“Egg Donor’s Heartbreak: Donated Eggs, Now Unable to Conceive” was the headline on the Huffington Post.
That’s how I was first introduced to Leah’s story.
Leah is now one of the many egg buddies I’ve made through We Are Egg Donors and even though her story truly is heartbreaking, it’s important to share it.
Donor eggs have been used for 30 years – yes, THIRTY. The first donor egg baby was conceived in July of 1983 – and there have been zero long-term studies on the health effects.
I’ve spoken with many egg donors who have been in good health following their donations, and I have spoken with many who have had short and sometimes long-term health issues. You know what would help identify the full scope of potential health issues? Research. Long term research. Tracking our health outcomes. A mandatory registry.
Right now, unfortunately none of that exists. There’s some research but not enough.
I mentioned last week, when I interviewed sex writer and current egg donor Fela Rue, that every egg donor’s story is different.
This is Leah’s.
PS – Pssst. Be sure to check out the end of this post to find out how you can get a free chapter of Leah’s memoir Single Infertile Female.
When we met last month, you mentioned that the egg donor agency you worked with called their donors “angels” and hired a photographer to do a special photo shoot with you.
LEAH: The agency I worked with definitely made me fee incredibly special in the process. I have always been a bit of a low-key girl, and when I first sent them pictures of myself- there were almost none of just me. I guess I wasn’t big on selfies. All those photos included large groups of friends, and often, they were taken in bars or with me drinking a beer on the beach. They were fun pictures that showed my life, but I guess not the best pictures for “selling” me to families.
The agency called a few days after I initially sent my application in, and they basically said “You’re a beautiful girl, and we want to help to highlight that. How would you feel about going to LA to have your hair and makeup professionally done and your photos taken by a professional photographer?”
They also told me I could have copies of all the photos and that I wouldn’t have to pay a cent for this. The whole thing was honestly really exciting. I had never been a girly-girl, but it was kind of cool to have professionals making me “beautiful”. I spent half a day in LA getting treated like a model, and the pictures were absolutely incredible in the end. It was definitely a fun and exciting perk that I hadn’t anticipated going into it at all.
Tell me how you became “Single Infertile Female.”
LEAH: I donated my eggs when I was 25 years old, going through 2 cycles about 6 months apart. Prior to that, I had always been exceptionally healthy and had never experienced any issues – the doctors involved in my donations told me I was the “perfect” donor and that reproductively – I was meant to make babies. About 6 months after my second donation though, I began to experience health issues.
At first it was just my period disappearing, which was distressing enough as month after month went by without any semblance of a regular cycle. But I couldn’t get my doctors to listen to me at that point, as they each insisted that sometimes women’s cycles just went a little haywire. When my period finally returned about 3 months later, it was excruciating – the worst pain I have ever been in, as I ran a fever and began throwing up with the bleeding as well.
This continued for several cycles before I finally had a doctor suggest exploratory surgery – ultrasounds had already revealed several cysts on both of my ovaries, that were growing quite large and increasing in numbers month after month.
Surgery revealed I had endometriosis, and those cysts were actually endometriomas. At that point, my doctor explained it was a pretty progressive case, but she thought if we started treating it that I would be fine. Less than 6 months later though, I was in a great deal of pain again, and an ultrasound revealed even more cysts. At that point I had another surgery, after which my doctor told me she had never seen a case as aggressive as mine.
She was afraid a hysterectomy was in my near future, and informed me that I was quickly losing any hope I may have had for conceiving. She referred me to a Reproductive Endocrinologist (RE), explaining that if I wanted children, I needed to pursue my options now.
At that point, I was really struggling with what I was supposed to do. I had always wanted to be a mother, but I had also always planned for that cohesive family unit – the mom, dad, dog and picket fence in order first. I turned to blogs, looking for stories and hope provided by other women who had been through this, but I couldn’t find any written by women facing infertility alone.
On the suggestion of a friend, I started my own blog – purely because I had such a difficult time talking about what I was going through. I felt so lost and alone, but writing was a way for me to get it all out, and for my friends and family to remain in the loop on my thought process and the decisions I was struggling to make. I never intended for anyone but them to read, but that was how Single Infertile Female was initially born.
What did the egg donor agency tell you when you let them know that you’ve been diagnosed with a genetically inheritable disease?
LEAH: They said they would pass that information on to the family who had conceived twins via my eggs. The egg donor agency said something to the effect of “We have a long history of working with our past donors when they have experienced infertility themselves. If it comes to the point when you need donor eggs, we hope you know you can come to us for help – we love working with our past donors, and always put them at the top of our priority list when it comes to doing whatever we can to assist in conception for them!”
The weird thing was how optimistic they were about this, without seeming to recognize the implications of what they were saying.
I was immediately struck by a feeling of general discomfort, wondering how common this could possibly be, but they didn’t seem to see that – all they saw was the opportunity to help one of their “angels”. But how many angels never would have needed help at all if they hadn’t donated themselves in the first place?
What are some changes you’d like to see in the fertility industry with regard to the way donors are treated?
LEAH: I really believe that true informed consent starts with tracking and long-term studies. Right now, doctors can’t really tell donors anything about potential risks, because those potential risks are not fully understood. I also think that doctors should have a greater responsibility to explain those risks though.
When I donated, I was told that I was young and healthy and that I would never have to worry about any of the potential risks associated with the drugs involved.When you are young and a doctor is presenting risks to you in that way, you are going to believe them.
It isn’t responsible though, and doctors need to be talking to patients as though each of the potential side effects could happen to them.
Even beyond that, I have found myself really struggling with the financial compensation offered for egg donation. I truly believe that egg donation shouldn’t be banned, but I would like to see caps put on the monetary compensation that can be offered. I’ve come to realize that when you are struggling for money, the promise of a few thousand dollars can entice you to do things you otherwise may not have considered. Other countries seem to recognize the ethical complications with placing a dollar amount on these risks, and I really would like to see the United States start to recognize those ethical complications as well. I think women should absolutely be allowed to donate, but I’m just not sure the excessive amount of money offered in exchange for those eggs is beneficial to anyone in the long run.
What is some advice you’d like to pass on to women who have donated, or are considering egg donation?
To women who have donated, I would say they should simply listen to their bodies. If something feels like it may be off, get checked out – and find doctors who will listen to you if you feel as though your concerns are being brushed under the rug. For women who are considering egg donation, I would just encourage them to consider the worst case scenario first. If the absolute worst happened, would they regret donating?
I know so many women who find themselves leaning towards egg donation because of the compensation involved, but for me – that compensation wound up meaning nothing.
In total, I made $13,500 between both my egg donations. Over the following 3 years, I spent about $75,000 out of pocket in medical costs - 5 surgeries, 2 IVF cycles, and extensive treatments simply to get healthy.
I lost my ability to conceive and struggled with excessive pain for years. The money I received for my egg donations wasn’t even kind of worth it in the end, so I guess I would always just want women to consider that before choosing to donate. I was young and healthy and told that nothing could possibly go wrong, but… it did. And it could for any other woman choosing to donate as well.
Would you ever use donor eggs?
LEAH: It’s funny, because when I first got that label – “infertile” – I had so many people say to me “Well, you can always just get donated eggs yourself.” To me, that seemed to be missing a pretty major point.I knew from day one that I could never use donor eggs.
Every doctor involved in my case seemed to believe that while I had likely always had an underlying case of endometriosis, it was the drugs involved with my egg donations which had pushed everything into high gear.
I needed 5 extensive surgeries over a very short time period. I was extremely sick, and every doctor I saw was exasperated by how aggressive my case was. I went from being 100% healthy, to having one of the worst cases of endometriosis that even some of the top specialists had ever seen – and that all started within 6 months of donating my eggs.
That wasn’t a coincidence, and while my case is unique – it isn’t crazy to think that the hormones involved in egg donations could equally harm any other woman who subjected herself to them. I have met other women, in fact, who have faced some of the other side effects which are so often described as “rare.”
I knew that I could never ask another woman to take on those risks. Not for my own personal gain, and not when I fully understood how devastating the effects could be. It wasn’t worth it to me. I wanted to carry a child, but I wasn’t willing to go that far.
I always knew that if I couldn’t conceive with my own genetic material, adoption would be the next option. Possibly even embryo adoption, with embryos that were already created and looking for a home. But I would never have a woman go through that process purely to provide me her eggs. I had been through too much on my own to ever be able to ask that of anyone else.
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