Dear 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 myself 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 hoped this would be a brief difficulty with a simple solution such as poor timing. 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 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 my pain is. 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? 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 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. 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 nor 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. Infertile couples have a lot on their minds and need someone to talk to. Sometimes a good ear helps people get things off their chests. A good listener can help people express their anxiety, anger, and guilt; or help people work out solutions to problems. Without offering any suggestions, your attentiveness and interest may provide the comfort and reassurance I need most. Talking about my struggle helps me to make decisions. Let me know if you are available for me. 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.
Let me know when you don’t know what to say. 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. 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.
http://www.justmommies.com/forums/f74-trying-to-conceive-medical-assistance/1600028-letter-to-my-family-and-friends.html#ixzz0IcZTndOt&D
Tuesday, June 16, 2009
Dear Family and Friends
I didn't write this letter, but found it on a support group website. I took out the very few parts that I don't feel or don't pertain to our situation. Other than that, this letter sums up exactly what goes through my head and explains some of my actions. If you choose to only read one thing on this blog, this would be it.
Friday, June 12, 2009
PCOS
The new RE (reproductive endrocrinologist) diagnosed me with PCOS. He suspected it immediately based on my acne and oily skin. It was confirmed using an ultrasound that showed my left ovary was covered in cysts. Once I read did some research about PCOS, it made sense. It's probably something that I've always had as diet and exercise are the best ways to manage it and I was so active growing up. It can't be cured, only controlled. It's difficult to control though because PCOS makes it very easy to gain weight and very difficult to lose weight. I'm being tested to see if I'm insulin resistant, which would also be causing the weight gain. If I am, a simple medication can help get my hormones regulated again. So, some info on PCOS.
PCOS and Infertility
PCOS (Polycystic Ovarian Syndrome) is one of the leading causes of infertility in women. Approximately five to ten percent of women of childbearing age have PCOS. Most women with PCOS don’t even know that they have it. In fact, less than twenty-five percent of women with PCOS have actually been diagnosed. Most women do not get a diagnosis until they begin trying to get pregnant. Some of the symptoms of PCOS may be overlooked until a woman starts trying to conceive a baby.
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What is PCOS?
PCOS, or Polycystic Ovarian Syndrome, is a medical condition that affects women’s menstrual cycles, fertility, hormone levels, and physical appearance. Women with PCOS produce high levels of insulin. Researchers believe that excessive insulin production causes their bodies to respond by producing high levels of male hormones or androgens.
During the first half of a normal menstrual cycle, several follicles will develop. Each follicle contains an egg. As the menstrual cycle continues, only one follicle will remain. This follicle will produce the egg during ovulation. Once the egg has matured, LH levels will surge causing the egg to burst from the follicle. This is when ovulation occurs.
Excess male hormones produced with PCOS affect the production of female hormones necessary for ovulation. A woman with PCOS does not produce enough hormones to cause any of the follicles to mature. They may grow and collect fluid but none become large enough for ovulation. Some of these follicles may develop into cysts. Because ovulation does not occur, progesterone is not produced. Progesterone is what causes the lining of the uterus to thicken. A woman’s cycle will be irregular or absent without progesterone.
Symptoms of PCOS
* Irregular or infrequent menstrual cycles
* Infertility
* Increased hair growth on face, back or chest
* Multiple cysts on the ovaries
* Thinning hair
* Obesity
* Elevated insulin levels or Type II Diabetes
* Acne
* PMS or pelvic pain
PCOS and Ovulation Prediction
Because hormone levels are affected with PCOS, predicting ovulation can be difficult. Women with PCOS usually have an anovulatory BBT chart. If they do ovulate, it may be very difficult to interpret their BBT chart. PCOS may also affect the results of ovulation prediction kits. Ovulation prediction kits work by detecting LH surges.
Some women with PCOS have elevated LH hormones making it difficult to use an ovulation prediction kit. The Clear Plan Fertility monitor also informs customers that PCOS adversely affects the performance of the monitor.
PCOS Infertility Treatments
* Weight Loss – Weight loss can sometimes help to improve hormone imbalances and restore normal menses.
* Metformin (or Glucophage) – Metformin improves the body’s sensitivity to insulin. It helps your body to use insulin better so that you do not produce as much insulin to control blood sugar. High insulin levels appear to be what creates the high levels of male hormones. By reducing insulin levels, male hormones also decrease. If Metformin is successful, male hormones will be lower, and ovulation will resume. Metformin is considered safe to use on women who do not have diabetes because it affects insulin levels and does not actually lower blood sugar directly. There are also a few other insulin reducing medications that are used in the treatment of PCOS. You will want to discuss your options with your doctor.
* Clomid (or other fertility drugs) – Fertility drugs, such as Clomid, are often used in the treatment of PCOS related infertility. Clomid works by blocking estrogen receptors in the brain. With estrogen receptors blocked the brain is tricked into thinking there are low estrogen levels. Low estrogen levels trigger the body to produce more FSH and LH. FSH and LH are what signal the body to ovulate. Clomid is often successful at bringing about ovulation but only thirty to forty percent of the women who do ovulate from Clomid will actually become pregnant. Metformin may also be prescribed in conjunction with Clomid.
Other fertility drugs work more directly. Injections of gonadotropins (FSH and LH) work directly to stimulate follicle production and ovulation. These injections require more monitoring than Clomid and are generally used only after other options are tried first.
* Ovarian drilling – Ovarian drilling is a procedure where a small needle is used to puncture tiny holes in the ovary with an electrosurgical needle. The electric current destroys a small portion of the ovary. This may result in lowering androgen levels and restoring ovulation.
* IVM (in vitro maturation) or IVF or (in vitro fertilization) – In vitro Maturation is a procedure where immature eggs are harvested early in a woman’s cycle. The eggs are matured in a laboratory and can then be used for fertilization. In vitro fertilization is procedure where mature eggs are collected from the woman’s ovary. The eggs are then fertilized and implanted in the woman’s uterus. The difference between the two is that with IVF medications are used to produce mature eggs and with IVM the eggs are matured in a laboratory. IVM may be helpful for women who do not respond to drug therapy.
PCOS and Infertility
PCOS (Polycystic Ovarian Syndrome) is one of the leading causes of infertility in women. Approximately five to ten percent of women of childbearing age have PCOS. Most women with PCOS don’t even know that they have it. In fact, less than twenty-five percent of women with PCOS have actually been diagnosed. Most women do not get a diagnosis until they begin trying to get pregnant. Some of the symptoms of PCOS may be overlooked until a woman starts trying to conceive a baby.
this article continues below
advertisement
What is PCOS?
PCOS, or Polycystic Ovarian Syndrome, is a medical condition that affects women’s menstrual cycles, fertility, hormone levels, and physical appearance. Women with PCOS produce high levels of insulin. Researchers believe that excessive insulin production causes their bodies to respond by producing high levels of male hormones or androgens.
During the first half of a normal menstrual cycle, several follicles will develop. Each follicle contains an egg. As the menstrual cycle continues, only one follicle will remain. This follicle will produce the egg during ovulation. Once the egg has matured, LH levels will surge causing the egg to burst from the follicle. This is when ovulation occurs.
Excess male hormones produced with PCOS affect the production of female hormones necessary for ovulation. A woman with PCOS does not produce enough hormones to cause any of the follicles to mature. They may grow and collect fluid but none become large enough for ovulation. Some of these follicles may develop into cysts. Because ovulation does not occur, progesterone is not produced. Progesterone is what causes the lining of the uterus to thicken. A woman’s cycle will be irregular or absent without progesterone.
Symptoms of PCOS
* Irregular or infrequent menstrual cycles
* Infertility
* Increased hair growth on face, back or chest
* Multiple cysts on the ovaries
* Thinning hair
* Obesity
* Elevated insulin levels or Type II Diabetes
* Acne
* PMS or pelvic pain
PCOS and Ovulation Prediction
Because hormone levels are affected with PCOS, predicting ovulation can be difficult. Women with PCOS usually have an anovulatory BBT chart. If they do ovulate, it may be very difficult to interpret their BBT chart. PCOS may also affect the results of ovulation prediction kits. Ovulation prediction kits work by detecting LH surges.
Some women with PCOS have elevated LH hormones making it difficult to use an ovulation prediction kit. The Clear Plan Fertility monitor also informs customers that PCOS adversely affects the performance of the monitor.
PCOS Infertility Treatments
* Weight Loss – Weight loss can sometimes help to improve hormone imbalances and restore normal menses.
* Metformin (or Glucophage) – Metformin improves the body’s sensitivity to insulin. It helps your body to use insulin better so that you do not produce as much insulin to control blood sugar. High insulin levels appear to be what creates the high levels of male hormones. By reducing insulin levels, male hormones also decrease. If Metformin is successful, male hormones will be lower, and ovulation will resume. Metformin is considered safe to use on women who do not have diabetes because it affects insulin levels and does not actually lower blood sugar directly. There are also a few other insulin reducing medications that are used in the treatment of PCOS. You will want to discuss your options with your doctor.
* Clomid (or other fertility drugs) – Fertility drugs, such as Clomid, are often used in the treatment of PCOS related infertility. Clomid works by blocking estrogen receptors in the brain. With estrogen receptors blocked the brain is tricked into thinking there are low estrogen levels. Low estrogen levels trigger the body to produce more FSH and LH. FSH and LH are what signal the body to ovulate. Clomid is often successful at bringing about ovulation but only thirty to forty percent of the women who do ovulate from Clomid will actually become pregnant. Metformin may also be prescribed in conjunction with Clomid.
Other fertility drugs work more directly. Injections of gonadotropins (FSH and LH) work directly to stimulate follicle production and ovulation. These injections require more monitoring than Clomid and are generally used only after other options are tried first.
* Ovarian drilling – Ovarian drilling is a procedure where a small needle is used to puncture tiny holes in the ovary with an electrosurgical needle. The electric current destroys a small portion of the ovary. This may result in lowering androgen levels and restoring ovulation.
* IVM (in vitro maturation) or IVF or (in vitro fertilization) – In vitro Maturation is a procedure where immature eggs are harvested early in a woman’s cycle. The eggs are matured in a laboratory and can then be used for fertilization. In vitro fertilization is procedure where mature eggs are collected from the woman’s ovary. The eggs are then fertilized and implanted in the woman’s uterus. The difference between the two is that with IVF medications are used to produce mature eggs and with IVM the eggs are matured in a laboratory. IVM may be helpful for women who do not respond to drug therapy.
It's been a while
It's been a while since I've updated. I've been too depressed and I'm just sick of the roller coaster ride known as infertility.
So a lot has gone on since I've last updated. We've tried two rounds of Clomid and while I'm ovulating on the Clomid, we haven't gotten pregnant yet. After the first round, I asked the nurse at the doctor's office when he typically starts IUIs (interuterine inseminations or artificial insemination). To add salt to an open wound, most insurance carriers do not cover any infertility treatments, which can cost anywhere from $1500 to $20,000. I wanted to know approximately when we would be starting our first IUI so we could financially plan for it. I was shocked at the response. The doctor doesn't do IUI until after a year on medications and won't even see me again for further testing until the year is up. We don't agree with that at all. To force us to go a year without additional testing or monitoring is ethically wrong. I'm sure all of you have heard of Jon & Kate + 8. Ever heard of where high order multiples come from?? Unmonitored medicated cycles. It's important to do ultrasounds to see how many follicles are growing to know if you should proceed with the cycle. Adam and I want a baby, but we don't want six babies at once. Not doing any additional testing for a while is wrong as well because we haven't had all the tests completed yet and there could be something preventing us from getting pregnant and we could be wasting time, money, and our emotions by wasting cycles of Clomid. You should only be on Clomid for up to 6 cycles before the side effects begin to outweigh the benefits.
So we made the decision to find a new doctor. Come to find out, our current doctor is just an "infertility specialist" aka an OB/gyno who occasionally deals with the couples in their practice struggling to get pregnant. He doesn't deal with infertility as his only focus. We needed to find an actual reproductive endrocrinologist- a doctor whose specialty is getting couples pregnant using assistive reproductive technologies aka IUIs or in vitro fertilization. I did much more research in choosing a new doctor, got some wonderful recommendations from former patients, and found a clinic that seems to mesh with our idea of how this journey should go. It means driving an hour and a half every week or sometimes every other day, but its worth it. We were able to get an appointment rather quickly. The doctor was very nice, took us seriously and shared the goal of getting us pregnant. He immediately started some additional testing. It turns out I found PCOS- polycystic ovarian syndrome. I'll post more about that in a second. So we were no longer "unexplained infertility" as Hershey labeled us. The next cycle would be a "testing" cycle. I had a hysteroscopy done to look inside my uterus and at my tubes- that was incredibly painful, but everything looked good. They did an endrometrium biopsy, which also came back good. Last, I'm on the Clomid Challenge Test, which uses hormone levels to check egg quality. Thankfully, my eggs are still good. Part of the Clomid Challenge Test involves an ultrasound to check on the growth of the follicles (this is what the other doctor wasn't willing to do). My ultra sound showed three measurable follicles that were ready to release an egg. It doesn't mean that all three eggs will release, but we're hopeful that two will release and we'll hopefully manage to catch at least one egg. So now we're just waiting to see what happens this cycle. We're keeping our fingers crossed!
So a lot has gone on since I've last updated. We've tried two rounds of Clomid and while I'm ovulating on the Clomid, we haven't gotten pregnant yet. After the first round, I asked the nurse at the doctor's office when he typically starts IUIs (interuterine inseminations or artificial insemination). To add salt to an open wound, most insurance carriers do not cover any infertility treatments, which can cost anywhere from $1500 to $20,000. I wanted to know approximately when we would be starting our first IUI so we could financially plan for it. I was shocked at the response. The doctor doesn't do IUI until after a year on medications and won't even see me again for further testing until the year is up. We don't agree with that at all. To force us to go a year without additional testing or monitoring is ethically wrong. I'm sure all of you have heard of Jon & Kate + 8. Ever heard of where high order multiples come from?? Unmonitored medicated cycles. It's important to do ultrasounds to see how many follicles are growing to know if you should proceed with the cycle. Adam and I want a baby, but we don't want six babies at once. Not doing any additional testing for a while is wrong as well because we haven't had all the tests completed yet and there could be something preventing us from getting pregnant and we could be wasting time, money, and our emotions by wasting cycles of Clomid. You should only be on Clomid for up to 6 cycles before the side effects begin to outweigh the benefits.
So we made the decision to find a new doctor. Come to find out, our current doctor is just an "infertility specialist" aka an OB/gyno who occasionally deals with the couples in their practice struggling to get pregnant. He doesn't deal with infertility as his only focus. We needed to find an actual reproductive endrocrinologist- a doctor whose specialty is getting couples pregnant using assistive reproductive technologies aka IUIs or in vitro fertilization. I did much more research in choosing a new doctor, got some wonderful recommendations from former patients, and found a clinic that seems to mesh with our idea of how this journey should go. It means driving an hour and a half every week or sometimes every other day, but its worth it. We were able to get an appointment rather quickly. The doctor was very nice, took us seriously and shared the goal of getting us pregnant. He immediately started some additional testing. It turns out I found PCOS- polycystic ovarian syndrome. I'll post more about that in a second. So we were no longer "unexplained infertility" as Hershey labeled us. The next cycle would be a "testing" cycle. I had a hysteroscopy done to look inside my uterus and at my tubes- that was incredibly painful, but everything looked good. They did an endrometrium biopsy, which also came back good. Last, I'm on the Clomid Challenge Test, which uses hormone levels to check egg quality. Thankfully, my eggs are still good. Part of the Clomid Challenge Test involves an ultrasound to check on the growth of the follicles (this is what the other doctor wasn't willing to do). My ultra sound showed three measurable follicles that were ready to release an egg. It doesn't mean that all three eggs will release, but we're hopeful that two will release and we'll hopefully manage to catch at least one egg. So now we're just waiting to see what happens this cycle. We're keeping our fingers crossed!
