This is a new cafe topic for us this year. We welcome your feedback and suggestions/ideas for future cafe topics!
Our panelists are here to help us learn more about infertility, a common issue that affects 1 in 8 couples (20062010 National Survey of Family Growth, CDC). Too often, topics like these aren’t discussed out of sadness or embarrassment. However, we have a responsibility to support and encourage our fellow women and we want you all to know that NO ONE IS ALONE.
Let’s have our panelists introduce themselves. Please tell us a little about yourselves, your work in maternal health and why you’re passionate about this topic.
Dr. Laura Smith-Infertility Specialist at Reproductive Medicine and Surgery Center of VA http://www.rmscva.com
Dr. Patty Powers-Endocrinologist www.drpattypowers.com
Jen Douglas-TMC Care Group Leader; struggled with infertility for 5 1/2 years.
Infertility is a disease of the reproductive system.
One third (30%) of infertility can be attributed to male factors, and about one third (30%) can be attributed to female factors. In about 20% of cases infertility is unexplained, and the remaining 10% of infertility is caused by a combination of problems in both partners. (http://www.resolve.org/about-infertility/)
What should you do if you suspect you're having infertility problems? How long should you try to conceive before getting help? Who diagnoses infertility (family doctor, OB/GYN, specialized fertility doctor)?
Laura: You would be considered to be having infertility problems if: you are under 35 years old and have been trying for more than a year, or over 35 years old and trying for more than 6 months. If this is the case, then would recommend going to seek care/evaluation process. See your doctor, an endocrinologist, etc. for an initial evaluation and go from there.
Audience question: I was frustrated when my doctor said it was unexplained…why is it unexplained??
Laura: That IS frustrating, and there’s so much research looking into other reasons…autoimmune issues, other internal issues, etc. however, we don't have all the answers yet. And that can be hard. We all wish we could give a definitive answer every time.
When patients come to your office, what are the most common “reasons” for their infertility? Do patients (couples) usually have one issue or a combination of factors? How do you determine what’s going on?
Laura: about 40% of the time, there’s more than one contributing factor.
We do hormonal testing, and get an idea of egg supply. Testing tells us where are you at this moment in time, where is your egg supply, are you likely to respond to the medicine we’ve can give you? Are fallopian tubes open? What does the inside of the uterus look like? Also will do semen analysis: are they moving, what’s the shape look like, etc. We tend to do all the testing at once before we make a decision about treatment. We also look at thyroid levels and do a lot of thyroid testing and treatment. If we can see what is wrong, then we treat that. If it’s ‘unexplained’ then we start treament/medicines to help you ovulate or get more eggs out there. (Clomid is an example), IUI (artificial insemination), intercourse, or IVF (giving yourself injections, having eggs removed, combining with sperm, and inserting back into the uterus as embryos.)
Audience question: what is your medical opinion on acupuncture?
Laura: all of the studies I’ve seen have shown that it lowers stress levels, which can be very beneficial. I haven’t seen studies that show a direct correlation to an increased chance of pregnancy.
What about people who are experiencing secondary infertility? Do the percentages above stay the same? Is there a typical plan that patients follow?
Laura: Secondary means you’ve been had a baby but are now not able to get pregnant again. Percentages are the same…it could still be any of the reasons, because things can change over time. If you’ve been pregnant but had a miscarriage/recurrent miscarriage, there is an element of infertility, but the process and evaluation process is very different.
Patty, when in the process do patients usually see you? What is your role in improving fertility? What common suggestions or treatments do you offer?
Usually someone is having issues getting pregnant, or may want to work on their own health before trying to get pregnant. Looking at your health for 90 days prior to conception is actually recommended, as that is when the egg is maturing.
There are many many things that can affect infertility.
STRESS is a big one – internal and external pressures, looking for causes of the stress (kids, work, emotional, relational, eating habits, sleep issues, thyroid problems, etc. etc.) Stress isn’t just an emotional reaction.
Thyroid issues – your thyroid may be in the ‘normal’ range, however, there are other hormone levels, iron issues, etc. that contribute to thyroid issues.
Xenoestrogens…endocrine-disrupting chemicals. In plastic, lining in food cans, etc.
GMOS – there are studies that show decrease in fertility in rodents…there aren’t human studies yet, but there is a possible correlation. Also, GMOS are sprayed with pesticides. The World Health Organization declared these pesticides a carcinogen; they kill off bacteria and are toxic to gut bacteria.
PCOS-polycystic ovarian syndrome. Also low-progesterone or other hormonal issues. When looking at hormones, you want to look at what’s causing the hormonal issues.
For a full reference, please see Patty's powerpoint: Infertility Powerpoint Presentation
Jen, what has been your experience personally, and what was the worst part about fertility treatments?
We chose the order of our treatments because it was the most natural route, and the cheapest. In VA, infertility isn’t usually covered by insurance. We tried for 6 months, and then started with Clomid for 6 months. After that didn’t work, we called Charlottesville and went there for our initial exam. We did Clomid, a steroid and a higher dosage. We found out I didn’t ovulate on Clomid (speeding ticket story). We began injections after that, because I wasn’t ovulating (insurance did cover the first round, but after our first IUI, we had to pay out of pocket). Statistically, within three or four rounds you would see a pregnancy; we did six rounds over months and still were not pregnant.
We took what was supposed to be a 6 month break that turned into a 2 year break. Did a year of consulting natural methods/hormone and throid, diet issues…still nothing. We decided to go back to Charlottesville, as my husband also had ‘motility’ issues (the sperm kind of ‘hang out’…he’s from California. ;) ) We then proceeded with IVF.
What’s the worst part? ALL OF IT. It affects every aspect of your life. Emotional, financial, relational, everything.
Infertility can be a long and expensive road. What are some ways that people finance treatment? Why are treatments so expensive even for insured patients?
Laura: VA is a ‘non-mandated state’ so we don’t have to cover fertility treatments. (Massachusetts, however, is great…maybe move there?) The testing should be covered by insurance, however, treatments aren’t usually covered. Some insurances will cover parts of it, but it varies greatly.
There are grants through the Livestrong Foundation if your fertility treatments are a result of cancer/cancer treatment.
A lot of people take out loans, have friends and family help out, do fundraisers.
Jen: we ate through our savings, took out loans, fundraising, and some family contributed. Friends would even just pay for a tank of gas to help out.
Are there things that people have done or said that have made you feel better? What is the best way to support someone dealing with infertility?
Jen: It’s hard. You’re constantly surround by people having babies, and you feel like your life is at a standstill. You still want relationships with those friends, but it’s hard.
People aren’t comfortable sitting with you in grief, so they try to offer solutions. ‘Have you though about adoption? I know this couple…; have you tried IVF? I’ve heard you could…’ A lot of times, hearing that is like salt in a wound. YES, we’ve thought through things. Just ask…"where are you in your process?" "How are you doing?" "Can we contribute to a tank of gas?" "Hold a yard sale and give you the proceeds?"
You’re GOING to grieve. It’s a monthly grieving process. It’s compounding, and it’s constant. Constantly hoping, constantly analyzing, constantly wondering. It saturates every single part of your life. Your husband is tired of talking about it. Your mother in law is wondering when you’re going to bring that grandbaby.
Try to think through what you’re going to say before saying it to someone, and put yourself in their shoes. Don’t take it personally if they need to take some time away. It may be too much emotionally right now for where they’re at. Leave the baby at home and invite them out for coffee. They still love you, but they may need to take some time or some space.
Having a child doesn’t erase infertility; much as arriving at a destination doesn’t eliminate the journey. ~Susan Bisno Massel
What are good fertility support resources available? Websites? Blogs? Books? Local and online support groups? Any good specific resources focused on male infertility?
Laura: Resolve.org is great! It’s hard to find peer-led support groups. TMC is amazing because you have this. Many people go to a counselor. Maybe a marriage counselor, because it is stressful on a marriage.
Jen: blogs, definitely. They were more personal. Also Resolve is great – I follow them on Facebook too. Our Care Group was wonderful…not everyone is going through infertility, but it is like-minded individuals walking through grief and hard times. We have a private Facebook groups where we can talk/vent/encourage each other.
Lauren comment: I’ve had people say to me that going to a support group is like admitting defeat, or ‘I couldn’t do that to my spouse’. What would you say to that?
Jen: It saved me. It saved my marriage; we could talk things out with a third party to help us understand each other and our feelings. I could talk things out in a support group, a place where people who are walking through the same things can understand you. But it IS hard. It’s scary. But it’s not defeat.
Laura: It’s hard to even see a provider for the first time. I have a lot of patients that say ‘I’ve been avoiding this for years.’
Lauren: When do you think is the right time to start attending a support group?
Audience member: NOW! Now. I’m in the Care Group and it’s exactly what I needed. It’s not being alone. My husband didn’t get it at first, but it’s exactly what we needed.
In conclusion, what final thoughts would you like to leave our audience with today?
Laura: We know that it’s hard. We will try everything we possibly can to help you. If you have questions, please ask!
Patty: I’m big on hope. There’s always hope. Things will always change. There is always hope.
Jen: Even if you haven’t walked through this, know it’s there. If you find yourself in this situation, or even if you have friends walking through it, know we’re there for you and there are resources. It’s the hardest thing I’ve ever gone through, but like Patty said, there IS hope. Even when it was hard, there was still hope. So, help us hope.