Gwen's Story

My daughter was born in September of 1997 after a very quick and easy conception and an uneventful pregnancy. Her delivery, however, was not as uneventful, nor as easy.

My contractions were "inefficient" and I was put on Pitocin almost immediately after arriving at the hospital. After 8 hours of Pitocin I had still only dilated to 1 cm so they "upped" my dose. I was contracting quite literally every 60 seconds after the increase in the medication which was completely exhausting. Finally, after 22 hours of Pitocin, my daughter was born after about only 40 minutes of pushing. I was so happy!

I remember the joy of having her and seeing her sweet little face being interrupted by my doctor who was trying to deliver the placenta without any success. She was pushing and pulling and twisting my body every which way. She increased my Pitocin dose to try to increase the strength of the contractions to force the placenta out but it wouldn't budge. I was bleeding pretty heavily and the placenta still wasn't moving so finally, my doctor manually removed the placenta by quite literally sticking what seemed like her entire arm inside of me and wrenching it out. It felt like I was being ripped in two, the pain was much worse than the actual delivery itself. I remember thinking "Dear God!" During this removal I also went into an abnormal heart rhythm called ventricular tachycardia which has never gone away - I still experience it at least once a week.
Once she had forcibly pulled the placenta out, I watched her reassemble it on a big metal tray near my bedside; she said she was checking for any missing pieces. By now the nurses were "massaging" my abdomen to help my uterus shrink back down and to help slow the bleeding. In truth, it felt like they were pounding and stomping on me they were pushing so hard and I was having terrible shaking chills.
Finally, the bleeding slowed and the doctor pronounced my placenta all "present and accounted for". I ran a fever the following day which I was told was normal and I was released to go home 36 hours after giving birth.

At home with our new baby we were worried because she wasn't nursing well at all. The pediatrician assured us that once my milk "came in" all would be fine. Well, it wasn't. My milk never came in - something I now know to be due to the piece of placenta that was stuck inside of my uterus. We tried for a frustrating week to feed our new daughter and all she did was cry. She would latch-on and nurse for about 3 minutes and then detach and cry and cry. We couldn't figure out why. We had repeated appointments with the lactation consultant and the pediatrician to figure out what was wrong but they reported we were doing everything right and just needed to be patient.
Finally, after a week of this torture, our daughter developed jaundice and we had to start her on formula to help resolve the excess Bilirubin that had built up in her little system.
I invested in a hospital-grade breast pump and quickly discovered the problem, I was only producing maybe 2 ounces of milk at a sitting, and that was out of both breasts! My poor baby was crying because she was hungry and I had had no idea! I felt terrible that I had let her go all week barely getting any nourishment from me....I still feel terrible about this first week of her life.
I was labeled a "bad producer" of breast milk and told that some women just don't produce much milk. No one ever suggested that I might have some placenta left behind that was keeping my body from realizing it was time to start producing milk.
I had moderate bleeding after birth that just would not stop. At my 6 week post-partum appointment my doctor was a bit surprised that I was still bleeding as heavily as I was but she told me that some women just bleed longer than others. Finally, at 11 weeks post-partum, I went to see a new doctor who performed and ultrasound and found retained placenta which was removed the same day via emergency D&C.

Over the next few months I nursed our little one as well as I could. She got her real nourishment from formula and only "snacked" on the meager supply of milk I had for her. Finally, when she was 8 months old I stopped nursing which was a very easy transition as I stopped producing any milk almost the same day I stopped nursing.
I waited for a period to arrive but none did. I had not had periods while nursing but was told this was expected. I know now that given the tiny amount of milk I was producing this wasn't right either. I should have started menstruating a few months after birth. I went to see my new OB/GYN about my lack of periods and she was unconcerned telling me that because I was on Micronor, a Progesterone-only birth control pill it was entirely normal not to menstruate. She switched me to a low-estrogen pill and still I had no periods and still she told me this was perfectly normal and not to worry about it.
Finally, just after our daughter turned 2 we decided to stop all birth control and try for our second child. I stopped the birth control pills and waited for a period but none came. Three months went by and I went to see my primary care doctor who assured me that it can take a while for your body to return to normal after birth control pills and I shouldn't worry. Three more months went by and I went to a new OB/GYN who was suprised by my lack of periods but also assured me it was probably nothing. He gave me a round of Provera to induce a period and none came.
By this point, I was doing some Internet research and had learned enough about Asherman's to suspect that I might have it. I mentioned this to my new doctor who told me that although it was theoretically possible, he doubted I had Asherman's because it was very rare. He suspected, rather, that I had hypothalamic amenorrhea, a syndrome caused by damage to the hypothalmus as a result of excessive post-partum bleeding.
My OB referred me to an RE (reproductive endocrinologist) who listened to my history for 5 minutes and without even examining me pronounced that he was almost certain I had Asherman's. Two very painful attempts at unsuccessful hysterosalpingograms confirmed that my uterus was entirely adhesed with scar tissue and that I had literally an "obliterated" uterine cavity with no open space left. I was devastated. I could not stop crying. I told my husband he should divorce me and find a new wife with a functional uterus. I felt like I was no longer a "real" woman without a functional uterus. I cried for days, it was awful.

This RE, who is very well-known for his work in assisted reproduction and has appeared on the likes of Good Morning America and such, performed three surgeries on me. The first was attempted lysis of adhesions using gynecoradiologic technique. After this first lysis the RE placed an IUD in my uterine cavity to keep it open and I had a period and was thrilled! He removed the IUD and announced that we could try to conceive as soon as I had my next period. Well, that period never arrived as the scar tissue reformed as soon as the IUD was removed. I went through two more surgeries with this doctor including an operative hysteroscopy, before he announced that I was inoperable. He told me to look for a surrogate or to consider adoption. He told me I had "no living endometrium" and would never carry another child. This was in late January of 2001. In March of that year, I suddenly, and unexpectedly, had a period! I wondered, how can I have a period if I have "no living endometrium"? After urging from the wonderful women of this group, I decided to seek-out a second opinion and went to see an "A-list" doctor, a uterine surgeon who specializes in the treatment of Asherman's.
The doctor I saw turned out to be nothing short of a miracle worker for me. After my first surgery with him my uterine cavity was restored to roughly 70% of its usual size. He asked to perform one more surgery to see if we could recover the remaining 30% of my cavity. At this point I had had 4 surgeries in 9 months. I was literally starting to have nightmares about being tied-down and poked with needles. I was so sick of surgery and doctors and hospitals and drugs. I really wasn't sure that I could handle any more surgery but knew I couldn't live with the doubt if I didn't do everything within my power to repair my body. Luckily, one final surgery restored my uterus to 100% of it normal size.

I am now scar-free and we are trying to conceive our second child. In fact, I have been pregnant twice since September of 2001 but neither pregnancy has made it to term, both for reasons that have been deemed unrelated to Asherman's so we still hold out hope that the third time will be the charm for us and we will finally be able to add to our family.
My daughter who is now 4-1/2 asks me every day when she can have a brother or sister. She has started talking about how she is lonely, how she wishes she had someone to play with other than her father and I. It breaks my heart when she points out all of her friends who have siblings and asks me why she doesn't have one. All I can tell her is that we are hoping right along with her that we will be blessed with another child. All we can do is hope now.
But for a long time we didn't even have hope. If not for the hands of the highly skilled surgeon "A-list" that finally repaired my "obliterated" uterine cavity, we wouldn't have any hope at all of another biological child. I am so grateful to him and to the wonderful women of this group for their help in restoring not only my uterus, but my spirit as well.


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