Groups help local women cope with ‘isolating’ infertilityWritten by Brandi Barhite | Community Ombudsman | firstname.lastname@example.org
Amanda Aldrich will find out Dec. 22 if she is pregnant.
She doesn’t expect good news.
A positive pregnancy test is not something the Toledo resident will probably get for Christmas, although it has been her wish for years.
But Aldrich, 34, doesn’t need a holiday to announce her pregnancy. She just needs a baby. Any time. Any month. Any year.
She and her 42-year-old husband have been battling infertility for six years. They are the faces of something that makes many people incredibly uncomfortable.
It isn’t something people like to talk about, and when they do, they usually say, “Just adopt,” Aldrich said.
“That makes me angry on a lot of levels,” she said. “Adoption is not a decision to be taken lightly and it isn’t an alternative solution to infertility, but I feel like people say it because they need to say something.”
Others make jokes about their own children without thinking: “Does anybody want a baby? Because we can’t handle it.”
Aldrich would like to say, “We would like one, thank you very much.”
Other well-meaning individuals comment, “It happens for a reason. It is in God’s plan.”
Aldrich used to believe that. She doesn’t anymore. After four failed embryo transfers, she doesn’t expect the fifth transfer, which occurred Dec. 11, to actually work. Sometimes God’s answer is “No,” she said.
“The hardest part of going through this is there is a really sincere possibility that it will never work.”
After the failed attempt in September, Aldrich and her husband decided they needed to use their frozen embryos before they made the decision to adopt or use donor eggs. If the most recent attempt fails to produce a pregnancy, their last transfer will be in the spring.
“There has to be a grieving that happens before you can move on to donor eggs or adoption,” Aldrich said. “You have to grieve the loss of your fertility because it is such an integral part of being a woman.”
Every time she meets someone for the first time, they ask, “What do you do? Do you have kids?” Aldrich used to ask that as well.
“I am kind of blunt about things. I think I catch people off guard at times when they ask if I have kids and I say, ‘I am infertile. I can’t have kids,’” she said. “It makes them uncomfortable. They don’t know what to say.
“It is a bad thing, but it is not contagious,” Aldrich said. “I just want people to understand how important it is to have empathy, not sympathy, for the couples going through this because it just destroys them.”
The clock is ticking
Aldrich and her husband, who asked not to be named, began their journey toward parenthood even before they got married in 2009. They knew it might be harder for them because of some health issues in Aldrich’s past, but they did not think it would be impossible.
“It is funny because even in our wedding video you can see my sister talking about us having children,” she said. “Everyone in my family has had children very young.
“My mom was a teen mom. My sister and brother were both teen parents,” Aldrich said. “I am the first in my family to go to college, move away and have a career and to aspire outside of our hometown.”
Yet she didn’t think her ambitions would mean she would struggle with having a baby. She figured it would happen for her like it did for everyone else in her family — just a little later.
Dr. Owen Davis, president-elect of the American Society for Reproductive Medicine, said between 10-20 percent of couples will experience infertility at some point in their lives. Conventional infertility is defined as the lack of pregnancy after one year of trying to get pregnant without protection, according to the New York City-based professor and doctor.
One of the growing reasons for infertility is women deferring child-bearing until their late 30s or early 40s.
“Age alone will affect infertility if for no other reason,” Davis said.
A woman trying to get pregnant at 40, who is otherwise healthy, only has a 50 percent chance of success.
However, there are pathological causes of infertility as well. A low sperm count, poor sperm mobility or complete absence of sperm in the man are reasons some couples can’t conceive. Women sometimes suffer from a hormonal imbalance that inhibits ovulation, while other women have tubal abnormalities.
In some cases, infertility is just unexplained, which is “not a satisfying diagnosis,” Davis said.
At first, most infertility doctors start with a less invasive treatment like intrauterine insemination (IUI), which puts the sperm directly into a woman’s uterus.
When this doesn’t work, in vitro fertilization (IVF) is usually the treatment of choice. This involves fertilization by manually combining an egg and sperm in a laboratory dish and then transferring the resulting embryo to the uterus.
“The quality of treatment for infertility has made huge strides, even if you go back a few decades,” Davis said.
However, no matter the technology, women are not going to have a great success rate if they are 45 years old, he said.
‘You better get started’
But Aldrich wasn’t 45 years old; she was 27 when she realized her fertility was at risk.
One night, she woke up with the worst pain she had ever felt in her life. She had no idea what was wrong. She was doubled over in pain and could not stand up.
“I need to go to the hospital. I need to go to the hospital,” she remembers thinking.
Doctors determined she had an ovarian contortion, which is when the whole ovary twists within itself. Most women with the condition end up losing their ovary.
Aldrich didn’t, but after doctors went in to fix it, she was told she had endometriosis.
Endometriosis occurs when the lining of the uterus (womb) grows outside of the uterus. It affects about 5 million American women, according to the Office of Women’s Health, U.S. Department of Health and Human Services.
The most common symptom is pain. The most heartbreaking symptom is trouble getting pregnant because the growth can block a woman’s fallopian tubes.
As Aldrich learned more about “endo,” she vividly remembers her gynecologist telling her, “If you want to have kids, you better get started.”
Aldrich wasn’t with her future husband at the time, but her doctor told her plenty of women with endometriosis have had successful pregnancies.
“I knew that I wanted to be married. I never thought I would just meet some guy and get pregnant.”
She met her husband at work in 2007 and it became obvious that he would be the father of her future children.
Her husband, who has been tested and is perfectly fertile, said the world leaves you behind if you aren’t a parent, although he thinks it is easier for men.
“Every movie that you see every TV show that you watch. This is all this world really knows and if that isn’t possible, they don’t know how to talk about it and they don’t want to talk about it,” he said.
But Aldrich said they would not trade their relationship for a chance to try to conceive when they were younger. Everyone has something bad in their lives and “that is our joker,” she said.
“I am so thankful that I have the husband that I have. I am so lucky in so many ways. I really mean it,” she said. “Because of that reason, I am so happy that I did wait. I waited for the right one. That was important to me.”
The irony of the situation doesn’t escape her, however. “I spent my whole life trying to not get pregnant, so it is really funny to think about all the money you spent on that, and now here we are.”
‘We let it rule our lives’
Aldrich and her husband tried having kids the “old-fashioned way” from 2008-11, she said. Most doctors advise getting help after six months, especially if you are 35 or older.
“We tried on our own for probably longer then we should have. I think we tried for two years on our own because everybody in my family had three or four kids. We were like, ‘What is going on? This makes no sense.’”
She went to see Dr. Joseph Karnitis at the Fertility Center of Northwest Ohio, who put her on a fertility drug to help her eggs grow.
Since she was young, they thought this approach would do the trick when paired with intercourse at prescribed times.
Aldrich and her husband only tried that for six months, though, because they were spending $3,000-4,000 per month and nothing was covered by insurance. At one point, they ordered cheaper medication from England to save money, but it arrived in glass vials and the first time they did it, “We broke it and the medication went all over the place,” she said.
Aldrich said, “Enough.”
“I’d rather spend more money and know that we aren’t going to lose it,” she said. “It was $12,000-plus for IVF, and we thought, ‘Why are we spending all this money when we could spend a little more for more of a guarantee?’”
But it wasn’t that simple.
Aldrich had to go on Lupron Depot, a birth control medication, to try to shrink her endometriosis before the eggs could be retrieved. She and her husband lost months as the birth control stopped them from getting pregnant.
Meanwhile, she started a new job at a nonprofit in 2013 that offered infertility coverage, which was a relief because she said sometimes she feels like infertility comes down to a class system.
“If you can’t pay for it, you can’t have kids,” she said.
In June 2013, Aldrich underwent her first IVF and transferred two embryos. Her second round was in October 2013. Each time it looked like everything was in place to work out. She even had one chemical pregnancy, but nothing ever happened.
The first time they did IVF, Aldrich allowed herself to get excited. She had Pinterest boards, an Amazon wish list and was picking out what the nursery would look like.
By late 2013, she was frustrated and wanted more guidance. She switched to Dr. Nicholas Shamma with IVF Michigan Fertility Center and had IVF for a third time.
This worked out, because the Fertility Center of Northwest Ohio will soon close. ProMedica spokeswoman Tedra White confirmed that 800 patients will be transitioned to the Toledo Fertility Center in Sylvania in 2015.
“Patients will have access to multiple physicians who will provide high-quality, coordinated and convenient care with high success rates,” she said in an email statement. “The majority of their treatment will be handled locally, but they will have to travel to metro Detroit for IVF.
“Similar to other health systems, ProMedica experienced many challenges with operating a fertility center,” White said. “These centers can be very expensive to operate. Additionally, recruitment is becoming more difficult due to a shortage of specialists.”
Aldrich said she once again had high hopes after switching doctors.
But once again, it didn’t work. IVF and the subsequent embryo transfers aren’t a guarantee.
“It is so hard to try to explain to people how difficult it is and to have them understand that it literally does encompass your entire life,” she said.
She and her husband second-guess vacation plans because what if she gets pregnant and they can’t travel? Should they remodel the guest room, because what if they need that room for the baby? They even traded in their car right before marrying to make sure they had something family-friendly.
Now they are trying to live life and if “it happens, it happens,” she said.
“We do get a little excited and have hope that it is going to work out and when it inevitably doesn’t, we are just as crushed as before.”
Her husband said, “Your expectations decrease as a defense mechanism. The first time we thought it was the end of the world; the second time the same. When the third didn’t work, we are like, ‘What is going on?’”
Aldrich said it destroys her self-esteem and while she tries to avoid alcohol in case she gets pregnant, the stress makes her want a drink. Without fail, she gains 10 pounds every time she goes through a treatment cycle because of the many medications she is on to aid the embryo transfer. For the Dec. 11 cycle, she has been taking an average of 12 medicines a day, from blood thinner to folic acid to estrogen.
Finding your resolve
One of the best ways to face infertility is with people who know what you are going through, Aldrich said. She belongs to the international Heels and Hormones Facebook group and Resolve Toledo, which is also online. The women from Resolve Toledo meet at Panera Bread once a month.
“They are my best friends. They are my confidantes. Oh my God, I love them like sisters,” Aldrich said. “They have changed everything. Infertility is so isolating in a lot of ways.”
The groups talk on Facebook about their medical appointments and obsess over pregnancy test photos. Aldrich has even met some of the members from out of town. In the summer, she went with a few other ladies to New Jersey as one woman went through an embryo transfer.
Ashley Schardt, 25, of Bowling Green said belonging to Toledo Resolve helps with the struggles of her infertility. Her body does not ovulate or have a monthly period.
“It is nice to have everyone around when I have an appointment or if I have a medical question.”
She recently underwent IUI, which involves placing sperm inside a woman’s uterus to help with fertilization. She thought she would be announcing at Thanksgiving she was pregnant. The IUI failed.
“You grow up believing you are going to get married, get a house and have kids,” she said.
Schardt didn’t even care if she got married; she just wanted children, she said, laughing. She finds it so frustrating when people tell her to relax and she will get pregnant.
“I cannot force my body to do this,” Schardt said. “We tried.”
Elizabeth Sampson of Carmel, Indiana, belongs to Heels and Hormones because she is battling secondary infertility. She has three children, but has been trying for a fourth for five years.
“The group has really been able to band together and support each other through our infertility issues,” Sampson said. “We talk about medications, doctor’s appointments and sex with our husbands.”
Sampson, 38, said the group is nice because “there is no situation where your situation is worse than mine and mine is worse than yours. We are all in this hell together.”
Some of the women visit each other and even send gifts. When Sampson was in the hospital with a recent loss, she woke up to roses from the Heels gals.
Sarah Schwartz belongs to the Toledo Resolve group. She is saving up for IVF because her insurance doesn’t cover it.
“It is one of the few places that you feel safe. Your family and friends try to understand, but they will say things that aren’t helpful, even if they don’t mean it,” she said.
Schwartz suffers from polycystic ovary syndrome, which affects hormone levels, periods and ovulation.
“We have been trying for more than six years. We have been saving for IVF for two years, but we had a few setbacks. We had a death in the family and had to pay for a funeral,” she said.
Schwartz likes the group because everyone can talk about where they are in their journey. Some are doing IVF, while some are looking at adoption and fostering.
The women also vent. The holidays are one of the hardest times to be unwillingly childless, although Mother’s Day is the absolute worst.
“Every year, I put up the Christmas tree and think maybe next year will be the year,” Schwartz said.
A Christmas miracle
Christmas is hard for couples facing infertility, not that any day is particularly easy when the joys of children are plastered everywhere, especially on social media.
“It is amazing how many times everything seems to revolve around children,” Aldrich said. “Every single commercial that we see and every time we go somewhere, there is a pregnant belly or you see children playing or signs that say, ‘Make memories with your children.’ It is awful. It is enraging and frustrating and so sad all at the same time.”
On Thanksgiving, Aldrich spent time with her new niece. She was born on the day Aldrich found out an embryo transfer had failed.
“I spent all of Thanksgiving holding her and feeding her and it was so hard,” Aldrich said. “It feels good. And of course I love her. She is my niece and she is beautiful and it is an amazing thing. At the same time, it is also equally super heartbreaking to think we might not ever have that opportunity to experience what that is like.”
It is the hardest thing to express to people how hard it can be, she said. Once she went to dinner with a friend who told her to not consider IVF because of the moral consequences.
“They don’t understand what it really means. It is not a guarantee. You aren’t mixing it up in a petri dish, sticking it in and boom, you have a baby,” she said. “There is still a God or Allah or whoever, who says this is going to continue to grow and work.”
Aldrich said her infertility has made her an advocate for educating people who don’t know anything about it or say rude things.
Her infertility has also opened an opportunity for a bond beyond bonds. Her sister, Ashley Berger, recently offered to be a surrogate if the last rounds of embryo transfers do not work.
“I would do it in a heartbeat,” Berger said. “I have been waiting to see how her journey has unfolded. They have had multiple attempts and unfortunately we haven’t gotten that little niece and nephew we have been praying for.”
Aldrich said she and her husband would consider it, but they need to see what happens Dec. 22. There is always that tiny bit of hope.
We will never have a life without kids,” she said. “We will have kids. It just is a matter of how that happens. We just don’t know.”