Success Stories: Hope After Ashermans

Lucila's Success Story

I am Brazilian but I was living in Australia when my partner and I found out we were expecting twins. I was 35 years old. We both felt so special with the chance of having an "instant family"! Sadly, when I was 17 weeks pregnant we discovered the babies were a severe case of Twin to Twin Transfusion Syndrome - a very rare disease that sometimes affects identical twins. After consulting doctors and considering the possible outcomes for our babies, we decided to terminate the pregnancy. As we were already in the second trimester, we decided to have an induction so that we could have a chance to see and to say goodbye to our boys. They were born at 8:00pm on the 5th January 2002.

Despite being considered a high risk pregnancy (because I was expecting twins), I had never seen the Consultant of the Hospital in any of my pregnancy appointments. The delivery of the twins was also with one of his Registrars. After delivering the babies the placenta didn’t come out. The Registrar gave me an injection to help with the delivery of the placenta, but it didn’t work. Early in the next morning she explained me that we had waited a long time, and I now needed to have a D&C. She performed a manual D&C. The surgery was supposed to take 20 minutes, but lasted more than one hour. They told us afterwards that during the surgery the placenta got stuck, and broke into little pieces that she had to remove one by one. She said she used an ultrasound machine to make sure she had taken all the remaining products of conception. I was then discharged to go home with antibiotics. I was told a midwife would visit me at home and check on my progress.

The midwife came in for 5 days. Although I had a little fever, she said it was due to the fact that my breasts were full of milk and I was obviously not breastfeeding. No one suspected an infection.

I received lots of written information about what to expect after a miscarriage and/or termination. The leaflets mentioned that a bloody discharge was normal for some time, but quantities of the discharge were never specific, nor how long is "some time". An infection should be suspected if there was a bad smell, but I didn’t have that. Since this was my first pregnancy I had no previous experience to compare with, and although I was bleeding, I thought that was normal. However, I started to get really tired everyday and I had mild pains like period cramps. After two weeks the pains were getting worse and worse, and one day I passed on a clot that was the size of an olive. I then went to see my GP (General Practitioner) and she ordered an ultrasound.

When the Radiologist looked at my uterus she advised me to go straight to the hospital. She phoned my GP, who also spoke to me on the phone and advised me to go to the hospital. They said I had an infection and my uterus was full of blood. In the hospital’s reception, I was waiting to be admitted but found out there were no beds available. The Consultant responsible for my case finally spoke to me on the phone for the first time since my pregnancy. He asked what would I prefer to do, to be admitted in the emergency and wait till a bed became available or come back another day. I was tired, in pain and scared. I said to him on the phone: "I am not a doctor, I don’t know how bad my case is, perhaps if you came to meet me at the reception you could see the ultrasound report and photos, and maybe analyze my situation… I can only tell you that the Radiologist after looking at my uterus said I should come straight to the hospital, and I think she was extremely concerned". He then came to see me in the waiting room of the emergency department. He looked at the Radiologist’s report, and stated my options again:
- I could be admitted in the emergency, stay for the night and have a surgery the next morning with another one of his Registrars, or
- I could go home and wait for 2 days and come back on Friday as a Day Patient, when he would then perform the surgery himself.

I decided I wanted him to do the procedure this time - I imagined as a Consultant he would be more experienced. So I went home and waited. The procedure was called a Guided D&C, as he also used an ultrasound machine. After the surgery he said I was fine, and I should expect my period in 6 weeks time.

Well, this period never came. Sometime after the first or the second surgery, I developed Ashermans and I was never advised of this possible outcome.

After 6 weeks I went back to my GP saying I had not had a period yet. I told her I was having an increased amount of a jelly-like discharge and I was worried something was wrong. She said I was sad because of the big loss and trauma I had gone through and this was probably what caused the lack of period. I went to see my GP in February, March and April. I got the same diagnosis every time. She would check my hormone levels, talk to me about losing the babies, and say that my period would probably come next month. It never did. In my last consultation with her I said: "Are you SURE there is nothing that could have gone wrong in the D&Cs? There is nothing that could have damaged my uterus?" I thought it was just a statement of basic common sense, but I decided to say it anyway, because I was just so tired of hearing that there was nothing wrong with me besides the sadness. She then said that what I had was emotional, but she would talk to a gynecologist about my case. Two days later, she phoned me at home to say she was referring me to a gynecologist. She had spoken to a doctor about my case and he mentioned I could have developed some adhesions. She said this was extremely rare, but the gynecologist wanted to check it.

That day I researched the net on adhesions and D&Cs, and I found the Asherman’s site. I was amazed how similar my story was to so many other women around the world. I discovered a new meaning for the world "rare". I heard it was rare to get pregnant of twins, it was rare to have identical twins, it was rare to have TTTS, and it was rare to have Ashermans. I had all the above. I bought a lottery ticket, but didn’t win anything!

Today I know that the hospital system and doctors provided me with very poor quality care. Although the Registrar used the ultrasound machine to check my uterus during the surgery and also prescribed antibiotics, I still probably developed what they call a "hidden" infection and Ashermans because of the products of conception she left inside my uterus. At that time, my partner and I were so distressed with the experience of losing our babies that we couldn’t really access the situation. Today I find it a bit bizarre that you have to insist that the doctor in charge of your case come to see you at the reception of a Hospital. I also suspect that because of our experience of losing the twins the GP was very rapidly labeling me as a depressive, instead of trying to investigate possible causes for my lack of period.

I still went to the same Hospital to my Diagnostic Hysteroscopy. On the day of the hysteroscopy the gynecologist (recommended by my GP) who was supposed to perform my surgery didn’t show up. Apparently he had a call at the last minute. At the entrance of the theatre, I was introduced to his Registrar. I started crying, I said I was not having the surgery. I was so scared of having mistakes in my uterus again. I didn’t want a Registrar to perform my surgery, I wanted a doctor, a very experienced doctor. I felt so tired and hopeless, I thought people were just mistreating me. In the end I did have the surgery with the Registrar with the condition that she would just look at my uterus, and not attempt to do anything else during the surgery. And so she gave me little pictures of my uterus full of adhesions and the Ashermans diagnosis.

My partner and I couldn’t believe the things we were going through. We felt our story was one of those stories you hear about someone else’s life, it never really happens to you. But it did to us.

After the surgery I finally realized we needed to change. We changed doctors and Hospitals. Through the Ashermans site I found information on the syndrome and its treatment. I contacted a new doctor who was recommended by a German specialist in Ashermans. I sent him an email explaining my story and he was so kind in his reply. I still went back to see my GP, since I needed a letter of referral to see the specialist I wanted, but I think she was just feeling so guilty for misdiagnosing me that she just did whatever I wanted. I printed lots of Ashermans information and gave her the address of the Ashermans website.

In the first visit with my Ashermans specialist, I took with me my little notebook with lots of questions regarding my condition. I made sure his treatment was close to what I had read was the best treatment for Ashermans cases. The doctor explained to me about the syndrome, he drew pictures of my uterus, he did an ultrasound of my uterus, he talked about the treatment and he said I was not the worst case he had seen. Later I was diagnosed with Moderate Ashermans and my adhesions were at the lower part of my cavity and my cervix was blocked. He said Ashermans treatment was long and involved probably more than one surgery. He said in his experience something between 1 and 6, averaging 3 surgeries in each case. He prescribed some estrogen. When we left his consulting room I was happy because I knew I would finally get good treatment.

My first Operative Hysteroscopy was on July 2002. The surgery lasted only 5 minutes because my Ashermans specialist perforated my uterus. The surgery is very delicate, because the doctor can’t see where he has to go. Well, he went in the wrong direction and reached the walls of my cavity. When I woke up from the surgery and I looked at my partner I saw he had been crying. My partner said he didn’t know how to tell me that the surgery went wrong and the doctor had perforated my uterus. I thought I was very unlucky but I remembered I had read at the Ashermans site that perforation sometimes happened even with the best specialists. But by then I had had enough! I was told I needed to wait for three months before having another surgery so that the walls of my cavity would heal. So I decided I needed a break and I went on holidays to Brazil. I came back for my second surgery in October 2002. This surgery was successful, the doctor cleaned my uterus from the adhesions, but unfortunately they reformed at my cervix. I stopped the hormones in November, as my doctor said the lining in my cavity was good – 7mm. I still had surgeries in November and December 2002 but adhesions were again reforming in my cervix. The doctor said that at each surgery the amount of adhesions in my cervix was less and less, nevertheless adhesions were still there. In January 2003 I had my 5th surgery, which was also the last one. This time the doctor used a barrier, a spray gel.

In January 2003, for the first time since September 2001, I got a period five days after the surgery. I was so happy and grateful that I was bleeding again. It was an amazing feeling. I still remember those days when I used to complain about having my periods and moods and all that comes with it. Well once I didn’t have it anymore, I just felt so miserable. When it came back it was such a RELIEF… My second period was not as good as the first one, I was one week late, and it was much darker blood, and less quantity, but still it was a period, so I was definitely happy.

I never got a third period because I then got pregnant. I could not believe how lucky we were. We were given a second chance to have a family. At this time we left Australia and we moved to New Zealand where we now live.

I knew pregnancy after Ashermans was not easy. There are so many things that can go wrong, like incompetent cervix or problems with the placenta and therefore with the baby’s development. It was very scary but I tried to control my anxiety by reading a lot about all the possible outcomes. I asked my Ashermans specialist for a referral of an obstetrician in New Zealand. I had great care this time, with a group of specialists looking after my pregnancy. I also corresponded with my Ashermans specialist in Australia and would consult him via email about questions regarding post Ashermans pregnancy.

During the pregnancy I had many many ultrasounds. I had weekly visits at the clinic to check the baby. Because of the amount of surgeries I had (7 in one year) we decided to go for a preventative cerclage. I had read of too many cases of incompetent cervix, and second trimester losses, in post Ashermans pregnancies. I didn’t want to risk losing another baby. The cerclage also had some risks, but we decided to go for it because I would be much more relaxed if I had one done. It was put in place at 15 weeks. I had no infections from the procedure and from then on my pregnancy was perfect. I was of course still very anxious. I was advised to avoid too much exercise and to stay near a hospital. At 37 weeks the baby was breech so we decided for an elective caesarean. However, in my appointment the day before the surgery the ultrasound showed the baby had turned. Even so, the doctors decided for the c-section. My baby was born in November 2003 at 38 weeks. I had two doctors attending the surgery, but fortunately there were no complications. My little boy was perfect, the placenta detached from the walls in one piece this time. My partner and I were so happy and relieved.

I don’t know the current state of my uterus because I am still breastfeeding. But I hope I will have a period in 3 months when I stop breastfeeding.

I still find myself very sad when I tell someone about my previous history. Losing the twin babies and having the Ashermans ordeal was such an extreme experience for my partner and me. But it made our relationship stronger and today I feel I am a much better person. I learned to be stronger, to hear my body and to believe in my feelings whenever I think there is something wrong in my body. I learned to ask questions, and to state what I want and what I deserve to receive from doctors. When I look at my 3 months old baby, I know how lucky I am in having such a perfect little man smiling at me. Although I am not a religious person, I do think he is a little miracle. He is sooooo special.

Click here to see the Portuguese version of this story.

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