Thursday, March 06, 2008

Lonely Tonight?

I'm not able to pay as much attention to this site as I once was -- motherhood has, blissfully, pulled me away from the chasm of infertility. I still read the comments you leave, but I have no answers other than those already listed below.

And having a rare condition sometimes means there just are no answers.

If you have started a blog and want to let other women with this condition know about it, please leave the address in the comment section here. I'll do my best to update this list periodically, but I can't make any promises that it will happen often. Superman, who is dressed as Spiderman and has a pirate hat and wants to eat cookies RIGHT NOW, MOMMY!!! is keeping me fully occupied these days.

T-Shapers on the Net:

Amy (miscarriage, male factor, and a sense of humor)
Chez Miscarriage (gone, but never forgotten)
Holding Pattern (now closed)
Megan (cool art, with a side of "T")
Sunbeam (Guatemalan adoption)
Wendy (Boobs, thongs, and a designer uterus)
Uterine Wars (self-promoting ho)

Saturday, June 30, 2007

Technical Difficulties

Ooops.

I got tired of the old format of this site, and when I picked a new template I apparently deleted the forum. So, um, sorry....

I'll try to get a new forum up and running soon. This site is pretty quiet, but I know that it means a lot to many women to know that they are not alone when they get the diagnosis that they have a t-shaped uterus. I urge all of you who are newly diagnosed to join the Yahoo! Mullerian Anomalies group. You need answers, I know, but most of all, you need support.

You are not alone.

Friday, September 17, 2004

The Metroplasty Debate

Many of you find this site out of desperation -- you, your wife, or your daughter has been given this diagnosis, patted on the head, and sent out the door. I know, I've been there. The past few months more people than I ever imagined have come out of the woodwork to say "whoa, I have this too." It's thrilling to know I'm not alone, and so sad to realize others are suffering with this.

The most common questions I get are (1) can anything be done about this? and (2) is there any hope? The answer to both of these is "yes."

In 1977, the "definitive" article on the t-shaped uterus was published, and in it the following very bold, unsupported statement was made: Surgical correction (of these anomalies) appears totally impractical and would probably result in greater uterine deformity than was initially present. [Kaufman et al. (P. 11) -- Upper Genital Tract Changes Associated With Exposure In Utero to DES, Am. J. Obstet Gynecol 1977; 128:51-9].

For nearly SIXTEEN years no one questioned this statement. Then, in 1993 two doctors at the University of Minnesota did a study on a surgical technique they were pioneering for the treatment of the T-shaped anomaly. It was called "hysteroscopic metroplasty," and during the procedure the shape of the uterus was changed to one that was considered more normal. Of the eight women who underwent the procedure, four successfully delivered children. Of the two women in the study whose only problem was recurrent miscarriage (no secondary infertility), both successfully carried babies to term.

I looked up the lead author of the study and sent him an email, asking him if he still performed this surgery, if he had good results from it, if anyone else had done a follow up study, every question I could think to ask. And then, two weeks later, I got the following reply:



I have done a number of these procedures since our article was published and believe my original impression holds, i.e. if the problem is pregnancy loss the surgery helps. Unfortunately I really haven't kept data as I've moved from a private practice back to the University of Mn. There is one other publication on this surgery in Human Reproduction, vol 13, 2751-1755, 1998. They too had good results. Of 15 women with prior pregnancy loss, there had been 1 term delivery, 27 early losses, 2 later losses and 3 ectopics. Eight of the 15 again conceived soon after the surgery and 7 went to term. One had an early loss. This was a French study. Human Reproduction is the European infertility journal. This problem is one which we will fortunately be seeing less of as the years since the last DES exposures go by. There are, however still women with a uterine anomaly similar to DES exposure who have no history of such exposure. If you wish, I'd happy to review you hysterosalpingogram (HSG) and let you know if I think I can do anything for you.

And, of course, I started crying. I forwarded the message to my husband, who sent me back a link to the journal article Dr. Expert mentioned. The miscarriage rate in the French study went from 88% to 12.5% -- the term delivery rate from 3% up to 87.5%.

I emailed Dr. Expert back, telling him I was forwarding my HSG films and asking him to describe the procedure to me. This is what he said:


I will use the same technique that the French used as my original equipment is no longer available. The recovery is minimal. Following the procedure I do put a balloon in the uterus. This needs to be deflated after 2 days and removed after 10 days. Both of these (deflation and removal) take about 5 min. and can be done where you live. I expect you may return home the day after surgery and return to work that day if you get an early flight out of MPLS. You will be on hormonal therapy for 1 month following the procedure. After the bleeding which follows the hormonal withdrawal I suggest you have another HSG and if that looks improved you may try to become pregnant in that cycle.

After reviewing my HSG, Dr. Expert determined I am not a metroplasty candidate. My uterus is t-shaped, but not so badly that it will benefit from surgery. He wrote:

I guess I am an optimist, but epidemiological studies of women with recurrent pregnancy losses would indicate that even after three losses the chance of the next pregnancy being successful is about 60% and in some studies higher.

A word of caution about the metroplasty surgery. Because the number of patients in these studies has been small (um, because this condition is rare!) some doctors have questioned the efficacy of the procedure. The surgery is not without risk, even though it seems minimally invasive. If you want more information about the procedure, you can read about it on Pub-Med, or you can e-mail me for Dr. Expert's address.

So, in conclusion, yes, there is a surgery available for this condition, and for women who are repeat miscarriers it seems to give good results. For those of us who are not metroplasty candidates, the odds are still in our favor for a live birth. I wish all of you the best.

Wednesday, June 30, 2004

My HSG Showing T-Shaped Uterus

Sunday, June 13, 2004

What Is This Place?

In November, 2003, I was diagnosed with a t-shaped uterus, after losing my second pregnancy. My doctor was vague about what effect, if any, this anomaly would have on my reproductive ability. After my third pregnancy failed, I got proactive, and tried to learn as much as I could about this defect. This site is the result of that knowledge; it is designed to be a springboard for other women with the same uterine anomaly.

A t-shaped uterus is a defect in the anatomy of the uterus. The inside, which is normally shaped like a triangle, instead resembles the letter "T" (hence the oh so clever name). This anomaly is considered to be very rare, and was attributed to pre-natal exposure to a drug known as diethylstilbestrol (DES). DES caused reproductive anomalies in both male and female offspring, as well as an increased risk of cancer. It was banned in the U.S. in 1971, and women exposed to DES are nearing the end of their reproductive years. The impetus to study the classic "t-shaped" uterus is thus slowly waning.

However, women born after 1971 are being diagnosed with a t-shaped uterus. It is becoming apparent that this defect does occur naturally, and that the need to study it's effect on reproduction is not going to end. Most of the literature on this anomaly fails to even recognize that it can occur naturally, and the few articles that do note it's natural occurrence acknowledge that no one knows if the results of the DES research are even applicable to non-DES exposed women. This site is designed to bring together the women with this condition and to provide them with what little information is out there, in the hopes that by sharing our stories and what we have learned we can compel the medical community to study the best treatment options for our condition. Please post comments*, share your stories, and let us know of new articles or links that you come across.

* If you are not a member of Blogger, you can post as "Anonymous," or e-mail me at uterinewars@hotmail.com