For years I was told the "cramps" were manageable with an ibuprofen, that the pain was in my head. I was referred to a psychologist. I was beginning to think it was in my head, but how could this excruciating pain, be in my head it feels so real. In 97 my OBGYN decided that the Depo injection will help with pain. In the Summer of 1999 I landed myself in the hospital. I was told I had a cyst erupt that it was normal given pain medication and sent home. I began seeking different options from doctors as I would bleed for months everyday and than nothing for a month. This went on until 2001 sex was so unbearable that I was prescribed a pillow for intercourse to rotate my pelvis. This was a moot point sex hurts, it's a magically intimate act and grin and bearing it should not even be a thought. I got pregnant in November 2001 the most exciting time I was elated. 14 weeks in and I wake up full of blood cramping so bad. My husband rushes me to the hospital. I was told I had a spontaneous abortion. Can you imagine the pain we felt, until a lightbulb went on inside of my brain that. I know this pain. I had a cyst erupt. You can imagine the doctors when a grieving mother is pleading with them telling them they are wrong her baby isn't dead. After hours of pleading even after I was given enough psych meds to knock out a horse. They finally agreed to have a specialist come in to see me. I was right my baby was fine. It was a cyst. I nursed my son until he was 14 months old the entire time I was pain and cyst free. 14 months -21 months post nursing I was pregnant again, happy pregnancy healthy baby and then all hell broke loose.
In 2005 I went to see a Gynecologist. I knew something was wrong with my body I just didn't know what. After seeing many doctors and being told nothing was wrong with me so many times, the feeling I had was past desperation, it was my final attempt to be an advocate for me. After many many tests he decided it was best to conduct a laparoscopic procedure to just see what was going on. During that surgery they discovered that from all the cysts erupting the only option was to remove my Fallopian tubes. If I were to get pregnant the chances of me having an ectopic pregnancy were over 90%. The lining of my uterus was abnormal but they closed me up and gave me many different hormone medications.
Never the less in 2006 my marriage failed for many reasons, endo playing a large role. I couldn't be intimate as the pain was too intense, I was in pain all of the time and it changed who I was and I pushed him away.
2006- the doctor performed 2 surgeries totaling 11 unsuccessful uterine ablations. He didn't understand how the balloons kept deflating almost as like the oxygen in the area was non existent.
On a Wednesday in July of 2007 I arrived in tears to my physicians office. I had been in the emergency room 9 times for cysts erupting and the pain was too much to bear. He did an ultrasound and ran some tests and I was admitted to the hospital that Friday. I needed an emergency hysterectomy as I have cancer in my uterus. They removed my uterus, one entire ovary, and my cervix. With complications I spent the next 8 days in the hospital where I learned I was allergic to the entire opiate family. The doctor said he saw some signs of endometrial tissue.
For the next year I went to vaginal therapy as my bladder fell and tilted. My hormone levels were so off the wall they put me in medically induced menopause. I had stimulation therapy on my vaginal walls as they were constantly in "orgasam" mode. By January of 2008 I was back in for another surgery. I was diagnosed at that time with Endometriosis. My doctor said it was "everywhere". In fall 2008 I was back in for another surgery and they scraped all the endo tissue and stitched me back up.
Summer 2009- next surgery my bladder fell more and needed to be tacked up. The endometrial tissue had spread into my bladder, they attempted an ablation, it failed. Doc wanted me to try Lupron. Again said no.
2010- Another surgery it spread to to my sacral ligament and it created a bunch of scar tissue in my bladder. They burned off as much as they could.
2010- Endo spread to my gallbladder and had to be removed. They said it was like my gallbladder had been through a garbage disposal. Doctor recommended different hormone therapy I refused.
2011- Pain was at a constant 7, endo had spread to my bladder, onto my spine, the outside of my bowel and entire pelvic cavity.
October 2012- Endo pain severe and had 4 cysts that were not bursting, my ovary was missing and they could not locate it during surgery. My entire bowel was burned inside and out. My bladder is tilted so far back. The endo has created a large hump which makes it difficult to completely empty my bladder. They burned the endo off of my sacral ligament. The doctor was not able to remove endo from T-8 and T-9. With The burning of bowel I did not have a bowel movement for 16 days post op.
2013- Pain returned started back up in March 2013. Did some research went gluten-free from April 2013 - September 2013 pushed through the pain until September 30, 2013. They found a mass slightly smaller than an orange that had to be removed. The doctor stated the endo was less than any previous surgery but the scar tissue is very extensive.
My physician has been fantastic. He humbly stated to me that he doesn't know where to go from here. I should seek another doctor who specializes in endometrial surgeries. The mass that was removed came back as benign however there were abnormal cells.
