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Renee's Story

In May of 2003, I became pregnant with our second child. My husband and I were thrilled, and then later shocked when I had a miscarriage at 7 weeks. I never considered that something like that would happen to me. Little did I know what else was in store. I had not yet been to the obstetrician, and when I bled so heavily I knew I had miscarried, so I never considered going in for an examination.

After a few more weeks, I still had the symptoms of early pregnancy, namely nausea. I knew I couldn’t be pregnant, but could not explain these symptoms. So I went in to see the OB/GYN. At that visit an ultrasound confirmed the miscarriage, but also revealed retained tissue. I was nervous about having a D&C, and wrongly figured that nature would take care of itself and waited another week for the uterus to expel itself naturally. But when that didn’t happen, the doctor insisted that I get a D&C. I was told that a D&C carried the risks of any surgery, but specifically the risk of puncturing the uterus. That was all, and I didn’t think that was likely to happen.

Although I was nervous, the D&C went very well for me. I felt great immediately afterward and recovered quickly. I wondered why I had waited. This was in July.

I had never been told when to expect a period to return. I chart my temperatures regularly, and noticed the ovulatory temperature pattern returning, although not as clear or with as long a luteal phase as normal. But no blood. However, even though I was a little suspicious about what was going on in my body, I didn’t worry too much since I knew that sometimes it takes the body a while to return to normal after a pregnancy. However, after my cycles (according to the temperature patterns) seemed to be getting more definite, and I would suffer cramping like I hadn’t since I was a teenager, still without bleeding, I started to worry. I took pregnancy tests to be sure I hadn’t conceived again, but they were negative. So, after four cycles, I called the doctor who recommended I come in for an examination. This was in November.

The ultrasound showed a normal uterus and ovaries, which was a relief. Then I was put on one cycle of hormones to try and stimulate a period. This is the part of the story where I wish I had taken a little be more control. I knew that I was cycling because of my temperatures. So, I could have skipped that step. But the doctor was following the normal protocol, and when that cycle produced no bleeding, she immediately suspected scarring. She told me she would discuss my case with a specialist and call me back.

When she called, she told me that both she and the other doctor, a reproductive endocrinologist, suspected Asherman’s Syndrome. They wanted me to come to the RE for an SHG, and possibly an HSG later. (Later I found out these were diagnostic procedures but not treatments—even though my doctor had made it sound as if that might be all I needed.) I immediately made the appointment, but now that I had a name was able to do some searching on the internet. I found this group, which provided so many more details about Asherman’s, and convinced me this is what I had.

Meanwhile, I got the paperwork in the mail from the RE. As I started to fill it out, I got suspicious from the nature of the questions that they were going to treat me as a regular infertility case and start from ground zero. I knew I did not want to start over, and I never considered that I was infertile. Everything worked correctly, I just had some blockage. I was afraid they would do all sorts of diagnostic tests and put me on hormones again, when I was already convinced that I had the diagnosis—Asherman’s was the only thing that made sense. It just did not feel right for me to go to this RE, so I joined the group to get a look at the A-list recommended physicians for treating Asherman’s. And once I read through the list and the messages from some of the other ladies, I had hope that I could be cured. So, I cancelled my appointment with the RE, and proceeded with plans to see an Asherman’s specialist who was out of the state. This was in February 2004.

The doctor was out of the office for several weeks, and I was not able to make an appointment with him for an operative hysteroscopy until April. I was a bit disgusted with myself for waiting so long to call the original doctor, and nervous that the tissue would be harder to remove after so much time had passed. However, I was immediately at ease in his office. I had previously sent a letter of introduction and my history. He was fully prepared and when we sat down he explained he thought it was a clear cut case. He was certain that the scarring was in the bottom of the uterus, and turned out to be absolutely correct. He was thrilled that I had been having monthly cramping, since that signaled an endometrium.

The procedure seemed simple for me. A local anesthetic was used, and I could watch everything on a TV screen. It seemed like just a few snips and everything was over. Of course, that might have been the drugs! He noted that I had an endometrial lining of 3mm.

In May, my dear friend Aunt Flo came to visit after an absence of over a year. She only stayed a day, but I was glad to see her. And the cramping was completely gone.

My husband and I had been planning on waiting one more cycle before trying to conceive again, but somehow that didn’t work out, and we conceived that month. As I write this I am 16 weeks pregnant. Mind you, I had a thin lining, confirmed by the small amount of bleeding.

If there is one bit of advice I might give, it is pay attention to what your body is saying. I really should have gone to see the doctor sooner instead of waiting 4 months. That being said, I know some women have waited years before getting treatment. That is probably because they did not have the information they needed.

Secondly, be your own advocate. I got some resistance from my family and my doctor for going right to a specialist instead of an RE. I know some REs are very capable, and mine might have been too, but the choice for me was to get treatment, not more tests. I know that I did the right thing.

Lastly, don’t give up hope. The initial diagnosis of Asherman’s seems overwhelming I know. But just be thankful you live in this time when so much information is available to you to educate yourself, and also that medical technology has advanced so far. Some very severe cases have been cured, and yours could be next.

Renee

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