Endometriosis (from endo, "inside", and metra, "womb") is a common medical condition characterized by growth beyond or outside the uterus of tissue resembling endometrium, the tissue that normally lines the uterus.
Endometriosis occurs in roughly 5% to 10% of women. And can also occur in postmenopausal women, with an estimated 2% to 4% of all endometriosis cases being diagnosed in the postmenopausal phase of a woman's life. Endometriosis most commonly exists in the lower region of the female pelvis. The most common site of disease is the ovary (which I had). The broad ligaments (beneath the ovaries), uterosacral ligaments (supporting structures of the cervix containing sensory nerves from the uterus - which I had) and pouch of Douglas (peritoneum between the rectum and the cervix - which I had) are the most frequently involved areas and can produce intense to no pain felt in the pelvis, low back, and during premenstrual period. Less commonly lesions can be found on the bladder (which I had), intestines, ureters, and diaphragm. Bowel endometriosis affects approximately 10% of women with endometriosis, and can cause severe pain with bowel movements.
It all started back in August of 2005. As I have time to write , I will take you on my journey….about how I was ignored by doctors, told I wasn’t really sick and given the option to take drugs that I didn’t want in my body. I hope my story will help anyone that is suffering and to know… there is a solution out there. Before I get started… here is the place where I found some answers – www.naprotechnology.com
A couple of years ago I woke-up in the middle of the night with abdominal pains. It kinda felt like I was getting ready to start my period, but I wasn’t. I wasn't too concerned, but it was unusual. I didn't think much about things and went back to sleep. Over the course of the next few months I started noticing that my menstrual cramps were getting more and more painful. I would sit at my office desk and be in such blinding pain, hoping it would pass soon.
The pain grew in intensity over the course of a few months and I went into my OB/GYN’s office for a check-up. He performed his usual exam and said, “You probably have endometriosis and should try to get pregnant. Getting pregnant will stop the growth of the lining and ease your pain.” WHAT? I was totally confused. We were not ready to start a family yet; we had only been married for a year. This was his solution? Before sending me home, he suggested an ultrasound series to assure I was ovulating. At the ultrasound appointments the nurse discovered I had a cyst hanging off my fallopian tube. She said it was nothing to worry about and everything looked fine. So in 2006 Doc #1 said I was fine, the cyst was nothing to worry about and if I wanted to relieve the pain, I should get pregnant. This was not good enough.
From the beginning I started tracking when the pain would come on, how much it would hurt and what would make me feel better. I was living and traveling with a heating pad, I would take painkillers when needed and I was watching what I ate. The only thing I could figure out was that the pain was related directly to my menstrual cycle. As I pinpoint ovulation, without failure the pains would start 4 days later.
A few more months went by and the pain continued. I made an appointment with my primary care doctor. She examined me and said, “It’s probably an issue with your bowels; let’s start you on some IBS medicine.” In my line of work, I am not allowed to go into my boss’s office and say, “This will probably work, let’s spend $10,000 on this ad campaign.” I need to have some reasons, projections…maybe a plan of action. Here I was in her office for 15mins and this was her solution, to just give me drugs and say this would probably work… nope, not good enough for me.
Creighton Fertility Care
Let me take a few steps back…. In September of 2004 I started to take more control of my healthcare. I believe every woman should know as much as she can about her body. George and I were getting married soon and we knew we wanted to use a natural form of monitoring my fertility and planning our family. To learn more I took classes in the Creighton Fertility Care Model. www.creightonmodel.com In my early 20’s I was on the birth control pill but stopped around age 25. Currently, I am not any oral contraceptiones and simply watch the signs of my body to figure out when I am fertile and when I am not. At this point in my journey of pain I have been charting my cycle for a year and ½. As the pains come and go over the month I am noting on my chart the patterns I see. The pain is taking over the last half of my cycle, its unbearable at night, my normal menstrual cramps have gone from a 5 to a 10 on a pain scale and this is really starting to affect my normal life as a wife. Not to mention, I am still worried about this cyst that is “hanging” off my fallopian tube…. Might this be causing a problem? Is it damaging the structure of the tube, is it growing, how long has it been there…still no one cares to look further. They just want to give me drugs....
I had lunch one afternoon where the speaker was a female doctor that really cared about women’s health. She gave a great talk and after speaking took a few questions. I thought to myself, “She may know something; she seems to care so much.” After the lunch I stopped her before she left and explained what the previous doctors were seeing, what I was seeing on my Creighton chart and my concerns with all the pain developments I was experiencing. We had to have talked for 30 mins. I figured I finally found someone that was going to help me. Mind you, this is January 2007. At the end of the conversation she recommends I see a doctor at Texas Tech University Medical Center here in Amarillo. He was supposed to be one of the best in town. I promptly went back to my office and called for an appointment…..
February 2007….Armed with my Creighton Chart… (which now has 2 ½ years of charting, a year and ½ with pain, all documented)…. all my files from pervious doctors (ultra sounds, bloodwork, etc), and my husband, I head off to my appointment at Texas Tech. I had such high hopes. Here is a facility that seems to pride itself on attention to WOMENS needs and issues. RIGHT! This was the worst experience on my journey. First the doc was over 45 mins late, George had to leave me and return to work, and when the doc finally does see me, he takes me into a conference room. He explains he doesn’t need to exam me because we are just going to talk. He has a student join him on this visit (poor girl). I start to tell him my story from the beginning…. Showing him the chart, when things started, how the pain has increased over the year, the concern I have over the cyst and more importantly now, how relations are starting to be too painful for me. After listening he goes into saying that I am not sick, I am making this all up in my head and I am perfectly fine. WHAT?!?!?! Did he not just hear what I said? I start to ask questions, he says I look healthy, I am having normal cycles and that I just need to settle down and that I should start trying to get pregnant. He kept me in his office for over an hour! No plan of action from this appointment, no solutions….just go home and get pregnant! Well now I am really upset. Doctor #3 said he would help me… but no such luck. Not to mention they tried to charge me $275 (extensive consultation) for this appointment. After calling the billing office to tell them this was ridiculous and we would be more than happy to pay for this “extensive consultation” if there was a plan of action that formulated from it …but I am still in pain and nothing came of this appointment. They moved the charge down to $65. Interesting…see you have to fight for yourself!
I am at a total loss for where to turn next. Each month my cycle repeats with pain. And each month I try the best I can. I sleep with a heating pad to sooth the cramping, George and I are not having much sex to speak of bc it hurts so much, I am constantly taking over the counter painkillers and nothing is getting better. In fact things are getting worse. There are more days filled with pain and the pain is growing in intensity. In a given monthly cycle I hurt for 2 of the five weeks. There are days at the office were I just sit there barely able to move out of my office chair.
We are now a year and 1/2 into this process and no one will help me. Have you ever felt so alone? Doctors are suppose to listen to you and help. But I am getting brushed right out the door.
It’s the spring of 2007 and things begin to get a little better. I have a referral from a friend to see Doc #5. His nurse staff takes great attention to listen to me. When I see Doc #5 he is concerned about the cyst and orders that we have another ultrasound of it. He wants to see if it has grown and get better measurements of everything else. The files I brought with me are not enough for his liking, he wants to get better pictures. He mentions that he is concerned I may have endometriosis, but says there isn’t much he can do. He is willing to do a lap on me to confirm his thoughts, however, if we are thinking kids in the immediate future he would prefer we try to get pregnant. He feels the lap will just complicate things now. If we have trouble getting pregnant he is open to getting more aggressive with surgery.
At this point in my journey I am beginning to see that your regular OB/GYN really doesn’t know what to do with a possible endometriosis case but two things: #1 prescribe the birth control pill (which will stop the growth of the endometriosis, but the problem is still very much there and may cause more problems to deal with later) and #2 get pregnant.
I really appreciate the attention this new doctor is giving me. He seems concerned about the cyst and we schedule an ultrasound that week. It turns out the cyst seems very normal (and is common for those who suffer from endometriosis). However, while its a normal cyst, is there anything more to worry about? I am still in so much pain. Are we really OK to try and get pregnant? All of this is taking place the summer of 2007. We have been married for 2 years and we are open to starting our family....but something was still nagging at me.
I left Doc #5 with the assurance he was doing all he knew how to do. However, we were not really ready to get pregnant (just for the case of stopping the pain) and I was unsure of his abilities for performing a lap and what he would do with whatever he found. I have heard so many stories of women having to have this procedure repeated every few years. After suffering for so long and the pain growing in intensity, I wanted to try and find someone who specialized in endometriosis removal. Someone who had a track record of success.
Back in 2005 I became a FertilityCare Practitioner in the Creighton FertilityCare Model - a program that teaches women about their gynecological health. I mainly teach women about the fertile and infertile times of their cycle. However, through charting you can pinpoint problems that will give you a better understanding of your overall health. It is with charting your cycle and having a doctor work naturally with your problems that NaproTechnology comes into focus. Dr. Thomas Hilgers is the MD who developed the program, and the doctor I was determined to now see. Being a Creighton FCP - I knew what I needed from my MD, but as you can see from my story no one had answers for me.
In August of 2007, I became a patient of Dr. Hilgers. It takes a long time to enter his rotation of available appointments, but his nurses are great. After filling out the initial paperwork I was sent a copy of the book, “Women Healed” - its like a chicken soup for the soul format about all the different issues women have and how with NaproTechnology, you can be healed. After some initial blood work and charting a few more cycles, he was willing to put me into rotation for my laparoscopy.
After 6 months of waiting, George and I found ourselves driving to Omaha, NE in May 2008. Dr. Hilgers knew he would find the cyst and assumed he would find endometriosis - but to what degree? I went in for surgery and when I came out I had good news and bad. #1 he was going to be able to help me, #2 I required more surgery.
He found stage 2 endometriosis and would need to perform a laparotomy on me to remove all the growth. I had it everywhere - my right ovary, the broad ligaments (beneath the ovaries), uterosacral ligaments (supporting structures of the cervix containing sensory nerves from the uterus), and pouch of Douglas - peritoneum between the rectum and the cervix, and the bladder. AND, the cyst was causing a problem after all, you see the weight of it was dragging the tube away from my right ovary, so no eggs are making it into the tube to be fertilized. It’s like a weight on a fishing line....the line is at the bottom of the pond, instead of sitting just below the waterline. He needs to remove the cyst to return functionality to the tube so I could have a chance of getting pregnant off that ovary too. This too would require the laparotomy.
Let me be very clear at this point, because this is what makes him different....on a serious cases like mine, he believes in removing all the endometriosis and then closing each area that was just removed. Here is the link to his site talking about this exact procedure http://www.naprotechnology.com/surgical.htm
And this is why I will wait another 4 months to see him. On more post to follow... my surgery took place September 2008.
Dr. Thomas Hilgers, “Surgical removal of endometriosis carries with it the best chance for success, both in terms of pain relief and in subsequent pregnancies. However, if the surgeon is not adequately trained to be able to provide a good surgical approach which will remove the endometriosis while preventing subsequent adhesions, the chances for success are quite limited.” - NaproTechnology website
After I returned to Amarillo from my surgery in May I had to wait “3 more cycles” before returning for the laparotomy at the beginning of September. I started measuring everything in how many times I was gonna have to hurt again. You see at this point the pain is so bad that my only relief is pacing the living room floor. I would walk circles around the couch. My pain would mainly occur at night and in the morning. I would tell George, “I know I can just push through this and things will be OK”. I would be so sleepy, but the second I would stop walking it would grow again in intensity. I think my days were not as bad as my nights because I walk around so much. However, if I would be at my desk for very long during that time of my cycle, the pain would come back. Towards the end I was taking vicodin for the pain. It helped those last few months, but the power began to wear off.
Finally September arrived. George and I made the 12 hour car ride to Omaha for a second time. We arrived 2 days before surgery to enjoy some of the city. Tuesday morning we met Dr. Hilgers in the pre-op room to review the surgery. He asked how I had been doing, and I explained things had increased in intensity. He explained what he was going to be doing, what I could expect after and said he would find George right after to tell him how everything went. Now here is something else, after meeting and knowing Dr. Hilgers, this is a man I know will put my health and fertility above and beyond everything else. I never felt that with other doctors I saw. They always rushed me in and out of their office. If something was going to go wrong during the surgery, I wanted Dr. Hilgers to be the doctor that would have to make the decision on what to do...and share that with my husband. However, praise God, everything went well. I was in surgery for 4 hours, and Dr. Hilgers came out and told George it was a 10 out of 10! He got it all. Including the area on my bladder. It wasn’t until after surgery that I realized the pressure I felt when going to the bathroom was actually the growth of endometriosis on my bladder. Since the surgery and removal of the endometriosis on my bladder - no more pressure. YEA! They brought me out of surgery and I spent the next 3 days in the hospital recovering. We headed back to Texas a week after the surgery. I took a month off from work and my Mom came up to take care of me.
Four months later I am better. In fact I almost feel like I am 15 again. I remember being a teen and always so nervous about when your period was going to come. I literally feel no cramping leading up to the start of my menstruation. I have gone from blinding pain where I thought I would pass out....to nothing! Since I chart my cycle every month I know my period follows 13 days after I pinpoint my peak (ovulation)... so I am prepared.
Why did it take so much to finally find help? Why is it that my husband knows more about this condition than his buddy that went to medical school? My story is a common one, and it’s not right.
I have more stories to tell concerning my cycle - low progesterone and PMS, thyroid issues and additional topics. Stay tuned for more follow-ups to how I took control of my own health.
Again, if you want more information visit www.naprotechnology.com. There are doctors like Dr. Hilgers in all areas of the country practicing NaproTechnology. Should you need more questions answered, feel free to email me.