My PCOS & IVF Story
As hard as I followed the PCOS Checklist for Trying to Conceive, I still couldn’t! I knew something was up and headed to the doctor for a more invasive look. I had a laparoscopy over the Summer. The laparoscopy was needed to remove a large cyst on my left ovary that had been growing for some time and to remove endometriosis, which upon the surgery they realized was more severe than expected. They also discovered that my left Fallopian tube was pinched, and could not be fixed.
The laparoscopy gave insight into my causes of infertility. The issues are: I have PCOS, which causes immature follicles, and both of my Fallopian tubes are damaged. So as hard as I tried, natural conception wasn’t going to happen for me, at least not according to my OB.
Due to my bum Fallopian tubes I was pointed in the direction of IVF, In-Vitro Fertilization.Using IVF, they could bypass my tubes by removing the follicles, creating blastocyts and implanting directly into the uterus.
It took a few weeks to wrap my mind around the cost and various IVF components, i.e. constant injections, blood draw, general anesthesia, egg retrieval, uterus scraping, and so on. After that initial anxiety I started getting excited- this is it- I’m guaranteed a child- or so I thought.
First things first, I have PCOS (obviously!) which means I have immature follicles, which means they require more drugs, which means I am at risk for OHSS, Ovarian Hyperstimulation Syndrome, which can lead to hospitalization. Also, since I’m prone to cysts, any hormonal drugs might cause new cysts to form- which is obviously bad!
Because of the concerns above I was put on a low-dose medication IVF protocol, which consisted of two injections nightly (1 vial of Menopur and 225 Follistim) for the first 8 days and then three injections the next two days (adding Ganirelix). Finally, they added a Lupron trigger shot, followed by a last minute HCG shot. I stopped all supplements and only took the prescribed Pre-Natal vitamin and prescription Folic Acid. **The ONLY way I survived the anxiety-pain of these injections was by icing my stomach before the injections (thank me later for the tip!) so the shots were pain free.
At the first ultrasound, pre-meds, I had seven follicles on each ovary! That would be 14 possible eggs- if no other follicles developed- which would be great. Surely with all those meds my ovaries would be growing mature follicles, I mean that’s how the meds work with other women- some ten years my senior. But oh no, let’s remember I have PCOS, and those immature follicles had no plans of maturing! Not only that, but no new follicles grew- which surprised the doctor a bit.
I went in every other day for blood work and my blood work always looked good. At the end of 8 day protocol I had gained 9 pounds! So a pound a day, which I fully attribute to the meds.
Out of those 14 original follicles only 4 grew to acceptable size with all the meds. They even gave me a last-ditch effort injection of HCG the afternoon before my retrieval to try and get the other 10 to mature, the HCG was unsuccessful. The 4 large follicles were sized between 17-21 and the immature were sized between 7-10.
They were able to retrieve 4 eggs and used ICSI to create 4 embryos. Of those 4, 3 embryos stopped progressing within a few days. My last embryo didn’t progress until Day 6, which is the very last day the lab will consider their viability, typically they only do until Day 5. And that embryo- now blastocyst- only has a ‘fair’ grade (on a Good, Fair, Poor rating scale). I’m holding out hope for this little guy (girl?)!
I was on the pill for an additional 5 days after this and then stopped to incur a period. Now it’s time for the second set of stims, preparing my body for the FET (frozen embryo transfer).
*SEE my post about What you need to know during IVF
Prednisolone for Infertility
Interesting enough one of the drugs they put me on after the retrieval was Prednisolone (aka Prednisone)- a steroid. So of course I started researching this and I found articles calling this steroid a ‘wonder fertility drug’. This steroid decreases the inflammation in your body, increasing your chance of implantation. I think this is really interesting- especially since those with PCOS tend to suffer from inflammation!!! Definitely worth speaking to your doctor about, whether of not you use IVF or not.
After the retrieval I was put on birth control pills to keep my inflammation and hormones regulated (as best as possible). About 5 weeks after being on the pill (skipping the placebo pills- so I had no period) they did an endometrial scratch, aka endometrial biopsy. This consisted of scratching my uterus, causing it to go into healing mode. It is said that an embryo is more likely to implant as the uterus is super active with regenerating and healing itself. The endometrial scratch was not as painful as the Google results I was reading said and only lasted about 1 minute.
I will update you more as I progress. 🙂
Well unfortunately my IVF was unsuccessful, while my 1 embryo did implant, it was not viable and I miscarried at 5 weeks, about 2.5 weeks after my FET. Not sure if it was the egg quality, since my eggs were forced to mature via meds, or if it was a male factor.
Starting IVF round 2! This time the RE has added Lupron. So on a nightly basis I am taking a Leuprolide acetate (lupron) injection, Follistim injection, and a Menopur injection. They are also monitoring my Estradiol levels daily- yes daily bloodwork..ugh. See update in my detailed IVF Post here.
Suffered mild OHSS after retrieval. Embryo quantity and quality were much better on this last stim cycle!
IVM, In-Vitro Maturation
The newest In-Vitro protocol, which is said to benefit PCOS patients is In-Vitro Maturation or IVM which is promising higher success rates for those with PCOS. This is still emerging and only a handful of centers in the US and Europe are using it. The idea is that they retrieve the immature follicles and let them mature In-Vitro. So if my practice used IVM then they could have taken the additional 10 immature follicles and attempted to let them take their time to mature. If my next round of IVF is unsuccessful then I might travel to an IVM center and give it a go, for me the closest center would be on the opposite coast!
Are you doing IVF or planning to?
Here are some tips:
1) Tell them you have PCOS, if your doctor isn’t well versed with PCOS (run- just kidding)- explain to them that your follicles don’t mature as easily as other patient’s might and that you are at an increased risk for OHS (ovarian hyperstimulation).
2) Follistim injection was painless for me, no ice needed, it literally glided in. All other shots required icing the area for about 2-4 minutes – then the injections were pain free for me!
3) Be prepared to be bloated during and even more so after the egg retrieval. I was swollen until 10 days post egg retrieval.
4) Think positive thoughts 🙂 Many women have great IVF results!
Sidenote regarding IVF costs- with no insurance IVF can cost $12,000-$22,000, with medication running an additional $2,000-$5,000, and you have to pay whether the procedure is successful or not!
Have you done IVM?? I want to hear all about it!
Have you done IVF? Was it successful? What was your medication dose? Comment below all your details! Let’s share your success and hopefully help others!