Like all of you here, I am sharing the same symptoms, medical tests/experiences, and lack of information... and can echo how nice it was to find so many women talking about it! By the same token, I can also echo your frustration!!!! In an effort to sound an alarm, I wrote this letter to the two main OB/GYN societies in the U.S... I just thought to share it with you (I hope you all don't mind that I included a link to this forum!) I don't expect an answer, but if I hear one I will certainly post again!
"To Whom It May Concern at
The American Congress of Obstetrics and Gynecologists
and The American Gynecological and Obstetrical Society,
Thank you so much for taking the time to read this letter and for providing any assistance or information you may have to offer! I will be as brief as I can be.
In seeking answers to my own persistent symptoms of unusual vaginal bleeding over the last few years (with three different doctors) and finding no explanations, I turned, as many women do, to online sources for OB/GYN information. In doing so, I discovered hundreds of women - of all ages and stages, with or without children - talking about exactly the same symptoms of a particular kind of vaginal bleeding and how they have all been "living with it" without accurate diagnoses for years. I know that the internet is not necessarily a reliable source; however, I was mainly struck by how many of us describe the exact same experience - and the exact same frustration at finding no clear answers or solutions from our doctors. They seem to be STUMPED! (Here is one example of such a discussion:
http://www.medhelp.org/posts/Womens-Health/Vaginal-bleeding-after-during-sex-and-with-a-bowel-movement/show/31554) So I am reaching out to you, as leaders in the OB/GYN profession, to seek guidance and some insight into the medical discussion of this topic. I'm sure for every woman who has shared their symptoms with their doctors or online, there are many others who have not.
Most commonly, this vaginal bleeding occurs at the same time in our cycles - after ovulation, during the luteal phase (beginning a few days up to 2 weeks prior to menstration and continuing until menstrual bleeding) - and can be seen during bowel movements or after/during sex. The bleeding is most certainly vaginal, either bright bright red and dripping into the toilet or old and brown when we wipe. For most of us, we have regular menstration and this is distinct from that. Some have experienced pain along with this bleeding, but not all. In addition to these shared symptoms, we all have one other important thing in common; our doctors have tried out many possibilities and found "NOTHING WRONG." Almost all of us have been to multiple GP's and OB/GYN's (in addition to GE's) and have had a whole range diagnostic procedures, thankfully ruling out cervical and uterine cancers, polyps, fibroid tumors, endomedriosis (some have it; most do not), vagicitis, and everything else under the sun. Some of us have been told we might have things like "disorganized endometrium", "friable cervix", "Tilted Uterus", "Hemorrhagic Cysts" - with procedures suggested that are more frightening than the original symptoms. Often these procedures - including hysterectomy - fail to stop the bleeding. ALL of us have been on Oral Contraceptives (pill, nuvaring, IUD, etc.) and the onset of these symptoms begin to occur while taking them or after we stop. Some women have even being prescribed them to help with these symptoms, with no result. A few women seem to have had some success monitoring their hormone levels and increasing their body's natural production of progesterone (through natural creams, synthetic depositories, herbal medicines, and acupuncture) - learning from some wisdom in fertility treatments. But many others have said that their doctors have refused to test their hormone levels. (For instance, my doctor did everything she could think of and then told me it was probably "hormonal" and, basically, to live with it (though my uterus is a little tilted.) Others had doctors who were flat out dismissive, never heard of anything like it, or thought they were inventing it.)) Some have begun to try food allergies and to change their diets. Results of all of this pending.
Obviously, such cyclical and frequent vaginal bleeding interferes with our daily functioning, sexual and relationship health, and stress levels. Additionally, we have many fears about - and many different success rates of - healthy conception and delivery. Most importantly, all the women sharing their stories have also expressed extreme disappointment and frustration in the lack of expertise and knowledge about the topic by medical professionals, even when their symptoms have persisted for many years (in some cases decades). It is possible that many OB/GYNs have seen these cases more than others, but this expertise does not seem to be widely shared. I understand that every woman's body is different, that we all have different experiences/biologies/genetics/personal histories, and that there may be many factors. However, it is surprising that our stories are all the same, and we are still left with so many questions. Perhaps there is something broader going on - something environmental, dietary, or a shared side effect? At the very least, if we had the information, we could made more responsible decisions.
Can you tell me/us: Is this topic being raised in discussion between OB/GYN doctors? Is there any current research on these symptoms and possible causes? Is anyone sounding any alarms about birth control, environmental toxins, food industry changes, or other hard-to-pinpoint possible causes of unusual vaginal bleeding late in the menstrual cycle? (Is anyone presenting anything on the topic at your upcoming Conference in Chicago?) If so, I hope that doctors will begin to share their knowledge and disseminate information more widely, so that the women going through this can feel more understood, listened to, cared for, taken seriously, and brought back to normal reproductive and sexual health - the main goals of your practices.
Thank you so much for reading, and I hope to hear from you soon!"
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