I am 35 years old, living with stage IV Endometriosis, possibly adenomyosis and struggled with infertility for almost 4 years. I also struggled with PPD and now struggle with PMDD. I am a mother to a son that was born at 18 weeks and too precious for this earth; and now a mother to a son born in August 2011. By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!

Friday, March 28, 2008

Thank goodness for the weekend!

Today was a bad day-I've been managing things okay with some anti-inflammatories and lortab. I'm looking forward to sleeping in tomorrow!! :) I'll definitely be happy to get rid of this pain for a while. Hopefully I won't be trading it for worse things. I am really hoping the add back therapy and multi's I am on will help with some of the potential side effects. If it's just too awful the first month, I won't do anymore. Can you tell I'm nervous? Just ready to stop waiting...
I haven't gotten the official results from the colonoscopy, but, it seems from what the nurse could tell from the report everything looked good "No significant abnormalities" was a good key phrase!

Thursday, March 27, 2008

Monday Monday

I'll start my treatment on Monday. keep me in your thoughts and prayers! Obviously a bit nervous!! Ready, but nervous. My cramps are pretty awful today. I've got to keep on top of the meds before they wear off and keep them in my system. Definitely tolerable...it's only really day 1 though. We'll see.

Tuesday, March 25, 2008

Complementary treatment

So, I had another visit with the homoeopathic clinic today, and, we've hammered out a plan for the Lupron, and, treatment beyond Lupron. I really like this clinic and the Dr. I am working with is great! I had already been working on some things, but, here are some of the things I am going to be working on to help lower my natural estrogen intake, and, to supplement the Lupron:
  • Fish Oil-make sure it has at least 300mg of DHA/EPA, and EPA is the most important of the two!
  • OsteoPrime multi-this is a multi type vitamin that will concentrate on bone health as I go through treatments
  • Herbal tinxture- for inflammation/gynecological health
  • Work on my diet-organic meats and dairy are important to reduce estrogens; lots of GREEN vegetables; less processed foods; cut WAY back on caffeine and cola intake
  • Castor Oil Remedy-Soak a cloth in oil, place on stomach with heat 1-2x's a week, not during menstruation
  • Reduce plastics for warm foods and water
So, these are things I can definitely do to better myself! I need to start working out more often as well. I hope that these things will help with the Lupron, my endo, and my overall health!!! Very excited about the dual coverage. :) Oh, MASSAGE is recommended too. Score. I can definitely do that!

Sunday, March 16, 2008

Restless evening

I'm guessing I'm about a week or two from my next cycle. Which means, my treatments will begin soon. I must say, I am feeling a bit anxious about it all. Tonight I am very restless-maybe that is weighing in on the back of my mind? Not sure. Some mild cramping has started up, and some strange (I'm assuming gas from the scope this past week?) pain in my lower left rib. Otherwise feeling pretty good from my colonoscopy. That definitely wasn't as scary as anticipated. Waiting for the results is more nerve racking!

Time to be settling down. I thought writing tonight might help. More as the week passes. I have a few appointments this week. I am REALLY hoping to squeeze in a massage at some point!

Thursday, March 13, 2008

Im done and home at last

The procedure was fine-the drugs they give you are good stuff. Not a BAM in your face sleep, but, very soothing. The staff there are AWESOME! But, they poked me 3 or 4 times to get an IV started. I'm going to look like someone beat me. My nurse was fabulous-very comforting!!

If I talked to the Dr., I have NO idea (we talked beforehand, but not after-he spoke with Weston). I barely remember getting home (I was asleep most of the time). Just now getting to my milk shake we picked up on the way home.

The Dr. scraped some stuff out that he wasn't sure about, and we'll get the results of that in about 2 weeks (DAYM that's a long time). He didn't think that the endo had penetrated my colon, but, it was definitely attaching on the outside (I guess it causes some type of inflammation? Wes said he said that it was pushing in?). We'll see what the lab says. he procedure was fine-the drugs they give you are good stuff. Not a BAM in your face sleep, but, very soothing. The staff there are AWESOME! But, they poked me 3 or 4 times to get an IV started. I'm going to look like someone beat me. My nurse was fabulous-very comforting!!

He's going to talk with my other Dr.'s about what's going on, and we'll go from there. I think as long as it is not causing horrid pain and everything else is working properly, there isn't going to be a need to remove it at this point. Maybe have a procedure where they can remove more from the outside, or possibly resection my colon when/if it comes down to that. I am assuming the Lupron will act to help that stuff die off too-I guess. Need to talk with the Dr. more about that later.

Glad to have that all done!! The prep was definitely the worst part, that and them trying to find a vein for the IV. I feel a bit bloated and gassy right now, which is normal. I almost threw up on the way home...or maybe I did. Not much in there though-so, it wasn't bad.

I'll anxiously be waiting on my results, and, we'll keep you updated. Just need to rest now-nite nite! No tumors though-WOOT!

They say the worst part is over

The prep solution for my colonoscopy was AWFUL. ICKY! The process itself was okay, but the solution was GROSS!!! I had the phospho-soda prep-so, I had one 1.5 oz bottle in 6 oz of liquid (ginger ale that time) at 3 PM, and another round at 8 pm (with gatorade), and LOTS of fluids in between. I also had to take two pills last night, and use an enema before I leave this morning. I'm SO ready to get this thing over with. I'm starving and nauseated (probably from hunger) and a bit nervous I must say. Although I have been comforted by everyone that has ever had one saying, "The worst part is the day before". Insert sigh of relief here. I do get nervous with IV's these days though, especially after my CT dye experience. I'm just ready to be home again home again.

Tuesday, March 11, 2008

March is Endometriosis Awareness Month

Endometriosis Research Center Celebrates Disease Awareness Throughout Month of March in Honor of Women and Girls Living with Painful Illness
Source: Endometriosis Research CenterMar 03, 2008 14:11:05

Mar 03, 2008 – Backed by formal legislation, the Endometriosis Research Center (ERC) is once again celebrating March as “Endometriosis Awareness Month” in honor of all those affected by the illness. Endometriosis is a painful reproductive and immunological disease in which tissue similar to the uterine lining (endometrium) migrates outside the uterus and implants in other areas of the body.
The disorder, for which there is no absolute cure, affects over 5.5 million women and girls in the United States alone and over 70 million more worldwide. Often stigmatized as simply “painful periods,” Endometriosis is a puzzling and widely misunderstood illness. A primary cause of chronic pelvic pain, female infertility and a myriad of related symptoms, Endometriosis is a leading cause of gynecologic surgery, including more than half of the 600,000 hysterectomies performed in the U.S. annually.
Symptoms include pelvic pain at any point in a woman or girl's menstrual cycle, infertility, pain with sexual activity, gastrointestinal difficulties, urinary tract difficulties, fatigue, allergies, and immune system dysfunction. The disease can also implant in extrapelvic areas such as the lungs, diaphragm and in rarer cases, even locations like the brain. Recent research has also shown an elevated risk of certain cancers and autoimmune disorders in those with Endometriosis, as well as malignant changes within the disease itself. Researchers remain unsure as to the definitive cause of Endometriosis, which can only be diagnosed through surgery like laparoscopy, and there is no definitive cure. Current studies indicate that genetics, immune system dysfunction or exposure to environmental toxicants may be contributing factors to disease development.
Leading experts such as Robert B. Albee, Jr., MD, FACOG, ACGE and Ken Sinervo, MD, FRCSC, ACGE of the Center for Endometriosis Care, a specialty treatment center, believe multiple causative etiologies exist. The ERC maintains that Endometriosis is more than just simple "killer" cramps. “We continue to find that even now, Endometriosis remains misdiagnosed, misunderstood and ineffectively treated, despite being one of the most prevalent causes of pain in women and teens around the globe," said Michelle E. Marvel, ERC Founder and Executive Director. "Even in 2008, we see women and girls from all around the world continuing to suffer in silence with a disease that can be potentially devastating to every aspect of their lives," she noted. The economic impact of Endometriosis is staggering: American businesses lose billions of dollars each year in lost productivity and work time because of the disease.
Endometriosis knows no racial or socioeconomic barriers, and can affect women ranging from adolescence to post-menopause. It can be so painful as to render a woman or teen unable to care for herself or her family, attend work, school, or social functions, or go about her normal routine. Despite the hallmark symptoms associated with the illness, the average delay in diagnosis remains an astounding nine years, and a patient will seek the counsel of five or more physicians before her pain is adequately addressed and diagnosed.
Once diagnosed, it is not unusual for a patient to undergo repeat surgeries and embark on many different medical therapies in an attempt to treat her symptoms. Many such therapies carry significantly negative and long-lasting side effects, and none offer long-term relief. A growing number of younger women are being diagnosed each year, with studies indicating that as many as 70% of teenagers with chronic pelvic pain ultimately have Endometriosis proven by laparoscopy. Other reports show that as many as 41% of patients experienced Endometriosis pain early in life as an adolescent.
The illness can be quite disruptive and cause significant dysfunction, especially at a time in life when self-esteem, school attendance and performance, and social involvement are all critical. Many adolescents with Endometriosis find themselves unable to attend or participate in classes, social functions, extracurricular activities, and sports due to significant pain and other symptoms of Endometriosis.
Of even greater concern, recent studies have shown that Endometriosis may in fact have an even bigger impact on younger patients than older women: in patients under 22 years of age, the rate of disease recurrence was double that of older women (35% versus 19%). Studies have also revealed that the disease behaves differently in younger women; leading some researchers to believe it is a different form of Endometriosis altogether. “We are seeing the focus of research aimed at the infertility aspect of the disease, and treatment efforts continue to be directed towards medical therapies, rather than curative efforts for all women and girls,” said Marvel. “It is imperative that we recognize the far-reaching impact this illness continues to have on patients of all ages, not just those trying to conceive, in order to ensure that our daughters do not suffer as we have,” she said.
The ERC is an established 501(c)3 non-profit organization focused on research facilitation, providing education and support, and raising awareness. The ERC strongly advocates early intervention, timely diagnosis, and efficacy of treatment for the disease. Through the ERC's efforts to raise public awareness, the organization hopes to facilitate better support of patients, increase physician understanding of the disease, and raise research funding leading to more effective treatments and ultimately, a cure. The organization has long pioneered and led efforts to increase recognition of Endometriosis among local, state and federal policymakers throughout the nation since the organization was founded in 1997.
Through the ERC’s work, Congress previously passed the country's first-ever National Endometriosis Awareness Resolution, the first and only of its kind to formally recognize the disease and declare March as Endometriosis Awareness Month. The states of New York, Utah, Florida, Colorado, California, Wyoming, Pennsylvania, Michigan and others have also worked with the ERC to pass similar legislation recognizing the disease. The ERC is a completely free foundation available to anyone wishing to learn more about Endometriosis. The organization is sponsoring various educational, awareness and fundraising endeavors throughout March. For details, visit www.endocenter.org or contact the organization's Director of Fundraising, Denise Childs, at FundraisingDirector@EndoCenter.org.
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The ERC is an established 501(c)3 non-profit organization focused on disease research facilitation, providing education and support, and raising awareness about Endometriosis.

Wednesday, March 5, 2008


Colonoscopy is scheduled for next Thursday (March 13th). Ready to have that done and OVER with!

Tuesday, March 4, 2008

Another medical adventure

Without going into all the awful details, I've been experiencing some rectal bleeding lately (today really bad-the other day I just started noticing it). My GI sent me for a STAT CBC (blood draw) to check my red blood count this morning-and everything was thankfully fine with that. I've been pretty disoriented and "dizzy" for about 2 weeks now-kinda hard to explain. Anyway, they are scheduling me for a colonoscopy to see what's going on. They are looking for endometriosis that may have penetrated my colon-that's the guess about what's going on with that now. Very scary-and I am very freaked out. It is a pretty rare thing for the endo to completely penetrate the bowel wall...but, it's known to happen with my stage of disease. So, here we go again. I don't know when the colonoscopy will be scheduled for, but I am going to make a push to have it done this month, before I start my other treatment. Please keep me in your thoughts. I thought my nightmare was over...or at least had answers.