Lap. pain mapping

My doctor just called me and told me that my pelvic venogram was normal. He said the next step is to do laparscopic pain mapping. Has anyone had this done before? Could you explain it to me a little more? He told me that I would be awake, but slightly medicated and they would map out my pain. From there he would determine if he will continue on to do a full lap. Which I assume that means, to remove anything that needs to be removed or to explore further. It's not scheduled until April, so I won't be in to discuss it with him until my pre-op. appt. I, of course, can't wait until then. That's why I was writing to see if anyone else has had this done. He mentioned that he may also do a uterine venogram because those are much more accurate than the pelvic venogram. By the way, in case anyone needs a little bit of a background on me, I was diagnosed with Endo. in July, 03, through lap., I had two adhesions removed and some endo. burned. My pain did not get better after surgery, less than week post, back to same pain as pre-op., now pain is worse.
Thanks in advance for any info. anyone can give me.

Hi Tina,

I never had pain mapping done, but there are ladies here who have. I'm providing a link to a thread where several members discuss this. You can find other threads on this topic by doing a search (use Search button at top of screen) and entering the key words "pain mapping."

Thread on Pain Mapping

I'm also providing a link to some basic information about pain mapping that I found by doing a search on Google (using the key words "pain mapping.")

Pain Mapping Basics

Please keep us posted on how you are doing and what you decide about having the pain mapping done. I'm so sorry to hear that you are continuing to suffer. I truly hope you are able to find relief very soon.

Beth

Dear Tina,
I am sorry to hear you are continuing to suffer so much

I have a long history of endo, pelvic pain, adeno, pelvic congestion, adhesions... maybe now some IBS to go along with all those fun things.

I had a conscious pelvic pain mapping done back in 1999 after having had terrible right sided pain for 9 years which multiple surgeries to remove endo did not help much. It was a good procedure for me... they gave me meds so I don't really remember much except when they touched the really painful spots (and that is like a dream). It was VERY helpful in identifying where the pain was coming from... I had surgery 6 weeks later and that was the first time I had relief after surgery... it did take a few months to notice but it did come and I went from about an 8 on a daily basis to about a 3.

In my case, my right ovary was horribly painful and recreated the pain I felt every day. It is unclear why exactly. My ovary looked normal. THe pelvic pain specialist thought pelivc congestion because a venogram showed blood pooling in several areas of the ovarian vein... My Gyn thought this was a result of years of endo hormones messing up the tissue balance down there.

I do think that ultimately all the problems I have had are related to the endometriosis or the adenomyosis....

The pain mapping did miss the endo I had on my pelvic walls... the resolution of the camera they used was too poor to see the little implants. Maybe the technology has improved since then.

Let me know if you have any specific questions about what happened and I will try to answer them if I can.



Sarah

Beth & Sarah,

Thank you so much for the info. It was very helpful. Apparently now they have new blue lights that help detect the endo. better. I guess when they first started doing this, they would just remove the black endo. adhesions because that was what looked worse and was the most noticable, but infact the black is the one adhesions that aren't painful. I guess with this new blue light they can detect the deep infilitrating endo.
The questions I do have are that I am really nervous about the pain. Now I did read somewhere that they give you a very small sedation to put you out at first until they get the instruments inserted then wake you up for the rest. Is that true, or at least did they do that with you? The pain part has me really nervous because I just had a pelvic venogram done last month and that hurt really bad. They gave me pain meds. and this consious sedation med., but I remember the whole thing, plus like I said I still thought it was painful even with whatever they gave me. Do you remember how you were positioned on the operating table? I also read that the table is tilted so that your head is down and your feet up so that your bowels and intestines are above your belly button so that they can see your pelvis better. Do you know if they remove anything then(for instance ovaries or something like that) or do they wait and do that at another time? It just seems like the state that your in, you can't really be able to make a decision like that. I'm 32 yrs. old and I have two boys(5yrs. & 2yrs.), I don't know if I want anymore children, but I don't want the option taken away from me. In the back of my mind I would really like to try for a girl. I know that there are no guarantees, but I still can hope. I have four older brothers, the only girl and between my husband and I, his brother and sister, we have five boys in the family and no girls. It would really be nice to have a girl in the family.
Anyways, I really do appreciate the information. I am really nervous about all of this. I really trust my doctor and I am looking forward to getting to the bottom of my problems and finding a solution. It's just that the past two years have been hard. Before then, I never had any broken bones, no surgeries, no hopitalations(other than having my babies),and not on so many meds. In two years I have had two surgeries, so many different proceedures, and taking meds. everyday. The whole idea of being opened up, how many more times?, is very unnerving(probably spelled wrong). Thanks again for listening to me and telling me your experiences. Even though I'm nervous, please don't "sugar-coat" anything, I would rather know in advance the truth, than be suprised later. Thank you!

Dear Tina,

It is normal to be nervous about surgery. In fact, I have had about 10 all together on my pelvis and I get more nervous with each one. I have one scheduled for Feb 4th and I just don't really want to do it.

I think each doctor probably has his/her own methods for the pain mapping... but the doctor I saw gave me Versed so while I was able to talk and coverse with him I only remember the two times when it hurt severely and then those are like a dream. This doctor actually was pretty heavy with the drugs and I barely remember getting back to my hotel room after he was done.

In my case, I had the pain mapping done in an office operating suite 6 weeks before I had surgery. I don't remember how the table was tilted but I think what you describe is how they do all the pelvic laps..

That is good to hear about a new way to detect endo. During the pain mapping I had, the doctor just couldn't see it because the camera resolution was not good enough. During the surgery they could see it all over the pelvic walls. I wonder if the Mayo doctor will use the "blue light" when I have my next surgery.

Keep us posted.



Sarah