surgery advice needed

Hello all,

It's been awhile since I posted, but I have literally gone to heck and back to find a surgeon who would take my case (I was repeatedly denied despite the fact that they would have been paid regardless -- something I'm not even going to begin to understand). I was seeing the last possible qualified surgeon in town, and he decided to take my case. This is a miracle in itself, but then I was told I would have "almost zero chance" of getting scheduled in the time frame I needed. What a rollercoaster it has been, but I found out on Wednesday that another miracle came through and a cancellation got me a spot for December 23rd. I was feeling very hopeless before that, and the options I had been given were both not anything that really appealed to me -- 12 consecutive months of Lupron or a morphine/methadone cocktail. I am thankful for the surgery, but I have to be realistic at the same time. The surgery might not give me the relief I am desperately searching for, but the peace of mind alone make it worth it, especially since I had to convey to them that I won't have a chance to have another surgery for about 2 - 3 years.

At any rate, I've had laparoscopic surgery for my endo before, but I'm having a couple of other things done, as well. I would be very grateful if someone could give me info (how long will I be in the OR? how long will it take me to recover? will it be more painful than a regular lap w/ laser and excision? what exactly is a d&c?). I'm having a laparoscopy, a hysteroscopy, a presacral neurectomy, a d&c, and any laser/excision/biopsies necessary.

Hi Christy,

I'm glad to see your update and that you have found a doctor you are comfortable with.

A d&c involves "dilating" your cervix and scraping the lining of your uterus (curettage). I had this done in conjunction with a diagnostic lap many years ago ... no big deal at all for me.

With the combination of things that you are having done, I really don't know how long you'll be in surgery. I would imagine at least an hour ... but it could be several hours if the surgeon is committed to excising all the endo he/she can find. This is a great question for you to ask your doc - the likely time in the OR.

I'm not sure about recovery time either, again because of all the things you are having done. I would imagine at least 1 week ... but it could be longer. Again - great question for your doc.

I'm praying that this surgery will bring you some much needed relief. Please keep us posted on how you are doing as you approach Dec. 23rd and be sure to let us know how things go afterwards. Sending extra hugs and prayers your way.



Beth

Christy, you've already been through so much!

I've had a couple of extensive laps, and after the one for the ectopic pregnancy, did not feel ready to jump right back into work, etc. until two or more weeks afterward; part of my slowness in recovery had to do with the fact that I was incredibly anemic, but the other part just had to do with the fact that it was extensive surgery.

I think the reason a lot of doctors don't take on cases like yours is that 1) they don't really have the laparoscopic experience it takes to really tackle extensive endo; and 2) they know that it's not an answer for everyone, and all they want is "good" outcomes . Sad, but true. As you already know, there's no guarantee, but hopefully the PSN will help somewhat.

Have you had a pain mapping? You've indicated that you have known adeno, right? The reason I ask is that the PSN doesn't always work on adeno, and the pain mapping can let them know exactly which spots are causing your pain, enabling the doctor to "target" those areas in surgery.

If you do a search on "SBlumen" as the username, she's gone through the whole pain mapping route, and a number of her posts may be helpful to you as you prepare for this surgery to come.

Just out of curiosity: why would it be two to three years before you're able to do surgery again? You're in school, right...or is it something to do with insurance? It seems a shame that your "window" is so small that you'd have to live with this pain for another two to three years!

Big s and I sure hope you find relief this way!

Audrey

Thank you both for your responses. I'm learning more every day about the d&c and the PSN. I've had my eye on a PSN for many months now, so I had even fewer surgeons in the area to choose from -- the ones that were qualified to do it. And yes, I know the PSN might not help, but like one of my OB-GYNs (I've got three currently) said, I have nothing left to lose.

Two of my OB-GYNs say they've never treated someone as young as I am with adeno, but I know better. I know people younger than me with adeno, but it's probably true that not many are out there. So to answer your question, I do not have confirmed adeno, and I don't even know if I do have adeno. If I had an enlarged uterus, I think my first surgeon would have said something about it. We still have the pictures. I'm just unlucky. :cry:

I haven't had the pain mapping done in the OR, but the surgeon who is taking my case is going to do a thorough exam during my pre-op appointment so he can get an idea where else to go to look for the endo.

There are layers of pain, and I hope that is understandable. When I'm actively bleeding (with clots and all that mess), I have mid-line pelvic pain and awful, awful lower back pain, just in this one spot. I wish I could pick it out and throw it away. I do have other ... hot spots, let's call it, where it could be endo, it could be any number of things. I also have chronic pelvic pain, which is completely different than my cramps. I hope that makes sense. I just have so many layers of pain, but most doctors won't agree that I have the ability to tell the difference. I also have IBS and IC, those are completely different pains, but even I will agree that it might have something to do with the chronic pain. Hey, even my fibro could do that. Right now we try to keep the chronic pain under control with Elavil. I just bumped up to 150mg because my chronic pain isn't under control anymore. I was on Neurontin, but it was a nightmare. I'm still in the weaning process, and I hope to goodness I can get back what I lost because of it.

As for the time frame, there's no way I can have a surgery again during the semester like I did earlier this year, so I knew I had to have surgery either during Christmas break or possibly spring break. I graduate in May, and supposedly I lose the insurance then, although it's possible that it wouldn't kick me out until September. I couldn't wait until summer, though. I'm in so much pain. I'm taking my pain killers every day now, and I despise them, so that says something about how I feel. Then I have this huge pressure to get a job with good benefits. Forget salary, just make sure you have insurance. That's what everyone is pounding into me, like I didn't know it already. So then I have to wait for it to kick in, then I'm getting married (October 16, 2004), and then everyone says try having children sooner rather than later. It would just keep getting pushed back farther and farther, so that's the explanation for the time frame.

	Quote:
Originally posted by christywisty Thank you both for your responses. I'm learning more every day about the d&c and the PSN. I've had my eye on a PSN for many months now, so I had even fewer surgeons in the area to choose from -- the ones that were qualified to do it. And yes, I know the PSN might not help, but like one of my OB-GYNs (I've got three currently) said, I have nothing left to lose. Two of my OB-GYNs say they've never treated someone as young as I am with adeno, but I know better. I know people younger than me with adeno, but it's probably true that not many are out there. So to answer your question, I do not have confirmed adeno, and I don't even know if I do have adeno. If I had an enlarged uterus, I think my first surgeon would have said something about it. We still have the pictures. I'm just unlucky. :cry: I haven't had the pain mapping done in the OR, but the surgeon who is taking my case is going to do a thorough exam during my pre-op appointment so he can get an idea where else to go to look for the endo. There are layers of pain, and I hope that is understandable. When I'm actively bleeding (with clots and all that mess), I have mid-line pelvic pain and awful, awful lower back pain, just in this one spot. I wish I could pick it out and throw it away. I do have other ... hot spots, let's call it, where it could be endo, it could be any number of things. I also have chronic pelvic pain, which is completely different than my cramps. I hope that makes sense. I just have so many layers of pain, but most doctors won't agree that I have the ability to tell the difference. I also have IBS and IC, those are completely different pains, but even I will agree that it might have something to do with the chronic pain. Hey, even my fibro could do that. Right now we try to keep the chronic pain under control with Elavil. I just bumped up to 150mg because my chronic pain isn't under control anymore. I was on Neurontin, but it was a nightmare. I'm still in the weaning process, and I hope to goodness I can get back what I lost because of it. As for the time frame, there's no way I can have a surgery again during the semester like I did earlier this year, so I knew I had to have surgery either during Christmas break or possibly spring break. I graduate in May, and supposedly I lose the insurance then, although it's possible that it wouldn't kick me out until September. I couldn't wait until summer, though. I'm in so much pain. I'm taking my pain killers every day now, and I despise them, so that says something about how I feel. Then I have this huge pressure to get a job with good benefits. Forget salary, just make sure you have insurance. That's what everyone is pounding into me, like I didn't know it already. So then I have to wait for it to kick in, then I'm getting married (October 16, 2004), and then everyone says try having children sooner rather than later. It would just keep getting pushed back farther and farther, so that's the explanation for the time frame.

I have just read your letters and I do feel your pain. I pray that you will feel much better after you recieve your surgery. If your wanting to have children, I have been told that the pain will subside but only while your pregnant and I got symptoms of endo about 2 years after my last pregnancy and Im not planning to have any more so that is why I've planned to have surgery. I am 28 years old and I too feel the overwhelming effect this has taken on my life. I do not know much about the other symptoms you are feeling but now I am wondering if my physician is sure that I only have endo and not any thing else. I have an apt. next week and I will be sure to ask him to be sure. I hope all goes well for you keep us all updated. Heather

Heather,

I hope that you find relief, too. Thank you for your kind words. I hope that I can find relief in having children, but we're not going to try until early 2005. That's why I definitely wanted to have another try at surgery before then. I still have hope -- I do every time we try something different -- but at the same time, I'm afraid to hope too much. It hurts too much when you fall back down.

(((Christy))),
I'm so happy things worked out for you You've been thru soo very much...I wanted to provide some links to you that contain info on those procedures that may be of some help w/more details on them:

Laparascopy

Diagnostic Testing & Procedures

Good Luck with everything ((Christy)) My prayers will be with you that this surgery will finally bring you some much needed relief to all your pain!

Please keep us posted

The surgery is getting close. I'm on the last period I'll have before the surgery, and I don't look forward to turning around and bleeding after the surgery!

Nothing seems to be working today for the pain. It's so hard to sit and concentrate when it's like this.

I've decided that I will ask my new surgeon about the possibility of adeno. I've had three other OB-GYNs that wouldn't even consider it because of my age, but I know there are women younger than I am who have adeno.

It's not like knowing would change much of anything, because we still want to try and conceive, but it would be nice to have a reason for this pain (in addition to everything else I have -- I can see why some doctors would think I'm a hypochondriac with my list of diseases) and the bleeding.

I generally bleed for about 9-10 days. I cannot wear tampons and have not worn tampons for several years. I have to buy the overnight pads, and I still don't feel like it's enough. The only time I feel "clean" is in the shower. I dislike the feeling. I generally have bright or dark red blood and plenty of it. I always pass marble to quarter-sized clots, and I also seem to pass chunks of the lining. This looks completely different from the clots. Both are equally disturbing. Any time I stand up after sitting or lying down, it's a huge gush. I'm constantly running back and forth to the bathroom because I just hate the feeling of all that blood. I'm sure some can relate.

So who knows, I don't really know if I have adeno, but like I said, I'm going to talk to my new surgeon about it at my pre-op appointment on the 22nd.

I am very blessed to have a fiancé who is coming up to stay with me for about two weeks after the surgery. He currently lives and works out of state, so it will be nice to have him here.

Christy:

Your symptoms sound very much like adenomyosis. Have they ever done endometrial biopsies? That's not always accurate, but if it's severe (and diffused throughout) they may get some clues.

Getting pregnant with endo and/or adeno is tricky. I've know women (myself included) who found that low-dose prednisone helped cut down the inflammation enough for an embryo to implant. When you're ready to try to conceive, you'll need a good reproductive endocrinologist, and possibly a perinatologist, with your history.

I sure hope you're able to get some answers -- and some relief! I remember all too well that exquisite pain that periods brought; the bleeding didn't come until later after a tubal ligation. It's hard to function normally with that level of pain, I know. Here's hoping, then, that your planned surgery buys you some relief!



Audrey

Thank you.

This period has been even worse than usual, if that's possible. One of my OB-GYNs -- that's right, I have three right now! -- has me on Ortho Evra. We've tried doing continuous birth control in the past, but it made me bleed continuously. They don't know if it just shocked the body or what, so we're working up to it slowly in three month steps. I don't know if it'll help or not, but at this point, I'm willing to try just about anything. The only problem is that it gives me terrible morning noon and night sickness. I've lost between 25 and 30 pounds since August. It's not from the Ortho Evra alone because I wasn't on it then, but it's just hard to feel like doing much of anything, especially eating, when you're in so much pain.

I tried to do a little Christmas shopping today, but I was so exhausted, I could barely stand. I just wish I knew why we had to suffer like this. It's easier to cope most of the time, just because I've been in this pain for years, but lately I've been all over the place. I had a terrible reaction to Neurontin, and I'm still trying to recover what I lost. Going off some of my medications for the surgery just made things worse. Right now I'm just trying to get plenty of rest and avoid getting sick before the surgery.

A hot shower and sleep are about the only comforting things I have right now. I don't know what I'll do if the surgery doesn't work. I want children so much, but I've already been to points where I just want to say I can't do this anymore. I shouldn't *have* to do this anymore.