Preparing for your surgery

1 Week Prior:

Obviously not all surgeons are the same and they will all have different preparations they will suggest.  I do not have a medical degree so follow your doctor’s suggestions, but this is what I did 1 week prior to my surgery:

  • Do not take any aspirin or ibuprofen. Tylenol is OK
  • Stop all supplements and do not eat or drink anything with ginger or garlic
  • Drink lots of water every day: 80-100 ounces
  • Get some comfortable clothes.  At least 2 pairs of comfortable pants that are not tight around your waist and underwear that are not too tight either. Personally, I made sure to have 3 loose fitting pants and underwear as well as looser tops. Your stomach will be larger due to the gas they put into your stomach in order to do this surgery.

Questions I had for my doctor were:

  • What if on an antibiotic? Stop or OK to keep taking? They said it was OK to keep taking
  • Can you still have your surgery if you get your period or must you postpone?  Yes you can! No worries there.

What to do the night before

Pack up

Shave (You don’t have to, but I definitely did)

Drink a TON of water to help with low bp if you have it and for hydration for your veins

Nothing to eat or drink after midnight

What to bring into the Hospital

Drivers License

Insurance card

Travel sized tissues

Notepad and pen for whoever is with you to write down what your dr says and for you to write down any questions

What to bring to the hospital but leave in the car:

I would just leave these items in the car you will be riding home in or bring them in with you if you will be leaving in a different car so that you have them accessible for the car ride home:

  • Slip On Shoes.  Just wear these to the hospital to make your life easier because it will not be so easy to bend over or pick up your legs to your stomach.
  • Throw up bag – This is for the car ride home in case you vomit.  Sometimes this happens to people with anesthesia.  
  • Advil – just in case anything were to happen like traffic and you couldn’t get your pain pills.  This happened to me 10 years ago – awful. 
  • Water bottle – nice and big water bottle for your car ride home. I was incredibly thirsty and so relieved I had thought of this beforehand
  • Tissues – it’s a very emotional day
  • Plastic bag for dirty tissues 😉
  • Pillow – you can leave this in your car in case the hospital doesn’t give you one of their own.  This is to have something soft for your stomach so the seat belt is not sitting directly on your incisions.
  • Heavy duty maxi pads. You will be bleeding afterward and the hospital will give you a pad but just in case

What to do afterward:

Begin a stool softener right away when you get home. Your body will be going though a lot of adjustments and add in pain pills to that and you could be dealing with constipation. Don’t add that to the list of things you have to deal with.

Rest when you get home but as soon as you start feeling “with it” a little, try and do some walking around your house. The gas they put into your stomach will cause you pain all the way up into your shoulders and walking and pooping helps to get rid of that. It can be really painful but please remember it will go away. A heating pad on the shoulders will help a lot.

Drink as much water as you can and make sure you are resting.

Excision surgery with an endo specialist is normally a much easier recovering than with a non- specialist but it is still uncomfortable. I personally didn’t take the pain pills because I know it contributes to the gas pain and causes constipation. I just took Advil around the clock but you do not need to do that.

Please contact me with any questions!!

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Accepting the need for another surgery

Originally written October 4, 2017:

Mentally I was not ready to accept that I needed another surgery for my endometriosis.  I had my last deep excision surgery in 2007 which is just over 10 years ago, but I just kept hoping that the pain I was feeling was something else.  I had colonoscopies, went to Urologists, went to my regular OBGGYN and tried all different therapies – conventional and alternative.  It wasn’t until my Endometriosis Specialist told me that I needed to face my fears that I forced myself to look in the mirror and take a deep breath and decide to move forward with surgery.

I was going to wait until January or February because that is when it would be slower at my job and so I tried going on the birth control pill as a “band aid” until then.  For whatever reason, the pill created more problems but this time having to do with my bladder.  I had symptoms of a UTI but all of the cultures were negative.  I went to 2 different Urologists and they both felt it was hormonal and had to do with the pill and suggested it was endometriosis on my bladder.  I shared this with my specialist who told me that he sees many women with this kind of situation.  I didn’t know what to do because the symptoms were really interfering with my life.  Everywhere I went I had to make sure I knew right where the bathroom was, when I was driving I would get anxious if I got stuck in traffic because I could only go about 30 minutes and then would need to urinate again.

Unfortunately my mother has been fighting a cancer called Multiple Myeloma for many years and treatments have not been doing their job, so I decided I would ask one of my best girlfriends if she could take me to get my surgery in November rather than waiting until January/February. We worked it out around her schedule and mine with me thinking that at the time we were going to schedule it, my job would be slow enough where it would be OK for me to be out a week.  She was going to be able to help me recover and help my husband with the kids if he needed the help.

My mom underwent an intense chemotherapy treatment which did not work enough to give her much downtown and so she is going to go through a trial using immunotherapy (follow Team Janet Strong on FB to learn more about her journey if you’re interested).  If all were to go according to plan she would be admitted into the hospital in early November which meant that I had to decide whether or not I was going to cancel my surgery and wait until after my mom went through this trial, or schedule it sooner if there was a date available.

I called my Endometriosis Specialist, Dr. Masahide Kanayama at New York Endometriosis Center and I spoke to the amazing Medical Manager, Sabrina.  I let them know my situation and she let me know they had 2 dates in October available.  October 5 and October 12.  I was told this 6 days prior to October 5 and I wasn’t sure how I was going to make that work.  I would need to make sure it was OK with work, figure out childcare and figure out who was going to take me and take care of me for a couple of days afterward.

I texted my cousin and asked her if she could take me to the surgery in October. She immediately said yes.  She has always been there for me when I have needed her help.  I let my brother and sister-in-law know we would need their help with my parents should they need help – they said “we’re on it and will be wherever we need to be to help”.  And then there was my job.  I am beyond lucky – BEYOND – to be working for an amazing company where everyone let me know they were there to help in any way I needed.

I’m really lucky to have a family that has been through such ups and downs, but yet always comes together in times of need. My Aunt and cousin in particular were very blunt with me which is what I needed and said “you need this so that you can be out of pain and to be there for your mother.  Do it”. If they hadn’t just come out and said it like that I probably would have waited.

My life has been extremely challenging for quite a lot of years with a lot of unexpected “downs”, but all of those “downs” allow me to truly appreciate what is in my life today.  I don’t know if my family will ever truly know how thankful I am for their support.  I am a better person than I was 10 years ago with so much love and support in my life – I got this and will make sure to document how the surgery goes. I decided to go with December 12. At least it gave me a week to mentally prepare!

Endometriosis – Underdiagnosed and Highly Misunderstood – Still in 2017

You’ve probably heard me say this before – I cannot believe that endometriosis is still one of the most underdiagnosed women’s diseases and still so misunderstood 10 years after I first learned I had endometriosis in 2007.  It’s shocking, but because of this many women are still finding themselves suffering alone behind their smiles thinking that the pain they are feeling is just part of being a woman.

This cannot continue to be the norm.

As women we need to become advocates for ourselves which means questioning everything and everyone until we understand and things make sense.  Just because someone is a doctor or even a specialist, doesn’t mean they are necessisarily the best or know as much as you believe they should.  Question everything.  I believe that is what got me diagnosed faster than other women (on average it can taken 8-10 years for a diagnosis) – “unexplained pelvic pain” did not make sense to me and I would not accept that as an answer.  We must take charge of our own health care and we must help each other to do that by supporting each other.  Pain is not normal.  

I had suffered from painful periods when I was younger, but doctors were so quick to put women on a pill I never questioned it nor had I ever heard of endometriosis.  Doctors are still quick to prescribe birth control pills for women to help them with their period regulation and/or pain.  Now, I am obviously not a doctor so I don’t know what a gyn learns in school but my guess is that they learn about a TON of different diseases and really only touch on endometriosis.  They aren’t specializing in one disease like an endometriosis specialist, but wouldn’t it be helpful if they knew more that could help women reach a diagnosis faster?

The birth control, for me, was really just a band-aid now that I look back on things because when I got off the birth control pill the pain started.  If the pain had only been during my period I would have probably just thought I had to “deal” with it because that’s what we are taught right?  It’s just part of being a woman and we have to go through pain once a month.  Take some Advil and/or Midol and use a heating pad.  You might have to miss work or school, but it’s only a day or two and then you can go back to normal.  How does this make any sense to live?  Every month of missing a day or two of school or work adds up really quickly and especially for someone who may be working without any sick days.  This is not a normal way to live and we’ve got to start teaching girls and women this is not normal.  I don’t want my daughter to have to go through painful periods or anything that I had to go through if I can help it.

Please don’t get me wrong – I know that birth control pills have helped many women to feel better, but I also know that birth control pills have caused a lot of women a lot of unwanted side effects leaving them to feel absolutely “crazy” and eventually they get off of them thinking they just have to live in pain.  We cannot accept this as normal.

Learn as much as you can, join as many FB groups around endometriosis or “Follow” as many on Instagram and QUESTION, QUESTION, QUESTION.  

When in NYC, why not stop in at your endo specialist?

Unfortunately I’m not in NYC for fun, but rather to be there for my mother while she starts to undergo a new chemo therapy at Memorial Sloan Kettering Cancer Center. She just started the cocktail of drugs last night and has been doing well minus the nausea. Since my father is with me and since she is doing well, I have a call to my Endometriosis Specialist, Dr. Kanayama who is pretty close to where my mom is being treated.

If you remember from my last post I had stopped the birth control pill because I was having awful UTI like symptoms. I’ve seen 2 Urologists now who both think that what I’m feeling has to do with hormones and that endo could be on my bladder since all of the urine cultures show no signs of bacteria (good times). I’m still having those UTI-like symptoms which feel like something is pressing on my bladder all of the time and thus feeling the urge to urinate all the time (not fun). I’m also now having the endo pain again in addition to this since stopping the pill. That means a constant ache and twisting sensation in my left lower pelvic area and having a really hard time moving bowels (again – not fun), so I thought it was probably a good idea to be seen.

Dr. Kanayama performed a transvaginal ultrasound as he normally does and shows me where there could be signs of endometriosis. He doesn’t know for sure until he goes in through laparoscopy, but we can see how my uterus has shifted about 20% toward my left ovary and there appeared to be fluid around my organs which is also indicative of endo usually. Endometriosis does a lot of damage I had forgotten about when I was first diagnosed 10 years ago, but one of the things is that it starts to grow and organs start to stick to each other causing issues in addition to endometriosis releasing toxins in the body. As I think about all of this I still can’t believe how complicated a disease this is and how it is not that well known.

For those that have never had a transvaginal ultrasound, here’s what you have to look forward to:

It’s really not painful unless you have something like endometriosis going on inside. I don’t feel pain anymore but I remember prior to knowing what was wrong with me the pain I felt – it was awful. Even just an ultrasound on my stomach hurt. I really appreciate that Dr. Kanayama does the ultrasound himself instead of a technician like it is normally done in other offices and then the doctor just reads a report. I hope that if you’re seeking help, your doctor performs these him/her self.

Dr. Kanayama does not push surgery unless he feels it is really necessary, but he does feel it needs to be in my future as soon as we can make that happen due to it most likely growing on my organs. I explained to him that I’ve accepted I need a surgery. I’ve had to face my fears and come out of denial. I’ve tried diet and lifestyle changes, but the disease is winning at this point. I’ve been pain free for about 8 years which is unusually so I do think those diet and lifestyle changes helped but I definitely did let stress take over for a large part of 2016 and that happened to be when the endo got worse.

I really can’t have surgery right away for a few reasons and so we are going to try a different birth control pill for a few months and see if that can band aid the pain until I can get surgery. We are going to try Lo Loestrin Fe. I had to take a pic of it in front of the flowers because I find that funny for some reason. Strange sense of humor I know, but some of you get me 😉.

Will keep you updated on this next pill – pray for me!

#endometriosis

#endo

#excisionsurgery

#bcpill

#wtfisthisdisease

No more pill for me … for now

Well I stuck it out for 7 weeks and just couldn't for another day and so I'm stopping the pill. It did help with the pain I was experiencing with my period which was a huge relief, but I started to experience UTI symptoms that I can't live with – they are interfering with my life! The cultures came back negative, I tried a week of antibiotics and still no improvement. When I told my OBGYN and his nurse they both said no pill causes bladder or urinary tract infections. That may be true, but I am pretty confident that I'm having a side effect of the pill because I never have dealt with this before and it came on pretty soon after I started the pill.

I went to a Urologist who said she thought I was having these symptoms due to the pill but when I told a different OBGYN in the same group I go to what the Urologist she said I needed a second opinion and to go to Yale. Im keeping the second opinion appointment, but I'm taking myself off the pill to see if the symptoms go away. I can't even drive 20 minutes from work to home without worrying if I am going to hit traffic and not be able to get to the bathroom!

I could deal with the constant "break through bleeding", cramps, back aches, breast tenderness, no sleeping and weight gain since I am getting relief from my pain but I've got to see for myself if these UTI-like symptoms are from the pill, otherwise I know how it will go – test after test from the Urologist to see if they can solve the problem and I don't want to do that unless absolutely necessary.

My fear is obviously that I will have the pain again that I was having by going off the pill, but if the UTI-like symptoms stop after going on the pill the maybe I will try a different pill. Ultimately I'm just trying to band aid the problem until I can afford surgery. The surgery is what gave me years of a pain free life and my hope is that it would again. It's tough being a woman!

#endopain
#endolife
#birthcontrolpill
#deepexcisionsurgery
#endometriosis
#sucks
#staystrong

10 years post deep excision surgery 

Happy July! I’m so sorry I fell off the face of the Earth for awhile there, but I have had a lot of positive changes happening and been putting my energy there despite dealing with this beast of a disease.  

If you’ve been following me you know that I am all about alternative therapies and helping manage Endometriosis with food and supplements after deep excision surgery, but I finally had to come out of my state of denial and accept that I was dealing with similar pain I had dealt with years ago when I had endometriosis. I have put off having another surgery because I hadn’t been in pain for so long, but if I’m honest with myself (which now I am being), I see that I’ve been suffering for probably close to 2 years again.  It was after I had my second child and stopped breastfeeding.  I was under an extreme amount of stress and I believe that stress played a huge role in why I started having such pain again and probably caused the Endometriosis to develop again.  

For 3 years I have been avoiding the pill to help control my hormones like the plague and have been to numerous Naturopaths, Acupuncturists, Physical Therapists, and Chiropractors all coupled with my Health and Wellness education but never saw any improvement with the pain I was experiencing especially around my period.  I knew deep down it had to be Endometriosis again but I didn’t want to accept that even with my endometriosis specialist telling me that was most likely the culprit.  


I finally “gave in” and started the pill in hopes I can get through the summer without pain.  I know it is just a band aid for the interim, but if it can help that would really be such a relief to just not have to deal with it for a short time.  I still know deep down that surgery is in my future because of many different symptoms I am having, but I have faith in my surgeon and if I can get another 8 years of being pain free then I will be closer to menopause and hopefully not have to deal with this again! Wishful thinking I know.  

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.