Infertility: Helping Others Understand
A GUIDE FOR FAMILY AND FRIENDS
I want to share my feelings about infertility with you, because I want you to understand my struggle. I know that understanding infertility is difficult; there are times when it seems even I don't understand. This struggle has provoked intense and unfamiliar feelings in me and I fear that my reactions to these feelings might be misunderstood. I hope my ability to cope and your ability to understand will improve as I share my feelings with you. I want you to understand.
You may describe me this way: obsessed, moody, helpless, depressed, envious, too serious, obnoxious, aggressive, antagonistic, and cynical. These aren't very admirable traits; no wonder your understanding of my infertility is difficult. I prefer to describe me this way: confused, rushed and impatient, afraid, isolated and alone, guilty and ashamed, angry, sad and hopeless, and unsettled.
My infertility makes me feel confused. I always assumed I was fertile. I've spent years avoiding pregnancy and now it seems ironic that I can't conceive. I hope this will be a brief difficulty with a simple solution such as poor timing. I feel confused about whether I want to be pregnant or whether I want to be a parent. Surely if I try harder, try longer, try better and smarter, I will have a baby.
My infertility makes me feel rushed and impatient. I learned of my infertility only after I'd been trying to become pregnant for some time. My life-plan suddenly is behind schedule. I waited to become a parent and now I must wait again. I wait for medical appointments, wait for tests, wait for treatments, wait for other treatments, wait for my period not to come, wait for my partner not to be out of town and wait for pregnancy. At best, I have only twelve opportunities each year. How old will I be when I finish having my family?
My infertility makes me feel afraid. Infertility is full of unknowns, and I'm frightened because I need some definite answers. How long will this last? What if I'm never a parent? What humiliation must I endure? What pain must I suffer? Why do drugs I take to help me, make me feel worse? Why can't my body do the things that my mind wants it to do? Why do I hurt so much? I'm afraid of my feelings, afraid of my undependable body and afraid of my future.
My infertility makes me feel isolated and alone. Reminders of babies are everywhere. I must be the only one enduring this invisible curse. I stay away from others, because everything makes me hurt. No one knows how horrible is my pain. Even though I'm usually a clear thinker, I find myself being lured by superstitions and promises. I think I'm losing perspective. I feel so alone and I wonder if I'll survive this.
My infertility makes me feel guilty and ashamed. Frequently I forget that infertility is a medical problem and should be treated as one. Infertility destroys my self-esteem and I feel like a failure. Why am I being punished? What did I do to deserve this? Am I not worthy of a baby? Am I not a good sexual partner? Will my partner want to remain with me? Is this the end of my family lineage? Will my family be ashamed of me? It is easy to lose self-confidence and to feel ashamed.
My infertility makes me feel angry. Everything makes me angry, and I know much of my anger is misdirected. I'm angry at my body because it has betrayed me even though I've always taken care of it. I'm angry at my partner because we can't seem to feel the same about infertility at the same time. I want and need an advocate to help me. I'm angry at my family because they've always sheltered and protected me from terrible pain. My younger sibling is pregnant; my mother wants a family reunion to show off her grandchildren and my grandparents want to pass down family heirlooms. I'm angry at my medical caregivers, because it seems that they control my future. They humiliate me, inflict pain on me, pry into my privacy, patronize me, and sometimes forget who I am. How can I impress on them how important parenting is to me? I'm angry at my expenses; infertility treatment is extremely expensive. My financial resources may determine my family size. My insurance company isn't cooperative, and I must make so many sacrifices to pay the medical bills. I can't miss any more work, or I'll lose my job. I can't go to a specialist, because it means more travel time, more missed work, and greater expenses. Finally, I'm angry at everyone else. Everyone has opinions about my inability to become a parent. Everyone has easy solutions. Everyone seems to know too little and say too much.
My infertility makes me feel sad and hopeless. Infertility feels like I've lost my future, and no one knows of my sadness. I feel hopeless; infertility robs me of my energy. I've never cried so much or so easily. I'm sad that my infertility places my marriage under so much strain. I'm sad that my infertility requires me to be so self-centered. I'm sad that I've ignored many friendships because this struggle hurts so much and demands so much energy. Friends with children prefer the company of other families with children. I'm surrounded by babies, pregnant women, playgrounds, baby showers, birth stories, kids' movies, birthday parties and much more. I feel so sad and hopeless.
My infertility makes me feel unsettled. My life is on hold. Making decisions about my immediate and my long-term future seems impossible. I can't decide about education, career, purchasing a home, pursuing a hobby, getting a pet, vacations, business trips and houseguests. The more I struggle with my infertility, the less control I have. This struggle has no timetable; the treatments have no guarantees. The only sure things are that I need to be near my partner at fertile times and near my doctor at treatment times. Should I pursue adoption? Should I take expensive drugs? Should I pursue more specialized and costly medical intervention? It feels unsettling to have no clear, easy answers or guarantees.
Occasionally I feel my panic subside. I'm learning some helpful ways to cope; I'm now convinced I'm not crazy, and I believe I'll survive. I'm learning to listen to my body and to be assertive, not aggressive, about my needs. I'm realizing that good medical care and good emotional care are not necessarily found in the same place. I'm trying to be more than an infertile person gaining enthusiasm, joyfulness, and zest for life.
You can help me. I know you care about me and I know my infertility affects our relationship. My sadness causes you sadness; what hurts me, hurts you, too. I believe we can help each other through this sadness. Individually we both seem quite powerless, but together we can be stronger. Maybe some of these hints will help us to better understand infertility.
I need you to be a listener. Talking about my struggle helps me to make decisions. Let me know you are available for me. It's difficult for me to expose my private thoughts if you are rushed or have a deadline for the end of our conversation. Please don't tell me of all the worse things that have happened to others or how easily someone else's infertility was solved. Every case is individual. Please don't just give advice; instead, guide me with your questions. Assure me that you respect my confidences, and then be certain that you deserve my trust. While listening, try to maintain an open mind.
I need you to be supportive. Understand that my decisions aren't made casually, I've agonized over them. Remind me that you respect these decisions even if you disagree with them, because you know they are made carefully. Don't ask me, "Are you sure?" Repeatedly remind me that you love me no matter what. I need to hear it so badly. Let me know you understand that this is very hard work. Help me realize that I may need additional support from professional caregivers and appropriate organizations. Perhaps you can suggest resources. You might also need support for yourself, and I fear I'm unable to provide it for you; please don't expect me to do so. Help me to keep sight of my goal.
I need you to be comfortable with me, and then I also will feel more comfortable. Talking about infertility sometimes feels awkward. Are you worried you might say the wrong thing? Share those feelings with me. Ask me if I want to talk. Sometimes I will want to, and sometimes I won't, but it will remind me that you care.
I need you to be sensitive. Although I may joke about infertility to help myself cope, it doesn't seem as funny when others joke about it. Please don't tease me with remarks like, "You don't seem to know how to do it." Don't trivialize my struggle by saying, "I'd be glad to give you one of my kids." It's no comfort to hear empty reassurances like, "You'll be a parent by this time next year." Don't minimize my feelings with, "You shouldn't be so unhappy." For now, don't push me into uncomfortable situations like baby showers or family reunions. I already feel sad and guilty; please don't also make me feel guilty for disappointing you.
I need you to be honest with me. Let me know that you may need time to adjust to some of my decisions. I also needed adjustment time. If there are things you don't understand, say so. Please be gentle when you guide me to be realistic about things I can't change such as my age, some medical conditions, financial resources, and employment obligations. Don't hide information about others' pregnancies from me. Although such news makes me feel very sad, it feels worse when you leave me out.
I need you to be informed. Your advice and suggestions are only frustrating to me if they aren't based on fact. Be well informed so you can educate others when they make remarks based on myths. Don't let anyone tell you that my infertility will be cured if I relax and adopt. Don't tell me this is God's will. Don't ask me to justify my need to parent. Don't criticize my course of action or my choice of physician even though I may do that myself. Reassure yourself that I am also searching for plenty of information, which helps me make more knowledgeable decisions about my options.
I need you to be patient. Remember that working through infertility is a process. It takes time. There are no guarantees, no package deals, no complete kits, no one right answer, and no "quickie" choices. My needs change; my choices change. Yesterday I demanded privacy, but today I need you for strength. You have many feelings about infertility, and I do too. Please allow me to have anger, joy, sadness, and hope. Don't minimize or evaluate my feelings. Just allow me to have them, and give me time.
I need you to be strengthening by boosting my self-esteem. My sense of worthlessness hampers my ability to take charge. My personal privacy has repeatedly been invaded. I've been subjected to post-coital exams, semen collection in waiting room bathrooms, and tests in rooms next to labor rooms. Enjoyable experiences with you such as a lunch date, a shopping trip, or a visit to a museum help me feel normal.
Encourage me to maintain my sense of humor; guide me to find joys. Celebrate with me my successes, even ones as small as making it through a medical appointment without crying. Remind me that I am more than an infertile person. Help me by sharing your strength.
Eventually I will be beyond the struggle of infertility. I know my infertility will never completely go away because it will change my life. I won't be able to return to the person I was before infertility, but I also will no longer be controlled by this struggle. I will leave the struggle behind me, and from that I will have improved my skills for empathy, patience, resilience, forgiveness, decision-making and self-assessment. I feel grateful that you are trying to ease my journey through this infertility struggle by giving me your understanding.
The author, Jody Earle, frequently felt the need for a brochure like this one during her own eleven-year infertility struggle. She experienced three pregnancy losses, one in each trimester and eventually, the premature births of her two sons. She continues to be a peer counselor for those working through infertility.
This brochure was prepared by Jody Earle and the Educational Materials Advisory Committee of the Ferre Institute, Derwent A. Suthers, editor.
Sunday, November 8, 2009
My Story & Letter to Doctor
The intent of this letter is to let you know the outcome of a D&C I received under your care that has led to my current diagnosis and treatment for Asherman's Syndrome and to the loss of my fertility. What I have to say also forms the basis of my decision never to return to Group Health Associates for future obstetric care.
Dr. ____ was my OB/GYN. I had only seen her twice, once for my yearly exam, and to confirm my recent positive home pregnancy test; and once at my 8 week appointment. I was new to this practice at the time I found out I was pregnant. These appointments were in August & September of 2008.
At 11 weeks, I began spotting. I wasn't alarmed at first since I knew this could be normal. On the 3rd day of spotting, I asked my husband to take me to the ER. I was concerned something was wrong. It was a Sunday. October 5th, 2008. You were the physician from my OB/GYN group that was in the ER that day. It was concluded that there was no cardiac activity and that the fetal pole only measured approximately 7 weeks. Therefore, I had a missed miscarriage. You wanted to see me in your Springdale office the following day for another ultrasound to be certain, before proceeding. At that appointment, the miscarriage was confirmed. You explained my options which were simple. I could either do "expectant management" or have the D&C. You indicated the surgery had normal risk of anesthesia and was very routine & low risk. We discussed the benefit of emotional closure with D&C versus expectant management. Also, because I had a missed miscarriage, the expectant management option may have taken longer and I could have been at a higher risk for infection. The decision to have the D&C seemed simple and was not difficult for me to make. We then discussed whether or not I wanted my regular OB/GYN, Dr. _____ to perform the procedure, or you. My husband and I chose you. We felt comfortable with you since we hadn't been seeing Dr. _____ long, and you were so appropriate in such a delicate situation. You handled the ER visit and the follow-up the next day, so it just made sense to proceed with you. My D&C was performed on Tuesday, October 7th, 2008.
Everything seemed to go just fine with the procedure and my physical recovery. We had our one-month post-op appointment and everything seemed okay. When my monthly cycle had not yet returned at 6 weeks, I began growing concerned. When I called you for advice, you assured me this is normal and to wait patiently. At 2 months, I called again and you suggested I stop stressing about it, that it would come in due time. You assured me that we were still within a normal time frame. I called your office just before Christmas to let you know that my cycle still had not returned. We made an appointment for Dec. 31st. We were now 3 months post-op. You ordered blood work and I had an ultrasound. You explained that my lining was very thin and that you suspected my stress levels being the cause of my cycle not yet returning. You said that I "could win an oscar for anxiety". If my blood work came back okay (which it did) and my cycle still had not yet returned, your plan was to see me at 4 months post-op. You would then just put me on birth control to return my cycle. I left your office feeling a sense of guilt, as though I was causing my own grief through stress, and feeling helpless and uneasy. Your plan did not sit well with me. I immediately decided to pursue a consultation with a specialist.
I had my first appointment with Dr. Sherif Awadalla of the Institute for Reproductive Health at the beginning of February, 2009. After a detailed conference and ultrasound, Dr. Awadalla suspected Asherman's Syndrome. He started me on hormone replacement therapy immediately to begin building my lining, and explained that we would do an HSG to officially diagnose my case and determine the severity. A hysteroscopy and laparoscopy would then be done to remove the scarring. He explained that this would be a process and I would have to be patient. I did the hormone replacement therapy for a total of 6 months. My surgery was at Christ Hospital on May 29th, 2009. A balloon stent was placed in my uterus for three days to ensure that my uterine walls would not re-adhere. My case was concluded moderate with approximately 60% scarring in my uterus and one tube blocked. The surgery was successful. At my 2 month post-op appointment (beginning of August), we were given the "green light" to try again to conceive. Dr. Awadalla suggested Follicular Stimulation & IUI for better results, but we decided to try on our own for a couple of months, taking a break from drugs.
I had a mid-cycle scan on Monday, October 12th which determined that my follicles were not developing, therefore I was not successfully ovulating. Dr. Awadalla explained that it may take us a long time to conceive naturally. With it already being a year since the miscarriage, and with my upcoming 35th birthday, we do not feel we have time on our side. We are eager to begin our family. So we have (reluctantly) decided to opt for the Follicular Stimulation & IUI for four cycles. After that, we are unsure of our next steps. We are looking at adoption just in case.
Many OB/GYNs would say they haven't caused Asherman’s in any of their patients. I realize unless I write you, you will not know that the D&C you performed caused Asherman’s in me, one of your patients. It is a lot more common then the obstetric community believes. I ask that you please be aware of the ramifications of your actions and the catastrophic consequences that they can create. I suggest you educate yourself on this syndrome and the rate of adhesions forming post D&C and what different circumstances increase the rate of Asherman's Syndrome post D&C. You should give your patients the real statistics on intrauterine scarring and let them know what this could mean to their future fertility. If I knew the real risks I may have made a different choice. I, as do all women, deserve to know the real risks as well as the long term ramifications of the surgery. I did not know this was a risk, and that I could lose my fertility through the surgery.
There are studies that conclude that a missed miscarriage can place a woman at a higher risk for scarring if a D&C is performed. The longer the deceased fetus is in the uterus before the D&C is performed, the higher the risk. Therefore, that should have been included in the risks that were not explained to me pre-op; having had the knowledge that my fetus stopped living at approximately 7 weeks, and we were- at that point- 11.5 weeks along.
There have been several studies looking at the prevalence of Asherman’s after D&C's. I have listed a few of them at the end of this letter for your reference. I have also enclosed articles for your review that will further educate you on the statistics.
It remains to be seen whether or not I will ever be able to conceive again. Even if I am successful in this endeavor, I will face a very high-risk pregnancy, and risk of conditions like placenta accreta.
This process has been time consuming, costly, and emotionally taxing. The cost of the procedures with mediocre insurance is upwards of $5,000 to date. I have had to withdraw indefinitely from my Master's Program because this year-long ordeal has consumed me. I cannot focus beyond my daily activities. I used to be so driven and energetic. I find myself overly sensitized and fearful of any procedure dealing with my uterus, even diagnostic ones. I find myself very untrusting of the health care industry.
So here I sit, a year out from my miscarriage, still battling for my fertility. Making monthly payments because I can't afford the treatment. Living each day with regret and heartbreak. Wishing I hadn't had the D&C that caused this, and more importantly, wishing I had been better informed and a better advocate for myself.
Dr. ____ was my OB/GYN. I had only seen her twice, once for my yearly exam, and to confirm my recent positive home pregnancy test; and once at my 8 week appointment. I was new to this practice at the time I found out I was pregnant. These appointments were in August & September of 2008.
At 11 weeks, I began spotting. I wasn't alarmed at first since I knew this could be normal. On the 3rd day of spotting, I asked my husband to take me to the ER. I was concerned something was wrong. It was a Sunday. October 5th, 2008. You were the physician from my OB/GYN group that was in the ER that day. It was concluded that there was no cardiac activity and that the fetal pole only measured approximately 7 weeks. Therefore, I had a missed miscarriage. You wanted to see me in your Springdale office the following day for another ultrasound to be certain, before proceeding. At that appointment, the miscarriage was confirmed. You explained my options which were simple. I could either do "expectant management" or have the D&C. You indicated the surgery had normal risk of anesthesia and was very routine & low risk. We discussed the benefit of emotional closure with D&C versus expectant management. Also, because I had a missed miscarriage, the expectant management option may have taken longer and I could have been at a higher risk for infection. The decision to have the D&C seemed simple and was not difficult for me to make. We then discussed whether or not I wanted my regular OB/GYN, Dr. _____ to perform the procedure, or you. My husband and I chose you. We felt comfortable with you since we hadn't been seeing Dr. _____ long, and you were so appropriate in such a delicate situation. You handled the ER visit and the follow-up the next day, so it just made sense to proceed with you. My D&C was performed on Tuesday, October 7th, 2008.
Everything seemed to go just fine with the procedure and my physical recovery. We had our one-month post-op appointment and everything seemed okay. When my monthly cycle had not yet returned at 6 weeks, I began growing concerned. When I called you for advice, you assured me this is normal and to wait patiently. At 2 months, I called again and you suggested I stop stressing about it, that it would come in due time. You assured me that we were still within a normal time frame. I called your office just before Christmas to let you know that my cycle still had not returned. We made an appointment for Dec. 31st. We were now 3 months post-op. You ordered blood work and I had an ultrasound. You explained that my lining was very thin and that you suspected my stress levels being the cause of my cycle not yet returning. You said that I "could win an oscar for anxiety". If my blood work came back okay (which it did) and my cycle still had not yet returned, your plan was to see me at 4 months post-op. You would then just put me on birth control to return my cycle. I left your office feeling a sense of guilt, as though I was causing my own grief through stress, and feeling helpless and uneasy. Your plan did not sit well with me. I immediately decided to pursue a consultation with a specialist.
I had my first appointment with Dr. Sherif Awadalla of the Institute for Reproductive Health at the beginning of February, 2009. After a detailed conference and ultrasound, Dr. Awadalla suspected Asherman's Syndrome. He started me on hormone replacement therapy immediately to begin building my lining, and explained that we would do an HSG to officially diagnose my case and determine the severity. A hysteroscopy and laparoscopy would then be done to remove the scarring. He explained that this would be a process and I would have to be patient. I did the hormone replacement therapy for a total of 6 months. My surgery was at Christ Hospital on May 29th, 2009. A balloon stent was placed in my uterus for three days to ensure that my uterine walls would not re-adhere. My case was concluded moderate with approximately 60% scarring in my uterus and one tube blocked. The surgery was successful. At my 2 month post-op appointment (beginning of August), we were given the "green light" to try again to conceive. Dr. Awadalla suggested Follicular Stimulation & IUI for better results, but we decided to try on our own for a couple of months, taking a break from drugs.
I had a mid-cycle scan on Monday, October 12th which determined that my follicles were not developing, therefore I was not successfully ovulating. Dr. Awadalla explained that it may take us a long time to conceive naturally. With it already being a year since the miscarriage, and with my upcoming 35th birthday, we do not feel we have time on our side. We are eager to begin our family. So we have (reluctantly) decided to opt for the Follicular Stimulation & IUI for four cycles. After that, we are unsure of our next steps. We are looking at adoption just in case.
Many OB/GYNs would say they haven't caused Asherman’s in any of their patients. I realize unless I write you, you will not know that the D&C you performed caused Asherman’s in me, one of your patients. It is a lot more common then the obstetric community believes. I ask that you please be aware of the ramifications of your actions and the catastrophic consequences that they can create. I suggest you educate yourself on this syndrome and the rate of adhesions forming post D&C and what different circumstances increase the rate of Asherman's Syndrome post D&C. You should give your patients the real statistics on intrauterine scarring and let them know what this could mean to their future fertility. If I knew the real risks I may have made a different choice. I, as do all women, deserve to know the real risks as well as the long term ramifications of the surgery. I did not know this was a risk, and that I could lose my fertility through the surgery.
There are studies that conclude that a missed miscarriage can place a woman at a higher risk for scarring if a D&C is performed. The longer the deceased fetus is in the uterus before the D&C is performed, the higher the risk. Therefore, that should have been included in the risks that were not explained to me pre-op; having had the knowledge that my fetus stopped living at approximately 7 weeks, and we were- at that point- 11.5 weeks along.
There have been several studies looking at the prevalence of Asherman’s after D&C's. I have listed a few of them at the end of this letter for your reference. I have also enclosed articles for your review that will further educate you on the statistics.
It remains to be seen whether or not I will ever be able to conceive again. Even if I am successful in this endeavor, I will face a very high-risk pregnancy, and risk of conditions like placenta accreta.
This process has been time consuming, costly, and emotionally taxing. The cost of the procedures with mediocre insurance is upwards of $5,000 to date. I have had to withdraw indefinitely from my Master's Program because this year-long ordeal has consumed me. I cannot focus beyond my daily activities. I used to be so driven and energetic. I find myself overly sensitized and fearful of any procedure dealing with my uterus, even diagnostic ones. I find myself very untrusting of the health care industry.
So here I sit, a year out from my miscarriage, still battling for my fertility. Making monthly payments because I can't afford the treatment. Living each day with regret and heartbreak. Wishing I hadn't had the D&C that caused this, and more importantly, wishing I had been better informed and a better advocate for myself.
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