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Abdominal distension and Adhesions(Post-Hyst) Abdominal distension and Adhesions(Post-Hyst)

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  #1  
Unread 10-14-2008, 03:02 AM
Unhappy - Abdominal distension and Adhesions(Post-Hyst) Abdominal distension and Adhesions(Post-Hyst)

I had a Hyst (Supra-cervical) in 2005. This means that everything was removed except for part of the cervix as the docs couldn't remove it without puncturing part of the bowel.
Last Nov., I was having problems with bowel movements, so I was pulled off estrogen to kill off the remaining endo.
Now, the situation has gotten so bad, that I live on Miralax up to 3 times daily (doc's orders), just so that I can have bowel movements. My stomach looks as if I am 7 or 8 mos. pregnant, and I am scheduled for an MRI and Ultrasound next week. Also, my blood work is going crazy with my sugar, thyroid, blood pressure, and potassium levels.
The docs believe that since there was so much work done with my hyst as the endo fused all my abdominal organs together, that there are now adhesions attaching to my bowels, muscles and possible arteries in the abdomen. It looks at though I will have to have a laproscopic surgery.
Has anyone had anything similar? I am going crazy with the pain in the lower left pelvic region, and with all the stomach swelling.........pain under the left side of the rib cage.
I am just plain miserable
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  #2  
Unread 10-14-2008, 10:08 AM
Abdominal distension and Adhesions(Post-Hyst)

Claire - we sound very similar. I had a Hyst (supposed to be TAH) in Jan '06 due to stage IV endo. When the doctor went in, she had to leave my cervix as it was cemented to the colon w/endo and would have caused permanent damage. I also had adhesions then. The surgery did nothing for me in reducing my pain levels. I've spent the past 2+ years dealing with the horrible pelvic pain and trying to find a doctor who would believe and treat me. That finally happened earlier this year. He believes my main problem is the adhesions and he referred me to a pelvic pain specialist. The specialist has me scheduled for surgery in January '09 to hopefully remove the remaining endo, any adhesions and my cervix (hopefully w/o a colostomy bag). It's an awful situation! I'm hoping this surgeon can at least give me some pain relief so that my quality of life can be returned. I'm only 43 y/o and the prospect of having to live the rest of my life on pain meds and in pain isn't appealing. Hang in there and keep us posted on your progress. This is a great place to get information and support as well as just plain venting! Good luck to you! ~Katie
  #3  
Unread 10-14-2008, 12:52 PM
Abdominal distension and Adhesions(Post-Hyst)

Hi,

I am new here. I am having the same problem. I just got home from the doctors. I had my TVH/BSO in Jan 08. The last two months the pain has been unbearable. The problem was I was having some problems and the doctor kept raising and lowering my HRT to find the right level. When I was on a high level the pain came back and now has not gone away for a month. The only two options I was given is go on Lupron (No I can't handle the side effects of Lupron again), or do a lap to take out the endo. That the doctor thinks is still there. I am so fustrated. I had seven great months and now this. Endo seems to never really go away. So hopefully I will get in to surgery before we move. We are military and about to move again so I have to get the surgery within the next three weeks and then we will be on the road visiting family for 30 days and then report to a new fort. At least I will have family around to help with the kids. It is the little things like picking up my kids that gets me so fustrated because I thought the pain would be gone. I am just venting. I am so happy I found this site.

Jess
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  #4  
Unread 10-14-2008, 03:52 PM
Abdominal distension and Adhesions(Post-Hyst)

It is good to find someone with the same frustrations. And Jess, this is through WPAFB in Ohio. Military hospitals are so frustrating, as you well know, as it seems that each doctor is passing the buck, so to speak.
I just hope that one day, this will eventually clear up. KMB, what is this w/the colostomy bag? Is it temporarily?
  #5  
Unread 10-15-2008, 01:01 AM
Abdominal distension and Adhesions(Post-Hyst)

I would really recommend trying to see an endometriosis specialist. A lot of us who take the step to see an endo specialist have to do so outside our insurance plans and pay out of pocket but it can be very well worth your time and money and your health could improve greatly! I have no regrets seeing mine and my health has made a great turn around since surgery with the specialist!

I wish you all the best and hope you find some answers soon!

S
  #6  
Unread 10-15-2008, 07:48 AM
Abdominal distension and Adhesions(Post-Hyst)

Claire - apparently my cervix is attached so low on the colon and at the time of my hyst, was attached by so much endo that the doctors fear they may have to remove part of the actual colon in order to take the cervix. This doc is hopeful that it will be temporary, with him going back a few months later and reattaching the 2 ends of the colon; although the docs before him have said the location of the cervix (too low) on the colon would cause the bag to be permanent. I'm just going to tell the doc ahead of time that if he thinks for a minute that the bag would be permanent, not to take the cervix. I've got my fingers crossed and my prayers going! ~Katie
  #7  
Unread 10-15-2008, 07:57 AM
Abdominal distension and Adhesions(Post-Hyst)

As to seeing an endo specialist through the military, I would have to have special permission through that insurance. Yes, the office visit would be affordable, but not the operation.
KMB, your situation sounds exactly (and I mean that) like mine. I see an gyn. tomorrow, which I hope that is going to be OK, as one of his nurses is getting snotty w/me over the phone, as I am trying to see if the doc could try to speed up the ultrasound before the appt, instead of after.
But, I do have one ace. The surgeon who removed my Phyllodes tumor last year, told me that if gyn doesn't want to do the surgery, then he will do it as he has been following my situation. This surgeon has been a godsend as he was the person who recognized how dangerous my tumor was.
  #8  
Unread 10-15-2008, 04:10 PM
Abdominal distension and Adhesions(Post-Hyst)

I know it is expensive to have surgery with a specialist; I borrowed money to pay a small fortune to do so in January and without the blessing of my insurance company. But as my lower colon was involved, neither I or my DH wanted to take chances with having anyone except the best of the best doing the surgery to minimize complications and maximize the value of the surgery.

I hope whomever you choose to do your surgery is able to successful do what needs to be done. If a resection is needed, my endo specialist pulls in a second surgeon who specializes in such surgeries. Will your surgeon do that as well?

Sending s your way!
  #9  
Unread 10-15-2008, 07:09 PM
Abdominal distension and Adhesions(Post-Hyst)

At this time, I have to go with the military specialists. The general surgeon who removed my Phyllodes tumor last year is speaking with gynecologist that is supposed to be a wonderful specialist who deals w/cases like mine. I will speak with him tomorrow.
  #10  
Unread 10-16-2008, 03:54 PM
Abdominal distension and Adhesions(Post-Hyst)

Just wanted to let you know that the surgeon that I saw today at the military base is an endometriosis specialist! Yea!
But, to start off with, I had a very bad day. On the way to the Dr.'s appt., I was involved in a traffic accident, which resulted in my SUV being towed as it was undrivable. Luckily, I wasn't hurt, but still in pain in my abdomen. So, I rescheduled the appt. for this afternoon.
I was in an hour+ long appt. I am a level 4 endo patient, and was told that if I go to surgery now.............it would be very bad. The worse case senario........a colostomy bag (temp or perm). This would involved up to 4 surgeons operating, with 3 of the surgeons as gynecologists w/different specialties. We are still waiting on my ultrasound and MRI next week to see exactly what is going on.
My blood work showed that even though I had a supracervicle hyst., I have remnants of ovaries still buried somewhere in me that are very active. In fact, I am still ovalating! Instead coming out of my body, it is within my body.
One other option may be a "miracle" hormonal treatment of Aygestin and Femara. This has shown (according to my Dr.) that in 85-100% of study patients, this treatment has erased entire cases of endo, and even endo tumors. My problem has been in the past, is my body doesn't respond well to hormonal treatments, and is very, very sensitive to the side effects. This treatment also has the side effects of severe depression, severe mood swings, and severe pain (first few days). So we are starting on small doses, and trying to slowly get my body used to it. We are also doubling the anti-depressant in order to minimize depression and mood swings.
I can't believe that I am not in menopause. My mouth was practically hanging open during the appt. No wonder, things were going wrong.
But...........still not out of the woods yet, as we have to see what is on the ultrasound and MRI next week. Still may have to have surgery, but hopefully minimal.
What I really need now is a miracle...........................
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