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Was feeling great, now 6 mos. later not so good. Was feeling great, now 6 mos. later not so good.

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Unread 01-17-2008, 04:03 PM
Was feeling great, now 6 mos. later not so good.

I’m almost six months post op. Initially I did great. Never had much pain, was back at work in 6 weeks and back on my horse in 8. I was feeling great so at the end of November (4 months post op) we went to Disneyland. I did pretty good there – got more tired than usual and went back to our room each afternoon for a rest. After we came home I came down with a terrible cold and my tummy began to feel more sore and would get more swollen at the end of the day (more so than it had been). My right side and the area between my incision and belly button are very, very tender, sometimes painful. I called my gyn/surgeon to make an appointment and they wouldn’t see me. The nurse told me that I should be fine and if I was having problems it wasn’t due to the hysterectomy but probably had something to do with my colon so to go see my GP. Well that freaked me right out. I made an appointment with my GP for later that week. My stomach began to bother me and I started having some digestive issues, something that I’ve never had my entire life (I’m 40). I feel bloated about half the time and can't eat. So I go to my GP and he says my problems are due to the hysterectomy and sent me in for a pelvic and abdominal ultra sound. This all has me stressed out and my stomach problems are getting worse and worse. I have no appetite and have lost 10lbs. On December 29th I ended up at the emergency room with severe abdominal cramps. I was told my ultrasound looked fine, except that I had a bunch of ovarian cysts. But they did not think they would be causing me any problems because while there were a lot of them, they were small. They did a CT scan and blood work at the hospital and said everything looked fine. Gave me some “happy” pills and sent me home. I called back my surgeons office and insisted that I see him. They got me in the following week. He did an examination and agreed that the cysts should not be causing me any problems and again insisted that there was something else going on. All through this I have seen my GP 3 times, my surgeon once, and the colon dr. I have had all kinds of tests, been poked and proded and still no one seems to have an answer. The GP and colon dr think the problems are because of the hysterectomy, the surgeon thinks it is something else.

I don’t understand how I could do so good for the first four months and then go so far backwards. My sister in law thinks it’s from the rides at Disneyland. My GP thinks that Disneyland probably wasn’t a good idea. But according to the ultrasounds and ct everything looks good in there. So I guess, what I’m wondering is if anyone else has had any problems like this? And how about digestive issues? I’ve been tested and tested and everything comes back fine, but I feel like there must be something wrong.
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Unread 01-17-2008, 04:39 PM
Was feeling great, now 6 mos. later not so good.

Oh, Sweetie,

I'm so sorry to hear you're going through all of this. I think most of us know how awful it is to know something is wrong with us and not have doctors be able to find what is!

I'm by no means a doctor, but has anyone considered that you may have adhesions on your colon area causing some of these problems? I have heard of this...........just a thought........adhesions cannot be seen on scans/xrays, etc.

I sincerely hope that you figure out what is going on with you.......keep us posted and you will be in my thoughts and prayers.

In there!!

Unread 01-17-2008, 05:27 PM
Was feeling great, now 6 mos. later not so good.

Well first of all, you sound like you could use a hug:

If you are in pain, then something is wrong. The doctors are wrong to say "you shouldn't be hurting"-- because that does not solve the problem and probably makes you feel worse. (I know it would make me feel worse.)

One thing that helped me when I was going through the pain with my fibroid was to keep a journal of my symptoms. I tracked my bleeding and cramps. Then when I went to talk to the doctor I had "data" which gave him more to work with than me saying "I get cramps a lot". You might try this for some period of time and see if there are any patterns.

I'm not sure what else to suggest, except that you might want to consult another doctor or doctors. Perhaps another person will see what these doctors have missed. Good luck and I hope you find an answer soon.
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Unread 01-18-2008, 08:15 AM
Was feeling great, now 6 mos. later not so good.

Thanks for the thoughts and hugs ladies! I love both your avatars, by the way.

I have started a symptoms list and am going to make an appointment to see a different doctor today.
Unread 01-18-2008, 09:22 AM
Was feeling great, now 6 mos. later not so good.

Hi there! I am sorry to hear that you have cysts. From my experience, no matter the size...they DO HURT! Don't let a doctor tell you otherwise. Sounds like you have joined the ranks of us ladies who need to remain aggressive with their health care and make sure every area is surched out to find out what's causing the pain. I recently found out that I have a pelvic infection and I'm nearly 9 wks post op! I too am going for that lovely pelvic ultrasound (trans vaginal) on Monday! I had layer upon layer upon layer of endo scar tissue that they removed with my hyst and she said there could be some that came back...even though they took out my oves.

Hang in there! You are not alone!
Unread 01-18-2008, 09:31 AM
Was feeling great, now 6 mos. later not so good.

new to this site
and going thru exactly what you are going thru
doc put me on a hormone for cysts and to shrink anything else in there (only for awhile tho)
I was diagnosed with ibs a year ago and that might be part of your problem I have a dull abdominal pain all the time and just feel sore (Had a supracervical hyst in May 2007) i'd like to know if anyone else has anything similair or what happened to your problem thanks much
ps I also have 2 docs sending me back and forth (gyno and gastro- one blames the other condition and I feel like I am losing my mind )
Unread 01-18-2008, 09:50 AM
Was feeling great, now 6 mos. later not so good.

Before my TAH, my original GYN told me my ovarian cyst would not cause pain. I went through 2 hours of excruciating pain (worse than childbirth) and went back to see him. No, he said the pain was from something else!!!! Well, I went to another GYN and he told me the cyst was twisting and causing the pain. (the cyst was 10in. by 8in.) good size...and immediately scheduled me for surgery. Don't listen to him just because he has MD after his name. Some are useless. Keep looking until you find one that is concerned and will look for cause of pain. They do exist.
Unread 01-18-2008, 10:12 AM
Was feeling great, now 6 mos. later not so good.

yow that sounds bad hope you are ok
thanks for the advice I will keep plugging to get to the source of pain and seeing different docs if need be
my next life I'll be a man ha
Unread 01-18-2008, 10:56 AM
Was feeling great, now 6 mos. later not so good.

Starperch: I'm so sorry that you are having pain now 6 months later. I'm also sorry that you have had to go through all these frustrating appointments with no relief and no answers. I really hope that you find a doctor that will listen and help you and that you will be out of pain soon.

cocowhistles: I hope you find some answers too! I know it must be extremely frustrating being caught in the middle of 2 specialists who each think the problem is something different. Good luck to you, and I hope you'll feel better soon too.

Noble1: Your doctor told you the endo could come back that soon? My doctor found endo at the time of my hysterectomy (a surprise since it had been 10 years since I was treated for that), but I don't think he took it out. I've been having terrible cramps for about the last week, and I wondered if it wasn't the endo implants. I still have my ovaries, so there is that potential still.

Psynurs: I totally agree with you, keep looking until you find one that will do something. I had an ovarian cyst on one ovary for about 7 years, and my two previous doctors knew it and never did a thing about it. They always made on like it was no big deal, even though I constantly complained of pain on that side. By the time I got to my current doctor 7 years later, it was quite large and he couldn't understand how I could have gone like that for so long. It ended up being even larger and more involved (it had wrapped around the uterus) than even the ultrasound had shown. So, I totally agree that finding a doctor who will do something is important.
Unread 01-18-2008, 11:22 AM
Was feeling great, now 6 mos. later not so good.


I can completely relate to your story. I had a TVH in Nov 2006 and recovered really well and rather quickly. Then sometime in the spring of 2007 started to deal with chronic fatigue, serious constipation and random pelvic pain. Back and forth between the GP and GYN a couple of times left me feeling as though I was crazy, so I just put up with the symptoms for a couple of more months. The drs had found an ovarian cyst, but told me that it wasn't large enough to be problematic and treated me symptomatically. In July, my cyst ruptered and I ended up in the hospital. Even then, between the hospitalist, my GP and GYN I was sent home after a couple of days on happy pills and told that they needed to monitor the cyst via ultrasound over the next several months.
At this point, I couldn't function. I couldn't perform routine household tasks like grocery shopping without hurting and becoming exhausted. I ate a lot of pain pills and didn't dare have sex without fear of days of misery. It just felt as though a bowling ball was sitting in my pelvis. My GYN decided to do a laproscopic surgery in Oct. after repeated ultrasounds showed that the cyst was hemorraghic and still bleeding and to check for possible endo. I ended up having a laparotomy and BSO. I had adhesions that had formed from the TVH and with the bleeding cyst that resulted in a bowling ball mass of bowel adhered together. Ironically, no sign of endo.

Be as aggressive as you need to be with your health care providers. I can't believe that I lived in that kind of pain for that long. After my surgery my GYN said that she couldn't believe that I was as tolerant as I was for that long. You know your body. Listen to it. Find another doctor if you need to.

Good Luck!

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