Jane – They got between 50-60 eggs from me. The couple was Asian and wanted an Asian egg donor. They retained rights to all my eggs and any subsequent embryos created using my eggs and the husband’s sperm. What little I know was that there was a pregnancy and perhaps twins. I didn’t follow-up any further than that. The woman had premature ovarian failure therefore she needed to use an egg donor.
Lahl ﾖ Tell me what medications were used, how you were instructed in administration of the drugs and any short or long term risks, or problems you should look out for.
Jane – I believe they used the regimen described in your talk ﾖ I gave myself Lupron injections for synchronization with the woman who would get my eggs, followed by stimulation to mature the eggs, then an injection to release the eggs for the retrieval process. The instruction was done by the egg donation agency. None of the women were health care professionals. I searched the internet and medical literature and didn’t find any evidence of long-term side effects. I was warned about possible effects such as ovarian hyperstimulation syndrome, but they were very confident that nothing would go wrong based on anecdotal and personal experience. I was told they never had any complications. Some of the women were donors themselves in their 30s and had gone through 5-6 cycles already. I don’t recall them telling me anything about future infertility or cancers, only that they never heard of anything going wrong.
A few days before the eggs were to be retrieved I had to fly to the fertility clinic to have lab work and an ultrasound to see how many follicles were developing. Two days prior I took medication to mature the eggs. I think Clomiphene was one of the drugs. They stimulated me too much based on the lab work, even though I didn’t have severe “hyperstimulation syndrome” symptoms. They were measuring the progesterone or estrogen levels and it was way over the target–they even commented on this. I requested they back off on the stimulation but they were adamant that in order to have a good result, I needed to follow the protocol. I don’t think they took into account ethnicity or weight in their protocol, which is just ludicrous. I injected myself with the last medication that night to help release the eggs. For the retrieval, they did inform me of possible negative outcomes such as bleeding and infection.
Everything went well until the retrieval. I woke up in the recovery room and realized I was weak and dizzy and could not get up easily. I went to the bathroom and I felt extremely nauseous and dizzy. They gave me more IV fluids because they thought I had side effects from anesthesia and low blood pressure. I then started having trouble breathing. They did an ultrasound and said there was nothing wrong with me. They kept trying to get me to go home, which would mean a plane flight, but I could not even stand up. The pain in my belly got worse and I was convinced I was bleeding internally. It felt like there was something irritating my diaphragm and preventing me from breathing. It was a burning sort of feeling in my chest and abdomen. My blood pressure was low and they gave me medication to increase it. Later they admitted me to the hospital and tried to get me to eat. I could not even sit up without extreme distress and painful, difficult breathing. I had only been evaluated by the fertility doctor and the ultrasound tech. I was pretty sure I was going to die. They took my blood pressure and I remember them calling out “40/20”, but it was documented as much higher, around 60/30 in my medical records. They decided to take me in for emergency surgery. As it turned out, the fertility doctor had punctured an artery somewhere near my ovary. They did an exploratory laparotomy and flipped through my intestines several times before they found the small but gushing bleeder, and cauterized it. I woke up on a respirator in the ICU and stayed there for a day or so. I knew that bleeding was a risk, but to ignore my obvious signs of bleeding for 6 hours and then try several times to put me on a plane home — that could have killed me! I got 3 units of blood transfused. Afterwards, the doctor kept reiterating that it was my fault and that this has never happened to her, in the hundreds and hundreds of times she’s done this. The overall statistics for bleeding was 1:3000, she said. Then she checked me for bleeding disorders that I knew I did not have. I had a lot of problems with equilibrium after this and was unable to walk long distances after 3 days. Luckily I had a friend with me at the time and eventually I got home.
Lahl ﾖ I am so sorry to hear that your life was put in jeopardy by those in the medical community. I am glad that you are still alive to tell your story. Sadly, others have similar stories and some have lost their life.
Jane ﾖ Yes, I am thankful to be alive. I was paid $6.5 K for my eggs but my hospital bill was $35K! The insurance company for the egg donation agency did not pay the bill, my own insurance did. After I got home, my incision got infected and I was left with a giant keloid scar. With better diagnostics my bleeding might have been stopped with a laparoscopic procedure rather than an open laparotomy.
Lahl ﾖ How has your health changed?
Jane – My periods and hormones became irregular. I think I stopped ovulating and I’m not sure if I am fertile anymore. It is hard to tell what that is from because I was on the pill, but even after 1 year of stopping the pill it never went back to normal and I’ve never had a regular cycle ever again. I continued the pill because my periods were getting too irregular and I was getting a lot of acne and hair growth without the pill (kind of like polycystic ovarian syndrome PCOS without the obesity factor). I have pain sometimes which feels like something pulling inside. I think that is from adhesions from the surgery. My follow-up ultrasounds show multiple large follicles in both ovaries, about 25+, consistent with PCOS. My menstrual cycles were completely normal before this.
I also had acute stress disorder after the incident for about 2 months. I was fearful that I would bleed to death and I could not go back to work for those 2 months after the incident. Luckily I was a student so I didn’t worry about losing my job, but it left me pretty in
capacitated for awhile. On one hand I was physically weak, and on the other hand I had psychological trauma.
Lahl ﾖ And how is your health now?
Jane – It’s not bad in terms of day-to-day. I still have the scar on my abdomen and get weird rashes near the scar. I get pain at the end of urination and sometimes even incontinence caused by the surgery. I have extremely irregular periods with intervals ranging between 13 days to 60+ days as an effect of the donation. I had been using ovulation tests to see if I am still fertile, but so far no luck. My ovaries are abnormal in appearance with muiltiple cysts, whereas before they were pretty unremarkable.
Lahl ﾖ I imagine if you had to do this all over again you would not have donated your eggs?
Jane – I feel this experience was completely not worth it, even if the couple did have a child. The whole process was very misleading even if the agency may not have been meaning to mislead. I feel like the medical literature had absolutely no useful information that would have prevented me from foreseeing any ill effects, the worst being possible infertility, now that I would like to have children. A large study should be done on egg donors to see what the short and long term side effects are. The fertility doctor was top notch but she really mishandled my case and acted extremely defensively when it went awry. No follow up was ever offered to me.
Lahl ﾖ You now join the ranks of women who are lending voice to our cause to protect other women. Calla Papademas has been very outspoken about the lack of care for her when her egg donation went awry.
Jane – The story of Calla Papadema is horrific… kudos to her for speaking out… I have a friend who ended up with permanent fibromyalgia symptoms from use of lupron for endometriosis. I also know of people who had bad reactions to Depo-Provera which acts by similar principles. Though these reactions may be considered “rare” to the medical community, it is astounding how under-reported they are and therefore the true incidence of these events will remain unknown, with the consequence that doctors will not know how to counsel patients who present with such symptoms.
Lahl – Does your case show up in medical literature that you know of? Or are you one of the many nameless, faceless, anonymous egg donors?
Jane – I recall my Dr. said she would write up a case report but I searched pubmed for all her publications and there was no case report.
Lahl – What would you say to a young woman considering egg donation?
Jane – Until large studies have been done on past egg donors, women can’t make an informed decision on the dangers. No amount of money is worth the potential pain and suffering that you may experience. The medical professionals only publish papers on methods that increase success rates of in vitro fertilization, but there is NOTHING being done to look at the health of the women whose eggs have been taken. Never once has my agency followed up on my health so I imagine they haven’t followed up with their other egg donors. And once you sign the papers agreeing to donate, you feel psychologically bound to “succeed” as an egg donor. It may seem safe for many who have already done this but they may get cancer or infertility 5-10 years later and nobody will notice.
Lahl– What would you say to the scientific community who need eggs for their research?
Jane – Any research project must be scrutinized to determine if the answers obtained will provide a benefit to society which justifies the risk to egg donors. Additionally, the tremendous cost, not just financially, associated with egg harvesting and the ethical issues that may arise must be factored into the project. Informed consent can’t truly take place in a system where there is no incentive for physicians and researchers to act on behalf of eggs donors as their advocates. I’ve worked in research long enough to understand the pressure to get the work done at any cost – “publish or perish”. This pressure can cause even the most level-headed scientist to falter in the way they conduct their business. It is easy to assuage the conscience, especially if you are not aware of any negative side effects of the egg donation process. But I also know that most people have a conscience, and once presented with these stories of women who have been negatively affected by this process, the research community should feel like they have to be held accountable for the long-term tracking of their egg donors. Is there accountability now? I highly doubt it, given the lack of mention of in the literature. Anytime you are dealing with human lives, you have to put yourself in the place of these young women.
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