Chapter 46: Interview with Susan

Susan is a friend local to the WNY area. She and I have discussed endo multiple times and I'm so grateful that she was willing to answer these questions for us!

1. What endo symptoms did you experience? My symptoms started with debilitating cramps.  I felt like someone was putting my uterus, ovaries, and lower back through a wringer.  I would get nauseous and feel miserable and tired.  Of course, nobody believed how much pain I was in, so I had to push through it all.   

2. When and how were you diagnosed? How long did you have symptoms before you were diagnosed?

I was diagnosed in my sophomore year of college.  I was living with my Grandmother and my symptoms seemed to go from bad to worse in the course of a summer.  To the point where it must’ve really got her attention.  She took me to the ER and they did nothing for me ... aside from asking if I was pregnant or recently had an abortion ... because apparently those were the only two reasons a woman would have for feeling that way back in 1985.  They pretty much dismissed my issues without so much as a sonogram.  I went to my OB/GYN who basically said “every woman goes through this”.  It wasn’t until a friend of mine suggested seeing a GYN at Roswell Park.  Even though any bloodwork for cancer came back negative, he still agreed to see me.  He thought it might be endometriosis and sent me to one of his colleagues.  This new doctor suggested a laparoscopy to see what was going on.  A few weeks later, I had my diagnosis. 3. What impact has endo had on your life? 

Endo left me with extreme scarring.  My ovaries were encased with it.  It managed to pull one of my Fallopian tubes down and it caused a “kink” in the other Fallopian tube.  When I came out of that surgery, I was 19 yo and told I had less than 1% chance of getting pregnant on my own due to the kink in the one tube and other being pulled down.  

4. What do you do to help with your symptoms? 

They cleaned out as much as they could.  I was put on birth control and did well for about 4 years until I started feeling the same way again.  My doctor suggested a second laparoscopy and I agreed.  Endo was back.  They cleared as much as they could away and cut my utero-sacral nerve which ended up alleviating my back pain. More birth control.  I avoided pain killers as (although I was never a drug user) I was afraid of becoming addicted to them.  Even in the 1980’s, you would hear about people getting addicted to them.  I did not want that to happen to me.  The “hardest” drug I took was 400 mg of Motrin.   I was able to really develop a high tolerance for pain!  5. What advice do you have for women who think they have endo? If you think you have endo, seek out a specialist.  If your OB/GYN isn’t helping, get a second opinion ... or a third or a fourth.  Find a specialist in your area and tell your doctor you want a referral to the specialist.  If your doctor won’t right the referral, go to Urgent Care and ask them to refer you to the specialist.  (I did this with a dermatology condition my primary physician chose to overlook even though I asked about it.  They were happy to give me a referral).  Speak up for yourself.  It seems like, in the 1980’s, endometriosis was new ground and a lot of things were simply chalked up to “typical woman problems”.  My female OB/GYN told me “we all get cramps, how bad could yours be?”  You would think a woman would be more compassionate!  After that, I never went back to a female OB/GYN.