Endometriosis and Its Challenges

June 8, 2005 - Wednesday
2:01 PM to 3:01 PM (EST)
Guest Speakers: Isabelle Ryan, MD

Categories
Endometriosis • Infertility • Pregnancy

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Lori_Masi AFA_Patient_Advocate	Welcome All! Please call the AFA Toll Free Support/Referral Line at 888-917-3777 for information, a referral in your area or just some good ol fashioned support. Looking forward to hearing from all of you! Lori Masi – AFA Patient Advocate
Lori_Masi AFA_Patient_Advocate	Welcome Jenna! hi Lisa!
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Lori_Masi AFA_Patient_Advocate	Welcome Amanda!
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Lori_Masi AFA_Patient_Advocate	Welcome All! Please call the AFA Toll Free Support/Referral Line at 888-917-3777 for information, a referral in your area or just some good ol fashioned support. Looking forward to hearing from all of you! Lori Masi – AFA Patient Advocate
Lori_Masi AFA_Patient_Advocate	Welcome Orly and JT!
jt	Glad to be here !!
.Lisa_Rosenthal	Hi everyone... thanks for joining us this evening.
Lori_Masi AFA_Patient_Advocate	Can everyone see my posts?
jt	yes
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Lori_Masi AFA_Patient_Advocate	Welcome Stephen!
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Lori_Masi AFA_Patient_Advocate	Welcome Leslie!
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Lori_Masi AFA_Patient_Advocate	JT I have a feeling that you are the only one that can see me because I have not heard back from anyone else!
.Lisa_Rosenthal	Lori, we can see you...
Lori_Masi AFA_Patient_Advocate	Hi Wannababy - welcome!
Lori_Masi AFA_Patient_Advocate	Lisa Thanks!
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Lori_Masi AFA_Patient_Advocate	Hi Chedd welcome!
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Chedd	Gloow
Chedd	oops
Chedd	Good evening
Lori_Masi AFA_Patient_Advocate	Welcome Hunshine!
Hunshine	Thank You - Hi Everyone
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Lori_Masi AFA_Patient_Advocate	Welcome cynthia!
Lori_Masi AFA_Patient_Advocate	Welcome All! Please call the AFA Toll Free Support/Referral Line at 888-917-3777 for information, a referral in your area or just some good ol fashioned support. Looking forward to hearing from all of you! Lori Masi – AFA Patient Advocate
Hunshine	Is this the endo chat?
.Lisa_Rosenthal	Hi Hunshine, it is, but the physician is having trouble logging on. Thanks for your patience.
Lori_Masi AFA_Patient_Advocate	Don’t forget to please call the AFA Toll Free Support/Referral Line at 888-917-3777 for information, a referral in your area or support. You can also e mail me at LoriattheAFA@aol.com and please don’t forget to post and share with each other on our wonderful message boards. Looking forward to hearing from all of you! Lori Masi – AFA Patient Advocate
Hunshine	Oh okay 1st time here so I wanted to make sure that I wasn't doing something wrong
.Lisa_Rosenthal	Do all of you who have joined us have endometriosis?
Hunshine	I do
Cynthia	How do you know if you have endo or not?
Hunshine	I had surgery and thats how they found it
Chedd	I have painful sex
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jt	How to make sure endo is not an issue before IVF ?
.Lisa_Rosenthal	Hi Nancy, thanks for joining us this evening.
Lori_Masi AFA_Patient_Advocate	Welcome Nancy!
.Lisa_Rosenthal	Hi jt. Most often, there are symptoms, a lapraoscopy will show endo as well.
Hunshine	My Dr said the only way to truely know is laproscopy but I knew way before that for years just didn't have the actual diagnosis
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Lori_Masi AFA_Patient_Advocate	Welcome Gruntled!
Cynthia	Hunshine, what made you suspect?
Hunshine	very very painful periods (and a strong family history)
Hunshine	the Dr's said oh well periods are painful its nothing for 4 yrs
.Lisa_Rosenthal	Ladies and gentlemen, while we are waiting/working with the doctor to join us, please remember to use the person's name to whom you are speaking. That way, we all can understand each other.
Hunshine	ooops sorry Lisa I wasn't using names
Amanda	I don't have painful periods, but sex is awful and it is ruining my marriage
.Lisa_Rosenthal	Hunshine, just makes it easier to know who we are all responding too.
Hunshine	Yes Amanda i have heard of it doing that, but in my case sex wasn't painful
.Lisa_Rosenthal	And Hunshine, it's horrible that you had to go through 4 years of painful periods.
Hunshine	Yes Lisa and i blame part of my infertility on Drs not listening sooner
Amanda	hunshine, who finally listened?
.Lisa_Rosenthal	Ladies and gentlemen, I have to sign off for a second, I signed in with a period before my name and do not have my magic powers, so I'll be right back.
Hunshine	Amanda, I moved to a new city and my ob/gyn said I'm going in to look (the other Dr's didn't want to do surgery) so instead they put me on fertility drugs and gave me a million other tests which of course doesn't show endo until they actually go in and see it with their own eyes
Leslie35	It took me 6 years to get diagnosed as my symptoms were so vague. It's not always easy to diagnose. My friend who h as horrible periods, does not have it.
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Hunshine	Leslie, even people with endo have a lot of varying degrees of symptoms, you are right, it takes different symptoms with different people. I myself even have different symptoms month to month
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Jenn	hi everyone
Jenn
Hunshine	Hi Jenn
Lori_Masi AFA_Patient_Advocate	Hi Jenn welcome!
Jenn	Hi Hunshine, Hi Lori
Hunshine	Is everyone here TTC?
Jenn	<--been ttc for 3 yrs
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Hunshine	TTC 6 yrs here
Lori_Masi AFA_Patient_Advocate	Everyone we are having some technical problems
Jenn	are you ttc your 1st Hunshine?
Lori_Masi AFA_Patient_Advocate	Welcome Dr Ryan!
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Hunshine	Yes Jenn and times a tickin lol how about you?
Lori_Masi AFA_Patient_Advocate	Everyone Dr Ryan has been able to log on - please post your questions to her
Jenn	yup same here.
Hunshine	Hi Dr Ryan
Lisa_Rosenthal	Welcome Dr. Ryan, thanks for joining us this evening!
Dr._Isabelle_Ryan	Hello Lisa, I'm happy to finally be here!!
Jenn	Is the topic still endo. and challenges?
Lisa_Rosenthal	Endometriosis is a condition where cells that form the lining of the uterine cavity (endometrial cells) grow outside of the uterus, most commonly overlying pelvic organs. This condition is associated with infertility, though it has not been proven that endometriosis causes infertility. Approximately 15-20% of women in the general population have endometriosis. Of women with the diagnosis of infertility, 25-35% are diagnosed with endometriosis. A grading system for severity of disease has been devised. Minimal disease implies a few pelvic endometriosis implants but normal anatomical relationship of the tubes and ovaries, while severe disease can include extensive adhesions surrounding the
Lisa_Rosenthal	The above is from Dr. Ryan, I will also post it in smaller portions. Sorry for the overload.
Lisa_Rosenthal	Please feel free to post questions for Dr. Ryan and cut and paste your answers, as the room can get quite busy.
jt	Dr. Ryan, under what circumstances should possibility of endo be verified before IVF ?
Lisa_Rosenthal	Hi Jenn, yes, but Dr. Ryan can answer general infertility questions as well.
Amanda	Dr. Ryan, are there non surgical ways to diagnose endo?
Dr._Isabelle_Ryan	jt- If you are commited to proceeding with IVF, you may not need to have a laparoscopy prior; if you are having pelvic pain, then you may benefit from the laparoscopy for pain control
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Jenn	What are basic symptoms that would give you a heads up that you might have endo? (prior to being diagnosed)
Lisa_Rosenthal	Most studies confirm that patients with even minimal to mild endometriosis have much lower pregnancy rates than women without this diagnosis. A hypothetical 32 year old patient with mild endometriosis would have about a 5% monthly pregnancy chance, compared to a 25% chance for her 32 year old friend with no infertility. DR RYANS COMMENTS
Hunshine	Dr. Ryan, how would you advise a patient 6yrs TTC, dx endo - lap 2 yrs ago to remove endo with an overall dx of "unexplained infertility"
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Dr._Isabelle_Ryan	Amanda- Patients who have endometriosis cysts of the ovaries called endometriomas have a sonographic characteristic which can indicate endometriosis-- but the only way to prove one has the disease is via surgery (typically a laparoscopy)
Kath44	Am I too late?
Lisa_Rosenthal	Hi Kath, definitely not.
Lisa_Rosenthal	Please feel free to post questions for Dr. Isabelle Ryan.
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Dr._Isabelle_Ryan	Jenn- most patients do not have symptoms at all. Synmptoms that may be tip offs are painful menses, painful intercourse, sometimes more generalized pelvic pain
Lori_Masi AFA_Patient_Advocate	Welcome llb!
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Dr._Isabelle_Ryan	Hunshine- If you have a diagnosis of endometriosis proven by surgery, then you are not a patient with unexplained endometriosis. The endometriosis is your fertility diagnosis. Once you have endometriosis, it is typically a lifelong diagnosis. We remove what we can with each surgery, but there is always microscopic disease which is left behind.
Kath44	How does age affect endo? Does maternal age affect things like it does our eggs?
Jenn	Could extremely heavy menses, with a lot of clots (sorry if tmi) be a possible symptom?
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local	[332] Endometriosis and Its Challenges~ Dr. Isabelle Ryan (Pacific Fertility Center in CA)
Dr._Isabelle_Ryan	Kath44- Age does not seem to affect endometriosis. Maternal age does not impact either.
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Dr._Isabelle_Ryan	Jenn- If you have endometriosis which is significantly affecting your uterus, then this can lead to heavy menses. Heavy menses is usually more associated with fibroids, or polyps (other types of uterine abnormalities)
Hunshine	Dr. Ryan - I am 32 yrs old and the Dr's said I should have as good of chance as anyone of conceiving after I had the lap but the endo is back with all its fury. what can someone like me do now? Do you usually do multiple laps on one person or just ease the symptoms with medication etc (My Dr mentioned hysterectomy but that's a non option as I want to a child very badly)
Chedd	I have really painful sex, that is my only symptom, do I have to have surgery to find out if it's endo?
Lisa_Rosenthal	Please remember to cut and paste your questions. Dr. Ryan is doing a wonderful job answering questions, but they do scroll away.
Lisa_Rosenthal	Treatment options depend on several factors such as the stage of the disease process (minimal vs. severe disease), the presence of scar tissue around pelvic organs, the age and FSH/Estradiol levels (indication of egg quality) of the patient. These options would include using fertility pills (Clomiphene Citrate), fertility shots (gonadotropins), or pursuing in vitro fertilization (IVF) treatment. Your physician can provide a recommendation as to which of these would be the best initial step, after a full evaluation has been conducted... DR RYANS COMMENTS
Dr._Isabelle_Ryan	Hunshine- Once you have a diagnosis of endometriosis, even after surgical intervention, your chances of conception are still LESS than other women 32yo w/o endometriosis. If you want to get pregnant, I would suggest proceeding with a proactive approach, and it may be that you need IVF. Some Endo specialists feel that all Endo pts with Stage 3-4 disease should proceed straight to IVF
Lori_Masi AFA_Patient_Advocate	Don’t forget to please call the AFA Toll Free Support/Referral Line at 888-917-3777 for information, a referral in your area or support. You can also e mail me at LoriattheAFA@aol.com and please don’t forget to post and share with each other on our wonderful message boards. Looking forward to hearing from all of you! Lori Masi – AFA Patient Advocate
Dr._Isabelle_Ryan	Chedd- You could have an ultrasound to see if you have endometriosis ovarian cysts (endometriomas).. if not, then the only way to diagnose endo is via a laparoscopy
Kath44	How does tissue grow where it doesn't belong? Are there any natural/alternative ways of preventing endo from growing back?
Dr._Isabelle_Ryan	Kath44- Endo is like a benign tumor... it can grow where it is not supposed to just like other benign growths. At this time, we do not have any well done studies to indicate whether alternative forms of intervention can prevent endo from growing back.
Hunshine	Dr. Ryan - is endo hereditary as we seem to have a strong family history of it
Lisa_Rosenthal	I hope that you are all aware of the physician moderated message boards that The American Fertility Association hosts. We are lucky enough to have physicians that moderate the board daily. Please consider posting there with any follow up questions.
Leslie35	Dr. Ryan, how long a wait to get into see you and do you specialize in endo?
Dr._Isabelle_Ryan	Hunshine- It is not hereditary in the same way gentic diseases such as cystic fibrosis is (well defined gene that is passed on to offspring).. but there can definately be familial tendencies for endo. There are some families where many of the females have endo--- therefore a strong predisposition. An actual gene for endo has not been identified.
Cynthia	I'm seeing my gynecologist next week, is it possible for them to diagnose it or should I see a specialist?
Lisa_Rosenthal	Cynthia, if you are trying to conceive, have had trouble conceiving, then you should be seeing a Reproductive Endocrinologist. The term fertility specialist has no meaning whatsoever. A Reproductive Endocrinologist is someone who has special training and has passed boards....
Dr._Isabelle_Ryan	Cynthia- diagnosis is really only possible by laparaoscopy or other surgical intervention. Your general gynecologist can perform that surgery for you... if needed. We usually only do it if the patient has debilitating pelvic pain not relieved with conventional medications; or if there are significant ovarian cysts
Hunshine	Dr. Ryan - how would you say weight effects fertility?
Dr._Isabelle_Ryan	Hunshine- If you are quite overweight, then this may make your cycles irregular, and you might not ovulate on a regular basis. Or some patients who are overweight have a condition called PCOS (polycystic ovary syndrome). If you still have regular menses, it is unlikely that weight plays a part in your infertility
Lisa_Rosenthal	Ladies and Gentlemen, I am honored to get such wonderful speakers by promising them that they will be off be a specific time. I'm sorry that we got started late, but that happens occasionally. We have about 3-4 minutes left with Dr. Ryan.
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Hunshine	Thank you for your answers Dr Ryan
Jenn	Yes Thank you Dr Ryan
Dr._Isabelle_Ryan	Hunshine- you are welcome.
wannababy	Dr. Ryan, can you please post your phone number? I live in Santa Rosa, and don't mind traveling a bit.
Dr._Isabelle_Ryan	Jenn- you are welcome
Dr._Isabelle_Ryan	Pacific Fertility Center 1-888-834-3095 www.infertilitydoctor.com
Jenna	How long a wait to get in to see you?????
Lisa_Rosenthal	Dr. Ryan, you deserve kudos for working so hard to get into the room this evening. We appreciate your perseverence, your knowledge and your help!
jt	Dr. Ryan, thank you for the answer !!
Lisa_Rosenthal	I hope that you will join us again sometime....
Dr._Isabelle_Ryan	Jenn- propably only a week or two-- please call the toll free number, and my staff can help you out.
local	[332] Endometriosis and Its Challenges~ Dr. Isabelle Ryan (Pacific Fertility Center in CA)
Jenna	Thanks, good night
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Dr._Isabelle_Ryan	Lisa- Thank you so much for having me on your program!!
Stephen	Good to listen in, I learned something about my wife. thanks.
Lori_Masi AFA_Patient_Advocate	Don’t forget to please call the AFA Toll Free Support/Referral Line at 888-917-3777 for information, a referral in your area or support. You can also e mail me at LoriattheAFA@aol.com and please don’t forget to post and share with each other on our wonderful message boards. Looking forward to hearing from all of you! Lori Masi – AFA Patient Advocate
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Lisa_Rosenthal	Thanks for joining us Stephen, see you next week.
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Lori_Masi AFA_Patient_Advocate	Good night ALL and thank you Dr Ryan for joining us!
Lisa_Rosenthal	Hi misti, thanks for joining us this evening.
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Endometriosis and Its Challenges

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