New Here... I have Swyer Syndrome - getting ready to do my first donor-egg cycle

[Steph-SS]

Just found this forum, thought I'd see if I could find any others out there who are trying or have tried to have a baby using donor eggs. I was diagnosed with Swyer Syndrome at 15, had streaked gonads removed at 17, and been on HRT ever since. I am now 42, and getting ready to cycle with donor eggs next month.

Thanks,

Stephanie

[Steph-SS]

I think someone sent me a PM and I accidentally deleted it:doh: . Please re-send.

Greetings to all - Hope everyone is having a great day, and looking forward to the weekend.

Stephanie

[Kailana]

surprised no-one has said hello. that is kind of odd for this forum.

I hate to ask but is Donor-egg actually possible? Sorry I am not all that knowledgeable about Swyer's other then reading the standard's ie medical studies, which I am not that familiar with; am not familiar with Donor Eggs being used on a Swyer's woman, has this been done successfully before?
Sorry if I sound like a idiot but I had not thought that a Uterus was present in Swyer's patients? Or if it is in some? sorry that is what I meant about not being that knowledgeable. I wouldn't be surprised to read of a Swyer's affected person with a Uterus who has successfully conceived, fact is I do think that would be special, just am not aware of such an occurence being possible.

Hope I am not prying, just am curious and looking for a lil more information.

Variation is the Key to Life; without it our world wouldn't be worthy of living in.

[Steph-SS]

Thanks for replying. I was getting a bit of a complex thinking I may have posted something inappropriate. As far as "prying" goes... pry away. I was diagnosed at 16 when they removed what I thought were my ovaires, but where actually streaked gonads. It wasn't until 25 years later that I found out the name for my condition. So for the past 2 years I have been learning as much as I can. Here's a link* to some info on Swyer Syndrome.

fixedreference.org/en/20040424/wikipedia/Swyer_syndrome

From the link:

Swyer syndrome, or XY gonadal dysgenesis, is a type of gonadal dysgenesis marked by the inability of a genetic male to develop testes. Individuals with this syndrome develop the normal primary sexual characteristics of females, including a uterus and vagina, but the ovaries remain as undeveloped "streak gonads". The condition is not apparent at birth, as individuals with the condition appear as normal females; symptoms most commonly appear during puberty when the absence of breast enlargement and menstruation raise suspicions of a potential developmental disorder.


So basically I am genetically male, but physically female... with the exception of the ovaries. So with a donor egg, sperm, and a lot of estrogen and progesterone... pregnancy is possible. There have been several studies of women with various versions of gonadal dysgenesis that have become pregnant using donor eggs - link*

humrep.oxfordjournals.org/cgi/content/abstract/5/3/291

Hope this info has been helpful, and thanks so much for reaching out. By the way... someone did PM me who has Sywer's and is also getting ready to do a donor egg cycle. I'll keep you posted on our progress.

All the best,

Stephanie:cfs_flowe

*apparently you can't post a URL on this site until you've posted 5 time... this is only 3rd post, so you'll have to cut and paste in you browser to get to the links

[Peter]

Hi Stephanie,

Welcome to Bodies Like Ours. Good luck with the egg donor cycle. Your answers about Swyer Syndrome to Kailana are very interesting. The reason that we do not allow people to post linking URL's before posting 5 messages, is that we want to prevent spammers from posting junk URL's. I apologize for the inconvenience, but not everyone comes here with the good intentions that you have.

Peter

[Steph-SS]

No need to apologize, I completely understand. Hope it was alright to post the the web addresses as I did. I only have one more post... then I'll be legal.

I was glad to find this forum, and I look forward to learning from others and being able to share my experiences with anyone interested.

Thanks again,

Stephanie

[Aseras]

Hi Steph, welcome.

I hope the IVF and the donor eggs work for you. One of the things that makes me sad is that it would be very difficult for me to have kids. My sister has had 3 kids and that does make me feel a little sad. I am glad medicine has advanced a little to make it possible for the outliers like us to try and conceive. I really feel bad for those of us who have no hope at all.

[Steph-SS]

It may sound strange, but I am glad that I was diagnosed with SS at 16. Although I truly didn't know much about all of the details of Swyers until I was 41, knowing that I couldn't have a biological child at such an early age gave me a lot time to wrap my brain around it. I had my streaked gonads removed in 1982, and the first donor egg baby wasn't even born until 1984. Not until the late 80's did the process start to become more than just "weird science". Today, it is so common place. I feel fortunate that in my lifetime these advances in reproductive technology where achieved. Had I been born 20 years earlier, I would have had no option at all. Imagine where we might be 20 years from now. The hope may not be for us... but for those destined to follow in our footsteps.

I will say this also, because donorIVF wasn't an option in 1982, I had already accepted the fact that my children would be adopted. And if our attempts to get pregnant by DonorIVF don't work, that's exactly what we'll do. I know that I will be a parent someday, one way or another. I am also very fortunate to have a partner that would happily raise any child with me, whether biologically connected or not.

Thanks again for your well wishes... hope you are having a nice holiday weekend.

Stephanie

[Kailana]

but, did you try finding a relative with viable eggs to donate? while not a perfect match they would share some traits with yourself. Just curious and interested kind of thing when you mention about not being able to have biological children, would a 1/4, or 1/8 bio child be possible? cousin or sister donated egg? Im just thinking right now, so this is sort of a question about having some ties to your child through biology/genetic link from a family member. wondering if you had extended family that could or would be able to help out.

this might be a little prying, my apologies. Actually think it is amazing either way and wish you the best.

[Steph-SS]

No apologies needed, If I wasn't open to prying... I'd never have posted. As far as a relative... I don't have any sisters, and only 2 female cousins. They probably both would offer, but I could never ask. It's a lot to ask of someone... even if they are family. Our unknown donor will never know whether or not her eggs ended in pregnancies. With family or known donors, they suffer through the cycles with you. If you fail, they feel responsible. Also, I know myself well enough to know that I would have trouble with family gatherings. Always wondering if my child has a "special" bond with their biological mother, my cousin. It just makes it less difficult not to put ourselves in that situation. The biological connection has never been that important, as I mentioned, we are completely open to adoption if DE doesn't work.

Just got my meds in the mail last week... and will begin estrogen patches on the 18th to build up the lining of the uterus, then progesterone injections just before transfer. Tentative transfer will be around the 4th of July. I'll keep you all posted.

Thanks Kailana for your words of encouragement.

Stephanie

[Kailana]

glad you took my words as encouraging, wasn't sure i might of asked something to personal.

thank you steph for sharing, and making me aware of one more aspect i had not thought of until reading your post.