Camille's Story

I have always felt like a bit of an anomaly in the Asherman’s Syndrome world.  My story is so different from most and the fact that my story has absolutely nothing to do with trying to conceive, I have felt I had little to offer thru my experience.  I realize now that maybe there are more women out there who are like me but don’t think that Asherman’s Syndrome can affect them because they either aren’t able to have children or don’t want them.  So, I’m offering my experience to those women so they know they aren’t alone.

In 1985, I went on the birth control pill, Ortho-Novum 7/7/7.  In 1996, I decided to give my body a break and, then in 1998, I went back on it.  In 2000, my physician at the time, decided that with the new pills on the market, I should be on a lower dose pill and put me on Mircette.  I was only on it for one month, when I had a very heavy menstrual cycle.  I was put back onto the Ortho-Novum and all was well for almost 2 years but, in late 2001, I started to have heavy cycles again.  I didn’t think much of it.  There was no pain just an annoying day of heavy bleeding.  By 2003, I had become dangerously anemic.  At that point though, I had acquired health insurance and was able to see a regular gynecologist.

My new gynecologist was great.  She tried desperately to get the bleeding under control using different hormonal therapies, including Necon.  Nothing seemed to work.  So, she offered me another option:  One that would leave me infertile but would stem the bleeding and leave my uterus intact.  I agreed to the procedure and, in April of 2003, I had an endometrial ablation.  When I came out of recovery, the doctor informed me that something had gone awry during the procedure but that she felt assured that it had been effective.  It seemed that the contacts that conducting the electrical current to cauterize the endometrium had come in contact with my cervix and that time would tell what the outcome of the procedure would be.

In August I had my first cycle after the ablation, it was 6 days long with 2 days of moderate flow and 4 days of very light bleeding.  There was some light cramping that I would take ibuprofen for but I could live with that.  Over the next 4 years that story would change.  My doctor moved to another office and I was handled by any available doctor in her old group.  The cyclic pain started and every trip to the doctor only saw the dosage of my painkillers increase.  I was told to take the painkillers before I really needed them.  Plus, the bleeding had become scant and I would bleed after sex.  I even got to the point where I would use a dildo to induce bleeding because it seemed to help with the pain.  By August 2006, I was taking Vicodin 7.5/750 every 6-8 hours for the pain 3 days out of the month, I was getting deathly ill, and I had stopped bleeding.  Then in early September, the pain became so excruciating I thought I was going to die.  I was vomiting and a friend had to run me to the doctor’s office.  I was pale and my blood pressure was low.  The doctor who saw me decided to do an ultrasound immediately, something no one else had done up to this point.  As soon as he inserted the probe, I hemorrhaged on the table.  I did feel so much better though!  That was when he realized that I had an “occlusion” of some kind and he scheduled me for a D and C hoping that by dilating the cervix he could create a passage that would allow me to bleed normally.  He did inform me though that it might only be a short-term solution.  It was unfortunate that during the surgery in October of 2006, he perforated my uterus and had to stop the procedure.  When I came out of recovery, he let me know that there was an occlusion to my cervix, possibly scar tissue.  I was okay for one month.  Then the cyclic pain resumed again.   But, with the information I got I was able to go on-line and research possible treatments for a “scarred over cervix”.  I looked into conization and tried desperately to find a doctor that was in my insurance network.  Most I found were only interested and capable of performing a hysterectomy.  I saw that as overkill so I kept looking until one afternoon in December, I found Poly and her on-line support group.  I know knew that what I was experiencing had a name, it was Asherman’s Syndrome.  What I hadn’t been told when I had the ablation initially was that ablations intentionally create Asherman’s in order to stop bleeding.  

Thanks to Poly, the website and by conversing with many of the women on the site, I was able to find the most knowledgeable surgeon in my area and I contacted him immediately via e-mail.  He called me that day and asked when I wanted to come in.  It was right before the holidays and I figured I could survive one more month.

On January 24, 2007, I saw the doctor for my first consult.  During the initial exam, he confirmed that my cervix was definitely scarred over.  It was agreed that he would attempt to clear the scar tissue, in hopes that it would alleviate the cyclic pain.  And, before I left the office, I scheduled my Lap/Hyst for February 7, 2007, at the surgical center since my insurance was not going to cover the procedure.  My insurance regarded this treatment as a “reproductive” issue and not one of general health.  At this point, I didn’t care what it cost.  I just wanted my life back and the pain to stop.  

After the surgery, the doctor told me that apparently my ablation had not been “complete”.  I still had viable endometrial lining that was causing me to continue having menstrual cycles but since my cervix had scarred heavily, I was bleeding into my fallopian tubes and into my abdomen.  Because of that, I had also started to show signs of adenomyosis.  He assured me that there was a possibility of this clearing up on its own now that I could bleed vaginally.  I was sent home with a foley catheter, some pain pills and an antibiotic.  I didn’t need hormone therapy because I was not going to attempt to conceive.

It has been over 4 years since my surgery and I’m doing well.  I do have a monthly cycle of about 4 days: One day of heavy bleeding and the other days I just spot.  I am infertile and I no longer have cyclic pain.

I spent some time with my surgeon to try and find a doctor in my insurance network that he knew and who understood Asherman’s Syndrome.  I luckily found one in my area.  She may not have experience performing Lap/Hysts but she does know of my surgeon and has a high regard for him and his expertise.  That is the best I can hope for.  And, the adnenomyosis did clear up on its own.

International Ashermans Association

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