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- Because "Hello" Is used tooo much in Introduction threads!
Salutations!!
I am "Zaora" Last year, at the age of 29, I was diagnosed with Swyer syndrome (XY gonadal dysgenesis).
I'm not sure why it took so long to get diagnosed.. I suppose the fact that as a young woman, I didn't care that I wasn't getting a period, most women I knew called it a blessing, then later, when I was married, and I did care, I moved around too much that I could not follow anything trough from start to finish.. Now, Divorced and living in the south with my parents, I finally did get it finished and figured out..
Now I am 30 and its all figured out, Right? Wrong.. I had Oophorectomy in December, and now 10 months later.. things are just starting to sink in, and I have lots of questions, and a need for support from people like me.. I just dont know where to go, or where I fit in.. When ever I search for support groups I get AIS groups.. but i don't have AIS... sso i dunno...
Here is to hopeing that this is the right place... A place where I can meet people like me, and ask all the questions I that no one i know has answers too...
Welcome to Bodies Like Ours. I read your story with interest. It is good that you have a diagnosis. There are many bright people associated with BLO, so there is a pretty good chance that your questions can be answered. You mentioned that it is taking time for things to sink in. Even after a lifetime of sinking in (I knew of my infant genital surgery when I was a child.), things are still sinking in for me.
Peter
The Female Eunuch
09-12-09, 01:25 AM
Welcome to Bodies Like Ours, Zaora.
I was wondering how you could go right into adulthood with Swyer Syndrome before you knew you had it. Wouldn't Swyer Syndrome lead to not going through puberty, on account of not having ovaries?
cheers,
Caroline
Hi Caroline,
Your questions strike me as very odd. You seems to ask how a person could go for so long without knowing the name of their condition? You can learn much about Swyer's Syndrome by simply typing "Swyer's Syndrome" in your Internet search engine. Her story is not out of the ordinary for people with Swyer's Syndrome.
Peter
Welcome Zaora.
There is a great bunch of people here with a great diversity of knowledge and life's experience so I am sure you will find the support you are looking for.
It is good you have a diagnosis at the tender age of 30. For many it takes YEARS to sort out the facts from all the BS. At least you KNOW.
Welcome again!
Hi Caroline,
Your questions strike me as very odd. You seems to ask how a person could go for so long without knowing the name of their condition? You can learn much about Swyer's Syndrome by simply typing "Swyer's Syndrome" in your Internet search engine. Her story is not out of the ordinary for people with Swyer's Syndrome.
Peter
I think that Caroline meant was how I could get to adulthood without realizing something was really "off" and the answer is this.
I didn't have "Streak gonads".. at least, my Endo never called them that.. He just told me I had a smaller than average uterus and ovaries... What ever they were they worked well enough to allow me to go through enough of puberty that none of the doctors I saw ever suspected that I was anything but female.
Add to the above that when I was about 13 I was nearly raped by some neighborhood boys. I didn't know who it was who attacked me, so fear drove me to stay at home and be 100% less active, I started to put on weight, in all likelihood, this hid the lack of breast development that is standard with Swyers (And this is the root of another odd questions I have)
Also, My Sister had been diagnosed with polycystic ovarian syndrome,so there was this unspoken agreement that I probably had that too...
And basically, I didn't care.. at 15-20 I didn't want to have kids, and I didn't feel like I was ever going to be "pretty" enough to be in a relationship where I could have kids, so I didn't ever pursue it.
Laura Robison
09-12-09, 01:19 PM
Welcome Zaora, :wave1:
I'm glad you finally have a diagnosis. There are some of us here who still don't have a definite diagnosis.
Now I am 30 and its all figured out, Right? Wrong.. I had Oophorectomy in December, and now 10 months later.. things are just starting to sink in, and I have lots of questions, and a need for support from people like me.. I just dont know where to go, or where I fit in.. When ever I search for support groups I get AIS groups.. but i don't have AIS... sso i dunno...
Here is to hopeing that this is the right place... A place where I can meet people like me, and ask all the questions I that no one i know has answers too...
I for one, am still trying to figure it all out for myself. I hope you can meet others with Swyer syndrome here. I think you will find that we have a lot in common and can support each other, even if we don't have the same condition.
I'm glad you're here. :)
The Female Eunuch
09-12-09, 08:36 PM
Zaora wrote: I think that Caroline meant was how I could get to adulthood without realizing something was really "off" and the answer is this.
yes, that is what I meant. And thanks for the answer - it seems that what I've read about Swyer syndrome is not the full story.
And I'm not at all surprised by the idea of you going that length of time without knowing the name of your condition - some of my abnormalities have been obvious since I was born, and I STILL don't know any name for them (the closest condition I can find on the internet is Cloacal Exstrophy, but even that doesn't fit closely enough).
cheers,
Caroline
Well, For along time I assumed I had the same condition as my older sister polycystic ovarian syndrome, and that it was just a hormone imbalance, that once I got to the right doctor, it would be no problem to "get my clock ticking" to the right beat, and I could maybe have children some day..
I think that's the hardest part about all this for me.. No kids.. at least not without thousands of dollars worth of medical intervention..
The whole reason I started to get it looked into again was because I had met a nice guy.. and there was the possibility of some kind of future with him.. and the possibility of a family.. :-x
karmanuance
09-12-09, 11:41 PM
welcome welcome
Kailana
09-12-09, 11:58 PM
too bodieslikeours.
I am curious about your gonads, you mentioned they were small and underdeveloped rather then streaks. Is it possible your diagnosis is not accurate? Swyer's is possible but when they aren't aren't Streaked and are underdeveloped instead, that is called Gonadal Agenesis, rather then Gonadal Dysgenisis. I am a little more familiar with women with Turners having Gonadal Agenesis then I am a woman with Swyer's but am not surprised in the least to hear that is what you had.
I should say i am just curious and then again it is always possible that the doctor chose to identify them as underdeveloped small ovaries instead of identifying them as streaks in order to keep you from being worried over malignancy issues. Just a thought and have no real idea if what he said was truethfull or accurate.
again welcome to BLO, and sorry If I am prying, its habit as I am always interested in any other features that pop up that doesn't usually express itself in the known conditions descriptions.
too bodieslikeours.
I am curious about your gonads, you mentioned they were small and underdeveloped rather then streaks. Is it possible your diagnosis is not accurate? Swyer's is possible but when they aren't aren't Streaked and are underdeveloped instead, that is called Gonadal Agenesis, rather then Gonadal Dysgenisis. I am a little more familiar with women with Turners having Gonadal Agenesis then I am a woman with Swyer's but am not surprised in the least to hear that is what you had.
Misdiagnosis is always a possibility. I was unfortunate in that I kinda gleaned what my diagnosis was going to be before I was officially told. I was sent MRI orders, and in them i read " phenotypic female with, Chromosome 46 XY" there was also something about the gonads, but I forget what now. Had me freaking out for a good while before I saw the doctor.
In all the research I did, AIS, Sywer's and Turner's were all conditons I had desided I didn't have based on what I knew.
I had not considered Swyer's because of the "streak Gonads" and I Didn't have streaks, according to my doctor.
AIS was also out of the question, because I had a uterus, and apparently ovaries as well, they had been seen in Ultrasounds for a while, and are probably another reason nothing was suspected.. everything was there.. just smaller than normal, according to the Endo.
Turner's I didn't suspect because, I was apparently not missing a chromosome, and a lot of what I understand to be "characteristic physical abnormalities," (short stature, broad chest, low hairline, low-set ears, and webbed necks.) I don't have.
I should say i am just curious and then again it is always possible that the doctor chose to identify them as underdeveloped small ovaries instead of identifying them as streaks in order to keep you from being worried over malignancy issues. Just a thought and have no real idea if what he said was truethfull or accurate.
I'm beginning to wonder myself if he was dumming it down.. or something.. I know he was not trying to down play the "malignancy issues" because he pushed for surgery right away to remove my ovaries. Even when I tried to sidestep that, my logic being, I've had them in for 29 years, what harm will it do to leave them in..
and sorry If I am prying, its habit as I am always interested in any other features that pop up that doesn't usually express itself in the known conditions descriptions.
Its ok, Getting used to talking about this kinda thing, and actually understanding it, should turn out to be really helpful. As it is, i have chosen to lied to my coworkers and told them that my condition caused me to go through early menopause, because I don't know how best to explain it to them, not that I really wanted to, and I currently live in the south and I am afraid of having problems from being Genetically XY.. and seen as a "freak" even tho Im not.
Ps: Have you got links to information about Gonadal Agenesis? I'm trying to search for information about it, but not much that is useful is coming up
Kailana
09-14-09, 01:11 AM
i find off comments in other studies that mention the rareity of findng Gonadal agenesis in a few patients. Sort of like the studies will be on another condition and they will talk about the common features found like with Turners women.
And then they will state that in this person rather streak gonads there were Small underdeveloped Gonads instead of the more common streak tissue expected. Perfectly healthy ovarian tissue and only found to be so due to biopsy after removal of course and there was nothing wrong with them at all.
Its kind of like seeing the all Turners women are infertile and its not true, some are kind of thing. I can look around and see what i can find. honestly i dont do the amount of studying and searching I used to do, but I will spend a few hours seeing what i can find for you.
Well, I have a doctor's appointment with a new doctor on Thursday.. I am thinking of asking him to do a blood test to show my Hormone levels, and I will be sure to tell him I have been on Apri for nearly a year,and I don't think its really affecting my hormone Levels.
I honestly do not believe that 0.15mg of Desogstrel and 0.03mg Ethinyl Estradiol, Three weeks a month is really doing any good
This is mostly directed at Aseras, If I was going to request something.. Stronger.. that has few or no "Masculinization" side affects, what would be good ones to ask about?
Well ethinyl estradiol is strong, stonger is not better. Ideally you want to have your levels match those of a normal woman. Natural estradiol and progesterone levels. Remember they are not a steady dose either, they fluctuate. Do you have a uterus? Do you have withdrawl bleeding? If so, you need to take a progestin/progesterone if you are going to be on estradiol. You don't have to do it every month. Even taking a proestin or progesterone for 5 days every 3-6 months is sufficent. You just need to get the uterine lining to shed or you are at a great risk for cancers and fibroid tumors. Some progestins have masculinizing side effects, some not as much. Generally none of them do really at normal doses a woman would take, only when you take larger doses for long periods of time.
Progesterone opposes estradiol. Progestins do as well. So they reduce estrogen's effects.
If you do bloodwork, be sure to note that you need to be off birth control or any other horomes for at least a month to get accurate results. Ethinyl estradiol and all progestins and almost any other synthetics do not show up on blood tests and will skew the results to make them look much lower. Any hormones you take reduce your boides natural levels by a similar amount. So you want to know how much your body is making or what is going on to get a good idea.
Do you have a uterus? Do you have withdraw bleeding? If so, you need to take a progestin/progesterone if you are going to be on estradiol.
Yes, I have a uterus, and I usually do have withdrawl bleeding when I am on the "off week" of my Apri.
The only thing I am on is the Apri so, I assume that I'm not on Progestin/progesterone, it only lists Desogstrel and the Ethinyl Estradiol
You don't have to do it every month. Even taking a proestin or progesterone for 5 days every 3-6 months is sufficient.
What kind of dosage are you talking about that it is only need 5 days every 6 months?
You just need to get the uterine lining to shed or you are at a great risk for cancers and fibroid tumors.
This is what makes me wonder tho, I went... about 7 years, maybe more without a period of any kind.. but then I also may not have been building up the lineing to begin with..
If you do blood-work, be sure to note that you need to be off birth control or any other hormones for at least a month to get accurate results.
I would have thought taking more blood work when I was on the pills would, help to see what kind of changes the pills are making.. Would it help if I got my new doctor my medical records from my passed doctors? Then if I do the blood work now (I am on my "off week" starting on Sunday") he has something to compare with?
(I really should consider getting copies of all my medical records for myself..)
Desogstrel is a progestin.
A Period works like this. Estradiol ( the primary and most potent estrogen ) cause the endometiral lining of the uterus to proliferate and grow. Estradiol is release by a deveoping follicle ( egg ). When the egg is fully developed it bursts and then the follicle goes into a luteal stage and covnerts into a corpus lutem and begins to secrete progesterone. Progesterone cause the now developed lining to mature and prepare for egg implantation. It swells up and engorges with blood. If an egg is fertilized then a placenta gorws quickly and take over production of hormones. If the egg does not implant then the corpus luteum receeds and fails and then the edometrial lining sloughs and sheds as a response to progesterone withdrawl. Without progesterone it can no longer maintain itself.
Estrogen-Progesterone challenges are pretty common tests for uterine function. You take a estrogen for a couple weeks and then a progestin or progesterone. Either a 1, 5 or 10mg pill for 5 days or a 50-100mg shot of progesterone. After 5-7 days you should have a period if the uterus is working properly. Without a progestin the lining will never shed and you will not have a period. The lining will grow un opposed and that is bad.
It would depend on how long you were without a period and for what reason. Whether is was from a lack of estrogen or opposition from progesterone. Women who go through menopause no longer produce estrogen so they no longer have periods.
You would need to be off of hormones for the blodwork to answer the above questions. Why you weren't having regular periods. Your doctor would need to look at LH, FSH and estradiol levels at a minimum. Keep in mind the blood tests are point in time and the level are cyclical. So you would need several tests done to really show an accurate idea of what your body is or isn't doing. Taking birth control or another estrogen will suppress your numbers and hide problems. Many doctors will simply prescibe birth control as a easy way out sometimes to put people at ease when there is an issue.
spacegirl
09-17-09, 09:43 PM
greetings Zaora.
Just thought I should say hello before the moment is too far passed by.
Hi Zaora,
Please excuse the late reply, but good to see you arrived here.
Ashiri
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