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Debulking recovery extreme pain

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hello Dear Ladies

I have just started to post a little since my surgery on July 24. It is now 2 weeks and the pain is still so bad. At times it becomes unbearable.

I was wondering how long your recovery was and how long the extreme pain lasted. How did you manage the pain and all that goes along with it?
I am eating like a bird and continue to lose weight fast.

I am no newbie to surgery and pain, but this by far has been the most difficult and the most painful ever.

My onc is setting up a ct scan to be sure nothing else is going on. I had no idea that this would be so difficult.

I am still on a variety of strong narcotics, at least every 4 hours. Does this sound like your recovery?

Any advice would be so appreciated.

I hurt so much, it just makes me feel like I cannot continue much longer. Although I know that I must and I will. It's just so darn hard.

My onc is also still undecided about adjuvent chemo. One ovary was serous and the other was serous and endometrioid mixed. The ovary that was serous totally engulfed the falopian tube,18 cm and the the washings were positive for cells. But, the good in all this was that both were (LMP) low malignant potential.

I am hopeful that you will have some similar situations to share, so that I know I am within normal healing range for this awful surgery.

Thank you for your continued support and wise comforting words.

Hugs to all
Lisha

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

I would have had pain for months after surgery, but my doctor had me on multiple pain meds. I was taking oxicodone and Tylenol III and also had a Fentyal patch for 6 months following my surgery. If I tried to back off of any of it, the pain broke through. Some meds didn't touch it, like Vicodan. It sounds as if your doctor is investigating the source of your pain. Maybe a change of meds would help, as well as using multiple meds. There are also pain management programs, through pallative care, that your doctor may be able to refer you to. Hope this resolves soon.

mopar
Posts: 1954
Joined: Apr 2003

What I mean is, all that I'm reading makes me feel very blessed for not having had such horrible pain. I'm sorry sorry you both have such discomfort. But it just doesn't sound right to me. Aside from the fact that I have a high tolerance to pain, it was a little difficult moving around the first few days, mostly because of the staples. But I was completely amazed at how I felt. I wonder if it's possible that my doctor's method of this procedure is a little different than others. To this day, I have a slight 'deadning' of sensation around the lower stomach and upper thighs. This could be from nerve damage due to all the 'moving around' that they did, but I also wonder if I had some sort of lidocane or something injected to ease the pain after surgery and that's an after-affect. I was truly afraid of what to expect after having seen my sister go through a hysterectomy - she was in such horrible pain, but that was in 1979. So I realized I shouldn't compare my 2000 and 2006 surgeries to that.

I don't know, maybe I just don't remember the details (I'll look in my journal sometime). Having said all of that, you had some very major work done, and we all heal differently. I'm sorry you're so uncomfortable. Sending prayers that you'll feel better soon, Lisha.

(((HUGS)))
Monika

2timothy1 7's picture
2timothy1 7
Posts: 337
Joined: Jan 2012

Sorry you are still in so much pain! Are you running a fever? I ran a slight fever. Didn't even realize I had one. Can't remember exActly what it was but I know now why. I had an area under my incision That became an abscess. For the longest time I thought I was supposed to be that sore due to the surgery. After pressing on that area I realized there was a hard knot that was forming . It was bout the size of an egg. It had become infected. Had to be drained/packed. Was put on antibiotics and began feeling much better. Probably was a reaction to suture material-still not sure. I had 3 more of these develope over the next few months. Dr said she had never seen someone have so many.

Anyway hope you feel better soon. Call dr if u don't!
Shawnna

jsayler's picture
jsayler
Posts: 4
Joined: Apr 2011

After any surgery there is going to be a lot of pain. I did take some pain killers but I tried very hard not to. I also discovered early on that my bottle of Excedrin worked best. Using a heating pad was also quite helpful most of the time. I went quickly on to chemo thereapy after surgery so I found it rather hard to determine what pain was caused by what but I leaned on the elastic "girdle" thing that they gave me to where. It kept me tight in place and helped to ensure the least scarring and bulging after surgery. I have a nice, flat stomach now due to it and ensuring that no matter how crummy I felt, I always excercised. Some days (of course) it was impossible but I always made up for it. In the beginning it was simply walking for at least 2 miles however slow and however cold (we lived in Minnesota at the time and it was winter).

Walking also helped with the neuropathy that came with the chemo. The Taxol (NEVER EVER again) was atrociously affecting me without any noted benefit. The best treatment was Carboplatin or Cisplatin. I started on Carboplatin and when I had a bad reaction to that, I moved up to the stronger form, Cisplatin. The pain was much less. I also did Gemzar which actually burnt out my veins and I don't think I would do that drug again without trying alternatives first and after a great deal of research.

The pain will ease, I promise. Just like any other surgery. Excercise your butt off (or as much as you can)! It's all personal and it's all up to you.

lovesanimals's picture
lovesanimals
Posts: 1283
Joined: Sep 2011

I am so sorry that you've been in such terrible post-surgery pain. Perhaps your doctor can prescribe you different pain pills to see if they work better for you.

I myself was very lucky. After I was released from the hospital, I used my prescription narcotics for just a few days and then switched to over-the-counter pain meds and used those only sporatically, as needed. I don't know if this makes a difference but my surgeon "glued" my incision back together, instead of using staples. Maybe that meant less pain for me. In any case, two weeks is not very long after major surgery, as you already know, and it takes a lot of time for the body to heal and start feeling better. I hope your doctor can help you find some relief from the pain.

Hugs and prayers,
Kelly

Felicia_205's picture
Felicia_205
Posts: 79
Joined: Jun 2012

Usually the first night of the surgery is agonizing and the first 2 days are pretty horrible too but usually by the time I get my staples out I dont even really need my pain meds anymore. Sounds like something else could be wrong. I had an infected abcsess after my last surgery and I had pain like the pain you are describing. Abdominal surgery is so painful though and some people recover faster than others and some people have much bigger incisions. Sometimes I had 50ish staples and that was soooooo much worse then when I would only have like 30. Oh and motrin helps soooo much. It usually takes about a month for me to get my appetite back. I hope you can find some relief I know how horrible this pain can be.

kayandok
Posts: 1223
Joined: Jun 2008

I'm glad to hear that your doctor is doing a CT to check for anything. I assume that he has already done blood work and there is no infection. I took percoset for a couple weeks afterward and slowly weaned off of them. But, about a month later, I did begin to feel some pain, and took me awhile to realize it was a bladder infection. I was so numb inside that I didn't know where the pain was coming from. After the anti-b's kicked in, I was a new woman.
I hope you feel better soon,
kathleen

wooh_girl
Posts: 15
Joined: May 2012

I guess you can count me as one of the unlucky pain people. My recovery was pretty miserable. I had a Fentanyl epidural in the hospital, then I was taking half a Percocet every 2 hours for the first week or so, along with Motrin. The pain was much worse than I expected, but the pain meds made me incredibly nauseated and I started to feel like I was going crazy. I lost 15 lbs in the first 10 days and alternated between sleeping and being restless. By the end of the 3rd week though, I could manage with just the Motrin and Tylenol. I do remember that I was completely off of the narcotics by my one month post op visit. I had a really hard time doing basic things for a while, like climbing into the shower or putting the foot of the recliner down. I actually wore maternity pants for 10 months after my surgery because I was so sore and had ascites.

I had a 10 inch vertical midline incision, which was closed with dissolvable sutures and surgical glue. After it scabbed over, there was a small area that did open up and drain, but it was not a big deal. We just put a dry dressing over it and let it heal on its own over the next week or two. I also lost sensation to the area surrounding my incision. It made me so angry, because I could feel deep, visceral pain, but couldn't feel touch on my abdomen from hip to hip, and I couldn't feel temperature (Know when they tell you that it's going to be cold right before they put the vaginal ultrasound in? It wasn't.) Every single thing I did seemed to make me uncomfortable and I was so frustrated.

The good news is, somewhere around week 10, I started feeling much, much better. My surgery was at the end of June, and by early September, I was back to working night shift as a floor nurse with no restrictions. I walked for at least a half hour every day starting the day after my surgery, and at around 3 or 4 weeks, started doing some light yoga stretches. Believe it or not, I was actually able to have sex after 6 weeks without pain (hope that's not TMI haha). The recovery was definitely two steps forward, one step back. Right after surgery, I remember thinking that I would rather be dead than go through a completion hysterectomy (which, luckily, turned out not to be necessary)...now my brain seems to have made the actual extent of the pain kind of foggy, and I know I could make it through another surgery again if I had to. It really will get better, and I hope your scan comes back clean and that you start to find relief soon.

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