Video: PCOS Support Webinar Recording from October 2012


Lisa Stack, CNY Fertility Support Coordinator
Hi everyone! Welcome to the Evening’s Interactive Fertility Support Webinar. Tonight, we’re going to be discussing the emotional challenges of PCOS. If you’re coping with PCOS, you know that it can be incredibly challenging. Not only are you coping with your infertility, but there are also various metabolic challenges that you have to cope with as well such as those wonderful symptoms like difficulty losing weight, you may have acne, you may feel slow and sluggish, you may feel slow and depressed—there’s just a whole gamut of symptoms on top of infertility that you have to cope with when you have PCOS. Those added stressors that add pressure can really make infertility with PCOS its own unique creature to deal with.
Tonight, what I wanted to do was spend some time, about 20-30 minutes talking about the emotional challenges of PCOS answering any questions that you may have, addressing any topics that you have and helping you through it. What I’d like you to do is to initially really realize that PCOS is not your fault. The issues with weight loss that you may have had that yo-yo weight or really struggling to lose weight or struggling to maintain weight—that’s not your fault. It is incredibly challenging for women who have PCOS to maintain their weight and to keep it at a nice and healthy level. It’s just a lot harder for you to lose weight; it’s a lot harder for you to work against those carb cravings. It’s a lot harder for you to stick to a low-carb, low-sugar diet; which in turn, is exactly what you need to do. Don’t put so much pressure on yourself that you haven’t been able to lose those 5, 10, 20 pounds—whatever it is—because your body is really working against you, unfortunately. There are medications that we can help you with and would be happy to help you with such as Metformin, which will help you work towards maintaining that healthy weight. I know that it is one bit of the emotional puzzle that is very challenging for many people to cope with. Know that you’re not alone, and that’s not your fault.
Additionally, I think sometimes it can feel burdensome to have to take on all of these other lifestyle changes instead of just coming in for fertility treatments. Essentially, with PCOS you just can’t come in, take the medications, and be on your way. Often, you have to make these lifestyle changes with diet and exercise, being more aware of what you eat and more aware of your body, and the amount of exercise that you’re taking in, while dealing with all of these other symptoms—that’s PCOS that really kind of pile on the stress, worry, and responsibility that comes with coping with your fertility and PCOS. There really is a lot to undertake here. For some, it can be very challenging.
I’d like to just open it up to any questions that you may have any topics specific to PCOS or your infertility; I’d like to help you with them tonight. What I want you to do is try and remember that when you face these challenges such as infertility, such as your weight. Maybe you’re coping with acne, maybe you’re coping with hair growth in various places that we really don’t want it to be; remember that that is your PCOS. It’s not something that you’re doing necessarily wrong; it’s just something that we have to cope with within our bodies. Luckily, we have many treatments available to help you cope with them. I can attest that I have been able to completely turn my lifestyle around, my life around, and my fertility as well by really focusing in on improving health, wellness, and just my overall feeling of in control and my body’s reacting properly, and it really just has a wonderful response.
To share a little bit—my PCOS journey started right when I was about 16-17 years old. My periods were never normal around that time. When I went to college, I just stopped getting them that first year; they just didn’t come. I wasn’t sexually active, so I knew it wasn’t that. We were really kind of puzzled. After my first year of college, I had always been thin and active up until then, but then I gained 30 pounds within 3 months. We had no idea what was happening. I really didn’t change what I was eating. I had a little bit of stress. Obviously, I was in my first to second year of college, also transferring schools. I thought that it was stress. I went to my doctor and said, “I’m not changing my food, I’m not changing my exercise. What’s happening?” Finally, I had an ultrasound and we figured out that it was PCOS. I got on Metformin; I tried to work on diet and exercise, and realized how very hard it is, especially in college. I went to a big football school so it was pizza and beer all the time. It was very hard to work on limiting carbs and starches. I did it and the weight slowly started to come off. It took a long time, and then I would kind of get lazy with my diet changes, and they’d shoot right back up.
Once I got married, and we decided to conceive, we used Clomid and we were able to successfully conceive, along with Metformin, progesterone and estrogen; the whole package. We carried that daughter to full-term. When she was 19 months, my periods returned, and my health was wonderful. My weight is way back down to where I was in high school, which is a healthy weight for me. I’m much more active. I have a lot more energy. I’ve really removed a lot of the carbs and sugar and got back on the Metformin. We conceived again naturally, but then had a miscarriage at nine weeks. Then we were able to conceive again, and were able to carry that pregnancy to full-term. PCOS is still a struggle. Even though it’s under control, it’s still something that we have to consider all of the time. When we go to conceive again, it’s something that is going to be in the back of my mind—ugh—I’ll just have to go through the medications and stay on Crinone forever, and take Metformin which always makes me sick. You have to cope with all this in the back of your mind.
Luckily, we do have great treatments available. They don’t work exactly perfectly for everybody, but a lot of people we can really get to that point where it can get you to ovulate, and we can get you to conceive. Then, we can get you to hold the pregnancy. So if you have any questions or thoughts on any of the challenges around that, you heard my story so question up and I’d like to go to that. Let’s see:
Question: I had an allergic reaction to Metformin. Are there any other meds out there to help?
Answer: I would ask a nurses or one of the care providers for any other medications beyond Metformin. There are forms such as Glumetza and other generic forms and Metformin in the extended-release; but that’s something that I would definitely ask the nurses.
I took Metformin for my first and my third pregnancies. I was not on Metformin during my second pregnancy, and it ended in miscarriage. I don’t know if that caused it; we will never know. I do know that I feel better when I’m on my dose of Metformin. If that’s something that you’re interested in, something that your physicians or your providers that we have recommended for you and you had an allergic reaction to it, maybe there is something we can switch for you or look into your insulin levels – we can take a look and see how insulin resistant you are and maybe we can make some changes there.
If you’re looking for other ways to help support your insulin resistance and help work through them, I would recommend meeting with one of our registered dieticians. They can give you great nutrition suggestions so that you don’t have to completely cut everything out, but you can swap out maybe some healthier choices for some of the foods that you really love and enjoy. It’s not like you can’t have pizza ever again, but maybe you can swap it out once in a while.
Additionally, acupuncture and yoga I have found very helpful. I know that we say yoga and acupuncture for everything, but I did feel like it was particularly helpful trying to conceive and maintain pregnancy. Yoga was a good way for me to exercise that wasn’t intimidating when I was first getting back into it, because I had been out of the gym for a long, long time. So, for me to go run on a treadmill when I was at a much heavier weight, it was just challenging for me because I felt like I was never going anywhere. I felt like I was never making any progress; and I just hated it essentially. I found yoga to be very inviting. It worked well with my body. I really enjoyed the shape that my body started to take with it and how I felt. I felt that that was integral to me conceiving. Acupuncture—we had one cycle with a very large cyst, my lining was very terrible—I can just say—it was as thin as could be. We pretty much almost canceled the cycle with my daughter and I’m happy that we didn’t because my lining was just so close to nothing. I do think that acupuncture did help with calming down some of those larger, more dominant cysts and also increasing blood flow to the lining, and keeping a nice, healthy lining which is of course, very important.
Those are two things that I found to be very helpful. If you’re finding that you need to keep responding to your PCOS and keep working with it further, the path that I’ve chosen is to eat intuitively. I know that there are certain foods that when I eat them, and I feel awful for hours. I know that they don’t work well with my body, I know that I’m going to regret it, I know that I’m going to be tired and sluggish, and feel kind of down after I have them. Pasta is one of them. I love it, and I really wish that I could have it, but I know that if I have it that I’m just going to feel awful for hours after. I’ve just learned to withhold and to not have it. That’s been working for me. That has helped me to feel emotionally much better. I’m much clearer and not as lethargic, and not as many peaks and valleys of feeling a little more anxious or depressed. That has definitely helped me. That doesn’t work for everyone, so try eating intuitively if you feel like you’re responding to it well. Just know that that is an option for you as well.
Aside from all of the treatment options, coping with the emotional, coping with all of the symptoms of it is just very challenging. You really need to try to go very lightly with your emotions, and with the thoughts that you’re having. I know that I had felt very frustrated that I wanted to conceive, I thought that this was what I was meant to do. I was ready to conceive, but my body was working against me. I felt very feminine and that I wanted to be able to be the mom, and to be the shapely mom that I wanted to be. At the same time, my body was reacting in a way that it wasn’t acting very feminine at all. Instead, I had a higher testosterone which was a hit to my confidence, and a hit to my femininity, and my identity in that aspect. Those were things that I had to cope with. If you’re feeling similarly or you’re feeling like you’re just sort of listlessly wondering what the next step is or what your roll is, I’d like to remind you that your partner didn’t choose you because he or she thought that you’d be able to carry children. You weren’t chosen because they thought you had fantastic ovaries, nice and smooth, with no cysts on them. They didn’t choose you because they thought, “Oh, she must have a wonderful uterine lining.” No, you were chosen for so many other reasons beyond your fertility, and beyond your potential to conceive and carry a child. You were chosen for your laugh, for your smile, for your personality, for your love that you give, for your vision, and for your patience. Don’t focus as much on this as the be all and end all of making it or breaking it. Having a child is the most important thing to you right now. I understand that feeling. This isn’t everything that is you. there are many things about you that your loved ones love about you; so don’t forget about that when you’re feeling like you’re failing at all of this because you can’t get your weight under control or you can’t control the PCOS, and you can’t conceive. It feels like your hitting road block after road block, and you’re not delivering where you feel like you should. Just remember that there are so many other things about you that are important and that your friends and family members do love about you. It’s important to focus on those.
Are there any questions that I can answer for anyone or any thoughts that you may have? I’d like to welcome those. I know I’ve been chatting for a long time, so I’ll take a break from that for you.
Additionally, what is very important is to be really mindful with the stress and anxiety that can happen with PCOS. That is one of the symptoms that you can find, especially when trying to conceive and coping with infertility. We want to make sure that you’re giving yourself the space for your emotions and giving yourself the space for feeling anything that you may be feeling. If you’re frustrated with this, if you’re angry that you have to cope with this, if you’re depressed that you haven’t conceived yet, if you’re feeling a little lost in your treatment—that’s all OK. It’s important to just give yourself the time to feel this emotion, and then move on. If you’re feeling like you’re having difficulty just breaking the thought cycle—that’s OK too. It’s very normal and it does happen very frequently to all of us. What I recommend that you do is that I have a couple of coping tools that many have found helpful, and I’d like for you to try them; especially when you’re really kind of stuck in that thought process of “Am I going to conceive? Why haven’t I conceived yet?” It should come soon.
What I’d like you to do first is to think about your happiest moment. What is the happiest day that you can think of? What is the happiest moment? Was it your proposal? Was it when your partner proposed to you? Maybe it was when you first met your partner, maybe it was when you graduated from college. Whatever that happiest moment, that most blissful thought is—try to go there for a moment and try to recreate it completely. Think about what you were wearing, about what the other person was wearing, where you were. Was it sunny outside? Are there any distinct smells? Really place yourself in that moment of happiness. When you’re feeling these overwhelming and repetitive thoughts of stress, anger, and frustration and keep replaying them over and over again—bring yourself back to that that thought. Bring yourself back to that happy, blissful thought. Then you can bring your mind back to whatever activity you were doing; if you were at work or if you’re out and about, and you can’t stress about this too much—go to this blissful thought and let your mind wander back to whatever the task is. It’s kind of an oscillating thought, so you have to back and forth and try it over and over again. I find that very peaceful.
My immediate image goes to when I first saw my husband. If I’m starting to feel overwhelmed, stressed, anxious, or a lot of grief over the miscarriage or over the infertility then I’ll bring my thought back to that moment and suddenly I can feel the calm and a bit more peace. Additionally, another exercise would be for you to set the alarm on your phone. So, set the alarm on your phone every ten minutes every day. During those ten minutes, you can run wild with the thoughts. You can run over your fertility, you can run over your PCOS symptoms—everything that’s been driving you nuts—all the grief, anger, and frustration. All those thoughts that you go through, you get to do them for ten minutes. Then once those ten minutes are over, you have to just put those thoughts down until the next day. Get up, do something different, get something to eat, go for a walk, exercise, do a different task at work—whatever you may be doing. Once you finish those ten minutes of running through all of your thoughts that you need to for the day, put them down, and then move on. They will be there for you tomorrow. You don’t have to worry; the worry about your infertility will still be there. Just try and isolate the repetitive thoughts to ten minutes a day. Then when the alarm goes off, put them down until tomorrow.
OK, we have a question.
Question: Have you heard of many success stories with ovarian drilling? I didn’t respond to Clomid and I can’t afford the injectables.
Answer: We have had success with the Ovarian drilling, absolutely. Ovarian drilling is essentially what you do is – it sounds terrible – but it isn’t that bad. So, with PCOS you have many cysts around the outside of your ovary. The thought is that having all of these cysts there and all that pressure in the ovary is inhibiting ovulation. What we do is we go in with a very tiny needle, and we puncture as many cysts on the outside of the ovary that we can see, and that we can get to. The idea is that this releases a lot of the pressure and removes/deflates many of the cysts, especially the big ones. We get as many as we can. Then it helps to quiet the ovaries down. We have found that many clients have ovulated and conceived on their own after that. Ovarian drilling seemed to be that switch that was needed, that change of equilibrium and that change within the system to really kind of release the pressure and allow the body to kind of reset and ovulate on its own. We’ve have seen success rates with that.
Question: Is there a decent success rate with using injectables when you’ve had IUIs and PCOS?
Answer: Yes. I would recommend that you speak with one of our practitioners. You can either set up a follow-up talk or you can ask them at your next appointment during your consultation about your specific success rates and what the success rates are right now; but your success rates are higher with doing injectables and IUIs, than they are with Clomid, than they are with timed-intercourse, than they are with doing injectables with intercourse. So, injectables with IUI have the highest success rates of conceiving. The next highest would be IVF. If you’re not ready to go to IVF injectables or IUI, would be the top-of-the line go to with the highest success rates for the condition. This, of course, can change depending on your consult with us. Of course, you have to have it clean and open tubes for an IUI to work, but if you’re not ready for IVF yet, injectables with IUI would be your highest success rate.
Additionally, if you’re overweight which many women with PCOS are—I used to be—a decrease in your weight by ten percent if you are overweight has been shown to increase your chance of conceiving as well. Try to shed some of that extra weight that you’ve been carrying around a little bit. It’s very challenging to do—I understand that. I definitely understand how hard it is to lose weight. If you can decrease your weight right now if you are overweight, try to work on that a little bit that’s enough for some women to get them to ovulate.
We have seen women who have just started kind of eating right, really listening to their bodies, exercising, taking their Metformin, and working on weight loss, and they lose a certain amount of weight and suddenly their able to ovulate and conceive on their own. That may be just what puts your body over the edge to get you ovulating on your own, to get you conceiving. You don’t know how these changes impact your fertility and how quickly they will. I was very surprised by how quickly mine did when I started taking the Metformin and decreasing the sugar intake, and exercising a little bit more. I definitely felt an increase in my fertility. I still used Clomid, and I still needed supplements. Definitely in pregnancy, my progesterone rate levels were another one that was very low. I did notice a benefit so I wouldn’t discount also focusing on diet and exercising while you’re pursuing fertility treatments. Diet and exercise are absolutely not for everybody and they absolutely will not make everyone conceive, and I’m not trying to minimize anyone’s fertility struggles. What I am saying that while you’re pursuing an IUI with injectables, while you’re pursuing Clomid or IVF maybe just staying a little more conscious about your diet and exercise, making sure you’re taking your Metformin and your prenatals, that may just help push you over the edge as well. Just giving the medications a good, healthy body or at least the healthiest body that we can work with to help them work. We have one question, let’s see:
Question: What can be done about the excessive hair growth on your face? I’m super self-conscious about it and it makes you not want to be seen in public. Same goes for the skin darkening on the neck and underarms—can anything be done to decrease the side effects.
Answer: Some women do notice a decrease in the hair growth side effects of PCOS with a decrease in weight while taking the Metformin. The idea is that when your insulin is under control, you won’t get those more unfortunate side effects. To work on it, what is already there, some women have found success with the laser, so laser hair removal and some laser treatment for skin lightening maybe available within our CNY Healing Arts. I’m not sure about skin lightening if that is an option. We do have laser hair removal which some women do like, especially if it’s been years and you still have the same trouble spots, maybe try the laser hair removal for that. The idea is that for many women that once the insulin levels are under control, your insulin resistance is controlled and those side effects decrease and start to go away, and you will see a great improvement in them.
It’s not fair to have to feel self-conscious about going out in public while you’re also dealing with your infertility. So, I’m very sorry that you have to deal with that you have that side effect. It really is just not fair that you have these physical side effects as well as the infertility. It’s just a terrible double-whammy.
Question: I seem to be having harsh side effects from Metformin, systemic diarrhea, headaches. I’ve split your dosage up between the morning and with meals, adjusted dosage, but it seems to be still just as bad.
Answer: Metformin is tough. I found that I could only handle, most of the times, I could only handle about 1,000 mg. I know that the typical dose is 2,000 mg. What I did is make sure you’re starting out low, and slowly increasing your dose. If it’s making you too sick, maybe try to speak with one of the practitioners going down 500 mg, maybe taking 750 mg or 500 mg, instead of 1,000 mg. Maybe even taking 1,000 mg from 2,000 mg. I think it’s important to make sure that you’re not sick all of the time, but also still getting the benefits of Metformin, so I would ask the nurse if the next dose at the next appointment—what dose you’re at and what you can safely go down to. Make sure you’re adding it in slowly. Don’t just start out taking 2,000 mg because you will absolutely get sick. Start out with 500 mg for a week to two weeks, I believe the timeline they’re saying is now—and then go to 1,000 mg, then 1,500 mg, and then to 2,000 mg or whatever dose you’re going to. I couldn’t handle my full dose, but I did still stay at 1,000 mg and I did still feel the benefits of it. I feel like it was integral to me holding onto both pregnancies that were successful. I would ask the practitioners at your next appointment if you can decrease your dose; but you’re right, taking it with meals, splitting it up during the day, trying to maybe space your prenatal vitamin out too—if there’s iron in your prenatal vitamin, that upsets some stomachs. Maybe do Metformin, prenatals at lunch and Metformin at night. Then, going slowly and trying to add it as slowly as possible.
Question: Is there another medicine besides Metformin that helps with PCOS?
Answer: Not that I know of. Metformin really is our go-to just because there have been so many studies on it, that’s what we use. There’s Glucophage, which is the name brand dose which is a slow-release so the traditional Metformin isn’t what it used to be. You’ll have to ask the nurse and the physicians. Traditionally with Metformin, you used to get the big dose and then a lot of people were having the GI side effects. The slow-release, Glocophage or Glumetza releases slowly over the day. So, when I took that, I did take Glumetza as well and I tolerated that better. It was much slower over the day, not as much as that big initial dose, and then you kind of taper off. It releases slower and you have fewer GI side effects which is very beneficial.
Any other questions? We’ve had some great questions tonight! What I’d like you to do is if you have any questions about your medications, medication options, treatment options go ahead and ask us at your next appointment to make sure we answer all of your questions and make sure you’re satisfied when you leave because this is your baby that you’re talking about and your body. Also, make sure that you schedule a follow-up talk or a consult with us if you’re considering cycling with us or if you have some questions and you haven’t cycled for a while, and maybe want to try something new and you want to know your success rates—that’s an option.
You can also make an appointment with our acupuncturists and they can give you a great traditional Chinese medicine kind of script for what you should be eating, what you should be avoiding, how many acupuncture sessions they think would be helpful or when. That’s also a great resource for you. Don’t forget that you get a free acupuncture session at the time of your IUI or IVF now. You also get free Yoga for Fertility at any time. That’s something that you can go in and use as a great resource and enjoy. It’s something completely free and accessible to you at our centers. Go ahead and try that Yoga for Fertility. You can always email me if there are any questions or call me if there’s any support that I can offer you—emotional support with PCOS. I do know it’s challenging but just stick with it. Really, what I’ve learned working here is persistence—it’s what really pays off. It’s the clients who we weren’t sure if they were going to conceive, they just kept coming back and coming back and trying new things, and sticking with good healthy diet, and sticking with trying to stay positive even when they’re feeling like there isn’t anything else to stay positive about. Those are the ones who give us those great Success Stories, so try to stick with it and be persistent.
It’s a long road, and it’s a long road with PCOS. Like I said, it has all of those nasty side effects that you have to cope with on top of being infertile or experiencing miscarriages or what you may be experiencing is worth it. Just stick on the road and you will get there. If it doesn’t look like how you had imagined it would look, you’ve learned a lot on the way, and you’ve done a better job taking care of yourself, nurturing your emotions, nurturing your mind, thoughts, and heart. You’ll be able to cope easier with whatever happens along the way. Definitely just stay on that road, and be very patient with those thoughts. Don’t get angry with yourself about weight loss or any of the hair growth, acne, or depression. When you start to get those thoughts about feeling negative about that, just remind yourself that it’s the PCOS—it really is out of my control. I can work hard, but I can’t control it. Try and remember that. Be patient with any stress or anxiety that you’re feeling. Give yourself plenty of time to rest and relax. Always ask yourself questions. Don’t leave the office without feeling exactly what you’re doing or that you’re getting the best treatment. Like I said before, this is your fertility and it’s your baby. Thank you very much for attending the webinar. If there aren’t any other questions, we will end. You can always email me or call me if you have any other questions. I’ll post this video on the site, so you can reference it. This is a great, great chat on PCOS. Please let me know if there is anything else that I can do for you. Have a great night.

Lisa Stack, Support Coordinator