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How do endo specialist treat endo in tricky places? How do endo specialist treat endo in tricky places?

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Unread 05-26-2010, 02:47 PM
How do endo specialist treat endo in tricky places?

During my second opinion with a fertility specialist, he explained to me that endo could be hidden in places that no surgeon would be able to remove it. I know I have endo on my rt ureter that my ob could not remove during my total hyst. (including ovaries.) Is this true? Are there places endo can hide that even a specialist could not remove?

As I mentioned in an earlier post my ob is not supportive of me getting a second opinion, and I did, but even the second opinion mentioned that basically if endo is not shrunk by norethin then it must be something else causing me pain. I really believe it is endo. How do specialists treat endo in areas that are very difficult to operate, what if endo is hiding behind an area even not visible with a scope? What then? I researched going out of state for endo specialists but how can I be sure they will help? I saw the specialists on the the site but mentioned 1 of them to my ob and she said absolutely not he makes promises that aren't true. That is just scary. Going out of state, paying a tremendous amount of money and time and have it not work. How do I research success rates? What do they do different?
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Unread 05-26-2010, 07:39 PM
Re: How do endo specialist treat endo in tricky places?

You are asking a lot of good questions!

I spent a couple years researching endometriosis specialist before I traveled to one. I had considered several before making my final decision. I checked out their websites, articles they had written, conferences they had attended, comments made by prior patients, matched their opinions with other research, etc. I read, and read, and read! Listening to a live interview helped me choose the specialist I did.

One thing you can do is search and see which ones will allow you to send your medical records and information in advance. Some will even do a phone appointment before you travel. This can help you determine which one might be right for you before you are out a lot of money.

Before traveling, you can also check to see if any of the major hospitals in your surrounding area have endometriosis centers. You could also check with gynecological oncologists.

As far as what all they can do, an endometriosis specialist can be pretty amazing! But they do not all have the same skill level and none of them are God! My own specialist was prepared to take care of some adhesions involving my ureters so I am guessing he would have been able to excise any endometriosis found there. I specifically sought the services of an endo specialist to remove the endometriosis on my bowel walls and because I had suspected endometriosis on my bladder.

Generally speaking, a specialist does not use a cauterizing method to remove the endometriosis. Instead, they have perfected a type of excision method that allows them to actually "cut" out the endo. Cutting out the endo removes it entirely and essential "cures" that spot. Some also strip the peritoneum to remove any endometriosis that could be lurking there.

See if any of these articles/videos are helpful:

I know this can be tough! And especially so if your own doctor is unsupportive with regard to seeking the services of some more skilled surgeon than she.

Unfortunately, using progestin doesn't eliminate all endometriosis pain for everyone. If it did, many of us would be on some type of progestin therapy and not having surgery for endometriosis! Just because you continue to have symptoms on Norethin does not mean you do not have endometriosis. It also doesn't mean you do have endometriosis.

I would encourage you to keep a very detailed symptom diary and keep searching for a doctor who will help you. Before you consent to a surgery by anyone, be sure s/he would be able to excise any endometriosis that would be found.

My goes out to you and I wish I could tell you exactly what to do to make everything right for you! If I can help in any way, just holler!

Unread 05-27-2010, 07:33 AM
Re: How do endo specialist treat endo in tricky places?

Thank you Weiser. I'll check out the links for sure. Can I ask you what specialist you went to? And are you feeling much better now?

Your reply helps so much. Just knowing someone gets it and cares is huge to me. Hard to communicate with family members. some say just do this or that....not realizing it's not as simple as just do this or that....there are all of the what ifs, expense and research that needs to go into this.

Again I thank you so very much.
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Unread 05-27-2010, 11:41 AM
Re: How do endo specialist treat endo in tricky places?

I am glad to help! I do not have anyone near me who understands endometriosis either. I do have a SIL a couple hours away, but she had her complete hysterectomy and BSO several years before I did and never had another problem with endo, even using HRT. Not fair!

I am doing well since my surgery a couple years ago with my specialist and don't regret seeing him! I wish I had seen him much sooner! I have often wondered how different things would have been if I had seen him originally or at least as soon as I knew I had endometriosis! I have PMed you his name since the TOS ask that we not name physicians on the site.

Keep hanging in there and searching for answers! Know that if nothing else, we here on the site are in your corner!


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