As many as 10% of women of reproductive age suffer from Polycystic Ovary Syndrome. Apart from other symptoms, the infertility rate amongst PCOS patients is very high. Since the syndrome limits ovulation, conceiving might prove difficult.
One of the greatest concerns of women with PCOS is that the syndrome would affect their chances of getting pregnant. Twelve years after receiving her PCOS diagnosis, Sasha Korobov knew that she had to act and take the upper hand over the condition and her chances of a future pregnancy. Facing her fears head on, Sasha decided to freeze her eggs. She shares her experience with Dreaming of Baby.
Daniela: Good afternoon, Sasha, and welcome to Dreaming of Baby. Today we shall be talking about PCOS and fertility, mainly about your experience in addressing this condition and all that it brings with it. It would be great if you could introduce yourself to our readers.
A PCOS Diagnosis
Sasha Korobov: Hello, all! I am Sasha and I am 34 years old. I was diagnosed at age 20 – I had put on about 45 lbs in six or so months and periods had gotten irregular. I was in a long-term relationship at the time, so I thought it was “happy weight” but when I went nine months without a single period, I went to the doctor and, by running a portrait of other symptoms, got the diagnosis.
Sasha Korobov: From then on, I had to really understand what this would mean not only for my fertility but my everyday. People don’t understand that this is an aggravated condition that you’re always trying to manage: from hair growth to acne to mood swings, to fertility.
Sasha Korobov: “Working with a reproductive endocrinologist taught me a whole lot about not only medical intervention to fertility but what the implications of PCOS are in the process.”
Sasha Korobov: At this current stage, I am 34 and single. Back when I was 32, still single, I knew that I needed to try and take a little control. So I went ahead and froze some eggs in no small part due to the fact that I didn’t have a partner and, when I did get one, would PCOS complicate my chances of getting pregnant?
Sasha Korobov: Working with a reproductive endocrinologist taught me a whole lot about not only medical intervention to fertility, but what the implications of PCOS are in the process. It was really eye-opening.
Daniela: Wow, what a journey! It’s inspiring how you took control over the syndrome, rather than having it take control over you. What was it like coming to terms with the diagnosis initially?
Sasha Korobov: I honestly don’t know that I still fully came to terms with it. It felt so unreal and removed when I got the diagnosis since I was so young. But now, as I’m in my mid-30’s, I know I have to really reckon with it and make some hard decisions. Weight management is a consistent struggle – I am overweight and that only aggravates the symptoms. I say that I haven’t come to terms with it fully yet because I still wrestle over doing the right things to manage it all.
Daniela: I understand; so what changed the most from how you addressed the condition in your 20s, to now?
Sasha Korobov: I have come to terms with the fact that I have to be on a birth control regimen, even though I don’t want to. I’m also more comfortable with talking about it. I wore it as a badge of shame for the first ten or so years, because I thought something was wrong with me. And then I realized the more I talked about it, the more others would be like, “I have that, too!”. It’s nothing to be ashamed of. I have friends who have gone and had perfectly normal and healthy pregnancies and manage symptoms. It’s a part of their lives, but it doesn’t control them.
PCOS and the Egg Freezing Process
Daniela: Indeed, many women, unfortunately, know PCOS all too well. We have found that many of our readers do worry about how PCOS will affect their fertility. What led you to take the step towards discussing your options with a reproductive endocrinologist?
Sasha Korobov: Fear, honestly. Both about age and PCOS. I knew about the struggles women have conceiving with PCOS and I don’t have a partner so tick, tick, tick went the clock. It gave me enough anxiety that I felt compelled to be proactive. I already had a reproductive endocrinologist since I sought treatment for PCOS, so I already had an expert I could consult with about the prospect of an egg freeze.
Daniela: What was your experience like, from deciding to preserve your fertility by freezing your eggs, to the process itself?
Sasha Korobov: I honestly didn’t struggle with the decision one bit. It was cost-prohibitive, so I went as far as to take out a loan. Once I was armed with the information and the doctor determined that I had a really good egg reserve, I was full steam ahead.
Sasha Korobov: As for the process itself… the PCOS definitely made it harder, and it’s a hard process to begin with. Instead of being on injections and meds for the standard two weeks, I was on for almost three and a half because the PCOS meant my eggs were resisting maturation and development. Not only was this more time doing injections which took an emotional toll, but an extra $3,000 for meds which wasn’t covered by insurance. Since this was considered an “elective” procedure, it was all out of pocket. It hit my wallet. Hard. And again, I was very emotional during the process because I understood the gravity of the decision I was making.
Sasha Korobov: “I was very emotional during the process because I understood the gravity of the decision I was making.”
Daniela: That must have been very challenging to experience. We’re very grateful that you’re ready to talk about this for the benefit of our readers who are in the process of taking such a decision. As for the egg retrieval process itself, what was it like to experience it first-hand?
Sasha Korobov: Terrifying – I cried on my way into the procedure. But I was also full of hope and feeling empowered about what I was doing. When all was said and done, they retrieved 11 eggs, with 10 healthy enough to freeze. It’s a lower number than they would have wanted with my age, but they said it was still a good solid number and the fact that 10/11 were in good health was a relief. It also took a lot of pressure off me.
Sasha Korobov: “I was also full of hope and feeling empowered about what I was doing.”
Sasha Korobov: The thing is, though, it’s not an insurance policy. There’s a lot that could impact the future of the eggs – whether they survive a thaw, whether fertilization is successful, then whether implantation is successful, and then whether or not the pregnancy is carried to full-term. So, when you think about it that way, 10 isn’t a super-high number. I’m looking into finances to see if I can swing it again in the next 18 months.
Sasha Korobov: But I would absolutely do it again and would recommend talking to a reproductive endocrinologist if it’s something you’re contemplating.
Daniela: You mentioned earlier on that you learned a lot about PCOS when you spoke to your reproductive endocrinologist. Did this change how you view PCOS, and your efforts to address its symptoms?
Sasha Korobov: Well, I learned something VERY exciting which is that believe it or not, women with PCOS actually tend to have much higher egg reserves! This tends to be because of the lack of ovulation, so the eggs just kind of hang out. I learned how important it is to try and lose weight if I do the procedure again, as well. The doctor thought I may have had a better result had I been more in control of my weight.
Daniela: We learned a lot about egg reserves in our interview with Dr. Aimee who shared much insight on this subject in relation to PCOS.
Sasha Korobov: Yes. I was happy to learn that there can be at least one benefit to PCOS!
Daniela: Indeed! As a PCOS Sufferer, and apart from having to take medication for longer, what was the greatest hurdle to overcome when it came to preserving your fertility? Did it require specific lifestyle changes?
Sasha Korobov: Yes – I have to be mindful of carb intake and the impact of insulin resistance. I read “The Obesity Code” to try and gain an understanding of insulin more and it was very eye-opening.
Daniela: You’ve shared with us your wish to go for another round of egg preservation. Is there anything you’d do differently this time?
Sasha Korobov: Lose 10-20% of my body weight first. Otherwise, I wouldn’t do anything differently, but I’d be wiser. It requires getting a checkup including blood work literally every other day and being prepared to feel lonely in the process. I had never met anyone who had done an elective egg freeze, so I didn’t really have anyone who “got” it, except for reading blogs and message boards.
Daniela: In this regard, do you think that having a support network would have made the whole experience easier to manage?
Sasha Korobov: Having a network would be great for morale but, really, every experience with the procedure will be very individual. So, I wouldn’t tell women what to expect with their journey because their bodies are different from mine. But with the emotional piece, absolutely.
Daniela: Was there any downtime involved?
Sasha Korobov: I was down the day of the procedure, and as a precaution took the following day off work. I was fine after that, but held off on exercise for two weeks as per doctor’s orders – and that was hard because I’m a Zumba instructor and I love to do Zumba. But, I obviously had to listen to the doctor.
Sasha Korobov: There was some tenderness and a little aching, but nothing a little Advil wouldn’t fix. They gave me Tylenol 3 for after the procedure, and I didn’t need to take it at all.
Daniela: At this point, and after taking control on preserving your fertility, how do you view your PCOS diagnosis?
Sasha Korobov: As just another part of me and something I just have to manage, like any other regimen. I feel much more in control of my options and empowered.
Sasha Korobov: “It’s okay to talk about it! Reach out and ask other women what their experience has been. There’s power in numbers and in support.”
Daniela: That’s very positive to hear! Thank you for sharing your journey with us Sasha. On a final note, what would be one piece of advice that you’d want to share with other women going through the same experience?
Sasha Korobov: It’s okay to talk about it! Reach out and ask other women what their experience has been. There’s power in numbers and in support. And, to that end, I’m grateful for the opportunity to share my story. I would have never done this 10 years ago – in doing this interview, I realize how far I’ve come. So thank you for doing important work.
Daniela: What you shared with us today is indeed inspiring: you’re helping many by sharing your experience. Thank you, Sasha!