My young altered life

I have good days and bad days. Ironically, I usually feel bad at the end of a good day. You see, when I think back on my day, I realize it would have been horrible without the assistance of medicine. A dozen thoughts pop into my mind: “How long can I do this?”… “Do people see me differently because of the stigmas attached to pain medications?”… “Can I live a normal life on pain medicine?”… “Would it be right to somehow start a family like this?”… “If not, how is that fair for my husband?” Then, I try to rationalize in my head, “It’s only temporary until they find a cure”… “Lots of people live normal lives yet have to take medication everyday for the rest of their lives.” I always find myself running this pattern through my head on good days. On bad days, I can’t see past the pain to worry about the future.

I wish I could just accept my situation and make the decision to live life to its fullest. I want to be able to move forward with a positive attitude. But in order to live each day without feeling like a hollow shell, I need to know what I am dealing with. I need a name for my illness and to know what caused it. How can I live with this if I don’t know what this is?

Almost a year ago, I had major pelvic reconstructive surgery. The surgery was an attempt to diagnose and cure my symptoms. However, the only answers I received were that my fallopian tube was ruptured and my abdomen was filled with adhesions. The tube was repaired and a majority of the adhesions were delicately removed. I was sent away with the “wait and see” instructions.

The pain from surgery was excruciating, but worth it if, after recovery, I would be pain free. As the days went by, my post-operative pain began to subside but that pain I felt before surgery started to rear its ugly head. Since I had surgery out of town, and I was never going to see my old doctor again, I needed to find new health providers.

I can’t even count the number of times I had to go to the emergency room before I could get in to see a new Gynecologist. When I finally got into one office, the doctor ignored my surgical reports and insisted on an ovarian cyst and endometriosis diagnosis. About a week later, I met with a new doctor who took the time to listen to my story. He was very sympathetic but never commented on the ruptured tube ordeal. He is considered one of the best and I liked that he believed in conservative treatments first, so I stayed with him.

My main symptoms were, and still are, constant pelvic pain and bleeding (sorry…kind of graphic). I had been bleeding constantly since my pregnancy, so my period never returned. The doctor put me on continuous birth control which somewhat controls the bleeding. Nobody seems to understand why it continues. I was referred to a General Internist and a Pain Management Specialist for my chronic pain. I will discuss this later.

So now I have a team of Specialists, all treating different symptoms; yet, not one definitive answer.

Many people have asked me if the adhesions in my pelvis can be removed with surgery. Adhesions can be removed; however, there is always a risk that new adhesions will form. This was the case with me.

"Even the best surgeons with the most meticulous surgical technique cannot eliminate the formation of adhesions. However, a number of steps can be taken to reduce the chances of adhesion development which include: handling tissue gently, keeping tissue moist, avoiding dry or linting sponges, using powderless gloves, meticulously controlling bleeding, judicious use of cautery, using fine non-reactive sutures and use of adhesions barriers.

Unfortunately much ignorance prevails and many well-meaning health professionals do not appreciate adhesions and the problems they cause. Consequently, patients go undiagnosed of misdiagnosed as having nervous or psychological problems or irritable bowel syndrome. Many surgeons are, understandably, reluctant to cut the adhesions and do the risky procedure. Other doctors are reluctant to provide adequate pain relief for the fear that the patient may become an addict. But seeing a pain management doctor can help."

To learn more, visit http://www.adhesionsfoundation.org/lv2/aboutadhesions.htm#minimizing
You can also view photos of actual adhesions on this site.

Marijke, from www.wombwithin.com, has been very kind and invited me to share my story with her readers.

To read the entire post, please visit http://www.wombwithin.com/2008/07/17/ectopic-pregnancy-a-visitor-shares-her-story/.

"A reader, Rachel, responded in the comments section, inviting us to visit
her website at http://www.ergowrite.blogspot.com, which I did. What I read was an incredible story of “if anything can go wrong, it will.”

I asked Rachel if she would share her story here and she has written it
out for Womb Within visitors. It’s broken down into two parts so as not to make
it too long. Thank you Rachel for allowing me to put your story here for others
to read."

This is a very good article, explaining adhesions. Visit the page for more detailed information.

http://www.adhesions.org/pt3whatare.htm

Unfortunately, most of the adhesions came back after surgery.

My new doctor has diagnosed me with adhesions related disorder. I continue to have constant pelvic pain along with other complications and spend a great deal of time with doctors. However, it has been very difficult for me to get answers from doctors about my ordeal. To this day I wonder how I survived seven months with a ruptured fallopian tube, when all the literature points against it. I would love to know if this has happened to anyone else.

Even with all the answers I have received, I still have so many unanswered questions.

I have been doing research for the past year, trying to find anything similar to my case. So far...nothing.

If anyone has, or knows of someone, who survived an untreated ruptured fallopian tube...PLEASE LET ME KNOW!

My Husband, Mom and myself flew to Arizona for my surgery. We went to my pre-op appointment, but instead of seeing the surgeon, we met with his fellowship student. He explained the upcoming procedure and directions for my bowel prep (Yuck). It was explained that my radiology report showed that my fallopian tubes were damaged, and they may remove them during surgery. I asked if I could request they not take them out unless the damage would cause major complications; since, I would be so disappointed if a few years from now, medicine discovers a way to repair damaged fallopian tubes. The doctor agreed I had a valid concern and said they would not remove them. He said that IVF would be the most likely option for me in the future, but even that has risks for future ectopic pregnancies. He also explained that there is a possibility that my pain would return and I would need to see a pain specialist.

The next day, I checked into the hospital for surgery at 6:00 am. I met the Anesthesiologist along with his fellows who started my IV. Then the massive (6-7 people) surgical team came to see me and ask if I had any last minute questions before going to prepare the operating room. The preparations took longer than expected because of the complexity of the DiVinci robot, so they came to get me around 8:00 am. One of the Anesthesiologists gave me some more sedation and rolled me into the OR. I remember expressing how amazed I was when I saw the room and the robot. The Anesthesiologist jokingly said, “The surgeon’s skills are amazing with this machine, but you should see when he makes it dance.” I laughed and that’s the last thing I remember before waking up.

The doctor spoke with my husband after surgery. He told him that my right fallopian tube had a massive hole in it and there was necrotic tissue surrounding the tube, connecting everything together. He removed the dead tissue along with a portion of the tube. The tube was then reconnected. The adhesion's were removed along with my appendix. He said my intestines looked good after they were freed, so no bowel resection was necessary. He also removed tissue that looked like endometriosis to be tested and explained that if I had endometriosis, that may have been the cause of my ectopic pregnancy, but the adhesions were most likely caused by the ruptured tube. My uterus was tilted because of the adhesions, so he suspended it back into place with sutures.

I was in shock when I found out that my tube had ruptured. Three times I went to the emergency room yet nothing was done. To this day I wonder how I survived. I have had medical professionals say to me, “if your tube had ruptured you would be dead.” Therefore, I always take my surgical report with me to prove that I am not exaggerating.

For over six months I had a hole in my tube. I really want to know if this has happened to anyone else. None of my doctors want to talk about it because of the liability. In fact, after my surgery, I never saw that surgeon again. He had his assistants deal with me, and they, conveniently had very little knowledge about my case.

My Husband was working, so my Mom and I flew to Arizona to meet with the new doctor. We rented a car at the airport and drove to a hotel near the hospital. The trip was very hard for me, as I was in a lot of pain.

The next morning, we drove to the hospital for my first appointment. The Doctor entered the room with my documents in hand and introduced himself to us. He was very kind and spent about 30 minutes with us. He looked over my records and was surprised that my previous doctor had not suggested surgery to remove the adhesions. He was also confused by the most recent ultrasound report and wanted to have another ultrasound done. He said that my laparoscopic photos looked a lot like stage IV endometriosis, but an untreated ruptured ectopic could be the cause of the severe adhesions.

Since my hopes were to reduce the pain and try to regain fertility, surgery to cut out the adhesions was my best option. The doctor explained that he would use the Di Vinci robot to perform the complicated laparoscopic surgery and also would apply an adhesion barrier. He thought it would be a good idea to take out my appendix since it had a high risk of being attacked by adhesions. The adhesions would likely be reduced by 50%, and then he would be able to see what my reproductive organs look like. After discussing the options and all of the risks involved, I decided to go forward with the surgery.

Surgery was scheduled for three weeks later. My Mom and I checked out of the hotel, returned the rental car, and caught a flight back home.

I checked in for surgery at 6:00 am. My husband and parents were with me. I was taken back to the pre-op room where I was later joined by my husband. The doctor talked with me for a minute before surgery to confirm the procedure. An IV was started and I was given some fluids and medicine to help me relax. Then, I was taken into the operating room around 7:00 am.

After surgery, the doctor explained to my family that I had massive scar tissue connecting everything together. (According to my Mom, the doctor said that the only way to remove all of the scarring would be a total hysterectomy).

I woke up around 8:30 am in post-op with some pain in my stomach. The nurse gave me some medicine through my IV after I told her about the pain. As I laid there groggy, I noticed the doctor talking on the phone at a desk. We made eye contact and then, shortly after, he came over to me. He said that everything was “stuck together” and that he could not do too much because he was afraid it could cause bleeding. I asked him what could have happened, but he just said, “I don’t know.” He wanted me to come into his office in a week and he would show me the pictures and talk about what he found.

When I returned to his office, he showed me the pictures and said with all of the scarring, everything was impossible to identify. Concerning the scar tissue itself, the doctor thought the only way to get rid of it would be to do a total hysterectomy. I asked him about new surgical methods that use a mesh to prevent scar tissue from reforming after removal, but he just said, “Those don’t really work.” About getting pregnant, he said, “I have seen miracles where women like you have gotten pregnant, and I sure hope it happens to you.” I asked him again, how he thought the scar tissue got there, and he replied, “Maybe it was there before and we didn’t know it.” However, that would be impossible since I had been examined by so many doctors during the ordeal and all previous exams and sonograms showed no other abnormalities; nor, had I ever experienced pelvic pain before. But I never pushed him on that.

The doctor never really answered any questions. He wanted to wait and “see what happens,” then maybe do a total hysterectomy. I knew I wasn’t going to get anywhere with this guy, so with my family’s help, I got an appointment with a top surgeon at one of the best Hospital’s in the US.

After many months of constant pain, I scheduled an appointment to check everything out. The doctor first did an exam and then sent me down the hall for an ultrasound. During the procedure, the first technician had a hard time reading the images on the screen so she called in another tech (the same woman who found the ectopic pregnancy). The second technician told me that the first woman was having trouble understanding the images and she did not know what to tell me. She then explained that she had extensive experience, so she would assist with the procedure. The technicians never explained anything to me directly, but I did hear them use terms such as “adhesions” and “debris.” They were also debating over what were my ovaries and what were my fallopian tubes. Both technicians were confused by what they were seeing but they continued with the procedure and joked with me about being a difficult patient. After about 20 minutes, I was sent to wait for the doctor.

He called me in to his office and said my fallopian tubes looked very swollen, but my ovaries looked good. This was strange to me since my ectopic was only on the right side. He explained that he would like to do a diagnostic laparoscopy to actually see what the problem was.

My Mom went with me to my pre-op appointment. We were escorted to the doctor’s office where he confessed that he was not sure what was going on. He said that the sonogram images were “perplexing” and he had “never seen anything like this before.” He was unsure if something was wrong with my tubes or ovaries (even though he said my ovaries looked fine at my previous appointment). When I asked him what he thought caused the problem, he suggested that it was unrelated to the pregnancy and may have been there before. However, I pointed out that everything seemed normal several months ago; so, he looked back at his notes and agreed saying, “It says here that everything looked fine.” I asked him if it could be Pelvic Inflammatory Disease caused by the pregnancy loss, but he said that I would be near death if it was PID since the symptoms are very extreme. He cited a patient of his who had PID and he had to do a total hysterectomy to save her life. My Mom asked if the injections I received could cause any problems and he said, “It shouldn’t.” He explained that he could not be sure what the problem was until after the surgery.

My doctor told me I would need to return in a few days for a second injection, and possibly a third. After the second injection, things went terribly wrong. I began to feel pains that no words can even begin to describe. I was literally paralyzed. My gosh…the agony! Thankfully I was able to minimize the pain with medicine, enough for my husband to drive me to the hospital.

We were taken back into the emergency room almost immediately. I was given pain medicine which helped a bit, but the tests they ran voided the relief. The major concern on everybody’s mind was my tube rupturing, but the tests indicated that it had not. The pain was still unbearable. I was admitted to the hospital for observation and later released after a nurse administered a third injection. However, the pain continued and we made two more trips to the hospital. I was admitted both times, but no rupture (so they said).

The excruciating pain lingered. I was unable to straighten my body for about two weeks. My body stayed in a hunched position when I stood and while lying down. I lived on the couch with pillows propping up my knees. My husband slept on out air mattress next to me so he could give me my medicine and help me to the bathroom.

Over time, the intense, debilitating pain started to diminish; however, I continued to have pain and bleeding. I talked to my doctor about this and he told me that it could last for up to six month. He seemed positive that everything was fine.

It started one December. My husband and I were preparing for the holidays when we received a very, very unexpected surprise. For a week or so, I had been having some suspicion of a possible pregnancy. After numerous unconfirmed suspicions, we finally bought a home pregnancy test. I knew that it would most likely be too early to tell, but the suspense was killing me. The test was negative, but as I suspected, it was too early.

A week went by and I started to forget about it. We went about Christmas shopping and attended the usual parties. Just when I thought everything was clear, my husband asked if we should get another test. Mind you, this was after a long day of shopping and spending lots of money we didn’t have to spend. Okay, okay! We bought another test and returned home. Once my husband was distracted with a project, I snuck away to the bathroom to take the test. Almost instantly I saw one dark line and a second very faint line appear. The instructions said that it takes five minutes to get the results, but I knew that if that second line was present, it was bound to get darker. I hid the test under the sink so my husband would not know that I had taken it yet. The anxiety was eating me alive! I peeked under the sink a couple of times but the line was still there. Finally, I called my husband into the bathroom to show him the test results. We were both in shock. I took another test and we got the same results. It is amazing how one tiny faint pink line can change your life completely. I began to struggle with every reality that just smacked me in the face. The fear and anxiety swallowed me up like a massive tidal wave. Knowing that I had a life within me was incredible, yet more terrifying than I could have imagined. How on earth were we going to support this child? Will I be able to finish college? Life as I had always known it was about to change forever. I was already feeling pregnant. My moods were unstable, I was exhausted the entire time, and my breasts were extremely tender. I had so many mixed emotions, but I thought that some how everything would work out.

As I mentioned, it was Christmas time, so we were unable to get an appointment with the doctor before New Years. My husband and I spent the Holiday's with family, contemplating our future life with the baby. The more support we received, the better I felt. I was starting to feel like a Mom and found myself unconsciously cradling my belly with my hands. Each new day I began not only to feel at ease, but I was getting excited.

Well, the time had come to get confirmation from the doctor. My husband was with me during the sonogram. We waited patiently to see anything on the screen, but the technician thought it was too early. The nurse asked us to come back in a few days when it would be possible to see the baby. However, the night before our appointment, I noticed some spotting when I used the restroom. We called the doctor, but he was off that day. The on call doctor expressed it would be fine for us to wait another day to see the doctor.

In the back of my mind I knew something was wrong, but I dismissed it as paranoia. (Looking back, I remember having an extremely strange pain at the top on my shoulder. It felt almost like gas, but I had never felt anything like it before). The next morning, my husband and I arrived at the office. We looked at all of the pregnant women and joked about how that was going to be me soon. We were getting excited to see the baby for the first time. After what felt like a lifetime, we were called back into the room. The sonogram technician, I will admit, was extremely cold and rude. My husband and I just looked at each other and rolled our eyes. As she began to look around inside of my belly, she remained utterly silent. The longer the procedure, the more huffing and puffing she did. I knew from her unsettling groans that something was wrong. She never pointed anything out to us on the screen. But finally, she spoke: “Do you know what an ectopic pregnancy is?” I did because I had recently read about it in a pregnancy book. Her next words were: “You can’t carry an ectopic pregnancy. Sorry hun.” She then turned to her notes and began writing.

I quickly got up off the bed to go into the bathroom and change. As I walked towards the bathroom, I could see the devastation and confusion on my husband’s face. I closed the door to the bathroom and just fell to the floor. Tears were pouring down my cheeks, but I knew that I would have to walk out of that bathroom and face everybody. Never in my life have I had to try so hard to be stoic. I washed my face and walked out of the bathroom. My husband was waiting to embrace me. I was very thankful to have him there. We were moved to a waiting room (with other patients!) to wait for the doctor. We knew that we were now in an emergency situation, but we were in shock. No longer were we there for a prenatal visit, we were there for my own health. There was so much confusion and it was impossible for us to think clearly.

We were silenced by grief, so any questions were inconceivable. All I could do was bite my lip to keep from crying. When I tried to talk, my voice quivered, so I said very little. I tried so hard to just be strong. The doctor gave me an injection that would clear everything up (his words, not mine).

The loss of our child was devistating! But at least we had solace in knowing I would be okay and we could try for a baby later.

Or so we thought!

I decided to start this blog as a means to rediscover myself. The past year has taught me so much about life, but instead of living it, I've been watching it go by. Now I am ready to jump back in, as the same person, but with new obstacles.

About a year ago, I discovered my very first pregnancy was ectopic (in my fallopian tube). Although I had very good health care, my treatment went horribly wrong (in my opinion) and left me with massive adhesion's binding my internal organs together. I now suffer with chronic pelvic pain and cannot have children.

So as you can see, I have a lot to write about.

Time has begun to heal my psychological wounds and I hope this can be a place where other's can start to heal too.