I decided for today's post to go back to the "beginning" of my journey with endometriosis. I feel I should give some background on what led up to the diagnosis… to put things in context. After 10 years of suffering, I was finally diagnosed with endometriosis by a laparoscopy at the age of 23.
My middle school and high school years were marred by agonizing pain, massive bleeding problems, very irregular cycles (some cycles were just 16 days long and other times I would go a couple of months without a period at all). Most of the cycles were very short, though! It seemed I was always either about to get my period, that I actually had my period, or that I was recovering from the traumatic experience of having my period (which averaged 10-11 days back then)! Then it would start all over again way too soon. So I usually had about 5-6 days to “recover” and then my next period would begin! It took over my life in many ways…
The pain was so severe that I actually passed out one day when I was 14. I had a friend over for a sleepover. It was a hot day. I have always had heat intolerance so this didn't help matters. The pain was what knocked me out, though! It was excruciating! (Hot day or not, we were indoors eating breakfast so it wasn't like I was in the sun or anything). I just remember feeling very, very sick and then kind of flopping over sideways in my chair. My family and my friend later told me that my face turned greenish when I passed out. That is how sick I felt... sick enough to turn green! They thought it was some sort of heat exhaustion but I knew better. As I said, the heat certainly didn’t help BUT I passed out right in the middle of an episode of the most INTENSE abdominal pain ever!!!! This was no coincidence. (In years since I have passed out other times during my period, regardless of the weather).
Anyway, to fast forward a bit... high school was really tough! There were days when I was simply to sick to be at school. I never had the sense to not go to school in the first place on these particular days. Fortunately my best friend (the same one mentioned above with the sleepover fainting incident) had a father with a flexible work schedule that allowed him to pick us up from school early rather than take the bus home.
Since my friend and I got extremely good grades, missing an occasional class wasn't really that big of a deal and had no negative impact on our grades or our understanding of the subject matter. (I’m certainly not advocating skipping school; I always got a medical excuse or whatever the school required before leaving. I was a big rule-follower)! We had the option of scheduling our study hall when we wanted as seniors in high school and we scheduled ours for the end of the day so that we could get a pass from the office and leave early (with parental permission).
So we often would call her father for a ride before our school day was technically over (missing one class) or as soon as it was study hall time because I was just too sick to stay in school! Getting through a school day was, at times, all I could do… just to survive another school day. It took every fiber of my being to do it!
I distinctly remember sitting in the front entrance of the school one day with the most nauseating, horrendous menstrual cramps and abdominal pain imaginable. My friend and I were waiting out front for her dad to pick us up. I didn't care how I looked or who saw me sitting there sobbing. I was just too sick to care! The pain was far too intense to put on my happy face and “act normal”. I just kind of curled up in a ball with my back against the wall and cried. My friend did anything she possibly could to cheer me up. (She and I had been friends since 4th grade and she was good at cheering me up).
Anyway, I remember seeing her father's car pull up in front of the school and being SO relieved! We'd go to her house and I would just lie on the bed in her room and cry. This happened quite a bit. It was not a fun way to go through high school.
In my college years, I managed to graduate with a 3.65 GPA despite the fact that I often had to leave mid-class and duck into the rest room because I was so very sick. It was very challenging! I did whatever I had to in order to "catch up" on anything I missed for all of the inconveniently timed trips to the bathroom. It was exhausting and many tears were shed in those college bathrooms! Honestly, I look back and I don’t know how I did it!
Anyway at the age of 23 my gynecologist tried a couple of different birth control pills to try to tame my symptoms. The pills he gave me made me much, much sicker. He then told me he thought I might possibly have a disease called endometriosis. He explained that to see if I had endometriosis a surgical procedure called a laparoscopy would need to be done. While I wasn't wild about the idea of surgery, I certainly wanted to do anything I possibly could to find out what was wrong (because there was no doubt that something was very wrong)!!!
So in 1992 I had my first laparoscopy. My gynecologist diagnosed me with endometriosis. He said he had "cleaned me out" and implied that I was going to start feeling much, much better now. Well that relief he promised never came! (Just 10 months later, another surgeon who was MUCH more experienced with endometriosis did another laparoscopy and found lots more endometriosis)!
After the first surgery, my GYN put me on yet another different birth control pill. I was the sickest ever! I was having all of my usual symptoms (terrible hemorrhaging, agonizing menstrual cramps, nausea, diarrhea, etc). In addition, I was now experiencing extremely severe hot flashes and other new symptoms. Plus I was still recovering from the surgery itself. I was sicker than ever! (I now know from various conversations with pharmacists and other gynecologists that the class of birth control pills he had me using is not a good choice for endometriosis patients and it was why I had the TERRIBLE hot flashes)!
I was working lots of hours and being so sick was making it almost impossible to function at work or home. Between the pain, the bleeding, the exhaustion, and the hot flashes… I was very ill!!!
Once I had a diagnosis of endometriosis, I was hungry for any information I could get my hands on. So, sick as I was, I went on a “hunt” for anything I could possibly find about endometriosis. Let’s just say that the information I found initially was scant to say the least! My GYN gave me a very skimpy brochure on endometriosis that was published by a pharmaceutical company pushing their product. This was not exactly an informative brochure! That’s it. When I asked him about other resources available on endometriosis, he couldn’t come up with anything else!
I then went to my local library. This was a fantastic library that had always had what I needed when I needed it. I searched for any information I could find on endometriosis. I found NOTHING! I asked the librarian for help. She was also unable to find a single bit of information on endometriosis. Being 1992, I didn’t have the Internet to turn to as an endometriosis resource. I was not a happy camper!
I went to various places. Finally, one day I went to the local Barnes & Noble bookstore. I spent hours & hours combing through books in the women’s health and self-help book sections. I searched and searched. I found very little. A couple of books had the word endometriosis in the index but when I turned to the only page listed for it, there would simply not be any helpful information.
Then I made an important discovery! Tucked in the back of one of the books in the “resources” section was information on The Endometriosis Association. I scribbled down the contact information for The Endometriosis Association and was very pleased to have found an entire organization dedicated to endometriosis education, support, and research. (The rest of that book didn’t really interest me so I didn’t purchase it).
I had what I needed: contact information for an organization dedicated to endometriosis!
I went home and called The Endometriosis Association!
Since this post is already quite lengthy, I think I’ll stop at this juncture and save the next part for another post!
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So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
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This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
Showing posts with label birth control pills. Show all posts
Showing posts with label birth control pills. Show all posts
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).
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).
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