Tuesday, March 18, 2014
My Endometriosis Story. Endometriosis Awarness week 3...
this is probably PG 13*
Here is my Endometriosis Story:
(this is the sort of shortened version because 7 yrs. is a long time and we would be reading this for days)
I had a diagnosis of an Ovarian cyst at age 14. I had always had awful pain and heavy periods but was told it was normal and didn't think anything of it. After the Cyst on my ovary I was in pain. This resulted in me seeing a Gyn. This doctor was awful to me and he told me a transvaginal ultrasound would give me a diagnosis of Endometriosis... I am extremely petite and I was 14 hello! but we did it because the doctor said it would diagnosis me... We (my mother and I) knew nothing of endometriosis. so of course we bought the lie. FYI there is no test for Endometriosis you must undergo a laparoscopy to be diagnosed. (my mother had, had Endometriosis, she just didn't know it at the time) So swiftly I stopped seeing him for it was traumatizing the young 14 year old me... and Endometriosis scared me because I wanted to have kids one day and everything at that time you could find on the internet basically said you would be infertile and their was nothing to cure it. After this I saw several gyns. One even did surgery and I got a diagnosis of Endometriosis at age 15... they put me on birth control and I had a ton of problems that I was told were "in my head" or I was "dramatic" and my favorite "crazy or depressed". I even believe those things at one time. This was after my diagnosis of Endometriosis. I thought being diagnosed would get me out of the "dramatic/Crazy" talk...to my surprise it did not. I fought for myself for years and after my surgery suffered from vulva problems...no answers for this either... I was constantly being told by doctors that I had no options left...their was nothing I could do. I eventually saw Dr. Joseph Brooks in Phoenix AZ. When I was 19 years old...5 years of grief...The first thing he said to me was, "you are not crazy" He diagnosed me with vestibulitis...LADIES THIS IS IMPORTANT...birth control pills can cause this vulvar vestibulitis...it is a lack of estrogen in the vulva tissues which created major problems! (this doctor has studies of proof) So off birth control pills I went.. (they never worked for me well anyways in fact if I knew they could cause such a horrendous side effect I'd thrown them in the trash years before) then shortly later got diagnosed with Lichen Planus... I was so not crazy (you know your body ladies!) Then he referred me to Dr. Hibner at St. Joseph's pelvic pain and gynecology...I saw the P.A. and she suggest I saw Dr. Desai instead because her surgery schedule was lighter then Dr. Hibner's. So I agreed and met her that day...The first thing she said to me was, "Endometriosis is no excuse to live in pain." She was so kind and took my pain very seriously. She diagnosed me with pelvic floor tension myalgia...so bad it was to the equivalent of me getting my pelvis crushed in a roll over accident(except I was not in an accident and I had no broken bones) I had pelvis floor tension myalgia to the worst extent you could get it... Since I lived in pain... pelvic floor tension myalgia was the result of the constant pain I was living in... I was collapsing due to these spasms and functioning at 0%.and the pain was AWFUL I can not even describe its level to this day. She scheduled my surgery on a Saturday just so I could get in faster and so I could have another surgery at the same time with a different doctor... She was in surgery for 3 hours she clipped the nerve to my uterus (with my permission) to relive cramps... and she did something I had never heard of before she took biopsies in places endometriosis grows... you could not see my endometriosis but it was their all over just microscopically. She found one lesion that was visible to her surprise...(before surgery she warned me that we would more than likely have to do a bowel resection because my pain was so high I had to have severe endometriosis) I did not have severe endometriosis. (blessing) & that fact could change anytime really, but I did have it and It was causing me pain and surgery was a big help...she decided most my pain was from pelvic floor tension myalgia...2 years later... I know that was my biggest problem and am thankful for these doctors because without them I'd still be in such a strong amount of pain and I would not know why because probably 98 percent of gynecologist do not know what pelvic floor spasms are or they just deny their existence. I have been in physical therapy for my pelvis for 1 year and 9 months. I am so much better than before but know I still have a ways to go... and that surgery will always be in my future but These doctors cared about me and cared to help me even on their own time... That's a true doctor they do studies too and help teach... They care and the specialty is like a specialist of a specialist! I am so very thankful for them! & feel safe in their care.
Here's links to pelvic pain specialists...They are located in Pheonix, AZ. I see Dr Desai and I know Dr. Hibner is awesome too! I have truly been all over seeing different gynecologists...This team knows much more about the pelvis and pelvic pain and I will never let another doctor/surgeon touch me for my Endometriosis and pelvic pain ever again! These are my people they have helped me so much! Check them out!! I wish every woman with Pelvic Pain could see them! That's how amazing they truly are!