Polycystic disease...hope I spelled it right

Discussion in 'The Watercooler' started by MidwestMom, Oct 2, 2013.

  1. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    My daughter has been trying to get pregnant. She had a LEAP a few years ago and has no insurance so she has not had any gyn checkups beyond follow up to the LEAP. She had cysts when she was on Depakote too. I know, I know. She should get a checkup anyway, but I can't make her. She is 29 and doesn't like to borrow money. Her and SO both work, but they struggle with house payments and just general prices these days.

    Anyway, she is not getting pregnant.Anyone know anything about this? Did you conceive? She and SO of almost eleven years would love to have a child and, although adoption is a possibility (SHE was adopted), they would like to get pregnant first.

    I don't know much about this, but what I did read I didn't like. Again, I know she should go to the gyn pronto, but she won't so it's not what I'm asking.
  2. Ktllc

    Ktllc New Member

    I have polycystic ovaries... Found out about it after a miscarriage. I was to devastated about the miscarriage to real ask any questions about the polycystic issue.
    I was just told that getting pregnant could be hard. Well, 3 healthy kids later, I can say that it is possible to get pregnant even when you have multiple cyst. :)
    But she won't get much answer by just asking around. Every one is different. I can't help but ask: how is she going to afford maternity care? You might want to tease her brain about it... she will have to see an ob-gyn eventually.
  3. dstc_99

    dstc_99 Well-Known Member

    At one point I was diagnosed with PCO (Polycistic Ovarian Cysts). At the time they basically told me to get rid of them I needed to lose weight. They were willing to put me on GLucophage (diabetic medication) that has shown it can help people lose weight. I wasn't diabetic but they said the low dose would help with weight loss and the PCO so I tried it. I couldn't handle the Glucophage it gave me diarrhea so bad I was miserable.

    Other treatments for it include BC Pills if I am not mistaken. At this time I had already had my last child so I'm no help on the not getting prego part since I didn't want to be prego anyway. LOL I do know my sister in law who is extremely overweight and has been since marriage has PCO and she is unable to conceive. Whether or not that has to do with the PCO or the fact both she and brother in law are morbidly obese and therefore unhealthy in other ways I don't know? I can't imagine that either one of them has healthy reproduction ability at this point simply because of the stress on their bodies due to weight.

    I hope you are able to find some answers. It is frustrating.

    On the other hand maybe now is not the best time considering the financial difficulties they are having? Would they be able to afford the child and the medical bills associated with it?
  4. donna723

    donna723 Well-Known Member

    My daughter went through something very similar. She married when she was 26 and a few years later when they tried to have a child, nothing happened. She kept hoping and put off going to the doctor and when she finally did, he didn't do her much good. She went to her regular gyn who put her on medication to encourage ovulation and after six months, still nothing happened. I won't say this doctor was old or behind the times but he was the same OB who delivered her husband thirty years before.

    Finally she went to a fertility specialist. The first thing they did was to check sister in law out to rule out any problems with him ... before they did any invasive procedures on her. He was fine. They then did several tests on her and quickly found the problem. Both of her fallopian tubes were blocked with scar tissue and debris from the ovarian cysts she had as a teenager. And she also had endometrial tissue around her ovaries and in her fallopian tubes even though she had felt no symptoms of endometriosis. She ended up having surgery. One tube was too badly blocked and damaged to be salvaged and the doctor tied that one off because it could have caused an ectopic pregnancy. But he was able to clear the other tube and get rid of the endometrial tissue surrounding her ovaries. A few weeks later she went back in for her recheck and found out that she was pregnant already! And at the age of 33 she gave birth to my beautiful little grandson who is now 4-1/2!

    She so regrets now that she wasted so much time in getting help. She never would have had a child if she had just kept waiting and hoping. And it may not be the case with all gyn doctors but she knows now that she completely wasted the time she spent taking the various drugs that this one gave her. Turns out she was ovulating just fine but with both of her tubes completely blocked and the endometrial tissue surrounding her ovaries, nothing would have ever happened. The tests and surgery were expensive and her medical insurance didn't cover "fertility treatments". But her doctors submitted it as treatment for the endometriosis and the insurance paid for almost all of it! So there are ways around it. I hope your daughter goes to a specialist soon and that things start rolling for her too.
  5. Signorina

    Signorina Guest

    She should apply for insurance thru the new exchanges. Illinois is one of the few states mandated insurance coverage for infertility treatment. She will likely qualify for a full or partial subsidy of premiums if her income isn't great. The premium cost will be far less than even a basic infertility work up out of pocket.

    Has she been diagnosed w PCOS? It has a lot if symptoms including weight gain, body & facial hair, thinning head hair, cystic acne, menstrual irregularities... There are many things to rule out before contemplating PCOS and the VERY FIRST STEP is HIM. A semen analysis is the place a work up starts. Least invasive, lowest cost test first -- and the procedures build from there. Next step is a metabolism blood panel measuring hormone & thyroid function and those results may or may not direct further testing.

    We desperately wanted a 4th babe & I conceived my first 3 super fast. I had a work up after years of trying because I was concerned that my infertility could indicate a medical condition. We paid for the work up out of pocket because WI does not mandate infertility coverage. It was nearly 10k just for the work up and that was 10 years ago. We never did get answers & I didn't opt for infertility treatments beyond clomid. Encourage her to consider becoming insured first.
  6. Hound dog

    Hound dog Nana's are Beautiful

    Pregnant 5 times and have 3 kids. This was with a very active form of the disorder. (I was very grateful for menopause, if they're present now I don't know about them since I no longer ovulate)

    Yes, you can get pregnant with this condition. Does it mean everyone will? No. Each person is unique. But I've known a rather large volume of women with this disorder who have had multiple children regardless.

    BC pills didn't work with mine as far as treatment. Nothing did. But then I'm sort of odd when it comes to such things. BC didn't help me not conceive either. lol Like I said, only thing worked for mine was menopause.....and unlike most females, I was thrilled when it finally arrived.
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Thanks, all. I will talk to her. I will tell her about the exchange and the infertility treatment. She doesn't really understand the exchange. She thinks she doesn't qualify.

    I think the plan is to get married if she gets pregnant and then she can share SO's insurance.
  8. susiestar

    susiestar Roll With It

    I have PCOS, or did. I don't have any of those parts anymore, thankfully. I was told at 19 that between very low hormone levels, polycycstic ovaries and some other problem I cannot remember the name of, plus a badly tilted/out of place uterus, I would not be capable of getting or staying pregnant. The doctor speculated that I probably would lose any child I might conceive and in his mind birth control would be a waste of my money and if I was his kid he would suggest condoms to prevent disease but babies were not a concern. Well, he was an idiot.

    I have 3 kids, and I lost one at 9 weeks. The first two we think the pill gave me enough of a hormone boost to get pregnant. Triphasil (spelled wrong probably) was the one I was on and the docs swore that it was the best choice. I had been taking medications daily for years and took them at the same time exactly by an alarm every day. No missed doses, no medications that would interfere, and both kids are adults now. I didn't go into labor right, but other than that had no problems with the pregnancy other than normal ones and migraines, which I always had. The tilted uterus made labor take longer, and my cervix needed medications to go into labor (the one to start labor is the one that I needed) and that was with all 3. each time they wanted to do a c section and I refused though I don't fully understand why. I just felt that as long as the baby was okay (and they did the internal scalp monitor with all 3) then it was going to be the regular way unless I passed out. It was some gut instinct feeling that I listened to thought I really don't know why my body was telling me that.

    Later I did some research and iwth the help of the doctor who handled the high risk preg with thank you (my age and other medical things including the way my migraines reacted to that pregnancy made it high risk, and then I had heart problems about 4 mos in that were related to being pregnant) said that some research was showing that the very low dose birth control was actually working like a fertility drug for some women who had wacky hormone levels like me. It gave enough of a consistent boost, even when taken with the week of no hormones that the triphasil had at that time), to make you ovulate regularly and get pregnant. He only knew because he knew a researcher working on a drug study on triphasil and had talked Occupational Therapist (OT) him at a conference. I do not know if this is commonly known, but this doctor was amazing and truly on top of his game. He was one of the best ob/gyn docs I have known and both of them truly respect women and know that men could NEVER handle any of what we do.

    PCOS can make it hard to get preg, but I know lots of moms with PCOS who have kids. She needs to get checked ASAP because damage could be fixable if she finds it early. If nothing else, maybe the health dept could help. Here at least to a certain income level that is pretty generous, the state will give women health care for the pill and basic gyn exams. You apply through the Dept of Health and Human Services rather than the county health dept. But the county also has a program that will help and so does the free clinic. So she may need to call around but she can get a basic exam and some guidelines on what might help if she looks around and makes some calls/fills out some forms.
  9. scent of cedar

    scent of cedar New Member

    difficult child has PCO. She was told it would be really hard for her to become pregnant, but she has four healthy children. difficult child was prescribed Metformin, too. It was wonderful for her. SO THEY STOPPED PRESCRIBING IT.

    Go figure.

    Another thing that helped her was a spironolactone, a potassium-sparing diuretic.

    difficult child also had growths associated with the PCO on her bladder and intestines. These were removed. Then, she had a hysterectomy. All this in an attempt to cope with hormonal influxes and imbalances...and nothing has been able to help her. She also has benign growths on her thyroid.

    It's been so tough, for her.