Sometimes God has a different path in store for us. After being diagnosed with POF, I set out on a journey to "repair" my body and get pregnant naturally. Somewhere along the line, although pristine health and self care is my goal, the necessity to "prove" the doctors wrong became less important and we sought the perfect solution to grow our family. We decided on Embryo Donation / Adoption. Read about our journey. Blessings!

Clinical Trial

10-30-2019

Well, a lot of time has passed. But, I feel like I need to return to my "journaling" about my infertility journey. A unique opportunity has come up in the last week and it's been a whirlwind of emotion. In a POF support group, someone posted information about a clinical trial for ovarian rejuvenation using PRP - Platelet Rich Plasma. I reached out to the doctor in Greece, Konstantine Pantos at the Greek Athens Clinic. I thought why not, and lo and behold, I'm being considered. Wow.

As I delved deeper into what exactly it was I was stunned to see the outcomes. How have I not heard of this? I guess since doing embryo donation, I just haven't paid as much attention? They are friggin' reversing POF. Reversing perimenopause. How are people not talking about this? At this juncture, it is only in clinical trial and a few reproduction clinics in the States offer it as an experimental procedure.

What they do, is take your blood. They spin it in a centrifuge, remove the red blood cells, and you are left with platelet rich plasma. That also means, you are left with a higher concentration of growth factors. The really cool thing about this study for all you folks who've been along the ride with me and know me...is it doesn't take any medication. It is simply, your own blood. No risk of you rejecting it. Very little risk of side effects. The only thing really noted so far is light cramping. They take your blood, prepare the PRP, inject 5 ml into your ovary, let you rest for an hour or so, then off you go. They monitor you for three months to keep an eye on your hormones and I'm assuming follicle growth. From the NCBI study -

"PRP institutes an autologous and highly concentrated solution of plasma, which is prepared from the patient’s own blood and contains a concentrated source of growth factors, namely insulin-like growth factor-1 and 2 (IGF-1, IGF-2), fibroblast growth factor (FGF), epidermal growth factor (EGF), transforming growth factor beta (TGF-b), hormones, and cytokines []. Considering the active factors involved, along with their potent therapeutic nature, it is not unreasonable to hypothesize that PRP treatment may assist in tissue regeneration [], the enhancement of anabolic signalling pathways [], cell differentiation and proliferation [], angiogenesis initiation, and control []. Considering the angiogenic composition of the ovary and the pivotal influence of platelet-derived growth factors on vascular activation and stabilization, treatment with autologous PRP may be viewed as the enabler of ovarian tissue regeneration []. PRP contains a member of the TGF-b superfamily, growth differentiation factor 9 (GDF-9) []. The gdf-9 gene expression is regarded as a biomarker of oocyte maturation potential [,], and its mutations have been linked to premature ovarian failure []."

The first three woman they performed it on, all regained ovarian function. All three actually went on to conceive and have live births naturally with no reproductive intervention after the PRP. You can see their charts here. https://journals.sagepub.com/doi/full/10.1177/0963689719859539 Ages 27, 40 and 46.

The next study they did had 8 woman - all 8 resumed menstruation within within one to three months.

If you google PRP ovarian rejuvenation a lot of studies are popping up. Although it is still in the clinical stage, the results are very promising. Some sources site normal ovarian function in 70% of the cases.

To be a part of the trial, I meet all the criteria except being on HRT since I succumbed to a small dose last spring. I'm hoping if I go off it, the trial continues on for at least three months for me to be a part of it. You must be HRT for three months. I stopped mine last Monday when I got word I was progressing to the next stage with a consult.

If I am accepted, the trial itself is fully paid for. I just must pay the 200 euros for the initial consult there (the skype consult is free) and for my travel. I must also agree to three months of monitoring. The good news is, even if I am given the placebo during the trial, they have agreed to give me the true procedure after the three month umbrella is lifted.

When I started investigating who does it here in the Sates, I did find several places. All treatments range from $4000 up over $10,000. The closest one to be is $4600. And, to be honest, it is actually cheaper for me to take a week long vacation to Greece with my husband, soooo...if I'm accepted, that may be the route we go. There is also something reassuring doing it with the man who was the first to perform it. I played around looking at things and can actually get a six day trip with air and hotel for around $850 on Groupon. We can book better trips including some food, tours etc for closer to $1150-$1500 which may be better to know all transfers, food, tours, etc are taken care of so I don't have to stress about it all.

So, last night, I was suppose to have my skype consult at 1:30 am. Remember, Greece is 9 hrs ahead. I had a choice 5 am or 1:30 am. My son often wakes in the morning to nurse, so thinking I was being smart, I scheduled it at 1:30. We even told him, if he woke up, Daddy would be going in because mommy would be up late and needed to get some sleep. 12:55 "Mommy, I need milk, Mommy mommy mommy." Ugh. Are you kidding??

So, I waited it out and had daddy go in and it was like World War III erupted. He ONLY wanted mommy and was having a full on freak out, tantrum. So I went in to calm him. I tried to leave at 1:20 and it resumed. He was clinging to me screaming. I finally got down the stairs, listening to it all happening upstairs at 1:27, sat down and waited.. After ten minutes, the clinic emailed me there was a medical emergency and rescheduled or 16,00 Greece time. Sure... Ok 9 am. But no, that is 7 am :(

I missed the bloody call. Ugh. So, right now, it's rescheduled for Nov 1 between 10,00 and 13,00 which is 1 am - 4 am here. Fingers crossed the forgive my stupidity and exhausted mind and let me still take the slot. I was so mad at myself that I burst out crying. Here is this great opportunity and my exhaustion. Wahhhh.

I'm just so excited about the possibility of this. If I got to do it and if it worked, I could say goodbye to the next decade of meds. I wouldn't have to stress out so much about my bones and heart. This'd completely turn this disease around for so many women.

It raises so many questions in my head though. Why is reproductive medicine the only one researching it (profits, ahem) Will insurance ever cover this? Or will they stick their heads in the sand and call it an infertility procedure versus what it actually us, ensuring a woman's organ that runs her whole hormonal system and ensures her bones, heart and other organs are healthy and strong. So much to watch unfold.

For now, please say a prayer for me. I'd love to be able to do this. I'd love to be a part of this.

Attached is one of the studies. There are so many if you dig in to it. How incredible is all of this?? I'm giddy with what this could mean for all my POF sisters out there!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6352170/