Late Thursday night a couple weeks ago, as is my norm, I was reading blogs. Most people sleep late at night, I read blogs. During that particular reading session, I came across a link to a bioscience company who is conducting a study on women who have been surgically diagnosed with the disease of endometriosis.
One of the single things in my life that has impacted me the most, has been that disease. There has been nothing, absolutely nothing, that has left me feeling more helpless and more like a freak show, than endometriosis. It won’t kill me, but the unpredictable pain, hormonal swings and resulting depression, oftentimes made me wish I were dead.
I don’t say that lightly.
It is one of the few causes I support financially every year. I suppose like anyone who suffers from something for which there is no cure, it has become my passion to support companies who research possible cures. For that reason, I registered around midnight that night with that company to be considered as a participant in their study.
I didn’t expect to ever hear from them.
Imagine my surprise when I discovered a voice mail left by a lady from their company late Friday night, less than 24 hours after I’d registered, requesting a return phone call. Imagine my continued surprise when I returned the call Saturday at noon AND SHE ANSWERED HER PHONE. Instead of introducing myself, I said, “My goodness, but you work a lot of hours!” To which she replied, “I guess you’re calling about the study… yes, the response has been absolutely overwhelming. Hundreds of women are coming forward to try and help. It’s not about compensation, we offer none. It’s about helping the younger generations that have this disease.” I told her that’s exactly why I was calling.
She asked several screening questions and then told me that she’d like to send out a packet, which requests my medical records concerning the diagnosis of and surgery for endometriosis. She said they also request some genealogical information, as they have learned that endometriosis can be passed down through the mother or the father. And, lastly, I would need to provide a sample of my saliva for DNA testing — they are looking for a commonality in all the DNA samples they are collecting. Something that they can eventually screen in DNA so that diagnosis of endometriosis can be made through a simple saliva test, rather than invasive surgery.
How cool would that be? A simple saliva test.
My endometriosis affects my intestinal system, so I spent a lot of time seeing gastroenterologists and having tests performed on my bowels. Today, knowing what the problem is, it’s quite apparent that the doctors spent a whole lot of time looking up the wrong hole.
Did you know that endometriosis has been found in little girls who’ve not even had their first period. Did you know that the average period of time, from the first complaint to actual diagnosis of endometriosis, is 10 years? Did you know that what women hear from their doctors until diagnosis is given, are things like, “it’s normal to have difficult periods”, or “that’s normal for some women, it’s just how you’re made,” or “it’s all stress related, you need to learn how to manage stress.”
I sent my packet off today.
The way I’ve got it figured, either I’ll be a tiny, tiny part (1 of 5,000) in helping future generations of girls and women suffer less, or they’ll be creating a clone of me from my DNA.
Probably the latter, because I’m just that cool.
Jammie J's Quest 
This is so very interesting my dear. I hope your participation in this study really helps lots of people—including you.
Many many years ago, while my mother was dying in the Hospital I had all sorts of horrific symptoms..(Some of which I still get…) and after she died, my sister and her husband and I decided to take a trip to the Caribbean to recover and rest…..But I still felt horrible. I went to my sisters GYN who examined me and it was one of the most painful exams I had ever had in my whole life. He said I had endo. and should be operated on immediately! I was freaked out. After vigiling at the Hospital for months, etc. I couldn’t face even the thought of this. I told him I wanted to get a second opiniuon. He was a little taken aback but wrote down Endometriosus with a Question Mark…I got a referrel of a wonderful GYN from my mothers doctor and Jammie, I never even felt him examining me. Truthfully. I said to his nurse, “When is he going to actually examine me?” She said.,..”Oh, he’s done. He already did it.” It was unbelieveable to me… and she said, “He is known for being incredibly gentle.”
When I went to speak with him in his office after getting dressed, he said he disagreed with the other doctor and felt that everrything I was suffering from was stress related because of what I had just been through. He told me to go on the trip and rest and relax and whenever I got back to California..(This was in NYC) to go see my own GYN and he was sure it would all be fine.
I chose to believe him MOSTLY because I never felt the examination and the other doctor was so damn rough and too ready to cut for my taste!
Doctor #2 was correct. I did NOT have Endo. But I know why Doctor #1 thought so. The pain was excrutiating and I too had intestinal problems. I am deeply grateful that mine was NOT the awfulness of Endometriosis. I feel for you, my dear, and wish you ALL the BEST!
Jammie J. replies:
That is quite a story and I’m so sorry you had to go through that! But I must say, there is no way a doctor can diagnose endometriosis from a vaginal exam… not sure what you had done, exactly. They can suspect endo from seeing things on ultrasounds or CT scans, but even that isn’t an official diagnosis. Currently, the only way to officially diagnose endometriosis is through surgery, which is why a saliva DNA test would be so cool.
For my particular situation, when my endo first flared in 1993, the doctors ran all sorts of intestinal tests but never once suggested I go see a gynecologist. I didn’t have my first GYN exam until I was 26 years old, if you can believe that.
Yay for you! I am so glad you are doing this.
Jammie J. replies:
I really hope they’re able to find some commonality in all the DNA they collect. That would be something…
I think cloning you would be a great idea. I’d love to have one of you in my neighborhood.
Jammie J. replies:
My clone would love to be in your neighborhood! 🙂
Good for you! What a wonderful thing to do : )
Jammie J. replies:
If nothing else, at least it makes me feel as if all the crap endo has put me through might actually do something for someone else.
I don’t remember if I told you before but all that I ever knew about endo was from hearing second hand accounts that went something like this: “My sister was diagnosed with endometriosis and all you can do is either get pregnant or have a hysterectomy, so she’s having another baby.” I heard that several times from different people. Is that even true?
I hope this study helps everyone.
Jammie J. replies:
Endometriosis is a disease that has no cure, mostly because they don’t know what causes it. They’ve speculated about this or that, but it’s becoming more and more apparent that the disease is likely genetic. What they do know is that hormones cause its state to fluctuate. Estrogen causes it to swell and progress, progesterone causes it to go dormant (for lack of a better word).
What that means is they have discovered that controlling endo is a hormone balancing game. Pregnancy is a progesterone dominant state. Going on birth control pills continuously does not allow estrogen to take control. Taking lupron results in false menopause, which is a progesterone dominant state.
Any doctor who recommends a hysterectomy as a cure for endometriosis should have their license to practice medicine taken away, because having a hysterectomy only removes a woman’s uterus, it doesn’t cure endo. In addition, endo is never just on the uterus. In fact, mine was all over in my peritoneal cavity. So to “remove the offender,” so to speak, would have entailed removing my stomach, spleen, liver and intestines, as well as my uterus and ovaries. Makes no sense.
That being said, however, there are some women who have other things going on in addition to endometriosis (such as adenomyosis, fibroids, or other rapid cell changes) that could cause a doctor to be concerned and recommend a hysterectomy, but never should it be considered a “cure” for endo.
As you said, I, too, hope this study helps make sense of a senseless disease! 🙂
How soon will you find out what the results of the study are? Because I think it’d be nice to know right away if you are a part of a study that helped women, or if someone cloned you (cause I’d like my Jammie J. clone sent to me immediately, I hate waiting).
Jammie J. replies:
It’ll probably be a few years before the study is completed. I suppose most in depth studies would take at least that long and it might be ongoing for awhile.
HA! You’re funny… you know, the wait could be resolved if you just sent yourself out here!
What a great opportunity to be able to participate in this. Would you mind if I copied/pasted this post and sent it to a friend of mine who also suffers from endo? I think she would probably be interested in participating, too.
Jammie J. replies:
If you think she would be interested, by all means, give her the information she needs! For me, it makes me feel as if all the crap I’ve gone through from this disease might not be for naught, after all. Maybe it’ll make others feel that way too.
when your clone gets made, can i keep her??? i promise i’ll take good care of her! hehe. 😛
will they keep you in the loop about results and such? i know it’ll take a while, but still… it’d be interesting.
Jammie J. replies:
HA HA HA!! You’re gonna have to fight Beth for my clone. And Beth, well, she is Bad Beth and Beyond… hehehe
Ummm, I dunno. I signed up for their e-mail update list. I’m not sure what will be in them, but yeah, if they do, I’ll keep the blog posted. 🙂
I want a Jammie clone! Seriously, that is awesome that you have that kind of opportunity to move forward the research in finding a cure for endo!
Jammie J. replies:
One Jammie clone, coming right up! HA!
One tiny step forward in research is very cool.
yeah, well, i’m small, but feisty and wiry. i can take her! hehe.
Jammie J. replies:
I should have known that would be your response! 🙂