Friday, September 25, 2009

Confused

A few posts ago an anonymous person left a link for a doctor in New York who specializes in endometriosis. I, having endometriosis, was curious and checked out the website. I read testimonial after testimonial about how wonderful this doctor is and how he made every single one of these women's dreams come true. Whether they were just suffering the pain or suffering both from the pain and the infertility, they only had nice things to say. (Of course no one is going to post bad things about themselves on their own website but whatever...)

So after reading through this website I found that this doctor has a different way of dealing with endometriosis. He does laporoscopic surgery but instead of using a laser he uses tiny scissors to carefully cut out the affected areas and then he repairs what needs to be repaired. According to his site this cuts down on the damage done to the tissues, especially those of the ovaries where our eggs hang out.

I wanted to know more so I sent an email hoping to get more information, and in the mean time I wanted to find out what my doctors think about this specific treatment. Now, let me take you back a bit... We ran a whole slew of tests to see if there was a reason for my past 2 failed pregnancies and all test came back normal. Dr. D then told me that he is sure my problems stems from the endometriosis. Okay, how? Well the endometriosis located close to, or on, my ovaries (he's assuming that is where it is located) and that is affecting the quality of the eggs that my ovaries produce. Making those eggs unable to develop past a certain point. When I asked him about another surgery to zap the endometriosis, he said that it would do more harm than good because the laser damages more tissue, leaving less tissue to produce eggs.
Is he right? Who knows? I trust him because has been a good doctor so far and seems to really care about his patients, about us. Plus, he seems to be genuine when he says that he is confident that we can have a successful delivery. Who wouldn't want to believe that?!

A couple of days ago, after I found out about the miracle doctor in NY, I ran into Dr. S at the hospital and used that opportunity to ask him what he thought of this miracle treatment for endometriosis. He looks confused for a moment then proceeds to tell me that-that is how they used to do surgery for endo before the laser was implemented. Hmmm... Oh and then he adds, that the surgery wouldn't do me any good because my problem is not because of endometriosis but because my ovaries produce low quality eggs (I am assuming he means because of the PCOS). I asked to make sure, told him that Dr. D said it was the endo. He didn't really answer and instead told me that if I wanted him to look into it further he would be more than happy to.

Now I am stumped! So what do I do? I email Dr. D and tell him about the amazing doc in New York that makes every pregnancy dream come true (did I say they got pregnant naturally... yea they didn't have to pay $18,000 for IVF.... don't know how much the surgery costs though..). He wrote back saying that it would not benefit me to have another surgery and IVF is my best route. Oh yea, he also told me to contact his office manager so that we could start the process. Uh Hello?!? Who said anything about starting the process... I wonder if he even knew who was emailing him. After a couple more emails, however, we cleared all that mess up. He was reminded that there is NO WAY we could do IVF right now.

But now I am confused! I can't have a baby because of the endometriosis.... I can't have a baby and it has nothing to do with the endometriosis.... which one is it? Plus, don't you think that if you have endometriosis, and it is causing infertility, miscarriages, pain, and more... wouldn't you want to get rid of it? I don't know if I even have very much of it. I do have pretty painful periods but in between I seem to be fine. Plus, when I had my first surgery back in 2005 I was told I had minimal endo. After almost 5 years I am sure I have more than I did, but we don't know how much. When you have a problem don't you try to fix it? Is it going to cause more problems if we do IVF again?

I have accepted that I have to do IVF to get pregnant. I accepted that after my failed attempts at IUIs. What I can't accept is that one doctor tells me one reason and the other tells me something different. If they don't know, then just tell me that!!

20 comments:

Dao said...

Hello Candi, after reading this post I just wanted to share my experiences with you because I also have stage IV endometriosis that caused my infertility. My understanding is that once you have endo it does permanent damage to whatever it attaches to and that damage cannot be reversed. In my case it damaged my fallopian tubes in which I had to remove one of them and the one that was left was also damaged beyond repair therefore removing the endo would have done no good. I'm not sure if you case is similar in which the damage to your ovaries cannot be reversed but I believe that is the general understanding with endo. I'm so sorry for your struggles and heartache. Please let me know if there is anything I can do to help.

Anonymous said...

Hi Candi,

I am the one that originally posted on your website about the doctor and I first too thought the same thing when I came acroos the website like who would post anything bad about him. But at that point after going through a miscarriage and IVF I figured what do I have to loose. My IVF doctor thought I was crazy and was very skeptical about this doctor. I am trying to make this consise without rambling so don't mind me. From everything that I have read and people I have spoken to the reason why other doctors do not perform this surgery is because endometriosis affects all of your major organs. It is similar to cancer in that it spreads and like a weed. Regular lap with laser only takes off the surface of the endo where as what Dr.K takes out the root. Dr. K can detect endo from an ultra sound which all doctors say is impossible, but Dr. K says you have to have the type of ultrasound machine that he has and have a trained eye to look for it. Other doctors claim to be able to do the lap using the excision method, but Dr.K says you have to get all the endo even the smallest part because like cancer if you miss the smallest part it will multiply and grow. He also says that he would never do a hysterectomy to treat endo because even if you remove the reproductive parts it still can be on the other organs so the endo will spread and you will still be in pain. I just had to go with my gut and know that at this point I had tried everything and I had nothing to loose. He also takes tons of pictures and you can tell from the before and after pics the difference the surgery made. The before pictures the organs looked so unhealthy and after word look read and flesh and just healthy looking. My organs looked like chicken covered with skin and fat and the after pics look like if you took all the skin and fat off. Most doctors won't perform this type of surgery since it affects all your major organs and you have to really get at the root of it to remove it all and one small mistake and you can ruin someones vital organ. So they just go in and zap it off with a laser. However the laser causes scar tissue and endo is scar tissue too it just makes it worse.

Anonymous said...

His average paitent has had 18-25 surgeries before coming to see him. The waiting room is filled with people from all over the world and it is like an open support room and everyone just shares their stores. For years I just knew something was wrong from headaches to pain to imaginable fatigue. I would drive to work yawing after sleeping for 8 hours. My life focused on how much sleep I would get. My IVF doctor told me it was just on the outside of my uterus, but you can tell from the pictures that it was all over every organ, from my bladder, rectum, ect and he said it can even been in the wall of your uterus. The reason why other doctors also do not perform this type of surgery is because they get a kick back from perscribing Lupron. Lupron has the most illegal kickbacks out of any drugs and it even states on their website that it is not a proven treatment for endometeriosis and is not meant to be used for more than one six month period. Yet drs. perscribe it over and over to treat endometriosis and the side effects are horrible and some irreversable. Sabrina his secretary is awesome and will listen to you and help you get coverage from your insurance. I had to really fight to get coverage for my insurance and had to prove that he was the only doctor in a certain amount of miles that was trained to do this type of surgery with the success rates that he has. But almost no IVF/or Gyno doctor is going to convince you to go see him because they are stuck in the rut of treating endo the same old way with laser and lupron because the U.S. is backwards in the way they treat stuff since we are so focused on the money we make off the treatmeants instead of the best option. And most girls that you talk to are skeptical of this doctor because they are being fed the same info from their doctors. Once I met him I just knew he was different. He definatley leaves an impression and seeing all the awards in his office and people who flew from all over the world I just knew that he must offer something other's don't. You have to do what is right for you. He is also knowlegable on PCOS since alot of women have both and I have talked to other people in his office that have it as well. Also, the old way of treating it was through excision, but it was through a laparatomy where you open the whole abdomen. Dr. K said this is the worst way to treat it because it distubs the environment and makes it hard to find microspic bits of endo. There are so many different types of lap and different types of excision surgery using different technigues. I'm sure like every doctor there are people that are happy with him and people that are not, but I had an amazing experiecne with him as well as everyone else I spoke to. It is one of those things I would have never beleived if I didn't go through it myself. I just wish that more people out there knew that there were different types of laps and different types of excision surgery and where presented with these options before making a decision. I wish you the best of luck!

Anonymous said...

Your post is long, so it will take some time to read.

I do NOT recommend Dr Kanayama in NYC. I had surgery with him, and had to go to the CEC in Atlanta. They spent HOURS removing the adhesions. His surgeries tend to be bloody, the CEC uses laser to excise endo. You need to read more about that.

Did you go to Dr Seckin in NYC?

Anonymous said...

18 - 25 surgeries is a lie, in my opinion. He lies about a lot of things. He is too glib, as is his site.

Migraines might be low progesterone, adding it can help with some endo symptoms also.

please look into these sites to learn as much as you can!

endo-resolved.com

johnleemd.com

google progesterone advisory network

endometriosissurgeon.com

centerforendo.com

endoexcision.com

endofound.org

naprotechnology.com

Anonymous said...

Dr K is correct about excision, but who wants to have a 2nd surgery? I recommend the trip to atlanta, it was the place i should have gone first

you can also look up erc.activboard.org/ google it if it doesn't come up

for women who want to conceive, contacting an nfp doc can help, post-op too

they can help you chart your cycles, and test hormones and supplement with progesterone, thyroid meds, etc

omsoul.com

fertilitycare.org

Anonymous said...

dr kanayama is NOT a 'miracle' doctor, there are many women who have had problems, but of course he won't post them

second, his surgeries cost between $ 15,000 and $ 25,000 - yes, insurance does reimburse, and yes they do submit for you - but you must PAY THE FULL AMOUNT up front, and not by credit card

as far as i know, he is the only doctor who does this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

first thing that should make you think twice

UP FRONT, FULL AMOUNT, and by cashiers check

lasers are not the way to go, lasers zap the top and don't get the root - dr kanayama did remove almost all my endo, but i had hours worth of adhesions the CEC had to remove! also, i had trouble walking and had digestive issues post-surgery with him

if i had tried to get pregnant after my surgery with him, i would have been one sick person! i was a mess from the surgery

Anonymous said...

i meant to say, the CEC uses lasers as a tool, almost like the scissors - that's very different...

a lot of doctors do not understand nor try to understand endo! pls don't be rushed by morons, and yes it can affect ivf, which is a true tragedy!

MANY women get pregnant post-lap, excision surgery, but make sure you really research this

i used to 'just' get terribly painful periods, but endo does get worse, so you want to look into this

it was on my colon, my bladder, my uterosacral ligaments, my sciatic nerve, my ovaries, my cul-de-sac-

dr hilgers in nebraska has worked with so many women, you don't have to go to him, just check out this site, the surgery section - i am so sick of doctors who are cluless

naprotechnology.com

you may have had more endo when you had your surgery some years ago, but many doctors don't know all the stages, the locations and the areas - mine did not! she didn't ''see ANY'' - gee, what a waste that was - she thought i might have deep endo (which i did), but she would not have known how to remove it

please do not think ANY doctor is a miracle doctor!!!!!!!! just do research and talk and learn :) the experts know things the idiots i mean general / obgyns do not

oh, in ny, there is also a dr iris orbuch, she's on spring / sullivan street - lots of women like her, she does take insurance, or did

just tell her to be easy during the exam - she likes to find the tender areas!

http://209.85.14.18/filecache/doctor-ratings.jsp?did=32487&print=1

Anonymous said...

also, since you aren't TOO pained by the endo, you might look into diet and progesterone - you need to work with a doctor who knows progesterone, though, because of how you take it trying to conceive

you can google 'TTC prometrium' and 'TTC progesterone'

makingbabies.com - see diet info

endometriosis.org/nutrition.html

see dian s mills book about healing endo, and marilyn shannon's fertility and nutrition 4th edition book on amazon

by the way, i am very happy for any woman who has been helped by dr kanayama, but i have to tell you - i cannot recommend him

i am very very sorry i went to him, and didn't go to the CEC first

Anonymous said...

i just wanted to add this for the pcos diet :)

one thing that a lot of women take are probiotics, fish oil, digestive enzymes, veggies, and other good vitamins like prenatals

Anonymous said...

darn, sorry, it didn't post

http://www.ovarian-cysts-pcos.com/

Anonymous said...

first, you are so pretty :) i love your eyes and hair! second, i am so glad you allowed God to deliver the baby for you, in a sense, but i am so upset that any doctor allows a baby to be 'terminated' - i was so scared that you would, as i read your story, i am so glad you did not

i meant to say this above, dr hilgers and napro / nfp docs do NOT do IVF, yet they help many women have children! you do NOT have to do IVF!!

i get very upset, because you are probably young, right? tooo many docs push women into IVF too soon, you need to work on what might be wrong with you, maybe even more than the endo, and by the way, i hate the pill

there is a whole community of women who want to be moms who are Christian / Catholic (and other) who do not want to spend so much money and time and rough stuff on IVF - please google them if you can, they really do have good info

http://www.womens-health.co.uk/endo6.html

http://allyouwhohope.blogspot.com/

http://hailmaryfullofgrace-mt.blogspot.com/

Anonymous said...

pls don't think you will be waiting until over 40, but if my aunt had thought her first miscarriage, or her second miscarriage would be her last 'chance' - she would have missed the joy of her 5 kids, and her now 10 grandchildren!!! one of her children is a lawyer, another in the military - and by the way, her daughter-in-law has her own handful of kids, but has sadly had two miscarriages of her own :( (at least two) -

a cousin had two miscarriages, but then went on to have three children, even though some were premature...another friend had two miscarriages, and then went on to have three of her own...

i hope that this helps in some way, i know sometimes it is hard to hear others' stories, but i always lap them up, and seek encouragement wherever i can...

these women cried, too, not knowing what God had for them in the future

finally, some women locally marry young, have one or two kids, then divorce and have to raise their kids while the ex is out partying with younger women! they may find someone new, but they have to wait for an annullment, having faith, and then have another child or two in their late 30's or 40's

you and your husband are on a journey, you're fortunate to be together :)

http://www.mothersover40.com/

Anonymous said...

lol, i am so sorry! that comment wasn't meant for this board, but i hope it helps anyone it can help! God bless

Anonymous said...

have you tried acupuncture? it seemed to help me with pain, have to go back

Jen M said...

WOW, lots to process here. Praying for wisdom and peace as you make decisions, Candi. I encourage you to meditate on it and ask the Holy Spirit to show you your next step.

Anonymous said...

To the person that had a bad experience with Dr. K I feel bad for you and that you didn't have a good expereince. I have spoken to women that have said the same from CEC and met women in his office that went to the CEC that had a bad experience. I guess it just depends upon the person and their own experience and every doctor probably has a paitent that wasn't happy with them. I can attest for the 18-25 surguries as I went to many appts during my pregnancy to follow with him and have first hand heard it out of the paitents mouths so I believe it is true. I would always hang out at the office for a while and talk to the paitents because I am so fasinated by everyones experiences. He used to not charge upfront until recently and just trusted people and would bill them, but from what I have heard he got stuck from a lot of patients. I was skeptical about giving him money at first but had a friend who is a doctor research him and everything they had to say was good. He sent me my reimbursement check the second he got it. I guess it is hard to handle the finances when you are dealing with so many people from overseas. But I do agree that there are a couple of good endo doctors out there in the US and you have to find the one that works for you and what they have to offer and say is going to be different than what most IVF/ OBYN and most people with endo because they are all stuck in the same way of treating endo. I really pray that you have success Candi and keep all your options open!

Anonymous said...

I also want to add that I had severe migraines every day almost 5 days out of the week. I went to several nurologists and had all my hormones tests, cat scans, mris and what not everything normal normal normal, periods once a month and after my surgery have had minimal minimal headaches about one a mouth and very very mild. Before my surgery there were times where I seriously considered admitting myself into the hospital, so in that respect I do say the surgery helped them because they went away over night. I am also big on accupunture and natural medicine. whatever works. THe way that it was explained to me is that your immune system is in overdrive trying to fight off the endo which can lead to fatigue, headaches and weakend immune system. I also no that there is no relationship between the amount of endo that you have in relation to the stage of endo, so you can't just judge the stage by how much pain you are in. But if you choose a accuptunurist there are ones out there that just specialize in infertility. apparently there are different pressure point that the standard accuptunurist doesn't know. Also reflexoligy is really good too. There are tons of treatment options just finding the right one.

JenJen said...

How frustrating! I hope you are able to get some straight answers~ dealing with so many docs can make your head spin, I know...

Patty Sampson said...

Hi Candi,

Have you been officially diagnosed with Endo? I was told that the only way to really get a diagnosis is to have exploratory surgery. I too suffer from PCOS and Dr. S is right. The Endo surgery will not help, being that with PCOS we create low quality eggs. And with PCOS painful periods is normal. You may not have Endo at all. And even though any Endo surgery would open things up (assumig they are jumbled) but endo will (as the first person said), do permanent damage. The thing with endo is that the endo tissue is uterine lining attaching to other organs. So every month, when your uterine lining sheds, so do all the adhesions. Ultimately you have internal bleeding. Removal of serious endo is wise, but it WILL always come back unless you have a full hysterectomy. And even then some people have theirs come back anyway.

I recommend treating the PCOS with Metformin and take the break from the IVF that you and Skeet were talking about. I did that (after being told IVF was my only option), and conceived naturally and have a healthy baby boy. But it is all about egg quality. You can find things online about nutrition to help in that area. Good luck!!