3.22.2013

Endometriosis Conference

This is for my fellow endometrians, and those that are interested just because! PS...10% of women have it, but most don't know they have it. So educating yourself on this can't hurt.

I recently attended a worldwide endometriosis conference that was held in NYC. How lucky I am to be here! It was fantastic. They had a whole day dedicated to educating patients about endometriosis, how to cope with it, and options for getting pregnant when the time arises. There were so many things I had no clue were even an option!


We feel so blessed that there is help and support out there. How lucky that we have doctors that care and are educating themselves on these things that are still so unknown and incurable. We met so many great doctors that specialize in all aspects of endometriosis. We learned about fertility, sex, the bowels, psychological effects, pain management, and more. I never thought I could be so excited to learn about intestines. :)

Here are the amazing doctors that took it upon themselves to make endometriosis a priority in their research and careers.



These pictures were taken during the Q&A sessions that really opened our eyes and helped us to realize that we are not alone. So many others are hurt and affected by this and feel just as in the dark as we do. If you feel this way too, you are not alone! It's also important to remember that endometriosis has an effect not only on you, but your family too. Especially your spouse.

And just to clarify, I am not a doctor. Obviously. So if I use incorrect terminology, please excuse me. I'm going to share the best I remember and the best to my knowledge. I'm also here if you just need a hug or support. :)

I'll briefly go through the different topics one by one and you can pick and choose if some topics are more interesting or applicable than others. I hope I can share some piece of information that might be enlightening or answer some questions you may have for yourself or someone you know. I haven't included everything we learned, because it was so much info and might be a little much for just wanting basic knowledge on the subject. Feel free to email me at amandawalker90@gmail.com with any questions you have and I can share with you what I learned or help you research any questions you might have!

DIAGNOSING ENDOMETRIOSIS
  • Requires surgical biopsy
  • Very difficult to diagnose
  • Misdiagnosis
    • Often mistaken for other disorders or diseases.
      • appendicitis
      • ovarian cysts
      • irritable bowel syndrome
      • colon cancer
      • ectopic pregnancy
      • ovarian cancer
      • sexually transmitted diseases
      • etc
  • Symptoms
    • painful periods
    • chronic pelvic pain
    • infertility
    • painful sex
    • painful bowel movements
    • urinary pain
    • bloating
    • nausea
    • constipation
SURGERY
  • CONSERVATIVE SURGERY (surgery without removing any organs of the body)
    • Laparoscopy
      • laser (burning), scraping, or excision
        • I had mine scraped. Most people I've met had the same (or laser). Turns out this is a very temporary pain relief, but what doctors often resort to because it's the safest option for them. It shockingly doesn't fix anything though! Your endometriosis pain is almost guaranteed to come back within 6 months to two years. I had my surgery in January of 2012, and my pain returned in August of 2012. 
        • Excision surgery is the only thing to truly remove your spots of endometriosis and to really improve your chances of getting pregnant and getting rid of pain. Many studies have shown patients becoming pregnant within two months post excision surgery.
        • It's extremely easy to miss spots in any of these surgeries. Find a doctor that cares and is going to do a thorough job!
  • Hysterectomy
    • Not recommended as first option. Only done in severe cases.

IBS OR ENDOMETRIOSIS OF THE BOWELS?
  • Endometriosis is often confused with Irritable Bowel Syndrome
  • 15-20% of patients with endometriosis have it on the bowel.
  • Symptoms of IBS
    • Abdominal pain or cramping
    • Gas
    • Bloating
    • Headaches
    • Fatigue
    • Backache
    • Pain during sex
    • Reduced sexual desire
    • Urinary problems
    • Symptoms often occur after a meal, when stressed, or during menstruation
  • Symptoms of Endometriosis on the bowel
    • Painful bowel movements
    • Constipation
    • Diarrhea
    • Bloating
    • Gas
    • Alternation constipation and diarrhea
    • Intestinal cramping
    • Nausea and/or vomiting
    • Abdominal pain
    • Rectal pain
    • Rectal bleeding
  • Something important to remember is that some may only experience one or even none of these symptoms, whereas others may experience all of them.
  • 80% will have improvement in their bowel symptoms after excision of their endo
  • Those who think they may have endometriosis on the intestines... Great news! We discovered an amazing doctor that specializes and deals with specifically this! I'm so excited. 
    • Ken Sinervo, MD, MSc
    • KenSinervo@comcast.net
    • www.CenterForEndo.com
FERTILITY OPTIONS
  • Egg Freezing
    • This is still fairly new knowledge, but they have found pretty great results.
    • This is a good option for those without a partner and are unable to freeze an embryo.
    • Was originally used for cancer patients before starting chemo treatments.
  • Embryo Freezing
    • This is a very personal thing for each individual, but they discussed this as an option as well as egg freezing. Studies show higher success rates with embryo freezing than egg freezing. Not all frozen embryos are usually used, so some may feel this is wrong. 
  • IVF
    • The same thing is done for all three of these, except with IVF, they implant the embryo without freezing it. This is for people looking to get pregnant now. 
  • These are all very expensive, but options that have very high success rates. How lucky we are that doctors have this knowledge to help so many start families!
ETC NOTES
  • SUPPORT
    • This might seem silly, but supporting your daughters, sisters, and friends in figuring out whats wrong and how to get help is very important. In going to this conference, I think we both felt like we'd walk out with a sense of relief. I wouldn't say we left feeling relieved, but definitely grateful for all that we learned and grateful to have a better understanding of what is going on with my body. About an hour into the conference I felt like crying. I blamed it on hormones, or thought maybe I was just feeling a little tired. When the first Q&A began, the first girl got up and cried through talking. She was followed by more tears. And the next Q&A continued with some more tears. Hearing that you have a disease with no cure and no way to control it is in no way comforting. But it is comforting knowing there is help. They made it a point to talk to the mothers of girls with painful periods. They emphasized how important it is to listen to your daughters. Don't tell them "we all have cramps" or "it's all part of being a girl". They say that so often girls are told this and go their whole lives not knowing, when so long ago they could have been helped.
  • GETTING TO A DIAGNOSIS
    • Mention endometriosis to your doctors if any of these symptoms sound familiar to you. It is so easily overlooked. The earlier it is caught, the better! Be persistent!
  • PAINFUL SEX
    • I didn't think I had enough notes about this to make it it's own thing, even though this was a big part of the conference, but this can be a very sensitive and emotional thing to deal with. They made sure to emphasize that SEX IS NOT WHAT IT'S CRACKED UP TO BE. Media destroys people expectations of sex. Talk with your spouse. If you feel better physically during certain times of the month, schedule sex during those times. Do what is best for YOU. Learn about painful sex and endometriosis WITH your spouse so he can understand where you are coming from.
  • PREGNANCY RISKS
    • I didn't want to make this a big deal, cause I don't like to dwell on this. Obviously it scares me, and I don't think it should be worried about until the time arises. But it is important to be aware of. So here is a list of what comes at a higher risk in those with endometriosis.
      • Preterm delivery
      • Pre Eclampia
      • Caesarean Section
      • Antepartum bleeding/ placental complications
      • Growth Restriction
      • Stillbirth


Phew! I made it. I hope you made it too. We are so grateful we had the opportunity to go to this conference. We learned so much. I hope I was able to enlighten or help somebody in any way at all. Again, if you have any questions feel free to email me and I'd be happy to help how I can! I have lots of contacts for doctors and specialists from the conference if you're interested as well.

xoxo,
Amanda


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