What I've learned so far (same as "Just Starting" and "I Wish" bulletin boards

Lauren2005 · 09-06-2005, 12:14 PM

Hi Ladies,

I decided to post this on the "Just starting" bulletin board, the "I wish someone had told me" board, and now the "Unexplained" board, because trying to understand the IF world has been like a second career for me. I thought if I could put a post together that explained a lot of the surprises I encountered along the way, and what I learned about from others' experiences, that maybe someone (or lots of someones) could save a lot of time, energy, and heartache. This collection below takes the average IF patient months or years to find out!

Here are some key ideas that we IF women have learned along the way:

* there is no such thing as unexplained infertility... just IF that hasn't been explained YET.

* if you are working with an OB/GYN and are having fertility issues, NO MATTER HOW NICE/INEXPENSIVE/CONVENIENT/FAMILIAR, etc., your OB/GYN might be, bid him or her farewell and start working with an RE immediately. IF is a specialized field and working with an OB/GYN to diagnose and treat infertility is like working with a family physician to diagnose and treat cancer. These boards are filled with women who waited months or years to make the switch, all of whom regret the valuable time lost with their (often beloved) OB/GYN. I have NEVER seen an exception to this rule.

* the standard tests (HSG, FSH, PCT, CBC, endometrial biopsy, SA) barely scratch the surface of IF testing. If those tests come back normal for you, and that's all your doctor wants to test, GET A NEW DOCTOR.

* once you receive a diagnosis, that doesn't mean you've solved the problem. PLENTY of women have multiple challenges going on and their doctors waste time just sitting around and treating the first one they find out about. Know that many IF factors are interrelated, so you quite possibly have more than one and, if so, they'll all need to be treated.

* don't overlook immune issues, especially if you have experienced multiple miscarriages. See the immune issues bulletin board for more information or http://www.repro-med.net

* if you have irregular cycles, no periods, or your OPK doesn't ever show that you ovulate, you may have PCOS. Interestingly, you can have PCOS even if you aren't overweight, don't have issues with insulin, you do ovulate regularly and you have basically regular cycles. The way to diagnos PCOS in these cases is via ultrasound on CD2 (the day after you start your period.) The doctor should look for antral follicles (teeny immature follicles inside your ovaries at this very early point in the cycle). Lots of antral follicles = PCOS. Treatment can include Metformin, usually prescribed for diabetes patients. Check out the PCOS bulletin board for more information.

* if you have painful periods (cramps), changes in your bowel patterns (constipation, diarrhea) related to your cycle, or pain at ovulation, these are indications of endometriosis. You can have endometriosis without having any symptoms. The severity of symptoms does NOT equal the severity of endometriosis.

* endo women have FAR WORSE chances than other IF women when it comes to IUI. However, their chances with IVF are the same as other women. The part about IVF is especially true if they've been tested and treated for immune issues.

* if you have endo or PCOS, it's actually likely that you have them both, and very likely that you have immune issues as well http://repro-med.net/info/cat2.php , http://repro-med.net/tests/pheninfo.php

* there is a 3-6 month window after a surgical lap (tx for endo) in which a woman is more likely to conceive. See the endometriosis bulletin board for more information.

* don't be afraid to switch doctors if the office staff keeps screwing up important things, or if your doctor doesn't return your calls, etc. Time is of the essence, and accurate, prompt treatment is critical. So is your sense of worth, so if they don't treat you with courtesy and respect, find someone who does.

* consider alternative treatment such as acupuncture. You'll find many, many western medicine doctors who believe in combining their medicines, surgeries, and other procedures with acupuncture. Acupuncture can improve FSH and help thicken the uterine lining. Be sure to work with an acupuncturist who specializes in fertlity issues.

* acupuncture takes 3 months of treatment before the body is "in balance". Don't just plan to find an acupuncturist a week before your prodecure. Locating an acupuncturist can be made easier through this site: http://www.acufinder.com/

* it's possible to have miscarriages so early in the pregnancy that they don't even show up on HPT's.

* multiple m/c's, even ones so early on that you don't know about them, actually CAUSE immune problems. Check out http://www.repro-med.net

* normal numbers today aren't normal numbers for our parents' generation, such as sperm count (normal = 100 million thirty years ago; normal = 30 million today). An astute doctor may inform you of problems that DH didn't appear to have, because the RE understands that the "acceptable range" of numbers listed on your lab paperwork isn't so accurate. Your doctor would be right. Think of it like the ever shrinking clothing sizes (I am NOT a size 2, no matter what the tag says!!)

* you have the rest of your life to make money, but a limited amount of time to make babies. Get creative with your financial resources.

* love your DH extra much during this time because IF takes an emotional toll, is hard on the pocketbook, and kills some marriages!! Remember your priorities and that there is more than one way to be a parent.

* a common cause of miscarriage is blood clots in the teeny, tiny veins of the uterus, or even in the umbilical cord. This can be detected with proper testing of inherited thrombophilias, including a test called Leiden Factor V, Protein C deficiency, and the MTHFR test, and treated with baby aspirin, Folgard (prescription folic acid and other B vitamins) and possibly Lovenox throughout the pregnancy.

* if there isn't at least 12 days between your ovulation and the first day you start spotting for your next cycle, you have luteal phase defect (LPD) and need progesterone.

* progesterone suppositories or injections are far superior to pills.

* if you are prescribed Clomid, YOU SHOULD BE MONITORED VIA U/S. Ultrasound lets your doctor know about:
- number of developing follicles (too many, or none!)
- size of follicles (too small? your doctor needs to know that)
- development of your lining (should be at least 8.0mm and triple-stripe)
- potential cysts from the previous cycle (in which case NO Clomid that month!)

* Clomid's estrogenic properties can thin your lining, causing implantation problems or even m/c. This doesn't happen to everyone. Once it happens to you, there's no more Clomid in your future, and you'll switch to injectables.

* if your one or both of your tubes is blocked, you'll need to have it/them removed before IVF, due to the danger of hydrosalpinx (tube filling with fluid and destroying the growing embryo).

* male factor infertility can be overcome with ICSI and TESI http://www.goivf.com/about_us/breakthroughs-icsi.php4

* a great product for improving sperm quality is Fertility Blend for Men, invented in Stanford's School of Medicine http://www.fertilityblend.com

* excellent guided meditation CD's can be found on http://store1.infopac.net/anji/Sear...ory=Infertility

* normal lubricant (KY, etc) is fine for people without IF issues, but if you have them, you NEED to be using either no lubricant (yikes!) or Pre-seed, which isn't as harsh on your man's little swimmers. http://www.preseed.com/

* the learning curve for IF is steep, steep, steep. Befriend with women on this site. Forgive yourself for your age, your previous mistakes in life, your mixed emotions toward other people's joyous and easy additions to their families. Did I mention LOVE YOUR DH???? If you need a break from ttc, take one. If you prefer to become a parent a different way, fantastic. Life is short and no one can make your choices for you.

* Remember that DH's love to be able to help and solve problems. Feeling helpless is just about the worst thing for the average guy, and feeling helpless about his woman is unbearable. Whine and weep to the board; we're all here for each other. If DH is interested in being involved, give him statistics and data. Let him wrap his mind around the science of it all. I'm generalizing here of course, but from months of reading DH postings, I do believe that's the way to go.

* can you imagine what it would be like if you had to go into some strange and sterile room in a doctor's office and have an orgasm? and then give them a container full of what you managed to secrete during that orgasm for them to see if it was "good enough"? and you had to walk out there with your little jar in front of a lot of medical assistants who probably were of the opposite gender from you? Women always complain that guys barely have to do anything compared to what we go through, and that their tests aren't invasive; heck, they're even pleasant! But remember how totally exposing and embarassing their procedure can feel. How the one thing that's supposed to be most private is judged and tested. How much their "manhood" can be affected by bad results. A realistic attitude would be to avoid getting in that testing situation to begin with. So don't be surprised if your DH behaves in uncharacteristic ways when it comes to SA, and try to understand.

* in terms of negative emotions, the most common emotion I've seen described by women on these boards is "SAD" and the most common emotion described by men is "ANGRY." In terms of positive emotions, women often say "HOPEFUL" and men say "INFORMED." Remember and respect these gender differences. Let yourself be sad; let your DH get all pissed off (at IF, not at you!) Find reason for hope. Help your DH to find information.

* direct your anger where it belongs -- at IF, not at each other. IF is behind everything, no matter what either of you did on a particular day or earlier in life. Kick IF's butt!!! Love each other.

*(added by Rose524 on another board) Take care when deciding who to tell about your infertility. While they may have the best intentions, friends and family can sometimes say things that are less than supportive. The reactions and suggestions you receive will surprise you. Choose who you share your experience with carefully.

Well, I guess that's all I can think of. I hope that's helpful for those just starting out. Good luck and baby dust to you!!!!!!!

Lauren

me 33, DH 35
ttc 1.4 yrs

dx endo 1986

lap #1 7/94 (dx stage III) removed endo from ovary, uterus, bladdar, ureter, abdominal wall, intestines, rectum, appendix (which itself was removed)

normal FSH, HSG, PCT, CBC, endo biopsy, SA

dx LPD 3/05

Clomid/IUI/progesterone 3/05 BFN
Clomid/IUI/progesterone 4/05 BFN

lap #2 5/05 (dx stage I) removed endo from both ovaries, uterus, and freed ovaries from adhesions that had attached them to the abdominal wall

Clomid thinned lining; IUI cancelled 7/05 BFP! gone in 2 days

dx PCOS 8/05 (completely asymptomtic, with no characteristics of PCOS, but 18 antral follicles on CD2!)

dx immune issues 8/05
- 50% DQ Alpha match with low LAD (total surprise! treated with paternal LIT)
- compound heterozygous MTHFR (total surprise! makes sense in terms of family medical history of heart disease, stroke, and Alzheimer's, now that I know about MTHFR. Parents tested, both heterozygous! This test may have saved our lives. treated with baby aspirin and Folgard everyday forever.)
- severely elevated antiphospholipid antibodies (to be expected as an endo patient. treated via baby aspirin and Lovenox injections starting CD6 through six weeks post-delivery, when in cycle.)
- elevated natural killer cell activity (to be expected as an endo/PCOS patient. treated via LIT)

learned via immune testing that I've had multiple early losses (prior to the HPT+ in July.)

currently awaiting post-LIT blood work, then the green light to proceed to IVF!

Good luck everyone

miamomma · 09-06-2005, 03:59 PM

Lauren,
Thank you sooo much for your thoughtful, heartfelt and overwhelmingly informative bit of info. It was well put and succinct!
Good luck to you on your go-ahead!
Take care!
Dana

wantsababy2 · 09-20-2005, 10:39 AM

EXCELLENT POST!!

Bang on with everything.

My experience shows 1 discrepancy though.
With regard to antral follicles, my RE says they do cd2 ultrasound to look for LOW counts (anything less than 5 is bad). He said 15-25 is ideal (best pregnancy rates) - which is where you would fit in with your 18! He also said over 25 is PCOSish, but not a problem, just means you'll respond with more follicles on lower doses of meds than those with "normal" counts. Low counts is what they are more concerned about.

Its confusing how some RE's say "normal" and others think not!

Lauren2005 · 09-20-2005, 11:04 AM

This is very interesting and has me concerned. The doctor who did my CD2 antral scan was suspecting PCOS because of my endo and the way I had responded to Clomid. He was looking for lots of follies to dx PCOS. Because of the 18 antral follicles (which he said was PCOS), I have been placed on Metformin, even though I have no symptoms or characteristics of PCOS other than the antral follies. I would hate to be on a medicine for the wrong reasons. The person who did my testing was the dr that directs my (upcoming) IVF clinic. Are you sure about what you've written?? I'll try to research this point and if you have any links or article clippings, I'd be VERY grateful... Lauren

wantsababy2 · 09-20-2005, 11:39 AM

I've found through a lot of online forums, that different DRs say different things.

My RE does cd2 u/s to look for low counts, he's not worried about the high ones. He says a lot of docs are quick to diagnose PCOS, but that it seems to be more like one of those catch-all diagnoses that they throw out there when they can't think of anything else (rather than just say unexplained). I have slightly elevated LH and have had trouble ttc naturally. Based on that info alone, he says if I went to 5 clinics, 3 of them would probably tell me I have PCOS. He doesn't think so. Who knows.

Anyway, I did a quick google search, there seems to be a lot of info out there about antral follicles, here is a good link:

http://www.advancedfertility.com/antralfollicles.htm

I think this is just this clinic's experience, not a scientific study, but its a good starting point for information.

Good luck!

Jenn · 09-20-2005, 11:40 AM

Quote:

Originally Posted by Lauren2005

This is very interesting and has me concerned. The doctor who did my CD2 antral scan was suspecting PCOS because of my endo and the way I had responded to Clomid. He was looking for lots of follies to dx PCOS. Because of the 18 antral follicles (which he said was PCOS), I have been placed on Metformin, even though I have no symptoms or characteristics of PCOS other than the antral follies. I would hate to be on a medicine for the wrong reasons. The person who did my testing was the dr that directs my (upcoming) IVF clinic. Are you sure about what you've written?? I'll try to research this point and if you have any links or article clippings, I'd be VERY grateful... Lauren

Lauren,
You were diagonsed with PCOS just by looking at your ovaries?
Blood work is needed to determine if you truly do have PCOS. Normal women can even have cysts on their ovaries from time to time. Your dr. should have checked your hormone levels to see what is going on. I would be concerned about taking metformin also if you truly do not think you have PCOS.
Jenn

Lauren2005 · 09-20-2005, 11:51 AM

Thank you both for responding... I'm pretty concerned about this.

I have been an endo patient since my teen years in the 80's (although only ttc since 2004). No one had ever mentioned PCOS to me. I'm thin, ovulate regularly, etc. However, the director of my IVF-clinic-to-be (world-famous, so it's not some little clinic in a dark corner) explained that many endo women are missed in terms of PCOS (and vice-versa) because the symptoms of the one overshadow the symptoms of the other. He noted my response to Clomid (one or two follies) and said that is typical of PCOS women. My fasting insulin has been tested and was normal. However, he said that the first thing he tells his PCOS women to do is to lose weight, because PCOS symptoms disappear that way. So all that remains for the thin PCOS women is the antral follicles. I had 12 in one ovary and 7 in the other. He gave me lots of literature about PCOS although none of them answers the question we've been addressing. Also, he gave me copies of two studies talking about Metformin reducing the chance of m/c even for asymptomatic PCOS women... I have no idea. I'm just spelling out everything he's told me. I'm very, very eager to hear what you ladies have to say about this. Help?

Thank you,
Lauren

Lauren2005 · 09-20-2005, 12:10 PM

Here's one reference, which itself is kind of unclear on the answer to the question...

"In addition, ultrasound may be used to diagnose PCOS. Usually an ultrasound diagnosis of polycystic ovaries is made if there are at least eight to ten cysts that are less than 10mm in size on each ovary. The presence of these cysts mean that a polycystic ovary is often 1.5 to 3 times the size of a healthy ovary. This tissue build up occurs around the egg-producing structures of the ovaries called the follicles. More than 20 percent of women can have polycystic appearing ovaries, but only a small proportion of them have true PCOS. Classic polycystic ovaries do not have cysts in them, but swollen follicles, which have failed to produce a mature egg. This can result the traditional "string of pearls" appearance on ultrasound."

And another...

Ultrasound, transvaginal and/or pelvic/abdominal areused to evaluate enlarged ovaries. With PCOS the ovaries may be 1.5 to 3 times larger than normal, and characteristically have more than 8 follicles per ovary, with each follicle less than 10 mm in diameter. Often the cysts are lined up on the surface the ovaries, forming the appearance of a "pearl necklace." These ultrasound findings are not diagnostic. They are present in more than 90% of women with PCOS but they are also found in up to 25% of women without PCOS.

Me again... there was a list of blood tests, and I did have some of them, but not all. In particular, I didn't have testosterone, which seems to be an important one. I have to say I'm more confused than ever. I know Met is a strong drug, and I want to know as much as possible about this before I call the doctor with this question.

Thank you again for your help.
Lauren

wantsababy2 · 09-20-2005, 12:17 PM

Lauren, please don't worry!

Sorry, I know nothing about endo or metformin. But, it sounds like your RE has done a million-dollar workup with you. He is the one who knows you best. PCOS is not a one-symptom thing. Perhaps, combined with everything else he knows about you, he feels its the right dx. I'm sure he wouldn't steer you wrong. Maybe you misunderstood the reason for the dx of PCOS - in the link I posted, I read something about PCOS ovaries having higher than average density or volume or something. Maybe it had nothing to do with the antral follicles at all?

I know exactly how you feel though - we try to find answers why its not working, we second guess our RE's (hahaha! like we have a right to do that!), and we feel like we have to be our own doctors! And then, just when we're comfortable with what we know, we read something different and its

all over again!

09-06-2005, 12:14 PM	#1 (permalink)
Lauren2005 Registered User Join Date: Apr 2005 Location: California Posts: 2,306	What I've learned so far (same as "Just Starting" and "I Wish" bulletin boards Hi Ladies, I decided to post this on the "Just starting" bulletin board, the "I wish someone had told me" board, and now the "Unexplained" board, because trying to understand the IF world has been like a second career for me. I thought if I could put a post together that explained a lot of the surprises I encountered along the way, and what I learned about from others' experiences, that maybe someone (or lots of someones) could save a lot of time, energy, and heartache. This collection below takes the average IF patient months or years to find out! Here are some key ideas that we IF women have learned along the way: * there is no such thing as unexplained infertility... just IF that hasn't been explained YET. * if you are working with an OB/GYN and are having fertility issues, NO MATTER HOW NICE/INEXPENSIVE/CONVENIENT/FAMILIAR, etc., your OB/GYN might be, bid him or her farewell and start working with an RE immediately. IF is a specialized field and working with an OB/GYN to diagnose and treat infertility is like working with a family physician to diagnose and treat cancer. These boards are filled with women who waited months or years to make the switch, all of whom regret the valuable time lost with their (often beloved) OB/GYN. I have NEVER seen an exception to this rule. * the standard tests (HSG, FSH, PCT, CBC, endometrial biopsy, SA) barely scratch the surface of IF testing. If those tests come back normal for you, and that's all your doctor wants to test, GET A NEW DOCTOR. * once you receive a diagnosis, that doesn't mean you've solved the problem. PLENTY of women have multiple challenges going on and their doctors waste time just sitting around and treating the first one they find out about. Know that many IF factors are interrelated, so you quite possibly have more than one and, if so, they'll all need to be treated. * don't overlook immune issues, especially if you have experienced multiple miscarriages. See the immune issues bulletin board for more information or http://www.repro-med.net * if you have irregular cycles, no periods, or your OPK doesn't ever show that you ovulate, you may have PCOS. Interestingly, you can have PCOS even if you aren't overweight, don't have issues with insulin, you do ovulate regularly and you have basically regular cycles. The way to diagnos PCOS in these cases is via ultrasound on CD2 (the day after you start your period.) The doctor should look for antral follicles (teeny immature follicles inside your ovaries at this very early point in the cycle). Lots of antral follicles = PCOS. Treatment can include Metformin, usually prescribed for diabetes patients. Check out the PCOS bulletin board for more information. * if you have painful periods (cramps), changes in your bowel patterns (constipation, diarrhea) related to your cycle, or pain at ovulation, these are indications of endometriosis. You can have endometriosis without having any symptoms. The severity of symptoms does NOT equal the severity of endometriosis. * endo women have FAR WORSE chances than other IF women when it comes to IUI. However, their chances with IVF are the same as other women. The part about IVF is especially true if they've been tested and treated for immune issues. * if you have endo or PCOS, it's actually likely that you have them both, and very likely that you have immune issues as well http://repro-med.net/info/cat2.php , http://repro-med.net/tests/pheninfo.php * there is a 3-6 month window after a surgical lap (tx for endo) in which a woman is more likely to conceive. See the endometriosis bulletin board for more information. * don't be afraid to switch doctors if the office staff keeps screwing up important things, or if your doctor doesn't return your calls, etc. Time is of the essence, and accurate, prompt treatment is critical. So is your sense of worth, so if they don't treat you with courtesy and respect, find someone who does. * consider alternative treatment such as acupuncture. You'll find many, many western medicine doctors who believe in combining their medicines, surgeries, and other procedures with acupuncture. Acupuncture can improve FSH and help thicken the uterine lining. Be sure to work with an acupuncturist who specializes in fertlity issues. * acupuncture takes 3 months of treatment before the body is "in balance". Don't just plan to find an acupuncturist a week before your prodecure. Locating an acupuncturist can be made easier through this site: http://www.acufinder.com/ * it's possible to have miscarriages so early in the pregnancy that they don't even show up on HPT's. * multiple m/c's, even ones so early on that you don't know about them, actually CAUSE immune problems. Check out http://www.repro-med.net * normal numbers today aren't normal numbers for our parents' generation, such as sperm count (normal = 100 million thirty years ago; normal = 30 million today). An astute doctor may inform you of problems that DH didn't appear to have, because the RE understands that the "acceptable range" of numbers listed on your lab paperwork isn't so accurate. Your doctor would be right. Think of it like the ever shrinking clothing sizes (I am NOT a size 2, no matter what the tag says!!) * you have the rest of your life to make money, but a limited amount of time to make babies. Get creative with your financial resources. * love your DH extra much during this time because IF takes an emotional toll, is hard on the pocketbook, and kills some marriages!! Remember your priorities and that there is more than one way to be a parent. * a common cause of miscarriage is blood clots in the teeny, tiny veins of the uterus, or even in the umbilical cord. This can be detected with proper testing of inherited thrombophilias, including a test called Leiden Factor V, Protein C deficiency, and the MTHFR test, and treated with baby aspirin, Folgard (prescription folic acid and other B vitamins) and possibly Lovenox throughout the pregnancy. * if there isn't at least 12 days between your ovulation and the first day you start spotting for your next cycle, you have luteal phase defect (LPD) and need progesterone. * progesterone suppositories or injections are far superior to pills. * if you are prescribed Clomid, YOU SHOULD BE MONITORED VIA U/S. Ultrasound lets your doctor know about: - number of developing follicles (too many, or none!) - size of follicles (too small? your doctor needs to know that) - development of your lining (should be at least 8.0mm and triple-stripe) - potential cysts from the previous cycle (in which case NO Clomid that month!) * Clomid's estrogenic properties can thin your lining, causing implantation problems or even m/c. This doesn't happen to everyone. Once it happens to you, there's no more Clomid in your future, and you'll switch to injectables. * if your one or both of your tubes is blocked, you'll need to have it/them removed before IVF, due to the danger of hydrosalpinx (tube filling with fluid and destroying the growing embryo). * male factor infertility can be overcome with ICSI and TESI http://www.goivf.com/about_us/breakthroughs-icsi.php4 * a great product for improving sperm quality is Fertility Blend for Men, invented in Stanford's School of Medicine http://www.fertilityblend.com * excellent guided meditation CD's can be found on http://store1.infopac.net/anji/Sear...ory=Infertility * normal lubricant (KY, etc) is fine for people without IF issues, but if you have them, you NEED to be using either no lubricant (yikes!) or Pre-seed, which isn't as harsh on your man's little swimmers. http://www.preseed.com/ * the learning curve for IF is steep, steep, steep. Befriend with women on this site. Forgive yourself for your age, your previous mistakes in life, your mixed emotions toward other people's joyous and easy additions to their families. Did I mention LOVE YOUR DH???? If you need a break from ttc, take one. If you prefer to become a parent a different way, fantastic. Life is short and no one can make your choices for you. * Remember that DH's love to be able to help and solve problems. Feeling helpless is just about the worst thing for the average guy, and feeling helpless about his woman is unbearable. Whine and weep to the board; we're all here for each other. If DH is interested in being involved, give him statistics and data. Let him wrap his mind around the science of it all. I'm generalizing here of course, but from months of reading DH postings, I do believe that's the way to go. * can you imagine what it would be like if you had to go into some strange and sterile room in a doctor's office and have an orgasm? and then give them a container full of what you managed to secrete during that orgasm for them to see if it was "good enough"? and you had to walk out there with your little jar in front of a lot of medical assistants who probably were of the opposite gender from you? Women always complain that guys barely have to do anything compared to what we go through, and that their tests aren't invasive; heck, they're even pleasant! But remember how totally exposing and embarassing their procedure can feel. How the one thing that's supposed to be most private is judged and tested. How much their "manhood" can be affected by bad results. A realistic attitude would be to avoid getting in that testing situation to begin with. So don't be surprised if your DH behaves in uncharacteristic ways when it comes to SA, and try to understand. * in terms of negative emotions, the most common emotion I've seen described by women on these boards is "SAD" and the most common emotion described by men is "ANGRY." In terms of positive emotions, women often say "HOPEFUL" and men say "INFORMED." Remember and respect these gender differences. Let yourself be sad; let your DH get all pissed off (at IF, not at you!) Find reason for hope. Help your DH to find information. * direct your anger where it belongs -- at IF, not at each other. IF is behind everything, no matter what either of you did on a particular day or earlier in life. Kick IF's butt!!! Love each other. *(added by Rose524 on another board) Take care when deciding who to tell about your infertility. While they may have the best intentions, friends and family can sometimes say things that are less than supportive. The reactions and suggestions you receive will surprise you. Choose who you share your experience with carefully. Well, I guess that's all I can think of. I hope that's helpful for those just starting out. Good luck and baby dust to you!!!!!!! Lauren me 33, DH 35 ttc 1.4 yrs dx endo 1986 lap #1 7/94 (dx stage III) removed endo from ovary, uterus, bladdar, ureter, abdominal wall, intestines, rectum, appendix (which itself was removed) normal FSH, HSG, PCT, CBC, endo biopsy, SA dx LPD 3/05 Clomid/IUI/progesterone 3/05 BFN Clomid/IUI/progesterone 4/05 BFN lap #2 5/05 (dx stage I) removed endo from both ovaries, uterus, and freed ovaries from adhesions that had attached them to the abdominal wall Clomid thinned lining; IUI cancelled 7/05 BFP! gone in 2 days dx PCOS 8/05 (completely asymptomtic, with no characteristics of PCOS, but 18 antral follicles on CD2!) dx immune issues 8/05 - 50% DQ Alpha match with low LAD (total surprise! treated with paternal LIT) - compound heterozygous MTHFR (total surprise! makes sense in terms of family medical history of heart disease, stroke, and Alzheimer's, now that I know about MTHFR. Parents tested, both heterozygous! This test may have saved our lives. treated with baby aspirin and Folgard everyday forever.) - severely elevated antiphospholipid antibodies (to be expected as an endo patient. treated via baby aspirin and Lovenox injections starting CD6 through six weeks post-delivery, when in cycle.) - elevated natural killer cell activity (to be expected as an endo/PCOS patient. treated via LIT) learned via immune testing that I've had multiple early losses (prior to the HPT+ in July.) currently awaiting post-LIT blood work, then the green light to proceed to IVF! Good luck everyone

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09-06-2005, 03:59 PM	#2 (permalink)
miamomma 1000-4999 post queen of hearts Join Date: Aug 2005 Location: New Jersey Posts: 1,093	Lauren, Thank you sooo much for your thoughtful, heartfelt and overwhelmingly informative bit of info. It was well put and succinct! Good luck to you on your go-ahead! Take care! Dana

09-20-2005, 10:39 AM	#3 (permalink)
wantsababy2 1000-4999 post queen of hearts Join Date: Aug 2005 Location: Canada Posts: 2,883	EXCELLENT POST!! Bang on with everything. My experience shows 1 discrepancy though. With regard to antral follicles, my RE says they do cd2 ultrasound to look for LOW counts (anything less than 5 is bad). He said 15-25 is ideal (best pregnancy rates) - which is where you would fit in with your 18! He also said over 25 is PCOSish, but not a problem, just means you'll respond with more follicles on lower doses of meds than those with "normal" counts. Low counts is what they are more concerned about. Its confusing how some RE's say "normal" and others think not!

09-20-2005, 11:04 AM	#4 (permalink)
Lauren2005 Registered User Join Date: Apr 2005 Location: California Posts: 2,306	This is very interesting and has me concerned. The doctor who did my CD2 antral scan was suspecting PCOS because of my endo and the way I had responded to Clomid. He was looking for lots of follies to dx PCOS. Because of the 18 antral follicles (which he said was PCOS), I have been placed on Metformin, even though I have no symptoms or characteristics of PCOS other than the antral follies. I would hate to be on a medicine for the wrong reasons. The person who did my testing was the dr that directs my (upcoming) IVF clinic. Are you sure about what you've written?? I'll try to research this point and if you have any links or article clippings, I'd be VERY grateful... Lauren

09-20-2005, 11:39 AM	#5 (permalink)
wantsababy2 1000-4999 post queen of hearts Join Date: Aug 2005 Location: Canada Posts: 2,883	I've found through a lot of online forums, that different DRs say different things. My RE does cd2 u/s to look for low counts, he's not worried about the high ones. He says a lot of docs are quick to diagnose PCOS, but that it seems to be more like one of those catch-all diagnoses that they throw out there when they can't think of anything else (rather than just say unexplained). I have slightly elevated LH and have had trouble ttc naturally. Based on that info alone, he says if I went to 5 clinics, 3 of them would probably tell me I have PCOS. He doesn't think so. Who knows. Anyway, I did a quick google search, there seems to be a lot of info out there about antral follicles, here is a good link: http://www.advancedfertility.com/antralfollicles.htm I think this is just this clinic's experience, not a scientific study, but its a good starting point for information. Good luck!

09-20-2005, 11:51 AM	#7 (permalink)
Lauren2005 Registered User Join Date: Apr 2005 Location: California Posts: 2,306	Thank you both for responding... I'm pretty concerned about this. I have been an endo patient since my teen years in the 80's (although only ttc since 2004). No one had ever mentioned PCOS to me. I'm thin, ovulate regularly, etc. However, the director of my IVF-clinic-to-be (world-famous, so it's not some little clinic in a dark corner) explained that many endo women are missed in terms of PCOS (and vice-versa) because the symptoms of the one overshadow the symptoms of the other. He noted my response to Clomid (one or two follies) and said that is typical of PCOS women. My fasting insulin has been tested and was normal. However, he said that the first thing he tells his PCOS women to do is to lose weight, because PCOS symptoms disappear that way. So all that remains for the thin PCOS women is the antral follicles. I had 12 in one ovary and 7 in the other. He gave me lots of literature about PCOS although none of them answers the question we've been addressing. Also, he gave me copies of two studies talking about Metformin reducing the chance of m/c even for asymptomatic PCOS women... I have no idea. I'm just spelling out everything he's told me. I'm very, very eager to hear what you ladies have to say about this. Help? Thank you, Lauren

09-20-2005, 12:10 PM	#8 (permalink)
Lauren2005 Registered User Join Date: Apr 2005 Location: California Posts: 2,306	Here's one reference, which itself is kind of unclear on the answer to the question... "In addition, ultrasound may be used to diagnose PCOS. Usually an ultrasound diagnosis of polycystic ovaries is made if there are at least eight to ten cysts that are less than 10mm in size on each ovary. The presence of these cysts mean that a polycystic ovary is often 1.5 to 3 times the size of a healthy ovary. This tissue build up occurs around the egg-producing structures of the ovaries called the follicles. More than 20 percent of women can have polycystic appearing ovaries, but only a small proportion of them have true PCOS. Classic polycystic ovaries do not have cysts in them, but swollen follicles, which have failed to produce a mature egg. This can result the traditional "string of pearls" appearance on ultrasound." And another... Ultrasound, transvaginal and/or pelvic/abdominal areused to evaluate enlarged ovaries. With PCOS the ovaries may be 1.5 to 3 times larger than normal, and characteristically have more than 8 follicles per ovary, with each follicle less than 10 mm in diameter. Often the cysts are lined up on the surface the ovaries, forming the appearance of a "pearl necklace." These ultrasound findings are not diagnostic. They are present in more than 90% of women with PCOS but they are also found in up to 25% of women without PCOS. Me again... there was a list of blood tests, and I did have some of them, but not all. In particular, I didn't have testosterone, which seems to be an important one. I have to say I'm more confused than ever. I know Met is a strong drug, and I want to know as much as possible about this before I call the doctor with this question. Thank you again for your help. Lauren

09-20-2005, 12:17 PM	#9 (permalink)
wantsababy2 1000-4999 post queen of hearts Join Date: Aug 2005 Location: Canada Posts: 2,883	Lauren, please don't worry! Sorry, I know nothing about endo or metformin. But, it sounds like your RE has done a million-dollar workup with you. He is the one who knows you best. PCOS is not a one-symptom thing. Perhaps, combined with everything else he knows about you, he feels its the right dx. I'm sure he wouldn't steer you wrong. Maybe you misunderstood the reason for the dx of PCOS - in the link I posted, I read something about PCOS ovaries having higher than average density or volume or something. Maybe it had nothing to do with the antral follicles at all? I know exactly how you feel though - we try to find answers why its not working, we second guess our RE's (hahaha! like we have a right to do that!), and we feel like we have to be our own doctors! And then, just when we're comfortable with what we know, we read something different and its all over again!