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IVF treatment – the patient’s inside story: what can I do to help my chances? #IVFWEBINARS

IVF treatment is definitely a stressful time. It can be intense. With every IVF cycle, you invest a lot of your precious time, money and psychological capital. That is why it is beneficial for you to be prepared as much as you can to help your chances to get pregnant and have a healthy baby.

And to help you do that our expert in this webinar is Jennifer “Jay” Palumbo, a freelance writer, infertility and women’s rights advocate. Jennifer gives her perspective to the above topic from the point of view of a patient who had struggled with infertility for years and was finally successful. Watch to know what she did differently during her last IVF cycle and will be happy to share her views on that.

We are here to take you by the hand and help you ease the stress, be prepared physically and mentally and give you tips and hints so your IVF treatment goes as smoothly as possible. It is important for you to know what to expect, what questions to ask and how to speak with your doctor. If you haven’t considered IVF yet, but you are struggling to get pregnant naturally or you have had multiple miscarriages after natural conception, this webinar is also for you – find out whether you should visit a fertility specialist and how to approach it.

 

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Remember that every infertility case is different and some women may need several IVF attempts to get pregnant and some need only one. Infertility can be unpredictable but it is extremely important to be prepared both mentally and physically. This webinar aims to allow Jennifer to share her story with you, give you emotional support, give you a better understanding about what’s ahead of you and empower you to take steps that are right for you and your partner not for the clinic.

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We know how strong the TTC community is – we are truly stronger if we share views, opinion, advice, and support one another along the way. Remember: you are not alone. Wishing you all lots of Baby Dust! Share this webinar with a Friend who might want to watch it.

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The IVF journey is different for each patient; it’s long and full of difficult choices. However, sharing experiences and hearing what others went through on the same path makes it easier. To that end, we’ve invited Jennifer Palumbo, a freelance author, infertility and women’s rights advocate, to share her experience on her own journey with IVF, as well as tell us the common themes and concerns she encountered during her time working with IVF patients from all over the world.
Jennifer’s journey began with a diagnosis of unexplained infertility:

after three years of unsuccessfully trying to conceive, she went on to try six Clomid cycles, three IUI insemitations, and four IVF treatments, of which only the final one was successful. It’s important to know that all of this happened before the advent of PGT-A (or as it used to be known, PGS).

Following her journey, she became an outspoken infertility advocate, talking about her experiences to help other prospective parents who may be going through the same difficulties she did. To get us all up to speed, infertility is a disease or condition of the reproductive system. Jennifer points out – and it can’t be stressed more than it is – it’s a medical issue, not a personal fault. Understanding that basic point helps afflicted patients cope better. It affects every one out of every eight couples is affected by this problem in the United States. 11.9%, or 7.4 million women received services intended to help with infertility in their lifetime, according to the Centre for Disease Control.
A third of all infertility issues is attributed to the female partner, a third to the male partner, and the last third is attributed to a combination of issues with both partners or is left unexplained. Historically, however, medical science tends to assume the problem originates with the female partner. For this reason Jennifer recommends that both partners get tested.
Approximately 85-90% of infertility cases in the US are successfully treated with drug therapy or surgical procedures. Only a small minority, less than 3% actually need advanced reproductive technologies like IVF.

Jennifer reiterates:

get yourself and your partner tested if you’re having problems conceiving. Chances are your issue originates within a minor defect or hormonal imbalance which can be corrected without the need for a full blown IVF cycle.

According to Jennifer, a lot of patients only see their gynaecologist for assistance with their infertility issue. While they can help with the initial testing (AMH/FSH), a reproductive endocrinologist should be consulted if you’ve had two or more miscarriages, or if you’re over the age of 35, or haven’t been able to conceive for more than a year.
The first course of action recommended by gynaecologists is a cycle of Clomid. It’s considered to be the first line of defence against reproductive issues, however, most people aren’t aware that there are limits and recommendations for treatment; depending on your age and/or diagnosis, no more than three to six cycles should be performed. In fact, over a prolonged period of treatment (around six months) it can actually have an adverse effect and exacerbate the original issue, making it even harder to conceive.
Despite this, a lot of doctors keep their patients on Clomid longer than is necessary before moving on to other treatments. A common issue experienced by women are recurrent miscarriages. It’s recommended to see a reproductive endocrinologist if you’ve experienced more than two miscarriages – they could be caused by autoimmune or endocrine issues, or uterine or chromosomal anomalies. Don’t accept the excuse that it’s “just bad luck”.
Jennifer also advises prospective parents not to stick to just one doctor. Getting a second opinion is always a smart choice, especially if you’ve been seeing the same doctor for a long while – a fresh pair of eyes can sometimes spot something the first doctor missed, or suggest an alternative method of treatment.

If you decide to see an infertility clinic, be aware that many of them have cutoff ages for treatment. Some clinics will not see you if you’re over the age of 42 and want to be treated using your own eggs. Chances for success using that method aren’t the highest and the clinics don’t want to risk their success rates. Because of practices like this, remember to not live or die by SART success rates when choosing a clinic.
Additionally, always ask about “shared risk” and “cash back” IVF multi-cycle programs. Some clinics will not accept you if they know they’re going to have to give money back to you (in case your treatment proves difficult, or if qualifying testing reveals issues which may prevent you from receiving a successful IVF treatment). Ask a lot of questions, know what you’re getting into.

Another inside tip: don’t hold up your treatment just to see a particular doctor. In places where there’s a lot of people on staff, or in university based practices you do end up meeting most of their doctors anyway.

According to the Journal of the American Medical Association, the odds of you having a baby on your first IVF attempt are 29.5%. These odds stay steady through your fourth attempt, but it jumps up to 65% by the sixth. Jennifer believes it’s important to know this fact before your first attempt, as the knowledge can be comforting in case it doesn’t work on the first go. Some people assume IVF is like this magic bullet that just works on the first attempt. Not knowing the reality and the odds can cause additional stress and mental strain in case the first cycle doesn’t work.

Your partner is your main source of support, but constant worrying about fertility is just going to cause strain. Assign a fertility-free period – a night every other day, where you do literally anything BUT talk about fertility. Use a swear jar if you have to. This will keep your spirits up and your mental state more peaceful. Force yourself to have a period of time during which you simply don’t think about your treatment and have some fun. Infertility affects all aspects of your life – from the relationships with your friends and family, through mental and physical health, to your career.

The big thing about infertility and other similar diagnoses is that they tend to occupy all of our attention, thus intruding on all of those aspects of our lives. There are two things to remember here: first of all, infertility doesn’t define one’s self or one’s worth – it’s simply a medical issue that can affect everyone and that can be treated with modern medicine. The second thing is that stress caused by infertility tends to exaggerate our negative emotions regarding certain aspects of life. In order to fight that, remind yourself that there are definitely other areas where you keep succeeding. Stress related to infertility can also cause you to view everything in your life through its prism; it makes it seem like your whole life is defined by this one issue. Jennifer recommends doing whatever it takes to keep you safe – do not isolate yourself from your friends and family and spend time with other people, doing things that give you happiness and peace of mind.
Additionally, joining a support group – offline or online – can be a massive help. Being able to talk about your experience with other women who are going through, or have gone through the same process is incredibly therapeutic; they are also an invaluable source of information and tried and true methods for keeping calm and carrying on through stressful times.

Fertility Lifelines offers a list of support groups. Check them out.

Knowing your options when dealing with infertility issues is always a good idea. Just understanding that modern medicine offers you a literal arsenal of choices and approaches on how to tackle the problem is empowering – because it makes you understand that you’re not powerless. Understanding that you have the information, resources, and tools needed to make decisions regarding the issue give you the confidence necessary to maintain a positive outlook on things. Talk to your doctor, do your research and
learn as much as possible. Here are some of the options recommended for patients in various scenarios:

  • eSet: elective single embro transfer – this option is recommended more and more as it’s safest for both the mother and the embryo. Implanting more than one embryo, obviously, increases the chance of a multiple pregnancy. However, it also carries the risk of premature delivery and other issues which may threaten both the mother and her children. During eSet, only the healthiest embryo is implanted, which increases the chances of a smooth and successful pregnancy.
  • Freeze All Cycles: this method involving freezing every embryo generated during an IVF cycle. It’s based on recent findings, which suggest that IVF outcomes can be improved by allowing the uterine environment to return to its natural state, rather than implanting the embryos straight away during the stimulated cycle. As an added bonus, freezing the embryos also gives embryologists time to perform genetic testing on the embryos.
  • Mini-IVF: this approach is recommended for older women, women with PCOS, those with lower ovarian reserves and cancer patients. It involves taking a low-dose oral medication to stimulate ovulation, along with low doses of gonadotropins to induce the growth of a small number of high- quality eggs. It’s less taxing on the body than a full blown hormone treatment during a standard IVF procedure.
  • PFT-A, formerly known as PGS: by performing genetic screening of embryos, fertility specialists increase the chances of a successful implantation while reducing the risk of a miscarriage by selecting chromosomally normal embryos to transfer. This is the approach most commonly recommended for women who suffer from recurrent pregnancy loss (RPL)
  • Endometrial Receptivity Test: this generic test utilizes a small sample of a woman’s endometrial lining to determine the best timing to transfer the embryo after an IVF cycle. This is usually recommended if you’ve done PFT-A, but your embryos still fail to implant successfully.

 

Patients in the United States may encounter another problem – the lack of insurance coverage for infertility. According to an anonymous online survey done by EMD Serono and Resolve: the National Infertility Association, 47% of patients with insurance report that their plan covers less than half the cost of a single full IVF cycle. 61% of respondents paid out of pocket for a single cycle of IVF, covering costs between $15,000 and $30,000.

The problem becomes apparent if we look at a 2015 study published in the Journal of the American Medical Association, which found that women abandon IVF “too soon”, that is, after three or four unsuccessful attempts. This is a problem, as data shows that patients that do continue with treatments have a 69% chance of delivering a successful pregnancy after nine cycles. The majority of women – 65.3% of those studied – deliver a baby after just six cycles, particularly if they’re under the age of 40. How are women supposed to afford six to nine cycles if their insurance barely covers a single cycle?
Jennifer offers a couple of strategies:

  • If your insurance comes from your job, speak to human resources. Resolve, the National Infertility Association, has a lot of information on obtaining coverage through that method. There’s a whole page dedicated to research which shows how investing in IVF coverage actually benefits the company and saves them money in the long term, which has convinced HR
    departments in the past. Read more about insurance myths.
  • Reach out to your insurance company and make sure that IVF isn’t covered. Request either an exemption of benefits or ask how you can file an appeal to get IVF covered by insurance.
  • You can request documentation from your doctor supporting the case that IVF is medically necessary in your case.
  • Speak to your accountant whether any money you’ve spent previously can be filed under “medical” when doing your taxes.
  • Look into whether or not your Flexible Spending Account or your Healthcare Savings Account can be used towards IVF.
  • Ask your doctor and/or clinics whether there are any IVF clinical trials that you qualify for that may cover either the cycle or any of the medication. While you’re at it, sometimes patients
  • Finally, advocate for your rights. If you’re in the United States, Resolve will host its Annual Advocacy Day in Washington, D.C. on May 15 th and 16 th , where they will be campaigning for increased access to care. You are more than welcome to join!

Additionally, there are several organisations around the world which offer patients fertility grants. They are too numerous to list here, but do your research and see if there’s anyone offering such an option in your area.

Remember you’re not a bad person for having negative thoughts about yourself, but remember that infertility is just a medical issue that could happen to anyone. It’s just that – it doesn’t define your worth as a person; it’s just a problem that can be solved. You’re not a bad patient for asking your doctor questions. Don’t base your entire life around fertility – you’re a human being and you have other things in your life; maintain a healthy balance to stay sane.

If you’d like to reach out to Jennifer, feel free to connect with her on Twitter (@the2weekwait) or Instagram (@jennyjaypal).

IVF treatment – the patient’s inside story – Questions & Answers

Question:

Did you try different clinics for IVF?

Answer:

Yes! Every single IVF cycle I performed was at a different clinic. Every time it didn’t work, I was like boom – you’re gone. I’m a big believer in second opinions, so that’s what I kept doing – getting second opinions. When the first IVF cycle didn’t work, I went to a different clinic, I had ten eggs retrieved, but only one embryo – but during the previous attempt I had two embryos. I asked the second doctor “what do you think happened? Should we do something different?” and he said “It’s just bad luck, we should do the same thing again”. It seemed like the wrong answer to me, so I went to a third clinic, where I was recommended Menopur and estrogen priming and all these different things – and, complete transparency here, I’m not sure if it helped, because I ended up with one embryo again; however, trying all these different approaches really made me feel better, because I was actively trying to help my chances rather than trying the same thing over and over again.

Question:

How did you find information about different clinics, about their results and how they take care of patients?

Answer:

When I was doing my clinical trials, I was contacted by a site called Fertility Authority which asked me to start blogging for them – eventually hiring me. I sort of became the international call center for patients; I talked to a lot of them. However, I also ended up working with clinics all across the US, which put me in contact with doctors and clinics. That eventually turned into matching patients with clinics, because I would often be asked “which clinic would you recommend for me in California?” or New York, or Texas, so I would just call around different clinics and I learned what each one of them offers, which clinics are LGBTQ friendly, which ones will accept patients over the age of 42 et cetera.

Question:

I’m heading out to Alicante next Friday for my first Donor Egg Transfer. I liked your suggestion about having fertility free time, but how do you do this? It’s so hard to switch off! Also – what tips do you have to help you through the dreaded two week wait?

Answer:

Fertility free time is hard, but even if it’s one night a week, or even one meal where we just don’t talk about fertility, it’s a tremendous help. If you have to, get a swear jar, and any time anyone mentions anything about fertility during the free time, put a dollar in the swear jar; or, buy a bell and hit it every time someone breaks the free time rule. It takes a bit of preparation, but it’s worth it in the end.

As for the two week wait, find a TV show to binge on. I highly recommend RuPaul’s Drag Race – ain’t nobody trying to get pregnant on that show. It’s fabulous, it’s fun, and it takes your mind off of things. I also made a survival kit for myself, like you saw in the presentation. My kit had chocolates, a princess crown that you can wear if you’re feeling down, and a water gun for shooting people during hormonal rages. For me, the first week was okay – it was the second week that was tough. My general advice would be – whatever makes you happy, be it a TV show, a movie, going for walks, anything – if it keeps you happy, just do it. It’s all good.

If you’re interested in learning more techniques for coping with the two week wait, we recently held a webinar wit Andreia Trigo, a nurse specialist and coach, who shared her best tips for staying positive! 

Question:

When using a donor egg (21 years old) and donor sperm (29 years old), do you recommend doing PGT-A?

Answer:

This is more of a question for your doctor, but given that donors undergo genetic background testing before they donate their eggs, I don’t think it’s strictly necessary. In general, from what I know, PGT-A is recommended in cases of recurring pregnancy loss, or if you’re older. Again, it’s more of a question for your doctor.

Question:

What research should I do if my pregnancy stops at 6 to 7 weeks (with the heart not beating).

Answer:

A miscarriage in the first trimester – especially around six to eleven weeks – is very common. What you should do depends on whether it’s your first miscarriage or if it’s a recurring problem. If this is something that’s happened more than once, it could indicate a chromosomal issue, an autoimmune issue, or an endocrinal issue. In that case you should consult a reproductive endocrinologist, who can test your hormones or perform a test called HSG which will tell you if there’s any abnormalities with your uterus or fallopian tubes that may be causing a problem. Ultimately, if it’s the first time this happened to you, it might not happen again. If it’s not, however, definitely, DEFINITELY see a reproductive endocrinologist and ask for additional testing.

Question:

How do you successfully convince your insurance company to pay for IVF? It seems like a majority of insurance companies only cover medical prescriptions. I’m in Canada.

Answer:

It depends on where you’re located. If your insurance comes from your employer, definitely go talk to HR about it. If you’re in the US, go to Resolve, the National Infertility Association – they have a PDF study which explains to employers how offering IVF coverage in their insurance plans actually saves their companies money. However, if your company does not offer fertility benefits and your insurance is independent, you can file an appeal, ask for an explanation of benefits – and make sure you read the fine print! – and you can ask your doctor to write a letter explaining why it’s medically necessary for you to have IVF.

To go back to your question, however, Canada is kind of weird in terms of fertility benefits. Like in the US, it depends on whether your insurance comes from your employer or if it’s independent and the process is similar, but it has some additional requirements; you need to prove that you had IUI done, you have to be a certain age, you need to never have done IVF before.

Question:

Which clinic is good in Spain?

Answer:

Wait! Egg Donation Friends recently had an article about this topic! (link) Also, there’s this famous clinic in Spain that everyone talks about – which was mentioned in that article. Spain in general is considered to be one of the top destinations in the world for reproductive technology and there are a lot of great options there.

Question:

Do you have any opinion on test results on mosaic embryos?

Answer:

Such a good question. Mosaic embryos is a really hot topic right now. For those of you not in the know, I’m going to quickly give you a basic overview of what mosaic embryos are. When PGS testing emerged (these days it’s called PGT-A, but a lot of people still call it PGS), it was like hey – there’s good embryos and bad embryos. But as the technology moved on and got more and more refined, a new kind of embryo was found, which is technically both good and bad. That’s what’s called a mosaic embryo. There’s been so much debate in the reproductive community about whether or not these embryos should be transferred. While there have been some success stories (and about as many failure stories), we don’t know enough about mosaic embryos yet to form a good opinion. What one doctor said to me, however, and I think it’s a very good point, is that there always have been mosaic embryos – we only learned about their existence recently.

Honestly, the decision whether to transfer a mosaic embryo should be made by both the patient and the doctor. Personally, when I only had one embryo during my IVF and if my doctor asked me if I wanted to transfer a mosaic embryo, I would have said yes. Obviously, it varies from case to case, but you should discuss the option with your doctor – if all you have are mosaic embryos and you feel comfortable using them, then use them.

Question:

Do you know about any women around the age of 50 who have succeeded in having children through IVF, with donor eggs and with the help of hormones?

Answer:

Yes. There are clinics that I had worked with, whose cutoff age was around 52 to 54 who have delivered successful pregnancies. As long as your uterus is still working, it’s fine. It’s always the age of eggs that is the concern.

Question:

I’ve been reading about acupuncture and traditional Chinese medicine – apparently, both of them help with implantation rates, especially with donor egg transplants. However, I don’t see it listed at many clinics. Any info?

Answer:

It depends on your location. I know of a couple clinics in California and CCRM in Colorado, where they ask you to stay after the embryo transfer so that someone can come in and do acupuncture on you. CNY and Generation Next Fertility, both in New York, also offer these types of treatments. There definitely are some clinics that incorporate that east-meets-west approach into their programs, but you have to look for them. As for evidence whether or not acupuncture helps, there are conflicting reports and studies. For me, personally – I did acupuncture along my fertility treatments – I don’t know whether it helped, but it made me feel so relaxed, and let’s face it – who doesn’t want that?

Question:

What’s your advice for cryo protocol? For example, should I use progesterone before the transfer?

Answer:

It really does depend on your diagnosis and what they’re treating for. If they’re doing it before the retrieval, they’re trying to get all the follicles growing at the same rate to give you as many eggs as possible during retrieval. If it’s before transfer, it’s to help the embryo implant, it ensures it has the best uterine lining possible; that’s common protocol.

Question:

If you have a myoma in the top part of the uterus, where the baby usually attaches, can you still get pregnant? Have you heard of women who have become pregnant with myomas or endometriosis? I have just had a laparoscopy and a myectomy to remove a fibroid.

Answer:

If you have a fibroid, or anything in there, your uterus can something think it’s more pregnant than it actually is. You want to make sure there’s nothing in there affecting its integrity. If they did a laparoscopy and cleared everything out, there should be nothing preventing you from getting pregnant. I recommend you get in touch with my friend who specializes in endometriosis treatments, her name is Casey Berna – just google her. She can give you more specific advice than I can.  

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About the Author

Jennifer Palumbo

Jennifer Palumbo

Jennifer “Jay” Palumbo is a freelance writer, infertility and women’s rights advocate, former stand-up comic, author of the blog, “The 2 Week Wait,” and proud IVF Mom. Her articles have been featured on Time magazine, Huffington Post, and ScaryMommy, and she has been interviewed on news outlets such as CNN, NPR, and BBC, where she has demonstrated her ability to make even reproductive issues fun and educational. You can follow her "infertility humor" on Twitter at @the2weekwait or Instagram at @jennjaypal. LinkedIN >>

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