SueSie's Success Story

After giving birth to my daughter in January 1997 I didn’t stop bleeding. After three weeks of permanent bleeding my gyn sent me to the hospital. While doing US they found pieces of retained placenta, and therefore they performed a D&C.

Until the year 2000 I had very short and weak monthly periods. I got pregnant in the summer of 2000, but after 8 weeks a gyn found out that there was something wrong with the baby’s heartbeat. He told me to come back within 3 days then the baby would be surely dead. Those 3 days were horrible! And then the worst became true, the baby died. It followed another D&C in the hospital, this time because of the missed abortion. From that day on, in august 2000 until May 2001 I didn’t have a period at all. But every month I had cyclic pain which almost drove me crazy. I had always suffered strong period pain, but these “dry periods” were the worst I have ever been through in my entire life.

Once a month my gyn tested my hormones, without abnormal results, to her mind I was in great health. She didn’t find any reason for having amenorrhoea and my pain and told me it is “psychological”. In April 2001 she sent me to the University Medical Centre. There I was diagnosed for “Asherman's Syndrome” which I had never heard before. They told me not to have any children ever, I should be satisfied with the 2 children I already have. They may be able to do a hysteroscopy but that wouldn’t really change anything, and it would be a very difficult surgery anyway. For the pain I was recommended to take medicine. Why not do a hysterectomy, then everything would be ok, the doctor suggested seriously…

At home I checked the computer and looked everything up for “Asherman’s Syndrome”. I have contacted many doctors in the internet but didn’t find satisfying answers. AS seemed to be an empty paper in medicine and above that something so rare that nobody knew about it not to mention even treating it.

By accident I found through an American yahoo website the international Asherman site. I subscribed the group – and hold on, there was another German in it. With her help I got the address of an Asherman’s specialist close to where I live.

In May 2001 he performed an operative hysteroscopy, diagnosis: AS, adhesions were easily removed but I only had two little islets of endometrium left in the tubal area. The doctor presumed that I must have had little periods because of the closed fundus they couldn’t flow. This was probably the reason of having strong pain; he presumed that little blood went into the abdominal cavity.

After the surgery I took hormones for 3 months to stimulate the growth of endometrium and to avoid new adhesions. Then I got normal periods again for 3-5 days with normal cyclic pain.

Meanwhile I looked up the medical files of the hospital and also the ones of my gyn and had made copies. And I found something incredible: in the letter that my gyn got from the hospital after the D&C in 1997 there stood in big letters: HAVE ASHERMAN! So they suspected the case of Asherman already in 1997, and still nobody knew…I was really desperate: AS seemed to be a rare disease that nobody took it into consideration…

And surprise! In February 2002 I got pregnant again. Since I didn’t get to have a control diagnostic hysteroscopy nobody knew how much lining had built up and if any adhesions had reformed again.

It was a high risk pregnancy! I had to get checked by my gyn every week. Until august 2002 everything seemed to be ok. In June I went to a special pre-examination at another University Medical Centre. They didn’t find anything to concern about, except for the possibility of Trisomie 21 which wouldn’t have mattered to me.

Being 26 weeks pregnant in august I woke up one morning, had to go to the toilet – and everything was full of blood! There hadn’t been any warning signs, I didn’t have pain, no cramping, just a heavy haemorrhage. After going to the hospital immediately they saw that the whole uterine cavity was covered with a thin placenta like a bag opened on the top, even the cervix was blocked by the placenta. They called it complete placenta previa. This was the reason for the strong bleeding. Unbelievable! Neither the gyn nor the doctors in the University Medical Centre had recognized it. One week of strict bedrest, tocolytics (to prevent contractions) and steroids for the lung maturity of the baby followed. Then I was told to come back in the 36th week of pregnancy to have a c-section.

The doctor in the hospital doing the US had made an additional diagnosis: “Vasa Previa” (VP) and wanted to keep me in hospital.

Vasa previa is a rarely (1:3000) reported condition in which fetal blood vessel(s) from the placenta or umbilical cord crosses the entrance to the birth canal, beneath the baby. The condition has a high fetal mortality rate (almost 100% if undiagnosed, once diagnosed it is just the opposite!). This can be attributed to rapid fetal exsanguinations resulting from the vessels tearing when the cervix dilates, membranes rupture or if the vessels become pinched off as they are compressed between the baby and the walls of the birth canal. Vasa previa can result from low-lying placenta or placenta previa, where the placenta is in front of the birth canal.

VP can be detected during pregnancy with use of transvaginal sonography, preferably in combination with colour Doppler. Women with the above risk factors (and of course AS patients!!) should have this test to rule out vasa previa.

At home again I searched through the internet – successfully, I found an international group helping people dealing with VP. I went back to stay in hospital on my own request because of the information the group had given me. There I stayed until the end of October being watched 24 hours. I have had several bleedings caused by the placenta previa, not by VP. In the mid-October (34 w) I started to have a very heavy bleeding, an emergency c-section was performed within 5 minutes. The baby’s body was kind of blue (lack of oxygen), but besides that it was healthy. Afterwards the doctor told me the baby wouldn’t have had a chance to live if I would have stayed at home in the first place. Also I would have had a risk of life. 20 hours after delivery I was still bleeding so hard that the doctors were thinking about a hysterectomy. But I was lucky, the bleeding stopped so they didn’t need to. Two weeks later I was able to go home.

The final diagnosis was: placenta accreta and increta, that means compared to a normal placenta mine was huge but thin and has therefore grown into the uterine walls. For this reason I had another D&C after the c-section. For months I had to go to this hospital to look for retained placenta pieces, but fortunately they didn’t find any. These days I have a normal cycle, normal cyclic pain. Because of my history I was told not to become pregnant anymore again (too many risks…).

I am very thankful and happy that we had the opportunity to have another healthy and beautiful child. Especially I want to thank the wonderful women in this AS group who have been so encouraging and have given me so much information. Also I would like to thank the women in the VP group! The first made the pregnancy possible, the last have saved my baby’s life!!

I hope that many women find help through this wonderful site.


Relevant Links

International Vasa Previa Foundation

Just What is Vasa Previa?

French version of this story | German version of this story

International Ashermans Association

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