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Post by 1234 on May 17, 2011 18:00:37 GMT -5
So, this is something I've been wondering for the last 10 weeks since my surgery, and haven't found any answers. Was hoping you all, with all the expertise I've found here, would have some answer. And please move me if there is another thread about this! I've searched but haven't found one.
Unlike many women with endo, I have no problem getting pregnant. I get pregnant at the drop of a hat (or maybe "hat" isn't the right word).
But I can't sustain a pregnancy. My first pregnancy, I miscarried at 15 weeks. My second pregnancy, I was pregnant with twins (didn't know this). One was ectopic, the other normal. They discovered the second pregnancy while terminating the ectopic pregnancy, and aborted it, while I was asleep for the ectopic procedure; they didn't ask my husband either, who was in the waiting room. I was 12 weeks pregnant. They told me I would have miscarried the second one, if they hadn't aborted it. Who knows. This was a year ago, and I was undiagnosed with endo at the time.
But my question is, why? I can understand how endo would prevent you from getting pregnant, but not why it would make you miscarry a normal pregnancy at 15 weeks, or have an ectopic pregnancy.
Thanks for the help!
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Post by pretty on May 17, 2011 18:46:53 GMT -5
Endo can cause infertility since it is an estrogen dominance situation where your other fertility hormones are out of whack. (this is my idiotic interpretation of my endo book's explanation)
For example I personally had a bunch of work done, but previous to my surgery, I was on BCP for over 15 years. Thus my luteal phase, the time between Ovulation and my period, was too short for implantation. I am now seeing it lenghtening and my cycle length overall changing and my temps stabilizing over the last 6 months. I am also now apparently ovulating regularly at least every other month.
the book Taking CHarge of your Fertility by Toni Weschler or Wexler is really good at explaing these things.... also Endometriosis book by Mary Lou Ballweg is good too...
Karen will have a better way to explain this. In the mean time you should really get those books, start temping daily, and checking your cervical mucus daily, and charting those things, and you will then understand YOUR cycle to see where you can adjust things. I have not yet tried this but after my next appt with my NP (Naturopath) if my luteal phase is still off I will try bio-identical hormones to work on the issues that way...
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Post by Karen on May 17, 2011 18:56:54 GMT -5
First off, I'm very sorry about your losses, particularly the twins. I can't imagine hearing the news without being notified in advance. I'm incredibly sorry you had to go through that!
I'll qualify this by saying that I'm not an infertility expert, but some of the research I've done on my own conditions mention miscarriages. But it's pretty limited. As for endo and miscarriages, I don't know if there's a common direct link. Often women with endo have difficulty getting pregnant in the first place, either due to hormone imbalance or damaged ovaries/tubes/uterus, among other things. The good news is that you ARE able to get pregnant, it's now just a matter of figuring out why you're not maintaining your pregnancy.
Have you had any blood work-ups at all to see if there are any reasons, or have you had a full fertility work-up? Was there anything else (besides the ectopic pregnancy) that wasn't quite right? Do you temp at all? Have you ever had your thyroid checked? Even some really minor imbalances can cause problems either conceiving or miscarrying, and treating them can help. Do you have any uterine abnormalities?
If you're TTC and you haven't read TCOYF (see my signature line), do yourself a favor and check it out! It's right up your hippie alley and something in there might turn on a lightbulb for you! In the meantime, feel free to bounce ideas off here!
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Post by 1234 on May 17, 2011 21:59:32 GMT -5
Thanks, you all. This is helpful. I will find that book and see if it helps me figure out what's going on. Right now I'm not trying to get pregnant--3 losses is enough for me, unless I can figure out why they happened.
All I really have is two bits of info: 1) whenever I had bloodwork done when I was pregnant, my white blood cells were really really high, even though I wasn't sick--so high that one doctor thought I had HIV (I didn't) and 2) in my follow-up to the lap, the surgeon said something about the uterus of a woman with endo could be less hospitable and that the high white blood cell count might indicate that I was "allergic" to the fetus--and my body kept trying to reject it, until it succeeded.
Other than that, I'm not sure what my cycle is post lap yet. In 10 weeks, I've bled more than I haven't--sometimes so heavily and with such large clots I've pushed the diva cup out--but I haven't had a full cycle. 3 rounds of prednisone, a mirena, etc--it screwed me all up. Pre-lap, and post BCP, I had a really long cycle, from the mid-30s to the high 40s. I would ovulate somewhat normally--between day 14 and 20, but the would take forever to start my period. My endo pain started a couple days before ovulation, and lasted until day 2 or so of my period, so I was always just PRAYING for my period to start and put an end to the hurting. On BCP, I just bled most of the time.
I have temped on and off. mostly I have just a really low temperature--high 95s to low 96s. But I thought temperatures were mostly related to conception?
I'm realizing now how little I know. I'll get that book and see what I can learn. Thanks for pointing me to it.
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Post by omaklackey on May 17, 2011 22:15:56 GMT -5
HI, I also had a 11 week miscarriage. I know a little of what you are going through. It was really rough. do you know what blood type you are? And did the doctor mention "hostile uterus" at any time? That is a condition where the body attacks the fetus and rejects it.
However, one miscarriage doesn't mean that you will reject every baby! Since your second was ectopic, it just meant the baby implanted wrong. It doesn't mean it can't do it right and that the next baby will also miscarry. I absolutely had the same worries after mine. I couldn't stop worrrying about all the things that might go wrong. Its a terrible thing to go through and finding good information on it is helpful. There are a lot of great books out there about dealing with the grief, and many of them also have information about what could cause miscarriages, etc. I was given one and I wanted to keep it so bad, but it was something that was passed from woman to woman that needed it. Looking back I wish I had at least written down the name so I could find it. My own miscarriage was done at home. We choose to bury what we had, there was no actual baby but a beautiful perfect placenta about four inches across. We planted a tree and in my mind, we named the baby, a name I don't share with anyone. I don't blame the endo (even though I wasnt' diagnosed), things happen. I just hold the experience in my heart and try and help other woman at least be able to talk about it. It took me a year before I could tell people anything about it and four before I was able to really share any details about what we had done. It was to painful. I hope this encourages you! I'm so very sorry you had to go through this
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Post by Karen on May 18, 2011 6:43:03 GMT -5
All I really have is two bits of info: 1) whenever I had bloodwork done when I was pregnant, my white blood cells were really really high, even though I wasn't sick--so high that one doctor thought I had HIV (I didn't) and 2) in my follow-up to the lap, the surgeon said something about the uterus of a woman with endo could be less hospitable and that the high white blood cell count might indicate that I was "allergic" to the fetus--and my body kept trying to reject it, until it succeeded. Hmm, if your temps are that low, please please please get your thyroid checked! Even if your doc doesn't believe that low temps are related to thyroid function, please persist. As for the other bit of info, I've read that the body can create antibodies against the fetus and reject it. But, there things you can do to help your body accept it. Hmm, my guess is that's the biggest piece of the puzzle. Though having a long luteal phase might be an indication of something else, too. Hmmm... It might take your body a while to settle down after your lap and mirena, and I understand why you wouldn't want to try to get pregnant again, at least until you figure out why you're miscarrying. But, if you can get to the bottom of some of these things and are able to correct them, I suspect you'll be a wonderful mom some day!
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Post by 1234 on May 18, 2011 7:58:47 GMT -5
Thanks again. I'm once again amazed at the amount of support and information here. I really, really appreciate it. Omaklackey, thanks.
I think I had just assumed that the "abnormal uterine lining" that was referenced as an explanation for why they aborted the 2nd twin was part of endometriosis. Well, to be honest, I didn't think about it at all for about a year--I sort of pushed it away--until I got diagnosed with endo and then I just assumed they were related. Maybe that was a false assumption and I just need to educate myself more. I also haven't pushed the various doctors I've seen too much for explanations; my solution to not liking their answers is just to stop going to doctors. For instance, I'm really shy about going back to the dr that diagnosed me, because once the mirena didn't work and other BCPs didn't work, all she wanted to do was Lupron, and I don't want to do that.
Are low temps related to thyroid? I thought that was puffy face, hair loss, and weight gain, and I've always been small with too much hair. What sort of doctor do you go to to get your thyroid checked? I don't have a PCP--just an allergy/asthma person I go to in order to get my stock of inhalers and the center that did my endo surgery. If I get bronchitis or something, I just go to a health care clinic or one of those CVS minute clinics. Will a regular doctor check thyroid?
Oh, and the other thing about blood type. I'm A+. Apparently being A+ nearly killed me, when I was born, because my mom's blood type was something different that is poisonous to A+ and she gave me antibodies against my own blood, so I spent a while in the hospital trying to be persuaded to accept my own blood.
Thanks again.
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Post by JC on May 18, 2011 11:22:04 GMT -5
Your regular doctor can check your TSH levels which is the thyroid stimulating hormone. The TSH is actually a signal from your brain (pituitary gland) to tell your thyroid to make thyroid hormones; specifically T3 and T4. A more in depth test would be to check your free T3 and T4 counts and sometimes your primary care doctor can order them or they will refer you to an endocrinologist.
I was thinking about your pregnancies. I'm so sorry for all of your losses! I am wondering if you have endometriosis inside your fallopian tubes causing a blockage. The actual fertilization of the egg happens in the fallopian tube, then the fertilized egg travels down to the uterus to implant into the uterine wall to develop. There could be two things happening, either there's a blockage in your fallopian tubes causing the fertilized egg to get stuck causing the ectopic pregnancy, or your eggs are getting through but failing to implant into the uterine lining. The hormones that I would be interested to see for you are LH and FSH during our luteal phase. You need those hormones to sustain the high levels of progesterone and estrogen to keep the lining of your uterus intact to sustain a pregnancy. If those levels are dropping then the fertilized egg will fail to implant and you will miscarry.
Do you have the option to see a reproductive endocrinologist? I'm sure there's a good one around here in the DC area. That'd be a great doctor to see for this.
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Post by pretty on May 18, 2011 11:39:47 GMT -5
I was reading last night online that taking a baby aspirin once a day helps to reduce the killer cells inside the uterus from attacking the egg/sperm, so I went to the store and got some. Also read that vitamin B6 taken regularly every day (but make sure your multivitamin has Bcomplex in it, not supposed to JUST take B6) can help lengthen the luteal phase. So I got some of that too. Here are the other supplements recommeded: A prenatal vitamin with 800 mcg of folic acid, every day Red Raspberry 1000 mg/day, all cycle Vitex (chasteberry) 1000mg/day all cycle B6 50 to 100 mg/day all cycle (I'm taking 1/2 a 100 mg pill, since it said to start low and do that for an entire cycle, keeping track of Luteal Phase length, and then increase next cycle if still less than 12 days) Lecithin - 1 before each meal. I'm not sure about this, since lecithin is soy. researching. 1 baby aspirin (81 mg aspirin) each day all cycle Then it said to take Evening Primrose Oil from period to Ovulation, and Flax Seed Oil from Ovulation to period. Reasin is EPO causes uterine contractions, so the switch to FSO is to keep your uterus calm during LP thru to period. Kristin I am not really recommending any of this, more sharing info - I do have to do a LOT more reading on ALL these supplements, especially the Vitex and Raspberry and Lecithin, but I read about the B6 on like 15 different places and the baby aspirin too, so started those last night, and I'm now being more conscientious about taking my prenatal, my fish oil, and my other stuff every day same time.
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Post by Karen on May 18, 2011 13:10:42 GMT -5
I think a lot of those supplements would help getting pregnant (though I can't comment on the specifics doses or supplements) but you're able to maintain pregnancy for many weeks/months, so I suspect a luteal phase defect isn't to blame. Yes, body temps are often tied to thyroid and/or adrenals and the symptoms can vary or not even be noticible depnding on how mild or severe they are and how your body reacts. I would think a reproductive endocrinoloyist would be able to give you an in depth work, but I would still suggest reading tcoyf first do you get a sense of what you're dealing with.
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Post by 1234 on May 18, 2011 13:40:58 GMT -5
Pretty, thanks for all of that information. I'm a big fan of flax seed oil, my chia seeds, and prenatal vitamins but good lord! If I extend my luteal phase, I'll die. I was gonna start taking a vitamin B complex, but if that makes my cycle longer I just can't. That part is so painful for me, and at least so far hasn't improved much from the lap.
I'm a bit intimidated by the idea of going to see a specialist on reproductive endochrinology, at least initially. I think I need to start smaller. I thought there was a direct relation between endo and miscarriages, but it seems there isn't necessarily and I need to do a lot more homework.
However, you all have inspired me at least to go and see a regular dr and get a physical. I haven't had a physical since I was in high school and the nurse took my blood pressure, heart rate, height, and weight before ok-ing me to run track (which I did for one ill-advised year, before I got the memo that I am NOT a sprinter). I got a recommendation from a co-worker who is VERY particular about her doctors and have an appt on Friday with someone for a regular physical with lots of bloodwork for things like cholesterol and thyroid and whatever else. This "regular doctor" also does annual pap smears, which I haven't had done in a couple years (I felt I was always going to a female doctor either with a pregnancy issue or complaining about pain, so I felt like I'd done my obligatory annual visit, but I haven't).
Thanks for the examples of being more responsible about health concerns. I have to admit, the excuse I always use is that it's so annoying to bike to dr appts, especially as they seem to be all the way out in the suburbs. I DO NOT recommend trying to bike home from a cold-turkey mirena insertion. That was 14 miles of pure hell. But the real excuse is I'm intimidated by doctors and have a hard time shaking my southern, preacher's-daughter training in politeness and respect for authority to push back when I feel I'm not being heard.
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Post by pretty on May 18, 2011 13:57:11 GMT -5
Hey girl I meant it lengthens the luteal phase, not your actual period. Sorry if that wasn't clear. I have learned ALL my self-advocacy and assertiveness here, online. (Thanks, endo sisters!) Gotta start somewhere!
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Post by Karen on May 18, 2011 18:36:16 GMT -5
If your luteal phase is, indeed, long already, no, you wouldn't want to lengthen it even more! Temping might help you determine exactly how long it is.
But, going to a regular doc for a physical sounds like a really good non-intimidating start. I can understand why you'd want to avoid doctors and it may stir some emotions for you even peeking into some of the potential causes for your losses, but in the end, knowledge is power. Glad you're catching the advocacy bug! If you feel intimidated, don't be afraid to go in there with some prepared notes or questions. Write down your medical history in advance, and bring two copies if you think of it so you can give one copy straight to her so she'll spend more time listening. And don't be afraid to tell her exactly why you're there. Sometimes, if you don't tell a doc what you want to get out of the appointment, you'll be sadly disappointed!
Good luck at your appointment!!!
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Post by JC on May 18, 2011 20:41:10 GMT -5
I have PPO insurance and I always have a tendancy to run to a specialist first. I like cutting out the middle man.
I hope you get to the bottom of this! I think you can have some great success once you find out what the source of the problem is. I used to bike everywhere too when I lived in Silver Spring. It's crazy!
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Post by 1234 on May 20, 2011 12:37:47 GMT -5
Thanks you all. The Dr. thing went well. I liked her very much, and she was really gentle on the pelvic exam which is always a plus. Waiting for the bloodwork, but Karen you got it in one--she thinks I'm low on thyroid.
She's also going to wait for this first round of blood tests to come back and see what's up, and then do more in depth "micronutrient" tests, but agreed there was no reason for a relatively healthy 29 year old (minus endo and asthma) to have regular problems carrying a healthy pregnancy to term. So maybe I have a misfunctioning thyroid gland.
And Jenaya, if you ever want to get that bike back in business (I know you have way more on your mind right now), I can fix it for free at 146 U St NE!
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