new here - already on pain meds and really concerned about post op pain

Hello,

I'm new here but have already found a lot of information and comfort in reading the stories and messages. I'm really hoping some of you have been in a similar place and can tell me how things went for you.

I've suffered with stage 4 endometriosis for seven years and, as much as I don't want this surgery, realize a TAH/RSO (had a LSO in 95) with six months without estrogen after surgery is my best chance at reclaiming some semblance of my former self. (They'll also remove my appendix and resect other disease, which may involve both a small and large bowel resection and diaphragm resection; I'll have a vertical incision.) I'm planning on surgery within the next few weeks.

The problem is that I'm terrified about the post-op pain. I'm currently on a combined dose of oxycontin/oxycodone of about 200 mg a day for my endometriosis pain. I've had 7 surgeries in the past and know from the last one (when on half that amount of pain medication going into surgery) that controlling my pain post-surgery was a nightmare. I mentioned this to my first surgeon and his response so frightened me that my reproductive endocrinologist is setting up a new surgical consult for me this week. (The one good thing he did say is that I could have an epidural in addition to other pain meds.) I'm having my surgery at a nationally respected institution with a full pain services department (up to each surgeon as to whether to use). I would greatly appreciate hearing from any of you who went into surgery already on a high dose of pain medications - how did it go? what meds/combination of approaches were used to manage your pain? what suggestions do you have? Even if you weren't on a high dose of pain meds before surgery, what worked best for pain management for you? I know I need this surgery, but I'm terrified to go forward right now. I look forward to any information you can provide me.

Thank you. Anne in MN

Anne,

Hi, I know just how your feeling! I have a whole thread on "Post Op Pain Poll" soliciting almost the same type of info. My symptoms and pain pre-op were nothing like yours. I really didn't have pain. My problems were silent and deadly, but I am a pansy when it comes to pain. I have abused pain medication in the past and have a high tolerance to everything, so I was frightened that nothing would work. The Dr. assured me that I wouldn't be needing medication and I told him to be on the ready with anything I needed.

Had TAH on 3/27. Valium on the way into surgery. General anesthesia for the surgery. And the Morphine Pump. Didn't do a thing. I woke up and it felt like my stomach was tearing apart and I kept crying that I hurt, and the nurses were hollering to push the pump and I couldn't find it cuz I was in and out of consciousness. I remember the tearing pain and crying, and I woke up in ICU the next day. My blood pressure was through the roof, cuz my pain wasn't being managed. The Nurses were useless. I called my husband crying and he called the Doctor who was there within 5 minutes of my call (he came directly from his office) and ordered the nurses to give me demerol, valium, and I believe toradol, among other things. I got this every 3 hours for the second day and I slept and really didn't feel any pain.

The third day I was up, alert and out of pain. There's a whole story I'm planning to post about the hospital gig but that's another story.

Today, I'm 10 days post op. I'm pain free (uncomfortable, but not pain). I was dancing with my kids in the house as they vacuumed and cleaned for me.

I feel great.

The moral is that you'll be okay, I believe. You just have to take charge of yourself and demand that you be given whatever it takes to relieve any pain.

Sorry to ramble. After the dancing, I took some Darvocet (he sent me home with a prescription for 80). I didn't need it until I danced, but it was worth it.

Good luck. Read my post op pain poll and check out from the drop down search button.

Luv,

SueK

Hi Anne!

I'm sorry you are dealing with so much right now. I know that the usual "everything will be fine" speech isn't really appropriate and your concerns are very real.

We have many sisters who have had extensive experience with endo pain and have had a wide range of outcomes. I've asked that someone respond to you who can speak from experience...I know someone will be along soon to help. Until then, you might try running a search on "endo pain" on our search engine...or perhaps posting this question on the Post Op board, too.

I hope that you will get the relief you are seeking from your symptoms. I can tell you that pain management is a huge concern these days under ordinary circumstances...and the fact that your facility will be well prepared to deal with whatever happens should be very reassuring!

Sending best wishes for a great outcome!

Karen

Thank you Sue and Karen for replying to my post. I'm feeling so lonely and unsure about everything. Sue, your experience is the one I fear . . . with my last surgery, my dr said we'd see how I did with pain and "cross that bridge when we came to it" - when my first surgeon for the consult for my hyst used the same words, I almost leaped from my chair and ran screaming from his office. I so believe in being prepared ahead of time. But, your post brought to mind one very important thing to remember - have an advocate there who is ready to push the morphine pump (LOL) and argue for better pain meds for you! I'm so sorry you went through such an ordeal; in this day and age, it seems so unnecessary for someone to have to suffer like that. But, I was reassured to hear you are up and moving around already. Best wishes as you continue your recovery!

Karen, thanks for the tip on running a search on endo. I'll do that. I also hang out at a very good endometriosis support page, but I'm now needing support as I go into this hyst . . . in addition to my pain concerns, I have to be estrogen free for six months following surgery. YIKES! I was so relieved to see the section of the board for those who can't handle HRT.

Thanks again. . . . and I really look forward to hearing from others.

With hugs and gratitude,
Anne in MN

There's different families of drugs that can control your pain, and for that matter there is no "upper limit" for narcotics. There will be a team of doctors who will monitor you and control the amount of narcotics that you'll be given. If they give you an epidural on top of that, then you should be good to go.

I've faced this twice before and came thru with no problems. Just make sure everyone involved KNOWS you're a chronic pain patient with special needs. (I even had them put an extra note on my arm band for one particularly unpleasant surgery).