My Battle with Endometriosis & Adenomyosis

Prior to December 2001, I had never heard of endometriosis.

August 2001

Three months earlier, Pat, Amber and I were spending Labor Day weekend at Wisconsin Dells.  I was just getting over my period, but it was lingering longer than normal (8 days at this point), and I was still having some cramps.  It was unusual for me, because normally my periods lasted about 5 days; the first and second day were the heaviest, then it tapered off until day 5, when it was basically gone.  I only would have the mildest cramps for the first 24 hours, and I never needed to take any pain medication for it.

After that first “unusual” period, I decided to wait and see if it happened again…it was probably nothing, I thought the cramps where probably just intestinal. I figured the following month would be OK.  Unfortunately, it happened again, and it continued to do so each month. By November, I made an appointment with an ob-gyn in Illinois, where I had been living for the past year. Pat and I had been researching the Internet for symptoms, and among the possibilities was endometriosis. I actually couldn’t imagine having any sort of disease.  Not that I thought I was superhuman, but it really seems incredible to think about having a disease or medical problems when you've always been healthy.

December 2001

I went to the appointment with the ob-gyn.  Even though I had an excellent male ob-gyn when I lived in Connecticut, I was hoping that a female gynecologist would be more compassionate and understanding than a male gynecologist, but that was not the case. She was extremely cold and clinical, and uncaring of my symptoms.  She said period pain was normal.  I explained that for me, it wasn’t.  I know exactly how my periods have been all my life, and now they were different.  I suggested endometriosis, and she didn’t say I didn’t have it, but she said the only way to diagnose it was by surgery – and she condescendingly asked if I really wanted to have an invasive procedure?  She said if I could just take the Pill, and it helps, why bother having surgery?  I was totally uncomfortable with that…I wanted to know why I was suddenly having these problems. Unfortunately, at the point I was in life, I decided to just take the Pill.  Pat and I were seeing each other, but he lived in Indianapolis, and I lived in the Chicago suburbs with no support system whatsoever to help me after surgery.  I was planning on moving to Indy in June 2002, and we were going to get married in September 2002.  I decided to take the Pill and see if that helped.  I was prescribed Mircette, and it did help…for a while.

The doctor did order an abdominal and transvaginal ultrasound, though – probably to check for fibroids. The first part of the test, the abdominal ultrasound, was a nightmare.  For this, your bladder must be full.  They make you drink 32 oz. of liquid an hour before the test.  I showed up at my appointment right on time – and they made me wait more than an hour!  I could not believe it….the urge to urinate was really strong when I arrived right on time.  Within 15 minutes more, it was unbearable.  I went up to the desk and said something had to be done…I simply couldn’t wait.  After begging the woman at the desk, they brought me in to change clothes and said I could go just a little, enough to relieve the pressure.  It wasn’t enough…since they kept me another hour, I was in such pain and had to keep going “just a little.”  Finally, they did the test…but I had cramps in my back (near my kidneys) for at least 2 weeks afterward.  It was miserable.

January 2002

A few weeks later, the doctor’s office called me and cheerily said of the ultrasound results, “You’re fine!”  It was not until about a year and a half later that I had a copy of the ultrasound report which indicated there was a complex hemorrhagic cyst on my left ovary.  I have since read that they are usually normal, functional cysts that bleed.  Well, when they bleed, they can hurt!  I don't know if it's normal to have them all the time! At least taking the Pill was making me feel OK.  Periods were lighter, and the cramping was reduced.

September 2002

By this time, I had moved to Indianapolis and Pat and I had gotten married.  I had been uncomfortable with taking the Pill indefinitely without a diagnosis…and about this time, I started getting pain again, even on the Pill.  I decided to stop taking it to see what would happen.  Not surprisingly, my periods got a lot worse – heavier and more painful.  Since it was getting worse even before I stopped the Pill, I felt I should find out for sure what was going on.  I waited a few months to “make sure” it really was getting worse, hoping each month I’d go back to my normal periods and everything would be OK.  But it didn’t.

December 2002

Pat and I were having a Christmas party and I was in incredible pain as I prepared for the party – and it wasn’t even my period.  Pat said we should just buy stuff at the bakery in the grocery store, but I wanted to make everything myself (he doesn't understand - it's a gal thing!).  I was trying to have a nice party and I wanted everything my way.   I didn’t want to let anything stop me from being able to function or do the things I wanted to do.  I made one heckuva pineapple cheesecake though, using the recipe from Junior's in Brooklyn, NY.

January 2003

I made an appointment with an ob-gyn in Indianapolis who was recommended by a friend of Pat’s. She had endo and seemed to do well with surgery every few years. At the time, I didn’t know what I had, didn’t know about any treatment options or anything.  I just wanted to know what was wrong, and get it fixed so I could be my old self again.

The visit went well.  This new ob-gyn was a male, but he was very nice and compassionate.  He didn’t dismiss my symptoms, and he suspected endometriosis.  He told me, as I knew, that the only way to find out was to have surgery.  I was OK with that, and scheduled a laparoscopy for March 2003.  I decided to also have my tubes tied since I was through with child bearing.  I also joined an online support group run by the Endometriosis Research Center.  That group can be accessed here:  http://health.groups.yahoo.com/group/erc/

March 2003

On Wednesday, March 5, 2003, I had my first surgery.  It was scheduled for the afternoon, which was a little difficult since I couldn’t eat anything from midnight the night before! The hospital staff was very nice and got me ready for surgery…I had to change into nothing but a hospital gown and “footies”.  An IV was put in, and Pat waited with me until it was time for them to bring me into the operating room.  I was wide awake when they brought me in to the operating room, and when they transferred me to the operating table.  As I looked up, I thought - oh my gosh, this is happening! They covered me with warm blankets and the anesthesiologist came in.  They put a mask over my face, asked me to count backwards from 10, and I think I was out by 8…maybe 7.

I awoke gradually, I could hear some things.  But when I finally came to, they asked me if I wanted Pat to come in, and I did.  He said he had spoken with the doctor and he confirmed I had endometriosis, but no details.  I was happy to have a diagnosis, but I had a definite feeling of worry, like what was going to happen now?  Pat said the doctor treated it, so he was hopeful I’d feel better.  I hated to be worrisome, but I was very worried.  I tried to convince myself I was going to be all better.

I was very sore after the surgery, and “puffed up” from the gas they use to inflate the abdominal cavity. As I’d read, that gas does tend to hurt your shoulder as it goes away.  I needed help getting dressed and putting on my shoes, since I was pretty stiff and sore.

Recovery wasn’t too bad…I felt fairly mobile within a few days, and the post-op bleeding lightened up by Sunday. Then on Monday, I got my period and it was more excruciating than any other I'd had so far!  The doctor's office said not to worry, that it was normal. I was back to work by the next day, but I was still uncomfortable for a while and got tired easily.

April 2003

At my post-op check, I was feeling OK. Not great, but OK.  I’d read about surgery for endometriosis and that it might take a while to feel better, so I was hoping I just needed more time.  I obtained a copy of my photos and operative report. The photos didn’t indicate much to me.  The operative report said I had an endometrioma on my left ovary (I wondered if that was the hemorrhagic cyst from that ultrasound?) and a few small areas of endometriosis which were treated using laser vaporization.

August 2003

I’d had a couple of months where the pain wasn’t too bad, so I was feeling pretty happy about that. I’d kind of forgotten about the endo and was going to continue with my life! This month, however, put a stop to that thought. I woke up early on the morning of August 3, 2003 because I was going to work at the Indianapolis Motor Speedway with a volunteer organization of which I’m a member. Today was the Brickyard 400, a Nascar race, and I was looking forward to this. Unfortunately, I’d gotten my period in the night and I had such incredible cramps I could not believe it…it was the worst month I’d experienced so far.  I took many Ibuprofen and it didn’t do very much for the pain.  I could hardly walk, and it hurt just to sit down, my whole pelvic area was so tender.

November 2003

The few months after the Brickyard were painful, but not quite as bad as that month, thank goodness. Not good, but at least not as bad. This month wasn't too bad, but I’d been feeling a lot of tenderness in my lower pelvis - my actual uterus is sore and tender to the touch. The tenderness seems to be present anytime, not just my period, though it is worse then, as well as cramps.

January 2004

This month was bad, like August…I got my period on January 3 while Pat and I were away on a short trip on Route 66 to Amarillo over New Year's.  It was our final day, we stayed at the Big Texan, and we would be heading back today.  I awoke in intense pain, and I could barely walk. It felt just like it did in August. It was absolutely excruciating, and we had to drive so far back home.  As I was getting ready, Pat went out and bought several kinds of pain relievers.  For a few hours, 1500 mg of extra strength Tylenol helped, and I kept taking it as soon as it wore off. It was not a pleasant ride home!  I made an appointment with my OB-GYN for the end of February. In the meantime, my PCP warned me about not taking Tylenol in such excessive doses, it is harmful.

The pain never went away altogether…I had cramps up through January 14. I changed my diet after having joined another Yahoo group called EndoFood Club.  I noticed that many times, pain at other times of the month would occur as a result of foods I ate.  As soon as I changed my diet, the pain went away or at least was reduced (that is, pain that I was experiencing other than my period).

February 2004

My period wasn’t as bad this month – painful and heavy, but at least not as bad as last month.  But two weeks later, while I had a severe, sharp pain on my left side (ovulation).  It came on fast and lasted for about a minute or so.  I grabbed my left side, and couldn’t stand up.  I had to sit down immediately, and I started feeling very nauseated.  The pain continued (not as sharp, but more like cramps).  I called into work, took 4 Ibuprofen and that quieted it down a lot, while I laid down to rest.  By 10:00, I felt OK and wanted to go in to work.  The pain came back, but I kept taking Ibuprofen to keep it down. 

The next day, the pain on my left would come and go throughout the day…it felt like a wave – I could feel it coming on slowly, peak, and then fade away.  The next day, it was the same only less so, and by the third day it was gone.  I was also having a lot of bowel problems, particularly diarrhea.  Diet helped a lot, but sometimes during my period, it would come on suddenly…it was really getting troublesome.  I felt like I couldn’t go places, because if I was not near a bathroom, I’d be in trouble!  During my period, I had a lot of urinary urgency and frequency too.  Most symptoms were present during ovulation, only to a lesser degree.

Cramps would start a few days before my period, and last the whole time, and sometimes longer. I might catch a few days or a week with no pain, then have more pain and cramps at ovulation.  Then, I might get a couple of pain free days before it started all over again.

I also had a lot of tenderness on my left side, near my ovary.  I could actually press down and find the precise site on my pain.  This would continue, as would the sharp pains in my left side.  In addition, I felt a tugging, or pulling on that side as well.  Sometimes it hurt, too. I had been reading a lot about endometriosis on the Internet, at the ERC Yahoo Group and at websites for endometriosis specialists.  I tried to make sense of the various treatments available, what offered the best chance for success in treating this incurable disease.  I was very scared that I would continue to get worse until I was completely debilitated.  It was getting so painful, and other symptoms were getting bad too.  I found that excision with an endometriosis specialist seemed to be a very good treatment choice, offering the best chances for relief of pain and other symptoms and the lowest recurrence rates.  Not a cure, but at least better odds than drug treatments – hormone suppression, the Pill, or the surgery I previously had – laser vaporization.  But how could I see an endometriosis specialist?  I have a local HMO, so I needed to see doctors in network to gain the highest benefits. There were no endometriosis specialists in Indianapolis. We did have a POS, or Point of Service, option which would allow us to go out of network if we chose to do so, but at a lesser benefit level.  So, I had that to fall back on, but it would still cost more than I could possibly afford. 

On February 24, I met with my ob-gyn.  He agreed that endometriosis was still persistent and said we could try another surgery or try Lupron.  Based on what I read about Lupron, I did not wish to try it at all. My feeling about the drug is that the potential for serious side effects, some of them lasting beyond the cessation of the drug, are not worth the risk for a treatment which has a low rate of long term success. I'd read that some women have been on it and had no side effects, but more often, I'd read that the side effects were very bad and long-lasting.  I thought that no amount of research will ever help to know how my body will react to the drug, and I wasn't willing to risk my health any further because of a drug. I had to think about what I wanted to do next. I was interested in another surgery, but I didn't even consider laser vaporization to be an option - it offered me NO relief whatsoever and I felt worse than before. I knew I wanted to have excision done.   I knew my doctor was not an endometriosis specialist, but when I mentioned excision, he said he did this.  I was surprised, and asked some questions.  I left with a "reasonable" confidence level, but was more confused than ever.  I then found that it was possible to have an HMO approve an out of network referral, if there was no one in network who could do the procedure required.  Indiana Code 27-13-36-5 "Referral to Out of Network Providers" was very clear on the subject.  It was up to me to prove to them that there was no one in network who could do the same procedure, and I knew that it would be difficult. Should I take a chance and have surgery with him so I wouldn't have to fight my HMO? Or should I fight my HMO to gain approval to go out of network to see an endometriosis specialist?

March 2004

I'd been giving the situation a lot of thought.  After researching, I decided that if I opted to try to have surgery with an endometriosis specialist, that I would go to the Center for Endometriosis Care in Atlanta, Georgia.   I faxed my own doctor some questions about his technique and experience with excision.  He kindly reached me one evening after trying me several times.  I asked him many questions based on what I knew the endo specialists could do, my doctor said that even though he felt he was an excellent surgeon (I agreed), he felt that the experience of endometriosis specialists who do a lot of excision was superior and would offer me the best results.  He agreed that there was no one in Indianapolis who could do this, and he would refer me out of network. So, in a way, he made the decision for me, though I was leaning that way anyway.  I was trying to gain a comfort level with his experience, but he thought I should have the surgery with the endo specialist, that it would offer the best results and he wanted me to have the best possible treatment. My doctor wrote a letter of support to my HMO, indicating that I had a previous surgery for endometriosis and that he felt I needed excision. He further stated that there was no one in Indianapolis who could do this and that I should see an endometriosis specialist.  This would be the start of my battle with my HMO.  

April 2004

I sent a copy of my medical records and surgical photos to the Center for Endometriosis Care. I received a letter back indicating that I would be a good candidate for surgery there and to call to schedule.  I set the surgery date for June 30.  By April 8, my doctor's office started the referral process with my HMO.  What a complex situation this would turn out to be!  I followed up with the customer service department and they indicated it was approved and gave me an authorization number.  I was shocked!  It turns out, that they authorized a consultation, not the surgery.  After many phone calls with customer service reps, and A LOT of misinformation, I finally insisted on speaking with a manager.  She was helpful and started to clarify things.  After dealing with several people, I was able to have a case manager assigned to help me.  

In the meantime, I had gotten in touch with a woman who was listed on the referral section of the CEC's website.  It indicated that she had to fight her HMO to go out of network, and she wanted to help others too.  I wrote her and she immediately wrote back, sharing her story, advice and several documents to help me with my HMO request.  Her advice, as well as support, was so helpful.  There would be times when the situation was so depressing, and she was so encouraging.  I will forever be grateful to her.

I also purchased a book called "How to Play HMO Hardball" which gave me the inside scoop on HMO's, how they work and the tactics they employ to deny services and claims.

By the end of the month, through many calls with the HMO and my own doctor, I found that the Medical Director of the HMO wanted a second opinion and asked my own gynecologist for someone. My doctor gave the name of a reproductive endocrinologist.  I immediately made an appointment, and was able to get one for May 6, which was not too far away.

May 2004

On May 6, the day of my appointment with the RE for the second opinion, I also spoke with the case manager. I explained the situation that my doctor and I believe there is no one in Indianapolis would could do excision of endometriosis to the level of the endometriosis specialists. She said I was doing the right thing, and to keep going with the process.

The visit with the RE for the second opinion was horrendous.  He was rude, condescending and at one point, made a highly inappropriate comment as well.  I went into this visit intending not to be combative, but he made it impossible, since he was that way with me.  He was unaware of the fact that I was there for him to give a second opinion to my HMO for the excision with an endo specialist.

I explained my symptom history, previous surgery and that I now wanted to have excision done for my endometriosis by an endometriosis specialist - I asked him if he was familiar with the work of Dr. Redwine - he said he was.  He did a brief physical exam, then I got dressed and went back into the office. I showed him my previous operative report and surgical photos. He glanced them over and laughed - then looked up at me to judge my reaction.  I was blank actually, not having any idea why he was cackling like that. He said the first thing he would have done would be to give me antibiotics to rule out infections.  Then he told me: Endometriosis is not your problem.  I replied, No?  Then what is? With a ridiculously grandiose gesture, he slammed his hand on the table and said, Absolutely, you have adenomyosis, and he added condescendingly, how much reading have you done about THAT?  I told him I knew it was similar to endometriosis, but that it was inside the uterus, and usually a hysterectomy is required.  He said endometriosis wasn't my problem because I was too old for those symptoms to come on suddenly at 34 years old. He also said he had concerns about recommending excision of endometriosis because he said I would come back to him and still be in pain. I thought, I will never, ever come back to you, you jerk!!!   

So I asked him, Did you read in my operative report that I DO have endometriosis?   He replied, You don't have enough endometriosis to cause you any more problems and that it was all treated during your first surgery.  I said, Yes, but I had laser vaporization and doesn't that often burn too superficially and leave endo behind?  He said yes.  Then he said, referencing my photos, You barely have any endometriosis to cause you this much pain.  I then asked, isn't it possible that I have more endometriosis than is visible in those photos?  He said No, your doctor did a good job checking you out during surgery.  I asked, Do those few pictures show every possible area where I might have endo?  He said No, there could be other areas.  I then said, And isn't it true that a little endo can cause a lot of pain?  He said yes.  I then said to him, Why are you saying I have only adenomyosis and my endometriosis is not a problem?  Are they mutually exclusive or can someone have both?  He said, yes, I could have both.

I then said to him that I was willing to accept the possibility of having both, but that I was upset he was saying I had adenomyosis only, with the only cure being a hysterectomy. He got defensive and said I didn't say you should have a hysterectomy!! I said No, but you are insisting endo isn't my problem, and that adenomyosis is...and that you have concerns about my having excision and still being in pain.  What other conclusion can I draw from that? Wouldn't it make more sense to have excision of my "known" endometriosis before assuming I have adenomyosis?  And even if I opted to have a hysterectomy, couldn't I still have problems if any endometriosis is not excised at the same time?  He agreed, but he was pretty ticked off at me by this time...I got so mad, I said - I'll bet you wouldn't have a testectomy unless you absolutely had to! He was dumbfounded for a moment and he asked me, Why are you here?  I told him my HMO wanted a second opinion.  He was through dealing with me, and said he'd write a letter to my HMO recommending the procedure.  As I left, he said, So do you want the antibiotics or WHAT?  Just to get out of there without further argument, I said OK, but didn't intend on taking it.  What an idiot.

I later received a copy of the letter - all of two or three lines.  He recommended it, but he said basically it was an option - not really supportive.  I sent it to the Medical Director of the HMO, and followed up with my Case Manager.  On May 28, 2004, I received a letter saying that after consulting with the second opinion doctor, my out of network request was denied because it was determined that an in-network doctor (name) could "manage my endometriosis."  My assertion was that my own doctor determined that excision was the best treatment for me, and that the Medical Director was to determine if that procedure could be done in network or not.  This letter did not satisfy that requirement of the Indiana Code, because "manage my endometriosis" was too vague - no one could answer the questions, does this doctor do excision, and can he excise from the bowel, bladder, ureters, etc.  The next step in the process was going to be to see this doctor (who was a reproductive endocrinologist) and determine whether or not he could do excision to the same level as an endo specialist.  This would be crucial to obtaining approval.  I had already started preparing my appeal, which contained my medical history, treatment history and supporting documentation of excision for endometriosis as the treatment which can offer the highest chance for success.  Of course, I also referenced the Indiana Code, and how it applied to my situation and their denial.  But until I saw the doctor they recommended, I felt I could not appeal yet.  I immediately made an appointment with the RE for June 17. I thought at this point, my June 30 surgery date wasn't going to happen.

I also specifically wanted the HMO to state that the procedure was approved, but the issue was whether it could be done in network. HMOs are notorious for denying medically necessary procedures in favor of less expensive drug treatments, or else no treatment at all...so I wanted to know the procedure was approved for medical necessity.  I received a letter stating it was, but that the in network doctor could do it (thus, my out of network request was denied, but the surgery wasn't).  The second reason this letter was important was in case I opted to give up obtaining approval at the HMO level and instead use my Point of Service benefits, I would not have to have the procedure itself approved for medical necessity - therefore, I was assured of immediate approval, and this review was sufficient for the POS option. I did not, at this point, wish to take the option.  I wanted to continue and fight for HMO level, because I knew it should be covered, since there were no endo specialists here.

On May 29, I got my period.  It was the day of the 500 Festival Parade and my daughter Amber was going to be in it, with the school band.  I had some cramps, but it started out mildly. I took 3 Ibuprofen and that helped enough so that I was able to get down to the parade with no trouble.  Later, my mother and I decided to go to the 500 the next day and went over to the track to get tickets.

By 10:00 PM, I still wasn't feeling too bad and Pat and I decided to go for a walk over by the track where all the race fans were partying.  I'd never been over there before, so we decided to head out.  I was OK for a while, but then when we'd been walking for a while, my lower left side started to ache a lot.  Walking became very difficult, but we were about 3/4 mile from home and I had to walk back. I was still enjoying observing all the drunken rowdiness of the race fans with amusement, but I was really hurting and couldn't wait to get home.

The next day, my cramps were so intense, I again had trouble walking.  It was early in the morning and I was up in time to hear the 'explosion' go off to signal the opening of the track.  I felt as though there was no way I'd be able to make it to the race.  We had to walk around 3/4 mile to the track, then all the way through the track to the "no alcohol" spectator section, and of course back home with our chairs, coolers, etc. I couldn't even think of going, so I called my mom to let her know. The weather was looking sketchy anyway, so with the prospect of rain, we decided it was best not to go. It turned out not to be a bad situation, because we had some extremely serious storms here by the end of the day, which we would have gotten caught in. Be that as it may, I was still upset that my endometriosis continued to get in the way of my ability to enjoy life and activities.

June 2004

I had to wait a few weeks for the visit with the RE, so I decided to continue working on my appeal. In the meantime, I was able to speak with Dr. Ken Sinervo of the Center for Endometriosis Care about adenomyosis. I didn't want to think about the possibility of having adenomyosis and getting a hysterectomy, but I couldn't get it off my mind thanks to that idiot doctor.  I still knew I had endo problems as well, but wanted to get the advice of someone I trusted. Dr. Sinervo described the symptoms of adeno and it sounded just like what I was experiencing: uterine cramping, along with low back pain, worsening throughout the day and into night.  My uterus was very tender as well.  He discussed a procedure for hysterectomy called laparoscopic supracervical hysterectomy. The hysterectomy is done completely by laparoscopy (no major abdominal or vaginal incisions) and the cervix is retained.  I started convincing myself that excision of endo, combined with a hysterectomy for adeno would be the best thing to do.  It was a little difficult to decide, since adeno could not usually be confirmed before surgery. There are newer techniques available to help with a diagnosis, but most often, it is confirmed after surgery when the uterus is examined.

I was also seeing my PCP for fatigue and suspected hypothyroidism.  I got tested and I was found to be low, so I started on thyroid medicine. While I was waiting for surgery, he also prescribed some medications to help with various other symptoms of endo, like my bladder and bowel problems.

Finally, June 17 came and Pat and I went to see the RE - I wanted Pat there so we would both be able to ask questions and write down the answers he gave us about his surgical experience.  We were very nervous because we expected a repeat of the visit with the RE who did the second opinion. Despite my concerns, he was different.  He was very nice and personable, and knowledgeable - not nasty or condescending in the least. We asked questions, and it seemed obvious that he was experienced, but yet not to the level of the endometriosis specialists.  We discussed excision, and he indicated that had done some - but it also sounded like he primarily did laser vaporization.  He said he could do excision if I wanted, but I didn't feel he did it as much as the endo specialists, and I wasn't going to be comfortable.  Besides, as a reproductive endocrinologist, he was mainly treating women whose primary symptom was infertility, not pain or other symptoms like bowel and bladder problems - it didn't sound as though he excised from these areas. We also discussed adenomyosis and adhesions. He discussed the possibility of a new drug treatment using an aromatase inhibitor, Arimidex (anastrozole), which has been found to have good results with endometriosis. He mentioned a study done by a doctor in Chicago and I was familiar with it, but I still didn't want to try any drug treatments. I was also having trouble with urinary urgency and frequency during my period as well.  He wanted to do an MRI to see if adeno could be detected (it is not always found on MRI, though), and also sent me to a urologist to check for the possibility of interstitial cystitis. He seemed to push the aromatase inhibitor treatment on me, but I wanted to read up on it more.  I didn't want to try it at this point, but I certainly thought his treatment proposal would help me to get approval to have surgery at the CEC.  My HMO clearly didn't cover experimental treatments, which aromatase inhibitors are for endo.  They are not FDA approved for endometriosis yet (as of this time).  So I was on much better ground.  I left there with an appointment for an MRI on Monday, June 21, and an appointment with a urologist for the Wednesday, June 23.

I went for the MRI on Monday, but had to go back there on Thursday for more images (?). The MRI report didn't indicate any specific gynecology problems, such as adenomyosis or an endometrioma on my left side.   However, the MRI did reveal the presence of a “Tarlov cyst” located on my spine between S1 and S2. I was curious and did some research, finding that they can be symptomatic, and in females cause pain and problems similar to gynecological conditions.  This didn’t help me in trying to figure out what to do.  What if I had a hysterectomy for no reason?  But I paid close attention to my pain, and felt specific tenderness in my uterus. My conversation with Dr. Sinervo helped me to believe that it could be adenomyosis, so I felt comfortable having a hysterectomy (in addition to excision of endometriosis) to rid myself of the pain.  If I was having problems after this, I could look into the Tarlov cyst as a cause. On Wednesday, I went to the urologist, but since my urinary symptoms were related to my period, she thought the cause was the endometriosis, not interstitial cystitis. I had an appointment to go back to the RE on Friday, June 25.  Pat came with me and we again discussed options.  

I had been researching about laparoscopic supracervical hysterectomy.  It was so confusing to know what to do.  Some said it was better to remove the cervix, because it could have endometriosis on it, or have adenomyosis, and still cause pain.  I’d also read that some women who kept their cervix continued to bleed somewhat, having a “mini-period” every month because the endometrium (uterine lining) extends into the cervix.  I’d also read where retaining the cervix helps with support, lessens the risk of bladder problems, and increases sensation in the area because more nerves are left intact in the area which supports the cervix. I would ask Dr. Sinervo questions about LSH to address my concerns about post-op cervical bleeding.  One’s doctor and personal situation will determine which type of hysterectomy is right for someone – there is no one best solution for everyone.  But considering that most women are still under rest orders 6 – 8 weeks or more post-op, then if possible having the procedure done laparoscopically helps the recovery. It is important to note that regardless of external incisions, there is still a great deal of internal healing to do, even with a laparoscopic hyst.  Recovery will be somewhat faster, and with less pain, but recovery will take place in stages, so it is important to build up activity gradually so as not to set one’s self back if you’re feeling ambitious. 

Getting back to the visit with the RE, we knew this conversation was going to the one that would determine the direction for my out of network request and appeal.  To our surprise, the doctor agreed that treating my endo surgically would be a good choice.  He said that treatment with the aromatase inhibitor should be a last option after excision was done, and that the drug wouldn't have any effect on adhesions. He said that with the possibility of adenomyosis, if I opted for a hysterectomy, he thought a laparoscopic supracervical hysterectomy at the same time as excision would be a very good treatment and felt that any doctor who could do both procedures at the same time would be optimal.  He agreed that no one in Indy could do this, and the facilities for a LSH weren't available in my network anyway (a good morcellator for the LSH).  He agreed to write to the Medical Director of my HMO recommending the out-of-network request, and talk to him if necessary to explain the situation to him and get the approval.  He dictated the letter that day, but I had to wait for the letter to come back from the transcriptionist for two weeks.   Pat and I left there VERY relieved, because the doctor the HMO said could do the procedure, even said he'd recommend an endo specialist!  At this point, I could not see how they could deny my request.  This doctor was specifically stating no one else could do it, and he was among the top in Indy. 

I immediately called my case manager, as well as my contact at the HMO who handled appeals. The lady from appeals said I could file my appeal immediately, based on the May 28 denial.  But the case manager said appealing might not be necessary. She said that based on my visit with the doctor, that the letter should be submitted to the medical Director, and though she couldn't guarantee it, that he might approve it based on this information.   By this time, my June 30 surgery date was out of the question, so I cancelled it for sure. 

Two days later, I got my period while we were away in Litchfield.  Again, a lot of pain and misery while I was trying to enjoy myself...I guess I should get used to this!

July 2004

After several phone calls, I received the letter from the RE's office by fax on Friday, July 9 and faxed it to my case manager, the medical Director of the HMO, my own gynecologist, and my PCP. I added my own letter stating again the facts about excision, the support of my own gyn, the RE, and our combined assertion that there is no one here to do this. They already denied my request, stating that the RE could do it, but when even HE said I would be best off with an endo specialist who could do everything in one surgery, I felt my request should be approved. The following week, my case manager asked me to send it again (!?) and I did.

She called me on Monday, July 19 and left me a voice mail indicating that my surgery was approved at the HMO (in network) level.  I couldn't believe it...I was at work and I just about cried, I was so happy.  I had already thought about when I would reschedule if it was approved, and had considered either mid-August or during October.  Based on my work schedule, mid-August offered me a small window of opportunity to take the time off.  After checking with my manager, he said to do whatever I needed to do to be well, and I worked it out with my project managers and scheduled the surgery for one month, 7:30 AM on August 18, 2004 with Dr. Ken Sinervo of the Center for Endometriosis Care.

I spent the following weeks cleaning the house and preparing everything - very typical for ladies pre-op!  What is with us?  LOL

This month's period was uncomfortable and very painful as usual, but it seemed to bother me alot less, knowing it was the last!

August 2004

The time for surgery finally arrived.  For the "road trip" portion of our Atlanta trip, click HERE.  Pat was determined not to have any fun on this trip, but I thought we should at least have some fun.  We had to check into our extended stay hotel on a Saturday, so we would have a few days to enjoy ourselves.  All that is available at the previous link.  The night before we left, my mom called up my cousins, who live in Atlanta. My cousin is a nurse there, and my mom mentioned where I was having surgery - the Emory Dunwoody Medical Center - and by coincidence, that is where she worked!  I talked to her and she said the doctors at the CEC are the best. She's worked with them all in the OR many times and she assured me I was in good hands and that they were available to help in any way Pat and I needed.

Tuesday, August 17, 2004

Today was the day of my pre-op visits to the doctor and the hospital. I had an appointment with Dr. Sinervo at 9:00. We talked to him in depth about the procedures - excision and laparoscopic supracervical hysterectomy. He again described the symptoms of adenomyosis and asked specifically if I wanted to have the hysterectomy, and I did.  I strongly suspected adeno, and he could also do a physical exam to see what he could tell.  I asked Dr. Sinervo about the only concern I had with leaving the cervix, and that was whether adenomyosis could infiltrate down into the cervix, as well as whether any remaining endometrium which extends into the cervix could bleed post-op, resulting in a “mini-period.”  He told me that he “cones down” into the cervix, basically removing the entire endometrium as well as coagulating the cervical opening.  He said in all the LSH’s he’s done, he has not had anyone report post-op mini-periods.

We also talked about the problems I had on my left side, and there had been an endometrioma there before. I also said I felt that there was a pulling feeling on that side like adhesions.  I felt that if he found that ovary had problems with it, I would want him to remove it.  Ideally, of course, I would want to keep both ovaries.  But if there was any significant problem, I wanted this surgery to be as definitive as possible.  I didn't need to be so conservative that I'd keep a diseased ovary and continue to have problems.

We talked about some of the other symptoms I was having - bladder and bowel problems, all which could be related to endo.  Dr. Sinervo said many times bowel problems do not necessarily indicate endo on the bowel.  He said endometriosis in any location, stimulates inflammatory chemicals - prostaglandins - which can upset the digestive system and cause diarrhea, just as I was having.  Combine that with the same processes going on with adeno, and it results in a lot of pain at all times of the month.  But he said that if endo is found on the bowel, it can be excised.  He said if it was very invasive, a bowel resection could be done.  That would mean a longer hospital stay and recovery and I had to specifically state whether I would want this done if it became necessary.  I said yes (though I was hoping it wouldn't be!).  He said that very few patients tend to have endo on the bowel and fewer still have it so bad that it necessitates a bowel resection.

Dr. Sinervo then did a physical exam, and he was very gentle with it. He was able to tell how tender my uterus was without pressing so hard as to cause me any great pain.  He said that my uterus was enlarged - that was the first I'd heard, even after appointments with my own gynecologist as well as two reproductive endocrinologists, who did physical exams. That, combined with the tenderness of my uterus, further confirmed the suspicion of adenomyosis.  He also said he could feel the adhesions on my left ovary, because of the lack of movement on that side. 

I then was given prescriptions for medications for pain, anti-inflammation, and anti-nausea.  They also gave me the medicine I'd need for the bowel prep I'd have to do this afternoon.  Sure looking forward to that!

We then had a quick bite to eat before we went to the hospital for pre-admission. I met with an anesthesiologist and a nurse to complete the pre-admission process. We needed to be at the hospital by 6:00 AM.

We went to CVS to fill the prescriptions and pick up a few things I needed for the bowel prep. By 3:00, I started it. My instructions were to first take a tablet called Reglan, which would empty any food in my stomach into the digestive tract.  An hour later, I had to take 4 Dulcolax tablets, followed by three glasses of liquid mixed in with Fleet phospho-soda.  It was a salty, lemon flavored mixture which I combined with fresh-made apple juice.  The first glass wasn't too bad, but by third I was getting disgusted.  I drank lots of clear fluids and had some broth for "dinner." The bowel prep was not fun at all, but I knew it was necessary.  I was helped by using aloe vera baby wipes and Bag Balm, both suggestions I'd read at my message boards.

Wednesday, August 18, 2004

I woke up pretty early in the morning, since I didn't want us to be late arriving at the hospital.  I had to finish the bowel prep with an enema.   Again, not pleasant stuff, but I knew it was all necessary to avoid problems if bowel surgery was necessary. I only had a small sip of water for my thyroid medication, because I could not have any liquids after midnight.  We left at about 5:20 AM and arrived at the hospital by about 5:45.  The woman who met us, greeted me by name, and brought us to a room where I changed into my hospital gown and awaited the nurses for 6:00. Right at 6:00, two nurses came in and started preparations, including an IV. I still had to use the bathroom, so that was kind of awkward, but finally I stopped having to go. Around 6:50, they prepared me to leave the room and head over to a waiting area before surgery, and Pat had to go wait in a different area.  Since I would be having a 23-hour stay, I would have an assigned room at the hospital.  Pat would be waiting there during the surgery and when I arrived back at the room afterwards.

They wheeled me into a large area where there were several other patients awaiting surgery.  I was, for the first time, somewhat anxious - not even before the first surgery.  I guess this surgery, and obtaining HMO approval, meant so much to me that I was hoping for the best and I was anticipating it so much.  The anesthesiologist met me around 7:05 AM and they put something in my IV to make me relax.  At first, it gave me the weirdest sensation through my arm as it was administered.  Thank goodness that only lasted a minute. I think that relaxation medication is standard procedure because I wasn't visibly nervous at all...I didn't even feel that nervous, just a little anxious.  Whatever the medication was, it made me drift in and out of consciousness.  By 7:25, I recall being wheeled into the operating room, and seeing everything there.  They transferred me to the operating table, and I remember feeling a mask on my face, and then my jaw clenched shut as I ingested the gas.  It felt weird because my teeth were hitting each other, and I wanted to say it was uncomfortable, but it lasted barely a second and I was out.

After surgery, I remember the feeling as my previous surgery of hearing voices, but not really being able to wake up yet. I remember that people were talking about my temperature, and saying that it was too low.  They asked me if I was cold, but I wasn't and shook my head no.  But my body temperature had dropped to 93 degrees; they covered my body with several layers of warm blankets, as well as draped some around my head like a shawl. I felt warm but comfortable. I guess that did the trick.  I remember hearing Pat's voice, and talking to him.   Pat said Dr. Sinervo called him about an hour into the surgery to tell him what he found, and what he was going to do.  He explained that Dr. Sinervo had found more endo than we had known about, and some on my ureters, and that there were a lot of adhesions on my left ovary and it was adhered to the pelvic wall.  He felt it could happen again after surgery, so he thought it was best to remove it. 

Dr. Sinervo had another surgery after mine, but he did stop by. He woke me and it was nice to see his smiling face with the outcome of the surgery. In addition to what he told Pat, he explained that there was also some endo on my bowel he was able to remove, and he told me all my old endo was still there. Why wasn't I surprised?  He said I had a 95% chance of no further problems...I was so relieved. 

It was a while before I reasonably woke up.  For most of the day and night, I would fall asleep and wake up on and off. That afternoon, I was given a totally liquid meal of iced tea, chicken broth and Jell-O. Unfortunately, as soon as I ate (well, drank), I got sick. They gave me some anti-nausea medication, which helped.  The pain was pretty bad at times. There was one pain medication I was given by injection which made me feel terrific!  LOL  But they only gave me that once.  After that, I was only given Darvocet. I was fairly uncomfortable, and getting up to use the bathroom was not easy.  I needed help because my abdomen was so sore, but Pat stayed with me that night on a cot, which my cousin had arranged for us.  She and her husband (who is actually my cousin) stopped by that night and brought Pat dinner.  Unfortunately, I was drifting in and out of consciousness, so they didn't stay too long.

I looked at my surgical photos…most of them didn’t mean much – it’s hard to tell what’s what sometimes.  But two of the photos were clear: one showing the adhesions on my left ovary, and the other was my uterus – it was clearly misshapen (globular, as often described), compared to what I had remembered from the photo of my uterus from the first surgery.

With the IV in, I had to use the bathroom a lot, and I am glad Pat was there to help me. I drifted in and out of sleep a lot during the night, and finally morning came, so I knew I’d be leaving the hospital soon.  They brought me breakfast – another completely liquid meal, same as last night, only instead of iced tea, I had hot coffee. I tolerated this much better, my nausea was gone. It wasn’t easy getting dressed, but I managed.  I needed help with my shoes though, since I could bend at all. I had a cough post op, which I figured was a result of the breathing tube.

After getting all discharge instructions, we left to back to the hotel. It was a little difficult getting up to the second floor, but I managed all right.  Pat went out to get me some Jell-O, since I didn’t want to eat solid food just yet.  I didn’t eat much of anything, just a small amount of broth and Jell-O, but I drank a lot of water.  I slept on and off most of the next two days and took my pain medication.  I didn’t seem to need too much pain medicine, but I did take one every 4 hours to keep the pain at bay – and I was taking Vioxx, which also helped keep any inflammation down.  I was spotting post-op, which I understand is normal post-hysterectomy, though I didn’t know too much about how it would be for a LSH. 

On Friday, I wanted solid food, specifically, an egg and bacon  bagel sandwich from Einstein, so Pat went around the corner to get that for me, and it was a welcome taste after not having had solid food in four days.

Saturday, August 21, 2004

By Saturday it was time for us to check out and head for home.  Overall, I was feeling pretty good, so we decided to go to Juliette and have some more “fried green tomatoes at the Whistle Stop Café.” There was a bus tour there, and the wait for a table was 45 minutes, but there was no wait for a counter seat, so we took that. I thoroughly enjoyed having my fried green tomatoes and a fried green tomato sandwich.  I even bought another order to bring home to Amber.  I had a cooler and Tupperware in the car, so they would keep until we got home.

We didn’t head back via I-75, instead we took a two lane road into Alabama.  We had hoped to get to Birmingham in time to eat at the Irondale Café, which was the restaurant which served as the inspiration for the Whistle Stop Café in the book. They carry their own line of products which is very good.  So, I thought that might be nice to eat there too, but they closed at 6:00 PM, and we didn’t arrive until 7:30.  But a train was just going by, so we stayed to get some pictures of that.  The café sits directly across from the train tracks. But I can see now, that the area was not at all the same as in Juliette, so with a certain locale desired by the filmmakers, I can see how Juliette fit that image more than the Irondale Café would.

We continued our way home, spending the night in Cullman, Alabama.

Sunday, August 22, 2004

We had breakfast at Jack’s Restaurant, next to our hotel.  It was very good.  I had a decent appetite, but  tried not to overdo the breakfast d too much.  The trip back wasn’t too bad, but I’d certainly had better trips!  But then, I’d also had very uncomfortable and miserable road trips, thanks to my endometriosis/adenomyosis, so I was more accepting of the discomfort resulting from the surgery, knowing I would ultimately feel much better.  To make the trip more comfortable, I had the seat reclined back.  I had a body pillow on the seat, and I used a regular pillow for my head. I also had my feel elevated with a bunch of pillows on the floor in front of the seat, which made me sleep much more comfortably. Usually, when I fall asleep in the car, even for a short time, my neck hurts.  But using pillows made me feel OK. We stopped a lot so I could use the restroom and get out and walk and stretch a bit, but I hated walking around since I was stopped over and shuffling around like a little old lady!  Pat told me to get over it!  I’m fairly stubborn – I like to blend in, not stand out.  The worst part of the trip was that I felt uncomfortable in the car wearing my shoes, so every time we stopped, Pat had to help me put on and take off my sneakers – I should have worn my white sneakers, which slipped on and off easier, with no laces.  I would recommend to anyone who is driving a long distance after surgery to wear shoes that slip on and off more easily.

It took quite a while for us to get home, and we ran into traffic in Louisville, KY.  We managed to get off the Interstate in two areas to avoid the traffic, but we still didn’t make it home till about 10 PM.

Wednesday, August 25, 2004

I was one week post op today, and fairly mobile. When I get up from sitting or laying down after a while, my legs feel very weak, so I need to be careful not to collapse! I mainly rested on the sofa in the living room and watched TV, or sat in bed to read, or slept.  I went on the computer a little to check messages, and I was OK if I reclined the chair and used pillows to soften the seat. I needed to recline so there would not be so much pressure on my pelvis, because that would hurt.  Otherwise, I was fairly comfortable.  I can’t bend easily without pain, and instructions are no bending, stooping or lifting, so I am avoiding this as much as possible.  I can’t even lift my pocketbook without feeling sore.  On Tuesday, I developed a really bad cold and felt horrible.  The coughing and sneezing were so intense, and after having abdominal surgery, it feels really bad!  Having a pillow handy to hold onto my abdomen was critical.

The post-op spotting which had lightened up to where I thought I didn’t need to wear any pads, started up again.  I asked the doctors office about it, and they said it was normal to spot for a while as I’m healing. They said the thing to watch for is it being very bright red and heavy, like I’m soaking through a pad fast.  This was not the case - it was a pinkish-brown, not very dark in color, and it was not very heavy.

Bowel movements were another story too…it was so painful, more than I ever felt before the surgery.  Between the hysterectomy and excision of endometriosis from the bowel, I knew it was to be expected, but it hurt so bad at times.  I was not constipated at all, so that was not the problem…it just hurt no matter what.  I had to be patient and know it would get better as I healed, which could take time.

September 2004

Wednesday, September 1, 2004 

Two weeks post-op today and feeling a lot better, but still very sore and needing to rest a lot. My cold got better in only a couple days, so I felt better by Friday, but I still had a lingering cough…very annoying and uncomfortable!

I’d read where having a laparoscopic supracervical hysterectomy allows a faster recovery time and return to normal activities in two weeks – but that is definitely not the case, depending upon your definition of “normal activity.”  To me, that should mean I can do everything I normally can, whether it’s lifting, bending, reaching, etc. A LSH does allow some measure of faster recovery, but in spite of the absence of external incisions, there is a lot of internal healing to do.  The combination of excision left me with a lot of tenderness on my left side where the majority of excision was done, and my left ovary and tube were removed.  I didn’t want to drive too much at this point, but I was able to do so over to the shopping center, just 3 minutes from home.  I used a small pillow in between myself and the seat belt to help cushion my abdomen.    Today, I am out of paid time off from work, but I have borrowed a laptop from work and working part time from home resting comfortably in a reclining chair.  I have the laptop hooked up to my network router with high speed Internet access, and can log in to my office computer from home.  So at least I’m earning some money, but can rest when I need to, and I’m sitting comfortably while I work.

I’m still spotting, but it’s still not bright red or heavy, so I’m not concerned.  I’d read on HysterSisters, an online hysterectomy support group to which I belong, that spotting for several weeks after a LSH is normal.

Bowel movements are still painful…one time this week in particular was excruciating beyond belief.  I couldn’t stand up well and it hurt so bad as I tried to get to the bathroom.  Pat had just come in from outside and saw me trying to get down the hall, but I was just stopped, holding my abdomen and crying from the intense pain.  I certainly hoped this would go away soon.

To my surprise, I’d actually had one or two hot flashes…they seemed to be anyway.  All of a sudden, I could feel heat in my legs, which rushed up my body to my face, leaving me burning hot for a few minutes.  I’d varying stories about the effects of hysterectomy on ovaries, whether one or both is kept.  Often times, both ovaries will temporarily shut down after a hysterectomy and will resume function after a couple of weeks or more.  I also read where if one ovary is removed, it makes up for the loss of the other; but I also read where if one ovary is removed, the other does not make up for it.  At this point, I feel fine other than the occasional hot flash.  I don’t feel that I’ve been instantly put into surgical menopause, so I believe my right ovary is adequately doing its job.  Whether it’s doing double time for the loss of the left one, I don’t know – but I feel OK.

Wednesday, September 8, 2004

Three weeks post op today. Over the weekend, I received my operative and pathology reports from the CEC. It helped a lot to clarify what had been done, and the extent of disease.  I knew some things from our immediate talk with Dr. Sinervo after the surgery, but I like to know all the details.

My operative report indicated post operative diagnoses of: endometriosis, adhesions, adenomyosis and retroperitoneal fibrosis.  I was curious about the last one, but kept reading the report.  Procedures done were excision of endometriosis, lysis of adhesions, ovariolysis, ureterolysis, laparoscopic supracervical hysterectomy and left salpingo-oophorectomy.

The first thing noted on my report was that the uterus was 8 week size. Pre-op, Dr. Sinervo said on exam that it was enlarged, but his description from the op report put it at the size of an 8 week pregnancy. Had my uterus been left, this would only continue to have grown and increased in pain. He described the uterus as “boggy” and “globular”, both terms I’d read which describe adenomyosis.  As I again looked at the photo of my uterus and compared it to the photo from my first surgery a year and a half ago, the difference in the shape was amazing and very clear to me that adenomyosis was a problem and I was glad to be rid of it.

He staged my endometriosis at Stage II, which is classified as mild.  It’s amazing how a “mild” case can cause so much pain, which was anything but! The amount of endometriosis does not always correlate to the level of pain or other symptoms one experiences. Any stage of endo, from I to IV, can either cause no pain or symptoms or a lot of pain or symptoms. I hope that someday endo can either be cured or else prevented. In spite of being mild, my operative report indicated that I had extensive endometriosis along the left pelvic sidewall and uterosacral ligaments, as well as an area on my right pelvic sidewall, and the sigmoid mesentery (bowel).  All of the endometriosis was identified and excised.

In addition, my left ovary and tube was densely adhered to the pelvic wall.  It was freed up, and removed, as I indicated earlier, to prevent a recurrence of the adhesions or any further pain.  I read in the pathology report that the left ovary contained a hemorrhagic cyst. I’m wondering if every time I was ovulating on the left side, the functional cysts would bleed and cause pain. This was the third instance of a bleeding cyst (or, in the case of my previous surgery, an endometrioma)…so I was more than happy to be rid of that ovary if it was going to continue to cause pain. I hadn’t had such problems with the right ovary and the operative report indicated it was normal.

The next section of the operative report indicated dense retroperitoneal fibrosis surrounding my left ureter. I looked it up and it is a dense, fibrous “woody” tissue that grows in the retroperitoneal space, usually affecting the ureters. I found that it is a rare disease, and was more surprised to find it usually affects more men than women – and men who are older.  I didn’t fit into the disease profile, but that was just my luck. I was pretty upset about this as I read about retroperitoneal fibrosis, thinking I had yet another problem which would not go away, but plague me and continue to worsen.  I was pretty upset and found it difficult to stay calm.  I put a call in to Dr. Sinervo’s office, but he was away until next week.  I’d have to calm down, be patient and wait.  I tried not to let this upset me, but it was difficult.  I kept reminding myself that Dr. Sinervo said I have a 95% chance of no further problems.

Thank goodness, my bowel pain is subsiding now. It hurts a lot less, so I know I’m on the better side of healing.  As far as post-op spotting, today is the first day it lightened up, in color and in heaviness.

Today I am going to go back to work part time, and work the rest of the time from home.  I am very fortunate to have a wonderful employer which allows me this flexibility.  I got to work and my desk was decorated with streamers, balloons, confetti and candy with a big sign welcoming me back, signed by many of my co-workers.  At 9:00, I got paged to go downstairs (which never happens, so I was curious why I was needed to hobble down the stairs), and to my surprise there was a welcome back reception for me, with pastry, juice and coffee – I was very surprised and flattered.  I was told by everyone, including the partners, to take it easy and only come in as I felt comfortable.  I really was pleased with everything, and felt relieved, because at three weeks post-op, I was only OK to be sitting at my desk for half a day.  I brought my desk chair from home because the back reclined, and I used pillows to soften the seat, and kept my feet raised.  I still tire easily, so at home I’m resting a lot when I get home.

Wednesday, September 15, 2004

Four weeks post-op today. Saturday I went out shopping for a little bit, which made me tired and my left side tenderness flared up a bit.  Sunday I went to a wedding and felt sore from sitting in the chair, but otherwise, I felt pretty well.  I baked this weekend – made a great new treat I saw on the Nestle website.  There was a lot of prep work to it, so I sat down as I filled the muffin cups, and that wasn’t too bad, but it still tired me out.  I have been doing very well in not playing the hero and lifting anything I wasn’t supposed to.  As the weeks have passed, I can gradually lift more, but even carrying my purse strains my abdominal muscles, so I’m just bringing it in the car, but leaving it locked in the trunk.  On Tuesday, Pat and I went out to dinner for our anniversary. I felt pretty happy that I could eat anything I wanted and not experience endo pain or intestinal problems….but I want to continue to eat a good, endo-friendly diet which helps keep estrogen levels low.

Dr. Sinervo called me back today to discuss my questions and concerns about retroperitoneal fibrosis from the operative report. I explained what I’d found out about it, that I was concerned it would continue to grow.  He said the retroperitoneal fibrosis I had was due to a specific cause: the extensive endometriosis on my left side caused a lot of inflammation and scarring, which developed into retroperitoneal fibrosis on that side, and which encased my ureter. He said he removed all of the fibrosis from the ureter, and said that the source of the fibrosis was the inflammation caused by the endometriosis. Since the endometriosis is gone now, the fibrosis will not return and grow back.  I was very relieved that it had a specific cause and now that cause is gone, so the fibrosis is too.

Later, I had a follow-up appointment with my PCP for my low thyroid, which was supposed to have taken place last month, at the time of my surgery so I needed to postpone that. My doctor was happy to know I was doing well and that I had received HMO approval as well.  I mentioned to him about what Dr. Sinervo said about retroperitoneal fibrosis, and while my PCP was not very familiar with it, he said it was unlikely two separate disease processes were occurring in the same place at the same time.  He agreed that the retroperitoneal fibrosis was secondary to the endometriosis.  I was still feeling tired and sluggish post-op, but he didn’t recommend increasing my thyroid dose, because I felt good on that dose pre-op.  He said I would still be tired for a while post-op and not to increase the dose unless a longer period of time elapses (several months) and my fatigue does not improve.  But for now, post-op fatigue is expected for another couple of months.  I’m going to have my thyroid levels tested, but he made it clear that the numbers are a guide only and that it is critical how I feel.  He said even if my numbers were in “normal” range, that if I felt bad, he would increase the dose until I felt well.  I felt good about that because there are many doctors who consider lab values only and not how you feel…I’d heard stories of women who felt good, but had low range numbers only to be told their dose is too high, and have their medication reduced – then they feel bad!  Or else, women whose thyroid levels are good, but they still feel bad, so they do not get an increase in medication because their numbers are good!  How ridiculous.  I’m fortunate!

The spotting had diminished a lot…it’s barely there now, though I still need to wear a pad just a little.  It’s the palest pink and barely noticeable.  I have some minor tenderness on my left side, which flares up with too much activity.

Wednesday, September 22, 2004

Five weeks post op and continuing to improve. The spotting is entirely gone now and bowel movements aren’t painful (no more than any normal person that is).  The tenderness on my left side is still there, but reduced a lot.  I’m feeling very good, and I can tell the old pain and the sense of fullness is gone.

Last Thursday, I had a 4 week post op visit with my local ob-gyn.  He was very excited to find out how I was doing, and pleased that I was doing very well. He asked about the surgery, and I gave him a copy of the surgical report and photographs the CEC provided for him.  I thanked him for helping me with the referral and approval and he said he was happy to do so, that it was the right thing to do for me.  He said he would write a letter to Dr. Sinervo indicating how I was doing post-op and would send a copy to the medical director of my HMO to let him know that the decision was a good one, and that it helped me improve tremendously. He didn’t want to send the letter to be spiteful, just to let him know that approving the out of network request was the right thing to do.

Last Friday, the tenderness on my left side flared up when I went to a Corvair club function with Pat.  I was feeling OK, but I was taking some pictures of the valve cover races.  I bent down to get an eye level-view of the race track, and my left side hurt…so I knew I’d need to be careful about bending.  I followed this with going to a football game where Amber was in the school band during half time…the walk to the field and sitting in the stands didn’t help the pain I was in, so I knew healing was still taking place and I’d have to take things easy.

Monday, September 27, 2004

Five and a half weeks post-op and I’m feeling extremely well. There is only the slightest tenderness remaining on my left side, though my abdominal muscles can get easily strained and tender.  I’m doing some stretches and exercises to strengthen the muscles. Otherwise, the old pain is gone.  There is no sense of “fullness” to my pelvis.  Before, I always felt a heaviness in my pelvis, like I could actually feel my uterus there, weighing me down.  Now, that feeling is gone, as is the low back pain I’d had.  I still get tired a lot too…I felt pretty good Saturday, September 25, when Pat and I went to the James Dean Festival in Fairmount.  I held up for most of the day, walking around at the car show, over to the parade and back.  I was so happy to finally feel normal!  By later afternoon, though, I was starting to get tired and a little achy, so I knew I had reached my tolerance point.

On Sunday, I had a little ambition to do some cleaning.  I didn’t do anything strenuous, but I got tired pretty easily.  I fell asleep for several hours on and off, but otherwise felt OK.

October 2004

Wednesday, October 13, 2004

I am 8 weeks post-op today.  All of the tenderness on my left side is gone, as is the tenderness in my abdomen.  The only problem I have is sitting on my hard kitchen chair for too long tends to still make me achy.  I think chair pads would help that - I'd been meaning to get them forever anyway - I hate hard chairs!  Otherwise, I am feeling wonderful - no periods, no cramps, no stabbing pains through my left side! For a long time I had to live with chronic pelvic pain and I got so used to it...never accepted or tolerant of it, but yet used to every day pain.  I did remember, however, how it felt to not have any pain or have that sense of fullness in my pelvis.  It is nice to really feel that way now!

I will continue to update this page with my healing progress.

January 2005

Sunday, January 23, 2005

I am still feeling very good, five months after my surgery.  I have found that eating certain foods, which caused me alot of pain before, can still cause me some minor tenderness at times.  It usually happens if I eat too much sugar, which is well known to be a pain trigger - not only with endo, but many other ailments as well.  Thank goodness, though, it is not very bad...just a minor tenderness.  If I don't overeat those foods, it doesn't hurt.

In my narrative above, I mentioned that I noticed at some point I was developing alot of bowel and bladder problems with my endo.  I did manage to pinpoint that I was having trouble with certain dairy products, most notably with milkshakes and ice cream, I would get bad cramps and other intestinal problems immediately after having those.  I tried taking Lactaid and that helped. Now, the problem seems to be occurring with other dairy products such as milk and cheese, with varying symptoms (typical of lactose intolerance). I'm surprised to have developed lactose intolerance - I have found nothing which directly ties endometriosis/adenomyosis to lactose intolerance.  However, I did see that lactose intolerance can be caused by an illness or injury to the bowel. I'm wondering if endo on the bowel can be considered an "illness" to the bowel which could interfere with lactase production.  Anyway, Lactaid helps, so I can have dairy and not worry so much.

May 2005

Tuesday, May 3, 2005

I'm close to 9 months post-surgery and still doing well. I am hopeful this will be the first summer in the past three that I will not miss (or have to suffer through) some of the fun events Pat and I enjoy - like the three races at the Indianapolis Motor Speedway, road trips, etc.; that I can work out without intense cramps and pain; and that I can tend to my garden too!

So far so good - Pat and I have ridden our bicycles the past two weekends. The first weekend we rode 12.3 miles through downtown Indianapolis on the White River Trail, the Central Canal Towpath and the Canal Walk. It was fabulous!  No cramps, no endo / adeno pain doubling me over. On Sunday, we drove up to Broad Ripple and did 10 miles on the Monon Trail. And this morning, I started my new Billy Blanks Tae Bo Boot Camp, which I'm very excited about. I bought the original Tae Bo tapes back in 1997 and loved them!  Unfortunately, after my endo symptoms started, working out became difficult.  There were *maybe* a few precious days a month I could exercise and not end up in pain.

It was a year ago that I was battling my HMO to go to the Center for Endometriosis Care; that I had to deal with that 2nd opinion doctor. I continue to enjoy feeling good and hope the battle is over!  I'm sad a little, in that I just found that both my PCP and my local gyn, are not practicing medicine here anymore. My PCP is moving out of state and my gyn was injured and lost some of the use of his hand. Thus begins the search for TWO new docs who will need to learn my medical history/background. Fun stuff....but for now, I'm happy to be well.

June 2005

Friday, June 17, 2005

I have continued to feel very well lately. I have neglected to exercise, not due to any pain, I've just been busy with other stuff.  Mainly gardening and yard work, which is good exercise anyway.  This is another thing, as I mentioned above, that I could not do in previous years.  Now, I have worked very hard outside, all day a couple of days, digging, raking, weeding, etc....my garden is in great shape and I am grateful I can do that kind of work now.  I also got the house in great order - well, pretty great - I'm still working on it.  But again, this kind of work was not possible before. But then....I don't really enjoy housework!  But I feel better living in a neat environment, and getting all my stuff in order.  I just have to take my time, because I know I can fix it all in a short time, since it took a long time to get messed up! I'm doing what I can when I can.

I also managed to work at the Indy 500 this year, and even walked over to the track on race day and worked there too.  I'm finally doing things I want to do....this is just great.  This weekend I'm working two full day shifts at the track for the Formula One race.  Much better than having to miss that as I have had to do previously!

December 2006

December 31, 2006

I haven't updated this in a while, and with as many visitors as I get, I thought I'd make an update to be current. I'm still feeling very well, and so glad I had surgery at the CEC!!

February 2007

February 3, 2007

Part of the problems I had with endometriosis and adenomyosis prior to the surgery, were intense pain and cramping, and problems with eating certain foods. I have always had a marginal digestive system, but endo / adeno really made it worse. I was excited about feeling better after the surgery, and could have started exercising afterward, but I don't really like to exercise. I have plenty of exercise tapes and DVDs I enjoy, but I have a real motivation problem! About 15 years ago, I'd exercise alot, but I wasn't interested in many of the things I currently enjoy doing - cooking, Italian heritage, genealogy, Italian lessons, photography, computer graphics...the list goes on.

At the time of my surgery, my weight wasn't too bad. I had done Weight Watchers and had gotten down to only 10 or so pounds above my ideal - by diet alone, because I really couldn't exercise due to endo / adeno. So, weight loss wasn't as much of an issue as recovery from surgery and focusing on that. As well as I have felt after my surgery at the Center for Endometriosis Care, the problem I experienced was that because I could "eat anything I wanted " (see my entry of September 15, 2004), I did... and before you know it, weight gain creeped up on me while I wasn't paying attention. I wish I had been paying attention, because 40 pounds later, I was feeling it!

I was having trouble breathing for the past year (2006) and just generally miserable about my shape. So, I went to the doctor at the beginning of January and she gave me an inhaler to help me breathe so I can exercise. I couldn't do the Tae Bo tapes or DVDs I had, they were too intense for my non-existent level of fitness. The hope is that as I exercise and lose weight, breathing will be easier. So far, I have lost 10 pounds and I'm starting to feel a little better already. I'm looking forward to being my old self! At least now I can exercise and not deal with the endo and adeno, and the inhaler helps with breathing. The motivation part was my biggest issue....but I found a new activity that I enjoy and can do for a long time because it's so fun.

I have a Playstation 2, and last Christmas (2005), I bought one of those DDR dance pads for my daughter...well, I ended up using it more than she does! The first game I bought, DDR Max2: Dance Dance Revolution, has pretty good dance moves, though it can be difficult to get the hang of. The only drawback to the better DDR games (at least if you aren't in your teens or 20's, ) is that the music is current dance club music. I like that to an extent, but after a while, it all starts sounding the same, so that's the only thing that got me bored with it. I thought the game concept could be so much better if they had a wider variety of music....enter a game called Dance Factory. This Playstation 2 game works with your own music CDs, so you can dance to any music you like. Unfortunately, it's not perfect by any means; the auto - generated dance patterns aren't really like dancing, just synchronized foot stepping. I'm sure DDR aficionados would find it's simplistic patterns to be too easy and clunky. Someday, I am sure they'll come out with a better version of the game, but for the time being, it gets me moving to music I enjoy, and helps me lose weight. Dance Factory helps me achieve that goal, so I'm fine with it!

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