Contribute $ to fibroid research/ what do we need studied?

So what if you want to help give money to support firbroid research? Here are some ideas based on my research.

Brigham and Women's Hospital Fibroid Research Center is a possibility, they are doing the sister study and many others -- exciting stuff. I gave money last year to a specific researcher at the University of Toronto, Galene Pron, Ph.D., who is studying fibroid embolization and fertility.

I did a search on Yahoo of the words "fibroid research" and got some interesting results as well. You also can search through the PubMed site or anywhere online and see what research has been done and contact the researchers directly if they provide email addresses.

Also the March of Dimes is doing a push again premature delivery of infants but they aren't talking about fibroids. We might be able to help drive the point home by sending comments and cash at them.

Oh, by the way, this reminds me that I was in touch with the Women's Clinical Research Center here in Seattle and suggested some study ideas to them. They evidently are only doing pharmaceutical industry funded studies which irked me. Here is a list of the things I sent to them:

What happens to fibroids after menopause? Anecdotally they are supposed to shrink but there is no research evidence to refer to.

I would love to see a study that would help get women in for a routine ultrasound at age 25 and then 30-32 to help catch fibroids early since pelvic exams are often useless.

How about diet/dietary changes and how that affects growth? I think that stress and restrictive eating contributed to my fibroid growth.

What hormonal profiles and body types are linked with fibroid growth.

What about pain from fibroids – I have it but it isn't my fibroid that is hurting me, it is adjacent. I'd love to see imaging that would demonstrate what exactly is hurting. Lots of doctors dismiss this type of pain.

What about a comparison of waiting until menopause for symptoms to recede versus having a hysterectomy on quality of life.

In reading this study report, Myomectomy: a retrospective study to examine reproductive performance before and after surgery (http://humrep.oupjournals.org/cgi/content/full/14/7/1735),
I noted the following mentions of incomplete research
on the topic:

"Many reports have considered intramural fibroids and subserosal fibroids as a single group, and little attempt has been made to analyse the two groups separately. However, it is possible that the impact of intramural fibroids on reproductive outcome is quite different to that of subserosal fibroids."

"few studies have considered the reproductive performance prior to myomectomy, including the presence of infertility and miscarriage, and hence have not examined how myomectomy alters the reproductive performance."

"there are no prospective data to suggest whether or not intramural or subserosal fibroids increase the rate of pregnancy loss, and to what extent they are the cause of recurrent miscarriage"

"The value of myomectomy for subserosal fibroid is a particularly controversial issue. Our series included 10 cases whose outcome appeared encouraging (conception rate, 80%). However, its effect upon the rate of pregnancy loss requires a much larger observational or randomized control study."

"In our study the reproductive outcomes before and after myomectomy were compared and the subjects did not undergo myomectomy as part of a prospective randomized controlled trial. So far, no such trial has examined reproductive outcome following myomectomy. Until a multicentre study has been carried out, the only available, retrospective, data suggest that myomectomy may improve reproductive outcome."


As a patient I have been told, though I have been unable to find research that backs up these assertions, that:

* c-section will be required post myomectomy

* doctor would be unwilling to work with me as a fertility patient unless I have a myomectomy