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7/10/2008

ENDO SURVIVOR! Our Very First Guest Blogger With A Message Of Hope and Determination - Elaine's "Endo Story"!!!

Editor's Note: Elaine refers several times in her article to BCPs. This is short for the birth control pills that she took to treat her endometriosis. As always, PLEASE refer to the disclaimer at the top of this endo blog's homepage. This blog does NOT dispense medical advice. This is one woman's story of her endo journey. Elaine is a former (volunteer) endometriosis support group leader.

Today's First Ever "Jeanne's Endo Blog" Guest Blogger is Elaine:

"Endo Story": I Am An Endo Survivor by Elaine

I am writing this to those at various stages of diagnosis and/or treatment of endometriosis, not because I have any answers, but because my story shows that there is sometimes a rainbow following the rain.

I am an endo survivor.

I am 46-years-old as I write this. I am told by my gynecologist that I am officially in peri-menopause. My understanding is that this is the stage women practice to go through “real” menopause. After the suffering I have been through I am ready to embrace menopause with open arms.

Every 25 – 30 days, I begin to watch for my period. I have the same feelings as every “normal” woman out there doing the same, or at least I think I do. Finally do, as the case may be, as this wasn’t always the way it was. My anticipation of my period wasn’t always just dreading the inconvenience, the occasional cramps, and the tiredness that I get now. Also, unlike a woman who might take these feelings for granted, I rejoice now that I am able to feel “normal” dread and the not the previous dread that I used to feel.

I was late bloomer. I didn’t start getting my period until I was fourteen-years-old. I remember wishing it would start, feeling left out of conversations with peers who knew the experience first hand. Whoever said “be careful what you wish for” knew the truth. My first period came with cramps. By my third period, I had diarrhea, nausea, cramps, mood swings, and a heavy flow. Did I mention cramps? Later, I would add bloating; lower back aches, vomiting, and breast tenderness.

Unlike many women with endometriosis who have a hard time being diagnosed, I did not. I was self diagnosed immediately. I had text book symptoms and a sister who paved the way. My mom suggested a visit to the same MD that performed my sister’s laparoscopy, but as a young teen, I was terrified of the pelvic exam. I was also determined to avoid a two-day hospital stay and surgery! I preferred to suffer. Besides there were some months that weren’t actually that bad.

Once when I was in High School, I fainted during an attack of cramps. The nurse told me I had to see an MD or I wouldn’t be allowed back on her couch in following months. I stayed home from then on when I knew that cramps were going to interfere with learning.

When I entered college and got my first job, missing days became more of a challenge.

I saw the doctor who treated my sister. A diagnosis wasn’t difficult, as I mentioned I had text book symptoms. He prescribed Birth Control Pills (BCPs) and life became tolerable.

Unfortunately, BCP didn’t solve all of my symptoms and the doctor suggested a laparoscopy. The next few years began my doctor hopping years. I changed doctors each time they suggested surgery, which was usually after I got my first prescription for pills and returned due to symptoms. I took anti-nausea medications, and pain killers, and was eventually diagnosed with Irritable Bowel Syndrome (IBS).

I stayed on BCP, avoiding surgery until 1988. I was 27 years old and had suffered through over 150 periods. However, after all my doctor hopping, I chose to put my trust in the wrong doctor. I chose an MD with no training in laser surgery. She had a partner who was suppose to assist, but at the last moment, he left to deliver a baby. I ended up having a diagnostic laparoscopy only that confirmed what the MD had been telling me all along, but I now had a few grainy Polaroid ® photos to prove it.

During my post surgery visit with my MD, I questioned medications popular at that time for treating endo and the connection with suicidal thoughts. My questions appeared to influence her decision not to have me take medication other than to continue with BCP. Basically, I had the surgery for nothing.

Well, I guess two good things came from having the surgery:

One, I joined the Endometriosis Association and that lead to me meeting wonderful people who offered support and advice through a local support group.

And, future MDs that I met didn’t jump in right away wanting me to have surgeries. Although, at least one pressured me to let him do a surgery just to be sure the diagnosis was correct. I only went to him once, but soon after I found an MD willing to change my BCP prescription to help when the symptoms returned, grew worse, and or side effects were bothersome.

I changed BCP over 20 times during the 23 years I was on them. Some I took only 3 months, some I used for years. Some I revisited after being away for a while and found they worked better than before. A wonderful doctor even battled my insurance at one point to get them to pay for a brand that they had moved off the drug formulary to encourage the use of generics.

A woman attending the support group almost had me convinced that I needed to have routine laparoscopies to know what was going on. She supported the concept that the BCP masked symptoms while allowing the endo to continue to grow while I naively went about life. I had so many fears at that time about my future, and many unanswered questions. I worried about scarring from surgery as much as I worried about scarring from the endo growths. I worried about my future. I could only qualify for disability insurance with endometriosis as an exclusion, so I worried about becoming unable to work.

I never did have a second surgery. I began taking Phenobarbital for bowel cramps and IBS.

It was during this time that I discovered that hormones affect bowel cramping. I felt a new understanding of why the pain meds didn’t help my menstrual cramps – they were bowel cramps. It is easy to confuse the two.

Eventually I went off the Phenobarbital with the help of an MD who suggested over the counter GasX to control cramps, limiting fatty foods, and increasing fiber. It was also around this time that I started eating yogurt. These days ads on television tout yogurt with active cultures as a cure for bowel issues, but back then, I made the link when I began feeling better with yogurt.

I also added calcium pills, multivitamins, fish oil, and exercise to my life. I found yoga helped strengthen my back muscles and reduced the lower back pain. Earlier, I had been told by a physical therapist that there was nothing they could do to help the endo induced pain. So I credit the yoga and yogurt for that help.

In 2004, I was advised to stop taking BCP during a time when I was trying to have heart symptoms evaluated. I had planned (with my MDs encouragement) to take BCP right through to menopause.

This new development really caught me off guard. BCP were a necessity in my eyes. I couldn’t go without them.

Well, I now know that I can! I feel normal for the first time in my life. I dread the idea of hot flashes in my future, dry skin, mood changes, etc, but I love the idea that I can join in conversations with peers for the first time in my life and feel “normal”. (Although I may tire of that quickly once I have a hot flash).

I have to admit after so many years on BCP, I had stopped having periods and had gotten used to this. It was kind of tricky to get back into the habit of counting days and planning on a period each month. But, I am pleasantly surprised to find that although I have cramps, they are nothing like what I had before, and that my periods are more regular than before.

I don’t know what truly helped my endo. The 23 years on BCP? Yogurt controlling my IBS symptoms? Exercise (relaxing with yoga)?

I just know that for the first time in my life I feel good.

My wish is for all women with endometriosis to reach this point.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com. The "endo story" above was written in its entirety by Elaine (an endometriosis patient and former endometriosis support group leader).

3 comments:

Jeanne said...

*** PLEASE READ THE DISCLAIMER AT THE TOP OF THE HOMEPAGE FOR THIS BLOG. ***

Elaine,

OK. Now that we have the disclaimer out of the way... Elaine, THANK YOU for generously spending your precious time and energy to share your "endo story" with us!!!

The telling of your “endo journey/story” has resulted in a beacon of hope for women --- especially for women who are at an earlier point in their "endo journey" than you are now. Your words are inspiring and your determination not to submit to numerous surgeries… plus your commitment to finding a treatment plan that worked for YOU is commendable.

Your words will ring true for many readers and will capture the attention of patients who may not even realize that the risks of scar tissue & adhesions associated with surgery can, for SOME patients, be just as problematic for them as finding another way to go about things.

THANK YOU once again for taking the time and energy to share your experiences. Not only did you kindly devote the time it took to write this article but you did so in a very open and candid manner that will pave the way for future “Guest Blog” entries. I am grateful to you for expending the effort to write such a comprehensive and, ultimately, uplifting/hopeful “endo story” that will demonstrate to endometriosis patients that there are various ways to take control of the “endo situation”.

Granted, every patient is different and what works for one patient may not work for others!! What inspired me about your story is that you used creativity and determination to stick with a treatment plan that worked best for YOU (a combination of medication, supplements, exercise…) and you did not get “bullied” into having surgeries that you did not desire to have and/or that you did not necessarily feel were prudent or productive in your particular case.

I admire your strength and courage from the early years where you fainted at school from the pain --- all the way through your current state of perimenopause… and the various stages in between.

This is a fantastic overview of one patient’s experiences (yours!) and is inspiration for those who wish to reduce their number of invasive procedures (surgery or otherwise).

Thank you, Elaine, for a wonderful ‘Guest Blogging’ article. Your commitment to supporting endometriosis patients for decades now really shines - throughout the telling of your own personal “endo story” (and via what I know of you since I met you back in 1992 following my own endo diagnosis). Your message will surely resonate with other endo patients.

By sharing it, you may give others the strength to re-evaluate their options and possibly ask more questions of their doctors and/or turn down treatment options that are not right for them. As many of us know firsthand, getting a second opinion OR even switching doctors is sometimes a necessary part of our “endo stories” --- because many women feel the need to move forward/heal in ways that one particular doctor may not subscribe to.

As always, this blog does not encourage OR discourage any particular treatment method, medication, surgical procedure, or other means of treating endo. It is really nice, though, to hear a story that includes successfully managing the endo symptoms in a manner in which quality of life is high and pain is lower than it might be with another treatment plan.

Jeanne

Yaya said...

Elaine,
Thank you for sharing your experience. I'm certainly familiar with doctor-hopping...I wish more doctors were thoroughly educated on endo.
I'm debating going on bcp to help my symptoms, although I truly wish to conceive, so that would certainly not help with that at all, but at least my health might be some what under control. I just take it month by month. During those crucial 'period days' I'm ready to do whatever it takes to get rid of the pain, but as always, once the pain subsides, I'm ready to try to conceive again. I guess I'll figure it out soon.
Thank you again for sharing!
Alicia

Jeanne said...

Alicia,

I tried responding to your last comment but I ran out of energy AND I'm just exhausted... so it's now in my draft folder to be finished soon (hopefully tomorrow)!

I'm sorry for the delay but my body is rebelling and I need to take heed before things reach "critical mass". :)

Jeanne

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