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This wasn't the diary I was going to write today.  But it is what has been taking up a lot of mental space as of late.  New information that has sent me into quiet times where I just long for a cigarette while staring off into the woods, thinking.  Or times of rage, kicking recycle boxes around our deck, only to end in a puddle of tears.

I had intended to write about all of this, but months or years down the line.  Not today . . . but it won't let me go.

I really don't know where to begin . . .  thinking . . . thinking . . . . thinking  

Whose beginning?  Mine or my mother's?  This isn't as easy as it looks.

I need to get into the right mind set  . . .

Take a straight and stronger course to the corner of your life
ah! ... yes!  It's music that it going to help me through the telling, beyond the squiggle.
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NECESSARY BACKGROUND  - YEAH, IT'S BORING BUT WHATCHA GONNA DO?

I was born in 1962.  I am the seventh of nine (move over Annika Hansen).  I am the first one to live beyond 3 days old. . .  17,984 days beyond (and counting).

My mother was born in 1929.  She still here, still kicking.  She was raised in central Kansas on a farm.  She went to school in a one room school house with 3 other children, one was her older brother.

Her dad was a life long farmer, her mother was an English teacher turned farm wife.  Education was very big in their home.  My mother went on to college earning a degree in Psychology.  She also married a man who would eventually become a Methodist minister.

They would move to Denver, CO where he would get his theology degree at Iliff School of Theology and she would get a Masters degree.  Then they traveled throughout the Colorado high country ministering at Methodist churches in a few towns.

During this time they also tried to have children, five time.  Three times my Mom miscarried and twice these children, my half siblings, were born prematurely and died.  They divorced and my Mom went to work at Time Magazine, which at that time had offices in Denver.

There she met my Dad (still here and kicking too) who worked in the nascent computer operations center.  They married and in 1960 my older brother was born, prematurely.  He died three days later of Hyaline membrane disease, now called Neonatal respiratory distress syndrome.

Neonatal RDS occurs in infants whose lungs have not yet fully developed.

The disease is mainly caused by a lack of a slippery, protective substance called surfactant, which helps the lungs inflate with air and keeps the air sacs from collapsing. This substance normally appears in fully developed lungs.

Neonatal RDS can also be the result of genetic problems with lung development.

The earlier a baby is born, the less developed the lungs are and the higher the chance of neonatal RDS. Most cases are seen in babies born before 28 weeks. It is very uncommon in infants born full-term (at 40 weeks).

In addition to prematurity, the following increase the risk of neonatal RDS:

    * A brother or sister who had RDS
    * Diabetes in the mother
    * Cesarean delivery
    * Delivery complications that reduce blood flow to the baby
    * Multiple pregnancy (twins or more)
    * Rapid labor

Okay, so if you are with me this far that's 6 kids.  All that background information is important to help understand what happened next (and admit it, it was less dry and boring that all the background begatting in the Bible).

I am struggling here for words to describe my mother.  She is a feminist, passionately  so.  She rose to the top of her profession and is listed in the 1963 edition of Who's Who of American Women because of it.

She was also subject to societal expectations that still are present today.  Women have children, and she wanted children.  But she was also not a home body, a career was essential.  She wanted to have it all, and to show a woman could have it all.  If only her body would cooperate.

When she found out she was pregnant again (with me) her doctor suggested a then experimental procedure to "anchor" her cervix closed.  She was willing to try it.  So while pregnant with me, hoping that this would bring me to term, she underwent surgery.  There was a risk that she'd loose the baby (me) during the surgery, but with six previous outcomes it was almost assured that if she didn't try, she'd loose the baby later on.  So try they did.

The doctors  affixed a small anchor to her cervix.  It had holes in it to allow fluids to pass through, but it would not allow her cervix to open.    This meant however that if she didn't loose the baby through this operation, it (me) would be born through cesarean section.

This was back in the days before ultra sound, when the only way to "look inside" was through x-ray or fluoroscope (which is x-ray too).  Back then the radiation dosage a patient would receive in x-ray  was much higher than it is today.  Also the public didn't know much about the effects of radiation exposure.

News of the children who had been exposed to radiation in utero to mothers who had survived Hiroshima and Nagasaki was not available to the general public.  There was even suppression of the illnesses servicemen who had been involved in nuclear bomb testing were experiencing.

The last above ground nuclear test in this country occurred July 1962.

To check on how the anchor was holding up, if it was doing it's job and to check on my development, my mother (and I) were x-rayed routinely.

I really don't know how close to term I was born.  I know it had to be done before Mom went into labor which had the potential to compromise the anchor (and her cervix) .  And because all non-emergency cesarean deliveries were done on a Saturday at St. Luke's Hospital in Denver, I was born on a Saturday.  Like my brother, I also had Neonatal RDS and was rushed to Denver's Children's Hospital.

RADS

When I was kid I swore that whenever I was near x-ray machines I could feel it.  Maybe it was a memory developed in utero of the vibrations those machines used to produce.  Whatever it was, I knew it and it felt oppressive to me.

I have been aware of my massive radiation exposure since at least my teenage years.  It was probably much earlier than that, because all of a sudden my parents began demanding that I have lead aprons put on me whenever I was x-rayed.  Back in the 60's and early 70's this was NOT standard operating procedure.

When I was 16, I began to get very involved in the anti-nuke movement.  At 17, I got a job working in the medical research labs at the University of Colorado Medical Center.  
It was there, with access to the medical school library and information from the anti-nuke organizations I began putting together an understanding of what my life was going to be like, especially as I got older.  All that radiation in utero had probably mutated enough "stuff" that I had time bombs in my body, waiting for the "appropriate" time to go off.

MORE

Then at 19 I learned about Diethylstilbestrol (DES).  It was the first synthetic estrogen, developed in 1938.  It was also a drug given to mothers from 1938 - 1971, who had miscarriages  and premature births to help them bring their pregnancies to term.  They were now finding that the female children of those mothers had an increase in problems with reproductive organs.  Male children did too and then there was the possibility of genetic changes that could be passed to the children of those children.

My Mom was a prefect candidate for this drug.

So I asked her.  She had no idea that I was at that point deciding whether or not to have children, if she had said "yes," then that would have been the end of it.  But she said "no."  She has always been straight with me about this sort of thing, so "no' it was.  I went on with life.

I married, had 1 miscarriage and 2 kids, divorced, married again, miscarried once and had another 2 kids.

MOVING  ON

I have been, here on Dailykos, documenting my health issues and problems.  
KosAbility: Velcome to my house ov horrors
KosAbility: I should be freaking Wonder Woman by now
KosAbility: OMG they're smoking
KosAbility: Flour, snow cones and blindness
First position is not toes in! (which became my first KosAbility diary)
Suicide

Seems like I've already written about a lot, but I have barely scratched the surface. There are more KosAbility diaries coming from me, about me. (sad but true)

I had been, for quite sometime,  proscribing much of my issues to in utero radiation exposure, but as time wore on I began to think that it had to be something else.  Radiation couldn't have caused all of this in me.
And then on October 10, 2011, my mother emailed me.  She remembered something and had been reading about Diethylstilbestrol (DES), and she asked me to talk to my doctor.

I sat there and felt the floor drop out from under me.  This was what I had asked about 30 years ago.  This is what I had wanted to avoid passing on to my children.  I wrote back asking if she was sure, then went outside for air.

I was crying (tears are running down my cheeks as I write this, it's still fresh and raw), coming to terms with this would not be easy. There have been several days spent on the deck kicking recycle boxes.

My husband and I began looking at the symptoms of DES exposure, and I have many of the markers.  If I am a DES Daughter (which we are now assuming I am) it also explains many things:

               o Abnormal Paps – For some DES Daughters, being told a Pap test came back abnormal is a common occurrence. But often, by about age 40, the body seems to heal itself and the routine of abnormal paps abates. However, no matter what the age, there should be follow-up with a doctor after every abnormal pap.

(snip)        

    * Structural Changes of the Reproductive Tract – DES Daughters have an increased incidence of structural changes in their reproductive organs, among them a T-shaped uterus (See illustration below). The uterine lining of a T-shaped uterus appears to be the same as for an unexposed woman so researchers suggest the fundamental difference (except for the shape) is in the underlying structure of the fibromuscle. Of note is that pregnant DES Daughters with a T-shaped uterus and those with a normally shaped uterus are both at increased risk for premature delivery.

      Prenatal DES exposure can adversely affect the shape and functioning of virtually the entire reproductive tract, including the vagina, cervix, uterus, fallopian tubes, and ovaries. Some DES Daughters report having an incompetent cervix, which can be the cause for some second-trimester pregnancy losses.

(snip)

    * Miscarriage, Preterm Labor & Delivery – Because of the increased risks for these problems, all DES Daughters, even if they’ve had previous normal pregnancies, require high-risk obstetric care - starting at the earliest stage of pregnancy.

 (snip)    

    * Endometriosis – DES Daughters are at increased risk for this painful chronic disease. They often have anatomical complications such as cervical stenosis (narrowing of the cervical canal, sometimes to the point of closure) that may increase the likelihood of retrograde menstruation. Other anatomical malformations common to DES Daughters may also increase the risk.

(snip)

    * Paraovarian Cysts – Prenatal DES exposure is associated with an increased risk for these benign gynecologic tumors (or non-cancerous fluid-filled sacs adjacent to, but not part of the ovary). The cysts include:
          o functional (follicular and corpus luteum), cystadenoma (serious and mucinous) or simple cysts;
          o endometrioma (chocolate cyst);
          o benign cystic tertoma (dermoid cyst);
          o parovarian including hydatid and paratubal.

      These cysts are common among all women in the U.S. and treatment is generally surgery, depending on the symptoms of discomfort being experienced, whether DES-exposed or not. Many women with cysts have no symptoms and need no treatment.

(snip)

    * Depression
(snip)

- DES Action

I've snipped out all I don't or haven't had (yet) which includes; Clear Cell Adenocarcinoma (CCA) of the Vagina and Cervix, Breast Cancer, infertility, ectopic pregnancy, preeclampsia, and early onset menopause.  

Physical problems for DES Sons include epididymal cysts,  genital structural changes, testicular varicoceles, infertility, testicular and prostate cancer. (source - DES Action)

And it doesn't stop just with those who were exposed in utero:

Current research also looks at DES in the third generation. These are the children of men and women who were exposed to DES in utero; thus, they are also the grandchildren of women who were given DES during pregnancy. Studies of the third generation are important because DES might be associated with epigenetic changes. Epigenetic changes involve changes to the way genes behave (not involving the DNA itself) that may be heritable from one generation to another. If epigenetic changes occur and are heritable, studies of the DES-exposed third generation have implications for the influence of environmental endocrine disruptors on human health and evolution.
-- Wikipedia
WHAT WE KNOW ABOUT DES GRANDCHILDREN:

Delayed Menstruation Regularity – DES Granddaughters participating in the long-running National Cancer Institute DES Follow-up Study reported menstruation starting at about the same age as unexposed women. But it took longer for DES Granddaughters to achieve regular menstrual periods, meaning a period is predictable within five days. This small study also hints at the possibility that infertility may be more frequent in DES Granddaughters, but the researchers are quick to point out that further studies are needed.

Hypospadias – Studies done in both the Netherlands and France indicate that male children of DES Daughters may be at greater risk for this birth defect than unexposed individuals. Hypospadias is a condition where the urethral opening on the penis is in the wrong place, emerging somewhere down the penis shaft instead of at the tip. In many cases hypospadias can be corrected with surgery. Of note is that other studies have failed to replicate this finding. Read more.

Tumor Growth – Animal studies indicate a higher rate of tumor growth in DES Grandson and Granddaughter mice than in unexposed animals. But researchers caution that more studies are needed to prove conclusively that this finding in DES-exposed mice also occurs in humans.

Overall Cancer Risk - Human studies of DES Grandchildren, at this time, find no overall increased cancer risk for DES Grandchildren.
-- DES Action

There are no studies on DES Great-Grandchildren.

On October 12, 2011, I joined DES Action.

In the next few weeks I began to tell my kids.  My oldest son's response was, "Can't you sue someone over this?"  Well yes I could.  But that requires finding medical records that are over 50 years old, and they might not be in existence now any way.

I also wrote my Mom to let her know that I wasn't and am not angry with her.  Nor do I blame her for anything, I never have.  It concerned me greatly what she would think about us and our relationship.  I have read that some DES mother-daughter relationships don't fair well with this information.

But why did my Mom not remember being given DES at first?  Because DES came in  different forms (pills, creams, and vaginal suppositories) and even in prescribed pre-natal vitamins.  A pregnant mother might not have even been aware that she was getting DES.

It also came under a host of product names

                                                                     
DES Product Names
Nonsteroidal Estrogens
Benzestrol

      Chlorotrianisene

      Comestrol

      Cyren A.

      Cyren B.

      Delvinal

      DES

      Desplex

      Dibestil

      Diestryl

      Dienostrol

      Dienoestrol

      Diethylsteilbestrol dipalmitate

      Diethylstilbestrol diphosphate

      Diethylstilbestrol dipropionate

      Diethylstilbenediol

      Digestil

      Dinestrol

      Domestrol

      Estilben

      Estrobene

      Estrobene DP

      Estrosyn

      Fonatol
Gynben

      Gyneben

      Hexestrol

      Hexoestrol

      Hi-Bestrol

      Menocrin

      Meprane

      Mestilbol

      Microest

      Methallenestril

      Mikarol

      Mikarol forti

      Milestrol

      Monomestrol

      Neo-Oestranol I

      Neo-Oestranol II

      Nulabort

      Oestrogenine

      Oestromenin

      Oestromon

      Orestol

      Pabestrol D

      Palestrol

      Restrol
Stil-Rol

      Stilbal

      Stilbestrol

      Stilbestronate

      Stilbetin

      Stilbinol

      Stilboestroform

      Silboestrol

      Stilboestrol DP

      Stilestrate

      Stilpalmitate

      Stilphostrol

      Stilronate

      Stilrone

      Stils

      Synestrin

      Synestrol

      Synthosestrin

      Tace

      Vallestril

      Willestrol
Nonsteroidal Estrogen-Androgen Combinations
Amperone

      Di-Erone

      Estan

      Metystil
Teserene

      Tylandril

      Tylostereone
 
Nonsteroidal Estrogen-Progesterone Combinations
Progravidium    
Vaginal Cream Suppositories with Nonsteroidal Estrogens
AVC Cream with Dienestrol

      Dienestrol Cream
 
- from the National Cancer Institute
     
I've also begun the process of informing various medical personal.  I told the nurse doing the intake interview before I saw my doctor for my physical.  She thought that I wasn't old enough to have been exposed to DES in utero.  She believe that it ended in the 50's.  I had to tell her it was into the 70s.

I read the accounts from other DES Daughters on the DES Action listserv.

I have an appointment to see a new gynecologist in two weeks.  He has been recommended by members of DES Action as having experience with DES daughters.

So this story of mine is very much ongoing.

My personal motto is "The only way out is through."  Something that many people with chronic health problems understand immediately.  This is just something else I need to go through, making sure I always have access to health insurance, medicine and medical professionals is a must.



Other interesting info:

Though prescribed for women who had miscarriages and premature births from 1938-1971, it was found to have NO effect on pregnancy outcomes in 1953.

DES has not been banned.

DES was called stilboestrol in the UK

A DES  Daughter's blog

DiEthylStilboestrol  Youtube Channel


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