Forum Baby wish

Des-granddaughters

21 replies · page 1 of 2

soof88
Hi everyone,

I stopped the pill three months ago. One of the reasons for this is that I’m a DES granddaughter. My grandma had several miscarriages in the late 50s, after which her doctor advised her to take the DES medication. My dad was born. In 1975, it was announced that children born as a result of this drug would have reduced fertility. Well, my dad has had several children and as far as I know, he has no problems. However, I struggle with a very irregular cycle, which makes the chance of getting pregnant smaller. Is this a coincidence or not?

I’m very curious if there are more women who are DES granddaughters and what your experiences are with this.

Replies

Page 1 of 2

  1. kruimel #2

    Hi!

    I'm not a DES daughter, but I found your topic interesting and did a quick Google search

    "Fortunately, research from the US on DES granddaughters has shown that they do not (unlike their mothers) have abnormal cell lining on the vaginal walls and cervix."

    But this part is about the 3rd generation of DES children in female form... I don't know if it can also have an effect on men? According to me, there's never any talk about DES sons...

    Anyway; I'd also guess it's just a coincidence. The pill is really annoying but there's nothing you can do about it. If I were you, I'd go to the GP to ask about it... they can probably reassure you better than someone on a forum.

    Good luck!

    xx

  2. soof88 started this #3

    Hi Crumb,

    Yes, I read that too. Now the studies are quite contradictory. One says this, the other says that. I’ve already been to a gynecologist about my cycle. She said all the internal organs were fine. But still, something keeps nagging at me.. That’s why I was curious about (similar) experiences.

    I just stopped the pill. So me and my man will just keep having fun and trying for now, and if that doesn’t work out, I’ll go to the GP for a check-up.

  3. justme #4

    Hi,

    That's great that you've started a topic about this.
    I'm also a granddaughter, on my mother's side.
    Recently, she received a letter for both my sister and me, but I haven't had the chance to read it yet.
    I'm also worried about it.
    I don't have any menstrual issues, but my sister does.
    So I don't know if that's related.

  4. soof88 started this #5

    Hi justme,

    Sorry for the late reply. I probably missed the notification of your message in my email. It's so nice that I can talk to someone who's going through the same thing. It's quite special that your mom wrote a letter for you. Did your grandma write it? From what I understand, this topic is quite difficult for my grandma, so I won't ask her about it. I have two younger sisters. One of them has regular periods and she also has a child. My other sister has very irregular periods.

    I have no idea if this has anything to do with it, but it does cross your mind sometimes.

  5. hartje #6

    I don't have anything to do with it and I'm also very irregular.. I've skipped a few months before.. It could be related but it definitely doesn't have to be, just look at me.

    Love, sweetheart

  6. soof88 started this #7

    Sweetheart, I actually assume that too. I just don't rule out that it could be a cause of DES. By the way, you have an incredibly cute little one in your profile picture!

  7. justme #8

    Hi soof 88,

    Yeah, it's nice to talk to someone who's going through the same thing.
    There was a little miscommunication,
    Mom got the letter from who knows who.
    But someone from the hospital or something like that.

    I still haven't read the letter, but we got it because my sister and I are at the age where you start having kids, and they want to warn us about that.
    Not sure if they want to test us too, but at least we're aware of it.

    Once I have the letter in hand, I'll let you know what it says

    My grandma unfortunately passed away, but I understood that she had a really hard time with it, and that's why she was so incredibly happy when she had a child and grandchildren.
    We were very important to her.

    Yeah, it definitely crosses my mind regularly.
    I just had a false alarm, thought I was pregnant, but it was negative.
    Then you do keep that in the back of your mind.
    It would be nice if it were true, because you never know how things stand with that
    Des Gedoe.

    Greetings!

  8. Maureen Guest #9

    Hi Soof 88!

    I have exactly the same problem as you. My grandma had problems with her pregnancy, took DES, and because of that, my dad was born. My dad has had 3 kids, without any problems. I'm still 18, but I'm already really into it. I've looked up a lot online about it, but indeed, there's not much to find about DES granddaughters through the father's side. There's nothing weird going on with my period either. What influence does the pill have on you being a DES granddaughter?

    Greetings!

  9. Esmeralda #10

    Hi everyone,
    I'm also a granddaughter on my mom's side and I'm now pregnant with my second.
    My mom has had two relatively good pregnancies but with a few miscarriages. Besides that, she definitely has physical issues due to DS.
    My sister has a reduced chance of pregnancy due to PCOS and a tilted uterus, whereas I never got checked and was never taken seriously by my GP even though my cycle went from normal without the pill to almost no cycle, with similar complaints as my sister. Luckily, you get checked during pregnancy and it turned out everything was fine, and I got pregnant easily despite my cycle. My mom still worries a lot because her brother also had problems later in life.
    Coincidentally, I got asked about DS during a check-up at the GP and then it turned out that a long-standing or irregular cycle is a logical explanation for being a granddaughter.

    I'm really happy to finally be able to talk about DS with others. Many people and doctors know very little about it.

  10. moussie Guest #11

    Hi! I’m also a granddaughter. My mom took DES because she got pregnant with my mother at an older age. It was supposed to prevent birth defects that can happen with older pregnancies. My mom was 46 at the time.

    My mom did have two good pregnancies, but she got cervical cancer at age 29. (She’s recovered now.) I myself have had an irregular cycle, 3 miscarriages. Problems with giving birth – 2 were born with oxygen deprivation. One is doing well now after 12 years. The other passed away due to oxygen deprivation during birth. The third was born via planned C-section and is completely healthy.

    Now, a PAP smear showed me a PAP 4 result. If I start talking about DES, people just brush it off. But I don’t think it’s a coincidence anymore. (By the way, I never got a letter from the hospital.) I’m curious if anyone else got a letter or not.

  11. M. Guest #12

    Hi everyone,

    It's so nice to finally read something about DES granddaughters. My grandma also used DES when she had trouble getting pregnant. Eventually, my mom and my aunt were born. They both had a lot of trouble getting pregnant too. My mom had cervical cancer at 19 (it was removed and she's been fine since), and my aunt had a lot of miscarriages. She also had her uterus removed at a relatively young age (40) due to the effects DES had on it. It took my mom 5 years to get pregnant with me.

    My mom and aunt also received compensation for their issues a few years ago.

    Now, my boyfriend and I really want kids and plan to stop the pill soon. I'm just really scared it'll take as long for me too, so I'd like to stop the pill sooner rather than later. But this is more because I'm scared I'll also end up waiting 5 years to get pregnant, even though it doesn't have to be that way. It's tough because there's not much known about how DES affects granddaughters. Have you had trouble getting pregnant?

    Best, M.

  12. LadyLola #13

    Hey ladies,
    My first post here... my boyfriend and I have been thinking about starting a family for a while now, I just stopped the pill. Unfortunately, we're waiting to really try until we get some other medical results, but we're finding it quite exciting.
    Actually, it's quite a relief to read something about DES granddaughters... I thought I was the only one dealing with this. My grandmother took it, had 3 healthy children (and a miscarriage in between). My mother had me, but also got the advice to keep it to herself, it was a difficult pregnancy too. Her sister and brother both have two children. Since I've been on the pill for a very long time (I'm 27 now, been on it for 12 years), it's a bit hard to judge if I have a normal cycle. My mother did get cervical cancer at 40. I don't know if that's linked to DES.
    What I found regarding research suggests that:
    1. They actually don't know much about DES grandchildren yet
    2. DES granddaughters (girls) have a relatively high chance of normal fertility if their mother had few problems.
    3. There is a slightly higher risk of testicular cancer in DES grandsons (obviously.)
    But that was a while ago. Anyone else? :-S
    LL

  13. Meisje van 15 Guest #14

    Hi, I'm a 15-year-old girl, 3rd generation DES child. My mom was declared infertile because my grandma used the DES pill. So I came into the world through IVF. I've been menstruating for over 3 years now, but it's still very irregular, often up to 15 days late. I'll probably experience consequences if I were to get pregnant. I'm dealing with this too.
    It's actually quite logical that your dad didn't notice much, since this infertility manifests more in DES daughters than in DES sons.

  14. Junikindje #15

    Hi everyone!!

    Interesting topic..... I myself am also a DES granddaughter. My mom is a DES daughter and because of that has an abnormal shape of the cervix/vaginal wall. I was indeed wondering if I might experience any problems because of this. And if I carry anything from it myself.

    Since I work as a medical assistant, it was easy to ask the doctors about it. Good news for the DES granddaughters among us..... because we don't get any of that anymore. They also checked everything down there and nothing abnormal was found.

    Hope you're all feeling a bit reassured best wishes

  15. Daniëlle Guest #16

    Hi! It's nice to read about DES granddaughters here. I'm also a DES granddaughter. My mom is a DES daughter. She was pregnant 8 times and ended up having 4 kids. Three of those pregnancies involved a cerclage (a stitch around the cervix to keep the baby in place), and I had one too after they almost lost me. I'm 8 weeks pregnant now and feeling a bit worried about my pregnancy. My GP gave me a note for the midwife mentioning that my mom is a DES daughter and that my pregnancy might be at risk. The midwife brushed it off, saying we don't do anything about it because there's no known evidence of abnormalities in DES granddaughters, so there aren't any. So I'm going back to the GP next week because I don't want to take any risks with my baby and want to be under the care of a gynecologist at the hospital. Not much is known about DES granddaughters yet, and I believe there can be differences in abnormalities, just like there are among DES daughters. I read a story on descentrum.nl from a DES granddaughter who had problems with her pregnancies, similar to her mom's. I definitely think you should insist on extra monitoring, especially since so little is known! Every woman is different, and DES effects vary from person to person, so just because one DES granddaughter doesn't experience issues doesn't mean others won't.

  16. Anonymous Guest #17

    I read this now and then think... did they know about it? Back in the day when our grandmas were prescribed this medicine... does anyone know?

  17. Kat #18

    I’m also a granddaughter myself. I read a lot of relatable stories here. I especially have an irregular and long cycle. Despite that, I got pregnant quite easily twice and had successful full-term pregnancies with few other issues. I also mentioned it to my GP, and they said there’s no problem for granddaughters, but there would be if it were a grandson. Unfortunately, I forgot to ask how that worked back then. But I trusted my GP in this case.

    Anonymous: I don’t think they knew back then. I don’t think they tested that medication and then waited 30 years to see what the effects were on the next generation.

  18. Ssss #19

    Hi Soof 88, I read your message. I'm also the granddaughter.
    Mother of my father is also the mother.
    Now it has come to my attention that I have 2 uteruses. I'm going to talk to the gynecologist about it, at least I want to call her to see if that's related.
    Love

  19. Margaretha Guest #20

    Hi everyone!

    I'm also a great-granddaughter; my grandma took the medication during my mom's pregnancy. Basically, I have a regular cycle, but when I'm on hormones like the pill or the Implanon implant, my whole system goes haywire. My period can last anywhere from 2 days to 3.5 weeks.

    Since the beginning of May this year, my Implanon implant has been removed because my husband and I are trying to conceive. My period started 2 days later and lasted 6 days. Since then, I haven't had a period, so you'd think I'm pregnant! But so far, all 3 tests have been negative. It's now been 3 weeks late. However, this late period comes with a lot of lower abdominal pain—so much so that I regularly wake up at night from it. I called my GP, and I have to do another pregnancy test this Friday, but an early detection test. If that's negative, I have to go see the GP next week.

    It keeps running through my head whether this could be related to that. The GP knows I'm a great-granddaughter.

    Do I just have these intense lower abdominal pains? And a late period with negative pregnancy tests?

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