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.