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Visit to Mayo, PSN, and endometriosis Visit to Mayo, PSN, and endometriosis

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  #1  
Unread 10-11-2003, 12:13 PM
Visit to Mayo, PSN, and endometriosis

Hello fellow "road" travellers...

I just got back from my visit to see the Gyn-Onc surgeon at Mayo yesterday. This visit was a consultation on a possible Presacral Neurectomy (PSN) for my continuing pelvic pain problem.

I met with the Gyn-Onc surgeon first. He was very nice and very attentive. I had my "pelvic pain history" listing everything chronologically and in a bullet format with just the very key items. It was very helpful. As the surgeon would read about something I had done on "my list" I was then able to refer him to the detailed medical report. (I just did the last 5 years though - not all 13).

As a result of our discussion, the surgeon wanted me to meet with another Gyn to get his take on my situation. This was not scheduled. I met with this doctor for 1 hr 45min ! He was very thorough and the exam was tough (painful). Before he did the exam he was leaning towards musculoskeletal or nerve problems... but something during the physical exam caused him to think a return of endo or adhesions were the main problem with all the muscle stuff I am having being secondary to that.

I only "lost it" a few times and cried... most of the time I kept it together and I think some of that was due to my upfront organizing giving me confidence. The worst was when I :cry: during and after the physical exam. I just lost is completely when he was done because the pain was so bad and I had a momentary weakness in my resolve to stay positive.... so I did allow myself some "wallowing" on the exam table as the doctor went out to discuss findings with the surgeon.

So the end result is another lap with the Gyn-Onc. He will search for endo and other problems, especially in the areas that were so painful during the exam. If he finds endo the Left ovary may come out.... if he doesn't find endo he will leave it. He will also likely do the PSN. I feel encouraged since this surgeon is supposedly world renowned for his skill with the laparascope and in treating endo and cancer.

My doctor in NM wants to observe the surgery and since he and the Mayo doctor are friends from a Gyn Laparascopic society, the Mayo doctor wholeheartedly agreed and invited him to spend the day with him and observe several surgeries... so we will have to see if that works out. I am hoping so because it would be very reassuring to have my long time Gyn in the OR and see things firsthand.

I hope this helps any other endo "road" travellers. I will keep everyone posted on when I have the surgery etc.

Many to everyone.

Sarah
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  #2  
Unread 10-11-2003, 12:32 PM
Forgot one endo thing

So I just wanted to add something related to the endo... and possible return or continuation (whatever).

All the endo that surgeons have ever found in the past has been in the cul de sac, ligaments, and pelvic walls. I had adenomyosis but endo never showed up on my ovaries, tubes, or uterus that anyone could tell...

I just mention this because the surgeon mentioned that when someone has had endo limited to the reproductive organs, the Hyst is much more likly to solve the problem. If you had it in the cul de sac or away from the repro organs, the hyst will not be as helpful especially if you leave your ovaries....

The definate areas of severe pain I have apparently are all on the pelvic wall area... which is right where the endo has been found in the past.

I needed my TAH for the adenomyosis so I don't regret that at all... and I am wondering if they will really find endo or not on the "return visit" coming up

That's all...

Sarah
  #3  
Unread 10-12-2003, 06:28 AM
Visit to Mayo, PSN, and endometriosis

Hi Sarah!

I am so sorry to hear of your ongoing pain but am so happy that you have found such good Dr's!! That can be so reassuring!

Have you ever had adhesions? I also had the same pelvic pain and assumed it was the return of the endo only to find out it was severe adhesions. When I had my last surgery for all of my repairs and the hernia repair, the GS found that my omentum was adhered to my inside of my belly button. It just never ceases to amaze me how it just all keeps sticking back only months after the removal of them.

Please keep us updated and let us know when you have a date! Until then, I hope your pain is not at an all time high right now!!

HUGS sweetie!!
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  #4  
Unread 10-12-2003, 07:13 AM
Visit to Mayo, PSN, and endometriosis

Dear Pam...

Thanks for you kind reply. I too am wondering if they really will find endo or if things have just stuck together funny after the hyst.

There is one thing I have had repeatedly which makes me wonder if my left ovary is stuck to my vaginal cuff... anytime I have a pelvic exam and the doctor pushes to palpate the area on the right where the right ovary would be (but is no longer), I get terrible pain way over on my left side.... which apparently is the area of my left ovary.

That happened with the Mayo exam too... I yelped out in pain when he did this on the right and he tried again and said is this the pain on the right... and I had to say "No, but whatever you are doing is causing terrible pain over here on the left!"

I have not had a terrible time with adhesions in the past (no where near what you have had). I have just had a few and releasing them never changed my pain problem.

Oh, I do so hope we all find an answer.

Sarah
  #5  
Unread 10-13-2003, 08:00 AM
Visit to Mayo, PSN, and endometriosis

Sarah,
That sounds like you had a very promising doc visit. I am going to be ing very hard that this is the doc who is THE one. Keep us posted as you find out more info.
  #6  
Unread 10-14-2003, 11:34 AM
chronic pain here

Hi Sarah,
Read your message w/great interest. I am one year post op and having severe pain again. My new gyn thought it was adhesions/scarring and/or returning endo. I had a lupron shot last week and it has not helped at all...so my bets are on the adhesions and scarring. However, she says she will not even consider going back in to release the adhesions...wants to refer me to a pain clinic instead. Did the doc think going in again would help?
Thanks,
Debbie
  #7  
Unread 10-14-2003, 12:07 PM
Visit to Mayo, PSN, and endometriosis

Hi Debbie,

Oh, how I can relate...

First, it is my impression that it can take 4-6 weeks before the Lupron might affect any endo pain... if that is your problem... so there may still be some hope of that working.

I must say that I have been approaching another surgery very cautiously. I have been doing months and months of less invasive things (massage therapy, physical therapy, trigger point injections, continuous BCPs, Elavil, nerve blocks) to try to relieve this... nothing has made much of a difference except the Presacral nerve block which helped for a couple hours... oh and the continous BCPs have helped but there the difference is more subtle and I only notice that they are helping some when I miss a pill and am in extreme pain about 36 hours later as a result.

The Pain mgt doctor sent me back to the Gyn after the presacral nerve blocks... and suggested to the Gyn that I needed a PSN... so that is how I got to the Mayo clinic... because my doctor can only do the PSN with an open laparatomy incision and he was worried he would end up causing more harm trying to help me find relief. The Mayo doctor can do it with a laparscopy.

I don't know what they will find. I feel pretty confident that if I am going to have another surgery, that this is the right surgeon. I don't expect complete relief but hopefully I will feel better.



Sarah
  #8  
Unread 10-14-2003, 12:35 PM
Visit to Mayo, PSN, and endometriosis

Hey Sarah, sounds like a productive appointment for sure, congratulations!!

Has anyone suggested awake pain mapping? It is supposed to be invaluable in finding buried endo sites that are causing pain that no one can see with the naked eye....this was suggested to me a few times but there was some doubt about my ability to do it what with my local anesthetic allergy.

Best of luck with the scope and PSN.......'s!!
  #9  
Unread 10-14-2003, 12:45 PM
Visit to Mayo, PSN, and endometriosis

Hi Gidge,

Many thanks for the input.

I had a conscious pain mapping done in 1999. It did find two big problems but missed the endometriosis I had at the time... maybe because of the location (hidden down in the cul de sac and on the posterior pelvic wall).... maybe since the doctor found two big things causing me pain he didn't look for anything else. (I had surgery 6 weeks after the pain mapping and the doctor found multiple spots of endo hiding in those places... as well as the other things the pain mapping found.)

I do think the pain mappings are invaluable. It helped me tremendously. Fortunately, it seems this time that every doctor I have seen agrees on the problem areas... and hopefully it is just a matter of looking at them closely with a lap to see what is going on. (the pain has gotten so bad it is easily reproducible... I guess that is good and bad )

I am so glad to have all this support and input

Sarah
  #10  
Unread 10-14-2003, 12:50 PM
Visit to Mayo, PSN, and endometriosis

I'll never forget after my last surgery my gyn assisted the gen surg and when I talked to her afterwards and asked if she found any endo she said "no" and I said nothing around the bowel or in the adhesions? and she said "well nothing obvious"....HELLO? Since when is endo obvious.....especially in those areas...after everything I had been thru, for her not to have a real good look while in there was sinful I thought.....I would do the pain mapping if my pain got out of control again if they could figure out how to keep me awake and not in awful pain!

hang in there, now you have TWO doc's working to fix ya, it's just a matter of time!
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