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I need some hugs and support... I need some hugs and support...

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  #1  
Unread 03-24-2004, 09:00 AM
I need some hugs and support...

Hi ladies...

I'm going back in to have my remaining left ovary removed, along with a cyst (endometrioma). I've been in and out of the hospital twice lately because of some bowel obstructions (may be due to adhesions). I've had intestinal problems since my hyster last April.

Anyways...I'm terrified of the surgery...the pain management afterwards never seem to work for me (I end up in severe pain for hours) and the experience I had at the hospital for my hyster was a nightmare and I'm afraid of having that hppen again.

I don't know what to do. My DH said we can look into another hospital, but how can I be sure I won't have something happen there? I'm terrified. I cried all last night (literally didn't sleep...just stayed awake afraid of all this). I was told the surgery will likely be an abdominal one (too many adhesions for a laparoscopy) so I'll have to stay there. I'm sooooooooo scared!

I'd apreciate any advice and hugs. I feel like no one understands how scared I am, or why. I've never felt okay about hospitals, but my last experience made me terrified.

Rita
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  #2  
Unread 03-24-2004, 09:27 AM
I need some hugs and support...

Oh, hey, Rita:

Lots of gentle healing s

Although I am not you and no one can really understand fully what you are feeling, I do empathize on the being scared of surgery and the whole loss of control that we can experience when we check in, especially if we must stay overnight.

I found what helps me is to fully discuss all my fears (rational and irrational) with my doctor ahead of time and let him address them one at a time. Luckily, my doctor responds very compassionately and has never dismissed my concerns as silly but still finds a way to minimize them or promise me that he will handle it (and he does). That is his job, after all.

I hope you have a wonderful, caring physician to whom you can bring your worries and have them addressed for you. Know that you have a right to effective pain management and that you really need to let your doctor know NOW which meds did not touch the pain so that they can give you something that will work better. That is a completely rational, valid point for you to make as a patient and your concerns should be addressed.

I'm saying a prayer for you that you find peace and understanding!
  #3  
Unread 03-24-2004, 10:04 AM
I need some hugs and support...

Dear ((Rita))

I hope the surgery goes well with no complications. I can totally relate to the fear, especially for the pain afterwards. I have found that I had better pain control when I was kept in the hospital after surgery then when I had out patient laps.... with those they don't seem to care how bad your pain is just whether you are up and leaving the hospital.

I had a terrible pain experience with my TAH and with the outpatient lap I just had at the Mayo.... this last time I had told the doctor, nurse, everyone I was concerned about the post-op pain and they assured me they would take care of it but it was to no avail.... BUT when I had the second surgery I talked with my local Gyn about how bad the pain was (from the internal bleeding problem) and even though I only had a lap he kept me on a PCM for 24 hours... it was very helpful and got me through the worst part.

Like ((Michelle)) said I would definately mention your fears to your Gyn. Perhaps he can arrange to have your post op pain managed differently.... but if it does happen the way I got through it both times was just telling myself over and over that it would eventually get better. Be sure to talk with your doctor.



Sarah
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  #4  
Unread 03-24-2004, 10:17 AM
Many hugs

Dear ((((RITA)))),
My thougths and prayers are with you. I can totally understand your pain issues. After my surgery on 2/27 they were going to send me home. I was not comfortable, I was in a lot of pain and I had not seen my dr at all. I expressed my concerns to the nurses and they called him and he wrote the order for me to stay over night and be made comfortable.
Now for the pain mgnmt after the surgery I am still fighting but oh well you can't win them all.
I will pray for you and know that with The Lord and his angels watching over you all will be well.
Take care
Lots of hugs
Jeni
  #5  
Unread 03-24-2004, 10:59 AM
I need some hugs and support...

Rita,

What if you call the patient care advocate at your hospital and talk about your concerns? It sounds as if there were problems with your care in addition to the pain management, and you alert him/her in advance, maybe they can be extra watchful.

At the very least, it might make you feel a little more in control of the care you'll be getting.

Perhaps you could also arrange at least a phone consult with the anesthesiologist and let them know that whatever was done for pain in the past didn't work for you, so he/she can be alert to that and plan for it during the surgery.

Sending my biggest .
  #6  
Unread 03-24-2004, 11:43 AM
I need some hugs and support...

Sending you many s Rita! Everyone who posted before me is right and they gave you great advice. I learned something when my hubby had open heart surgery. His nurse kept asking him if he needed something for pain. He kept saying no, she reminded him to keep ahead of the pain and please don't hesitiate to ask for something, She told him you "heal faster when you are not in pain!" So tell them, bug them do whatever you have to to get relief! Maybe take something every 4 hours round the clock for the first day just so you are comfortable I hope you have a much better experience this time around. I feel for you. I have been there myself. God bless and good luck! I will say a prayer for you........


Emily
  #7  
Unread 03-24-2004, 06:27 PM
Thank you ladies...

Thank you soooooo much for your support and hugs!

I met with the doctor today...lol, my DH did all the talking, except when it came time for me to mention how painful the cyst was...then I spoke up, until I started crying. Then I just sat there again. *sigh*...why can't I speak when I need to?

I will talk with him in my pre-op appointment about the pain control.

My DH said that he'd go with me to the hospital in the next few days to speak with the patient representative. We talked with her last year when I had the nightmarish time there (sorry I wasn't clear on that in my last post) and we'll speak with her about preventing it this time. She was very kind, and I saw her walking the halls when I was in last week, so I know she still works there.

I admit...I'm more scared now than I ever was for my hyster. I'm terrified of menopause. I don't want to end up feeling depressed all the time. I've lived a lifetime of that and only recently (the past 2-3 years) have I been okay. This is the only depression-free time I've ever had in my life and I'm scared I'm going to go right back into it again.

Thanks for listening (or reading I should say, lol).

I love this place so much...I honestly don't know what I'd do without the help I've found here from such supportive sisters.

Hugs,

Rita
  #8  
Unread 03-25-2004, 01:14 AM
I need some hugs and support...

(((Rita))):

You HAVE been through the mill, haven't you?? .

I'm sorry I've not been around much, but it's not for lack of thinking of you guys. I can sure sympathize with your pain control concerns, particularly now that your pain threshholds have been ratcheted up in these last few months.

I would ask about epidural for the first day or so. My hospital (you know the one -- biggest in your neck of the woods, with a dedicated women's hospital) does offer that sort of pain relief. They can run it at a concentration that keeps you out of pain yet lets you move about and exercise your legs. I had one following my "crash" c-section for two days (my arteries were in spasm from toxemia, and that pain was worse than the incisional pain) ; it was the best pain relief I'd ever had. You can always meet with an anesthesiologist prior to the surgery; it may not be the same one who actually does it, but they'll have the notes of the visit.

I know you've told me this, but my has made me forget: do you have a GYN-oncologist for this go-round? If there's any question of bowel repair, particularly with your history, you really need their expertise. Did I space out and forget to send you the names of the group I went to? If so, PM me and I'll try to get back to you (realistically, may not be until Sunday -- it's a crazy week). One way of convincing your insurance to let you go to a GYN-oncologist is to point out that the "regular" GYNs, in most hospitals, are NOT credentialed to do any intestinal repairs. However, the GYN-oncologists, with three more years of surgical experience with complicated patients, ARE. The better the surgery, the less likely you are to have continuing adhesion problems. I know it's scant consolation, but some significant number of bowel obstruction patients turn out to be women within five years of GYN surgery. The oncologists would be able to do any work necessary there.

A comment about the depression and surgical menopause issue: many of us with endo are estrogen-dominant. I battled depression my whole life, and it wasn't just due to chronic pain (strong but unvoiced family history). PMDD was a very real entity to me (although the naming of it is more a drug company construct). I would be crazy just before my periods.

Amazingly enough, my mood AFTER my surgery was much improved. I was more even-tempered and more likely to say what was bothering me rather than swallow it and turn that irritation or anger inward into depression. It's taken some getting used to by my family, and I have had some depression during stressful times, but on the whole, on Prometrium alone, I've done much better. I just wish my HRT regimen would take care of that adult ADD thing I've got!

Obviously, your mileage may vary. But I just want to let you know that it can turn out all right. You'll want to discuss your HRT plans with your doctor. It may not be the same person that did your surgery. I haven't seen the surgeons since the first 6-wk post-op check -- ignored the prescriptions that they wanted to give me, and went back to my GYN, a fellow hystersister.

I do need to be careful about remembering my supplements; libido seems to work just fine with a dab of compounded testosterone; and I have to keep up my diet and exercise. Menopause is definitely a "higher maintenance" state, no question. But I've not been miserable with it, especially now that it's been nearly two years.

I sure hope you get some answers soon. I know how desperate you are for relief!



Audrey
  #9  
Unread 03-25-2004, 06:49 AM
I need some hugs and support...

Rita,

Here are a couple of other hints for talking with the surgeon and anesthesiologist about your pain control --

--be completely honest about what pain medications, and in what doses you have been taking. People do build up tolerance and it may not be the specific medication, but the dosing that is the problem.

--people vary in how well they tolerate anesthesia, and if you have other health problems or smoke, it can be difficult to give you enough morphine/demerol to cover the immediate post op pain and keep you breathing well. HOWEVER - this problem can be solved - epidurals can work, and so can a mix of opiates plus strong, IV non-steroidals. When my mother had surgery for her lung cancer (removing part of your lung is one of the most painful procedures) she had a PCA epidural plus non-steroidals and was much more comfortable than after her hyst with the usual prn opiates.

--since anxiety can increase pain, you need to be open about that - treating your anxiety may help with pain control.

--someone needs to be your advocate in the hospital. Arrange for someone to be with you for the first 24 hours, when pain control is the big issue and you may be too "out of it" to advocate for yourself.

--for the first 24 hours, ask that whatever pain control you have NOT be PRN. The majority of your pain medication should be delivered on a regular schedule, with the option of additional (usually small) medication for breakthrough pain.

Dorrie
  #10  
Unread 03-25-2004, 07:27 AM
I need some hugs and support...

Rita, I hope that this time things go more smoothly and you do not have issues postop. I know how scary it is, when I had my hyst last summer and they brought me to my room, I remember coming to as the nurses were getting ready to get me to move onto the bed, how I did that I still don't know and could not understand why I was in tears and in so much pain. Come to find out after my dbf noticed my morphine pump drip was not working and nobody had noticed. The pain was unbearable......

I think everyone has given you good advice and I learned to in the hospital to take the meds whether they be the pump or pills like others suggested to stay on top of the pain and not wait until you are really bad off.

I hope so much for you that the Patient Advocate can help make this a better experience for you, that all goes well and soon it will all be over for you and you can be on the road to recovery!

Please let us know how things go!!!!!

prayers and support for you and your DH!!!!

jody
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