. He agreed endometriosis was the likely cause of our challenges considering my ex-husband and boyfriend had had children in previous relationships. He advised a laparoscopy to confirm endometriosis and burn as much of it off with a laser as possible. I scheduled the first surgery and hospital visit of my life for January 2013.
The laparoscopy confirmed what I had suspected for years. I had endometriosis. He had tried to remove as much as he could, but advised a treatment of Lupron for 6 months. Lupron would put me in menopause and hopefully shrink the endometriosis so we could try for a baby again immediately after. I read many controversial things about Lupron and did not want to lose another 6 months of time if I could try right away. I do not know if it was the right decision, but I declined Lupron.
My boyfriend and I tried again for 9 more months. No baby.
I turned 35 in September 2013. It felt like the end. 35 is the terrible age where pregnancy becomes even more impossible and where reality began to set in that maybe I would never be a mother. I was more and more depressed each month, crying uncontrollably, my hope shriveling up along with most of my eggs. I thought about the future with no family, an old spinster alone at a nursing home with no one coming to visit, no heirs to the career wealth I had worked so hard to build.
My boyfriend was 48. Even if I got pregnant now, we would be old parents with a complicated life.
A fork in the road...keep trying or give up and stop the pain with a hysterectomy?
I prayed for answers. If God was answering back, all I could hear was that I was not worthy of being a mother. I believe that everything happens for a reason, but it was so hard to find the reason in this. This is one area of my life that I could not control with hard work and persistence.
I researched online and consulted relatives and friends around the world to arrive at my current plan:
1. Try natural and alternative methods for improving my endometriosis in one last ditch attempt to help ease the pain, moods, and fertility. This includes the Endo Diet, acupuncture, Traditional Chinese Medicine, massage, and trying to minimize stress.
2. Find an outlet to share experiences with others in similar situations, and share escapes--ways to cope. Hence this website.
3. Research and promote awareness to help cure and eliminate endometriosis forever. I want to be an Ex-Endo Sufferer and hope that we can all be Endo Exes someday.
If you were able to make it through that entire post, I would love to hear your thoughts and experiences. Please post comments!
Let the healing begin...