Still feeling fine!

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!

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Nine months after surgery

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.

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Five months after my surgery

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.

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8 weeks post-op

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.

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Five and a half weeks post-op

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.

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Four weeks post-op

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.

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Three weeks post-op

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.

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Two weeks post-op

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.

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One week post-op

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.

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Post-op road trip

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 food 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.

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