Hey PCOSters

[cachcoco]

Annette how was your BETA?????

I havent sent my application in yet. Still waiting for the doctors note. I literally just found out about all this two days ago. How long did the process tak for you? How hard was it to do the fundraising and what did you do? I have a ton of questions! lol! Thank you so much for allowing me to vent! I feel like a crazy woman!

[Annette]

Hi, my blood test was negative. But please don't let that discourage you from doing IVF, we also have other issues, male factor, glucose intolerance and a blocked tube.

How long the scholarship process can take really varies. For me, I sent in my application in February and got my acceptance at the end of April. Sometimes it can take longer for notifications to be sent out depending on when the review board is able to meet.

The fundraising part also varies in duration depending on how quickly the funds are raised. We were very fortunate to have a large donation sent in from someone we don't even know who saw our "Make a Dream Come True" page on the INCIID website. That along with family donations brought us to our goal in two months. But I think they have also implemented a new requirement for fundraising now, I have not gotten the full story on it yet, but I have heard that one of the fundraising efforts has to be something that raises public awareness about INCIID. There are tons of ideas and support for this part of the process.

Once the fundraising is done, the length of time to wait to be matched can also vary depending on what clinics have slots open and how many slots are open at any given time. So we finished our fundraising in June and were matched in November.

[cachcoco]

Thanks Annette and I am so sorry! Do you get another try?
I am afraid with the endo coming back I dont have that much time to go through the process. And I think there is like only the one clinic here in this area that donates time. I still plan on sending it in and doing all that is nessasary but I dont have a lot of hope... we will see. We also have male factor. I am not feeling very positive about it all anymore. As I am sure you have, we have been through so much.... for ten years. It is hard to have hope....

[Annette]

I don't get another try. Please don't feel discouraged from doing IVF because of how my cycle turned out. Everybody is different (even if they have common infertility issues), every cycle is different, and every pregnancy is different. And you said you already have one biological child right? So you know at least you are able to get pregnant? I have never ever had a positive pregnancy test so who knows what other issues I have. And I'm sure whichever doctor you would be matched with would deal with the endo if it came back. My feeling is that I had to at least try IVF or else I would never know. Your outcome could be so much different, I have a relative with similar infertility issues, she did IVF and now has twins.

[cachcoco]

You have such a great attitude. Thank you for your encouragement. I do have one but that was 17 years ago and a lot has happened since then! I am going to try and if it doesnt happen at least I know I tried! I would love twins!
so whast is your next step?

[Annette]

I am so happy to hear that you will give it a try

I'm not sure yet what our next step will be. I know that I'm not ready to give up yet, but at the same time I already felt un-helpable before our cycle and that fear has been magnified now. So for now I am just going to focus on healing and then later figure out how we are going to make this happen. My mom is retiring from teaching next year and offered to give me some of her retirement money for another cycle, but I just can't take her retirement money, it doesn't seem right (yeah, even though I used my 401k money to pay for our misc. cycle fees this time, I have much more time to make up that money though). So hopefully when the time is right I will be able to figure everything out.

[cachcoco]

they have medication grants... that you can get discounts and meds donated for free! I think you should do everything to get fixed like have a lap to diagnose and clean up any endo you may have. Do you have PCOS? I am old and feel unhelpable so I hear ya! This is our last try. After this I will have them take out my uterus so I can finally be healthy. I am still waiting to hear from the clinic about my letter and still nothing! I am in a bad mood today so I dont think I will call and ask for it again!

[Annette]

oh that's interesting, I didn't know that medication grants existed, I will have to look in to that.

I asked our doctor if it would be a problem for our ivf cycle if I did have endo and he said it wouldn't matter. I guess because my uterus passed all of the ultrasound tests? I don't know, but if I did have it I would have a fairly minor case of it. I do get extremely painful periods but the rest of the month I am fine. My mom and paternal aunt both had endo.

Yes I do have PCOS, our ivf doctor diagnosed me with that right before our ivf cycle, I didn't know I had it before that even though I have all the symptoms including taking Metformin for many years now for my glucose intolerance. I have regular periods and I seem to ovulate pretty much every cycle, so I guess my PCOS affects my egg quality and other aspects. I'm still learning about it and I know there's no cure but I'm hoping there's ways to improve egg quality and things like that.

You are 38 right? 38 is not old, so many people nowadays live into their hundreds, 38 is like a drop in the bucket. You still have time for ivf and so many people well into their 40's have done ivf successfully.

Maybe your doctors office is tied up because of the holidays? I know my doctors tend to be out of the office more around the holidays. It looks like the next scholarship application deadline is tentatively scheduled for March 15th so you have some time. I know that doesn't help the anxiety factor though.

[cachcoco]

Thanks so much! You did make me cry! I feel so old! Sometimes I wonder if I am being selfish and if so should I be. PCOS SUCKS!!!! I have a manstash I have to get waxed every six weeks and the cysts are very painful.... have one coming on now. It also makes me moody. I have been off my met for about three weeks due to insurance issues that will be fixed soon. I havent felt this crazy in a long time! Research all you can. I have never heard of it effecting egg quality. I have known for many years I had it but never had treatment till a few years ago! big difference on the met!
I will try to be patient. I am sure you are right about the holidays.

[cachcoco]

I cut and pasted the following from the clinic I want to use. There is a phone number for the med grants! Hope this helps!




One of the greater expenses of fertility treatment involves medication. Medications can cost up to $2,500 or more for each IVF cycle. Our nurses have extensive experience in helping patients obtain the lowest price possible for legitimate, legal medications and can offer advice regarding the various gonadotropin options available.

Serono, one of the leading pharmaceutical companies specializing in fertility medications offers a grant to couples who qualify financially. Apply by contacting fertility lifelines - 1-866-538-7879. Upon approval the order will be shipped to our office. Eligibility criteria include:
No insurance coverage for fertility medication
US Citizen or permanent resident
Qualifying annual household gross income based on a standard set of parameters including the Federal poverty guidelines. Most recent tax return and last two pay stubs required.
Have not received fertility medications through Serono's Compassionate Care program in the past.

Serono also has a new program called FertilityAssist. It provides free Serono medications for the third ovulation induction or IVF cycle if the first two were unsuccessful and Serono products were used.

Discounts (currently 20 amps for the price of 15) on Bravelle™ (uHCG) are currently available through the HEART Program sponsored by Ferring. Please ask our nurses for details when ordering medications.


Discounts (currently about 15% but may be up to 30%) on medications such as Follistim™ (rFSH) from Organon can be obtained by asking to participate in the DesignRx program when you request your medications. You can find participating providers and register at http://www.designrx.net This service is for patients who do not have insurance coverage or benefits for fertility medications.

[Annette]

You are not being selfish, wanting to have and raise a baby is one of the most unselfish things there is in the world, it means you have so much love to give and share.

I feel your pain on the manstash I am constantly tweezing between waxings. I don't really notice cysts, I do get ovulation pains but I don't know if that is related. I didn't know PCOS affected egg quality either, but that is what my ivf doctor said. Could be just something about me personally, I'm not sure. I had to start taking met years ago because I was getting dizzy and shaky a lot and having to pee a lot (high blood sugar). So I have my glucose intolerance under pretty tight control now. But if I didn't take my prescription for a few days I would sure feel it. I'm on 2000 mg daily.

Thank you so much for the info on the meds! I printed everything out. Serono did donate some of the medications through the scholarship program for the ivf cycle I just did, they are such a nice company. So hopefully if we are able to do another cycle somehow in the future they will be able to help us or one of the other med programs.

[cachcoco]

That is awesome that they donated the meds!
I had a hair on my nipple once... that was demoralizing!
We are getting snow right now and I need to town which is an hour away! Not sure if we are going!

[Annette]

Oh yeah, I'm very familiar with nipple hairs, I get those often. I just pluck them

I am in CA and we don't get snow really where I am. Be careful if you go, I get so scared driving in snow

[cachcoco]

we decided to go in the morning! We moved here from CT two years ago so I am used to snow but the wind is a totally new thing I cant get used to and the cold. -33 degrees is not fun! And my nipple hair was grey!!!I have never been to CA but hope to visit at some point.
Oh I also get the unibrow! So much fun! I do have a cyst coming in now. So It should be quite painful by christmas. I am used to it and we are just staying home so it should be all good!

[Annette]

You know what is interesting ~ while I was on the medications for our ivf cycle, I felt so much better physically. My face skin was so smooth and I wasn't hungry all the time like I usually am. The hair issues didn't stop, but it was so nice to have smooth skin on my face and not have nagging hunger all the time.

Also something else interesting that I read this morning ~ an article that said women with PCOS actually have fertility rates that improve with age! Something about hormones being more balanced as you age if you have PCOS.