Mother/Daughter Shared Awareness Month

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I guess it is kind of bitter sweet to be sharing an awareness month of such crappy diseases with my mom, huh?  March is not only Endometriosis month, but it is also Multiple Myeloma Awareness Month. Both take time to be diagnosed with and neither are curable at this time. My mom, Janet (shown below) and I are both strong women who want to use our experiences and knowledge to help create awareness in order to help others, so I guess it is really only fitting we share the awareness month!  So before March is officially over, please take a moment to read just a little about each.

Multiple Myeloma:  The clearest description of multiple myeloma for me comes from the Multiple Myeloma Research Foundation’s (MMRF) website:  “Multiple myeloma is a hematological (blood) cancer that develops in the plasma cells found in the soft, spongy tissue at the center of your bones, called bone marrow. Plasma cells are a type of white blood cell responsible for producing antibodies (immunoglobulins) which are critical for maintaining the body’s immune system. Through a complex, multi-step process, healthy plasma cells transform into malignant myeloma cells”.  I know you may still be scratching your head, but it’s important to know about this cancer especially because for many patients, like my mom, think they just have some sort of back or hip problem.  An MRI ordered by my mom’s doctor is what gave us answers as to why she was not getting any better with rest and physical therapy.

Endometriosis:  I’m going to try and break down the description of endometriosis myself since that is the disease I have personally lived with and find that when I read about endo on the internet, many women may have a hard time understanding visualizing.  Here’s my try so let me know if it is helpful or not:

  • Your uterus is lined with tissue called endometrium.
  • In a women with endometriosis, that tissue (endometrium) is found outside of the uterus in places such as ovaries, fallopian tubes, bowels and the pelvic floor.
  • This tissue is then considered “abnormal” since it is growing where it shouldn’t be and it starts to grow and causes pain and often times infertility.  Think of this tissue looking like a blister.  As these “blisters” grow, they can press on nerves and/or stick to other organs causing severe pain that interferes with daily life.
  • Most women go to an average of 8-10 different doctors having different procedures done and not getting answers prior to finally being diagnosed by laproscopic surgery.
  • Most women and doctors still do not know about deep excision surgery performed by an endometriosis specialist is a treatment option.

This cancer and this disease suck, but there has been tremendous research being conducted on multiple myeloma and my hope is that through awareness we can do the same for endometriosis.

Note: Endo Mom Strong is an information website about endometriosis.  Endo Mom Strong does not provide medical advice, diagnosis or treatment and this content is not to serve as a substitute for such. Please make sure to always seek the advice a qualified health provider with any questions you may have regarding a medical condition. 

Deep Excision and the New York Endometriosis Center

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I had the privilege recently of being a part of my friend’s first experience at the New York Endometriosis Center in Manhattan where I had my own first time experience and deep excision surgery in 2007.  My friend has been having pelvic pain, experiencing an “endo belly” and a whole host of other symptoms.  She has been to so many different doctors over the past couple of years and she finds out some answers, but they tend to lead to more questions and many tests come back clear.  She is an active and health conscious individual, but this pain has really started to affect her daily life and she really wanted some more definitive answers.  So away we went!

Typically, at the New York Endometriosis Center, Dr. Kanayama first meets with you to discuss your case and answer any questions you may have.  He then typically decides what kind of blood tests to run (blood drawn right in the office) and performs a transvaginal ultra sound.  This is a big deal because most doctors are sending their patients to technicians who perform these ultrasounds and then simply give the doctor a written report.  No images are typically reviewed.  So in my friends case, she had been told that her gyn thought she could possibly have 2 uteruses based on the findings the technician reported, but wouldn’t know for sure unless he performed laparoscopic surgery.  Since Dr. Kanayama performed the ultrasound himself, he was able to view the images in real time and then discuss his findings which appeared to show that my friend’s uterus has shifted toward her left ovary which is pushing downward and therefore is contributing to the pain she is experiencing.  That typically happens when endo is present.   Think of endo as a large blister that grows and as it grows it causes things to shift and/or presses on nerves causing pain.  So now comes choosing what to do next for my dear friend.  Will she try out different birth control pills and play that game dealing with different side effects until she finds the right fit (if that exists)?  Will she try the endo diet and add in some supplements?  Or will she opt to go right into having deep excision surgery?  The choice is up to her as it would be up to me or you.  These are our bodies and our choices – let’s just make sure we stand together and educate each other to help make the best decisions possible.

The average woman will go to an average of 8-10 different doctors having different procedures performed which could all come back clear leaving a women to wonder if she is just making up how much the pain is affecting her life.    Women will then typically undergo a laparoscopic surgery performed by their gyn who tell them that it is just exploratory.  Exploratory surgery is true, but the key here is to ask that gyn if he/she finds endometriosis how they treat.  Most gyns typically will burn (called ablation) the top of the endo leaving the endo still in the root of your tissue but then telling you that it is then controlled from growing larger with hormones replacement therapy (birth control pills, Lupron shots, Vissanne).  This is not what happens with deep excision surgery performed by a specialist.

Deep excision surgery means that the endo (abnormal tissue growth) is excised (removed) until clean tissue is exposed and then the veins are cauterized.  Depending on your stage of endo this type of surgery could be pretty quick and easy or it could be longer and more challenging, but in either case it makes the most sense to at least go to an endo specialist performing this type of surgery for an opinion.

I hope that my friend received some information that helped her to feel more at ease and more confident in her next step.  My hope is to be able to help women become advocates for themselves, understand that the pain they are experiencing is not in their head and eventually help “traditional” gyns to understand the treatment for endo is not ablation surgery.    Eventually we will get closer to more women finding relief, but we need to work together to build awareness.  That is what going back into the New York Endometriosis Center does for me every time – reminds me of why I am now trying to help build awareness and help women fight to find out why they are experiencing pain.  You are not alone.

 

 

Day #6 of Endo Awareness Month

How many years have you been experiencing symptoms of endometriosis?  How many years have you lived since your diagnosis?


For me, I can’t really say how many years I have lived with symptoms because I am not really sure when I started experiencing them, to be honest.  I am 34 now.  I believe that when I was around 15 years old my doctor put me on birth control pills because my period was heavy and my PMS was awful (hello? estrogen dominant hint!), so this just masked any symptoms I would have experienced.  I probably experienced some symptoms here and there even being on the birth control pill, but nothing that I have read about some teenagers going through.  Recently I found out about a woman who was 15 and another who was 17 who had symptoms so bad that their doctors put them on Lupron shots.  Lupron shots put your body into full blow menopause.  I experienced that at age 24 and cannot imagine being 15 going through menopause.  It’s heartbreaking actually.

When I think back I was 23 and feeling pretty good.  I had gone off the birth control pill, had a cool full time job with benefits and was living a fun life.  Then I started having symptoms of what now I know to be endometriosis.  My symptoms got worse each day with this “unexplained” pelvic pain, pain down my hips/legs, blood everywhere during intercourse (no pain, though), heavy periods and awful cramps.

I am not a woman with much patience and someone who wants answers as fast as possible that make sense.  I believe that helped me to get diagnosed faster than other women.  I was in and out of at least 10 different doctors all giving me different opinions and performing different procedures (cystoscopy, MRIs, ultra sounds, CT Scans, more ultra sounds) with everything coming back as though everything was fine.  Unfortunately this is still the norm.  I was never told the pain I was experiencing was all in my head, as many women are still to this day told, but I was told that many women just suffer from unexplained pelvic pain.  This made no sense to me.  Unexplained pelvic pain?  Really?  I just kept pushing forward and with the help of my mother helping me research (back in 2007 the internet was nothing like it is today, but it was enough to find what I needed).  I finally got an appointment with a doctor and was hysterically crying in pain as she checked me.  She said she felt something odd as I am laying there crying and I begged for her to get me surgery to find out what was going on.

Finally in April of 2007, I had laparoscopic surgery.  As I was sitting in a room full of other people who were waiting for surgery (it was like a factory), the surgeon came in and repeated what I had heard so many times before: “many women have and live with unexplained pelvic pain”.  I was wheeled into surgery and it again felt like a factory where no one cared who I was and I was just an object they were going to operate on and be done with.  I remember being wheeled out of surgery with someone screaming in my face my name (to wake me up I guess?) – it was awful.  As I sit here and remember all of this I think I will write about that experience another time.  It is crazier than I let myself remember it apparently.

Anyway – the surgeon went out and told my parents I had endometriosis.  She said they burned off the top of it and I would need to follow up with her in a couple of weeks because the treatment for endometriosis was to put a women on Lupron shots (full blown menopause) for 6 months and to then put her on birth control pills until she wanted to try and get pregnant, get pregnant, have baby and then have a hysterectomy.  NOTE: THIS IS NOT HOW ANYONE SHOULD BE TREATED FOR ENDO IN 2017.  

I had never heard of endometriosis and was so relieved they had found out what was wrong with me that I didn’t think to question the Lupron shots right away.  Although, I did pretty quickly.  I joined forums and started to hear about excision surgery for endometriosis.  At that time only a handful of endometriosis specialists existed in the U.S. but this type of surgery just made sense to me.   I ended up having deep excision surgery in July of 2007 with Dr. Kanayama at  The New York Endometriosis Center  and it was so incredibly different from the moment I spoke to his office to see if he would review my case.   I will review my experience with that team in another post because every woman should be treated with the care and compassion this team provides.

In my opinion (I know I am not a doctor, but I do like to think there is “MD” after my name) deep excision surgery with an endometriosis specialist (that is key here – it has to be with a specialist) is treatment for endometriosis because it actually removes the endometriosis instead of just burning the top off (endo goes deep into your tissue).  After this type of surgery you then must follow with an endo specific diet, lifestyle modifications and follow up appointments.  I am a firm believer that this is the treatment plan women suffering should go through rather than continuing to try different birth control pills and go through different procedures including multiple surgeries.

#endometriosis #endoawareness #chronicillness #invisibleillness #endomomstrong #excisionsurgery #newyorkendometriosiscenter