Sarah's Story

It was the week of my 30th birthday, November 2011 when I went to my annual pap exam and explained that I had been trying to conceive for almost a year with no success. I was having very heavy periods soaking through a super plus tampon within a minute of insertion, severe cramps that left me unable to stand at times, frequent urination, severe lower back pain and my legs fell asleep often. My ob/gyn doctor performed my pelvic exam and said I should have a vaginal ultrasound and gave no explanation. I was more than worried wondering what could be wrong with me. I went to the hospital a few days later because I was bleeding so heavily and it looked like a crime scene had occurred in my bathroom and on my bed. Over a week had passed and I still had not heard anything from my doctor. I was weak and in lots of pain and very upset. My doctor was not getting back to me even after calling the office multiple times and contacting the clinic administrator. I decided to get my results from medical records and take them to another clinic. The gyn I saw had been practicing for many years. He looked at my ultrasound report and told me things were not good and then performed a pelvic exam. He handed me a box of tissues and told me I had diffuse uterine fibroids, that they were taking over my entire uterus and I would never be able to get pregnant or carry a child. I was told putting me in menopause with Lupron or hysterectomy was my only options. I was alone at this appointment and felt like I had been stabbed in the heart and my dreams of pregnancy had been crushed.

I held out hope and found a RE in my state that is an internationally recognized expert on uterine fibroids. She told me that due to the number of fibroids, the position and size of my uterus and to preserve fertility that the most invasive operation could be performed. I didn't care and was just so happy that someone could help me. On December 28, 2011 I had an open abdominal myomectomy to remove 35 fibroids and a D&C to remove a small endometrial polyp. Developing adhesions was my biggest fear and was the last thing I discussed with my RE before being transported to the OR. I was told it was something I didn't need to worry about. This was my first ever operation and I was very nervous. I also have Type 1 Diabetes and have an insulin pump. I was told the operation went very well and I would not have any problems getting pregnant and could begin trying in 3 months. I was very sick after surgery and knew it had to be from my diabetes. I was not getting the insulin I needed through the IV and ended up developing a large amount of ketones which is a potentially life threatening complication for diabetics. The hospital staff was not taking the condition or my symptoms seriously. I was furious feeling so ill and being at one of the top hospitals in the US and how they would not address my concerns. I was in the hospital for 3 days after my operation. I am a dental hygienist and was off work for 6 weeks. My period still had not returned 10 weeks after my surgery. I had a sonohysterogram and was told I developed some scarring that it would be no big deal and that I would have no problems getting pregnant. I had all the symptoms of getting a period but no bleeding and more pain. I thought removing all the fibroids was going to relieve all my pain.

My RE said she would perform my next surgery. I then began to research adhesions and found out what Asherman's Syndrome was from this site and gained much needed knowledge from the International Asherman's Association and talking with other women. My RE seemed offended when I wanted to ask her so many questions before surgery. I was unsure if I was making the right choice for her to do the next surgery. On April 16, 2012 I had a hysteroscopy and it was determined that my scarring was severe and complete obliteration of the entire cavity. A perforation was made at the fundus and laparoscopy was then performed. I was told the surgery went well and a normal cavity had been established. I developed ketones again and was very sick after surgery. I had a malecot catheter placed for 1 week and hormones for 28 days. My period did not return just the awful pain. I returned for a sonohysterogram and once again complete obliteration. I was told by a RE finishing his fellowship at the clinic that he did not think I had made any progress with the surgery and he was unsure if it could be corrected. My depression and deep sadness returned.

I decided I needed to contact an AS specialist. He was very honest and straightforward with me. My case was severe and he said it was probably caused by my myomectomy to remove the fibroids and that my cavity had to be entered during the surgery due to the location of a few of the fibroids. He didn't think the D&C to remove my polyp was the cause but said the polyp should never have been removed by D&C, only by hysteroscopy. He could only give me a 30% success after having a fibroid surgery. In August 2012 I boarded a plane and travelled for my hyst/lap surgery. It was my best surgery experience yet and couldn't have asked for better care. He worked with my local endocrinologist and I was able to leave my insulin pump on for surgery and had no complications. He did say I was a complete mess and he was unsure what he would be able to accomplish but was very happy with how things went. A normal cavity was established and both my tubes showed patency. I had the Cook's balloon stent for 3 weeks and hormones for 45 days.

I did not have withdrawal bleeding after finishing my hormones, just back pain and cramps. I had an HSG done by my local RE office and was told there had been slight improvement. It wasn't until 10 days after my HSG that I had heavy bright red bleeding for 3.5 days. They could not comment why that bleeding had occurred but possibly the HSG broke up some adhesions or my cycle was just off. He could not tell me how much improvement was made, just said it is still an uphill battle. I have scheduled my next surgery and will travel again for my hyst/lap surgery on November 29, 2012. This will be my 4th surgery in 11 months.

AS has brought me to the lowest parts in my life. I feel lonely and depressed and still can't accept that my biggest fear is haunting me. I am sick of people not being supportive of my fight to try to beat AS to experience my dream and rid myself from the pain. I am thankful for the openness that other women with AS have provided and helping with my journey. These people truly understand the pain of AS. Please follow my journeyhttp://sarahbeastromanderson.blogspot.com/

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