Karin's Story

My name is Karin. I married the love of my life in November of 1999, but my journey with Ashermans Syndrome started long before we even met. Where to start……., I guess the very beginning is best. I was very young when I first started to menstruate. I was 10 ½ years old. The first year was sporadic cycles, but after about a year my system settled into a fairly regular 30-day cycle. By the time I was 14 though I started to get very heavy periods that would last for up to 3 weeks sometimes, and there would only be about 2 weeks in between each period. I would go through a pad an hour and sometimes pass clots as well. Not knowing any better I never questioned it and never said anything to my mom. I lost my virginity at the young age of 16(though it didn’t seem so young than). From the time I was 16 to 20 I used a diaphraghm and condoms as my method of birth control. During this time my periods continued to be heavy and last long. One time when I was 17 I had a particularly bad period. I had passed several clots and actually passed out in the bathroom. It wasn’t till 4 years later when I was diagnosed at 21 with Ashermans Syndrome in 1983 that my doctor and I came to the conclusion that I most likely had experienced a miscarriage that particular time and not even known I may have been pregnant. From about the age of 18 to 21 my periods got lighter and lighter and eventually stopped. Knowing now what I do know about Ashermans this sort of makes sense. My uterus had gone through the trauma of extremely heavy periods as well as a probable miscarriage that was not diagnosed or brought to a doctor’s attention at the time. I truly believe there my have still been some retained “product” in my uterus and possibly I had an infection. This would have caused the scarring and the eventual disappearance of my period. After about 1 ½ years and 4 different doctors later, either telling me I had no period because I had lost a lot of weight, or had been through some emotional stuff or one even went so far as to tell me I may be premenapusal . When I was diagnosed at 21 my doctor was very surprised at his diagnosis I remember him telling me that he only saw this in women who had either miscarried several times or had several abortions, or had things like scarlet Fever or rheumatic fever, which could cause a possible infection. So I had a diagnostic hysteroscopy and a D&C in 1983. At the time he inserted an IUD to help prevent additional scarring and to let the uterus heal. I kept the IUD in for about 3 months. My periods returned after this D&C but were nowhere near the way the used to be and my cycle was very irregular and as the years went by they got lighter and became more irregular. When the IUD was removed I started on the birth control pill in hopes of regulating my system as well as continued to take it for birth control purposes. I continued to take the birth control pills till July or August of 1999 (almost 18 years). By this time my periods had stopped all together again about 2 years prior. My doctor, the same one who had diagnosed me and did the D&C said that as long as I was taking my birth control pills correctly I was OK. I remember voicing concern in regards to my past history and fearing maybe I had re-scarred again but he dismissed it. Since I was not yet married I was not concerned with trying to get pregnant, so it didn’t seem to be an issue. Like I said earlier I married in November of 1999 and had stopped the pill about 3 or 4 months before that. No periods returned nor did I get pregnant. My dad unfortunately died 3 days after my wedding so everything sort of came to a stand still. In August of 2000 I was scheduled for an operative hysteroscopy with my same gyn that I had been seeing all these years, he listened to my concerns this time. In addition to Ashermans I have a retroverted uterus, which means it tilts backwards Because of my retroverted uterus he apparently had a hard time with the hysteroscope and my uterus was perforated. Luckily it was a small hole and it was able to heal on its own. After this he told me that he would not attempt to do this again and that I needed to see a specialist. I didn’t see the doc that he referred me to because he did not accept my insurance. This started me on a quest of more knowledge of AS and who could help me. In November of 2000 I found this place and it has saved my sanity. I was and am very lucky in the fact that I live in NYC and was able to see a doctor – In June and July of 2001 he performed an HSG and a diagnostic hysteroscopy on me. I was lucky this time there appeared to only be scarring at the mouth of the cervix. Through these two procedures he was able to break through it. In August I had my first period in almost 4 years. It was not much more than spotting for a day or two but it was something. I than began my search for an RE because even though my uterus was scar free I appeared to have some blockage of my left tube. That combined with the fact that I will turn 40 in July of 2002 led me and my husband to look into IVF. I found a great RE who I saw for the first time in November 2001. We started all the tests again to make sure we were ready and candidates for IVF. Everything basically came back fine. I did have an atypical pap, which meant I had to go for a colposcopy but it came back ok. My RE had also done a SHG and found what appeared to be a small patch of scarring or a polyp in December 2001, so I was scheduled for an operative hysteroscopy in late January 2002. It was a tiny spot of scar tissue and it was removed. I didn’t even need a balloon for healing. We were now ready for IVF, my uterus was clear. In late February 2002 I started with Lupron injections to suppress my system so that I would than be able to start Perganol injections to stimulate my ovaries to produce several eggs. After two weeks on Lupron I was not responding. My dosage was increased and I continued with the amount for a week. I did respond to the higher dosage but I also developed a cyst so my cycle was canceled. Two more cycles have been cancelled due to poor response and the journey continues.

Updated 02/25/2007

In November of 2004 I was diagnosed with Ovarian and Uterine Cancer. My last regular gynecoligist checkup prior to this had been in February 2004 and my last visit with RE was in January 2003. While seeing the RE I was examined with internal sonogram at least 2 times a month. Somewhere during that last visit to my gynecoligist and November 2004 the cancer started growing. You cannot be diagnosed with Ovarian Cancer until you are actually on the operating table and they have sent a sample of the tumor off to pathology. On November 30, 2004 I had a total radical TAH/BSO. They removed both of my ovaries, both of my fallopian tubes, my uterus and my cervix. They also removed my appendix and my omentum. They found three tumors. The biggest was sitting in the “bowl” part of my abdomen under and in front of the uterus. This tumor was the size of a human head. There was a smaller tumor in the “cul de sac” area which is behind the the uterus and this tumor was the size of a tennis bowl. They also found the entire uterus to be filled with a third tumor which was the size of a grapefruit. My pathology reports state that the tumor in the uterus was a “Secondary Primary” cancer meaning that it did not metastasize from the ovarian tumor, it was its own tumor and cancer. From December 2004 through April 2005 I underwent 6 rounds of chemotherapy using the drugs Taxol and Carboplatin. Taxol is an extremely strong dug. I did loose my hair but good non nausea medications helped to keep the vomiting at bay. Chemo is very debilitating and you get weaker with each round. By October 2005 I had returned to work with my really short hair and was getting back to normal.

My gynecological oncologist was very aware of my history and stated that he could not conclusively say that the fertility drugs had anything to do with this or the ashermans either. He seemed to agree with me that this was just a final step in my gynecological parts never having worked correctly which is what I truly felt deep down inside. I did however go through genetic counseling and testing to make sure this was not hereditary so that I could be comfortable that my siblings and cousins etc were not at risk, at least not through genetics. Having a hysterectomy at 42 and being thrown into surgical menopause was not an easy thing. I do think though that having gone through all the years of dealing with my Ashermans and years of fertility treatments had already prepared me for the fact that I would never conceive or give birth to a child. It was still a very emotional thing to loose all these parts which for so much of my life had defined how I lived my life and what I did in regards to procedures and so forth. I will be in remission 2 years in April 2007 and I am healthy. My husband and I were never really in agreement with the idea of adoption and now with a history of cancer and us getting older it is no longer an option for us. There will always be a hole in my heart for the child I always dreamed I would have I do have a happy life and many nieces and nephews to dote on.

I seem to have panache for diseases that are not widely known about and are hard to detect. I am now very involved with the American Cancer Society and the National Ovarian Coalition to get the word out about Ovarian Cancer which is known as the “cancer that whispers because so many doctors overlook the symptoms and because there is no valid tool or test for detection women need to listen to their bodies.

I guess this brings my Ashermans story to a close since I no longer have the uterus that caused me so much pain.

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