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