Fallopian tube endometriosis

[JulieAM]

Hello everyone, this is my first post on this board.  I had laparoscopic surgery to remove an ovarian cyst in November and just received a copy of the operative report.  It said I had stage IV endometriosis of bowel, appendix, anterior and posterior cul-de-sac, both tubes, pelvic ligaments, left ureter and ovary.  It also said "fallopian tubes were noted to be clubbed."  I have looked up "clubbing" of the fallopian tubes, but can only find references to PID, which I have never been diagnosed with.  (But this is also my first diagnosis of endometriosis.)  Has anyone heard of "clubbing" of tubes being caused by endometriosis?  I am very frustrated after reading this report because no further mention is made of my fallopian tubes, regarding whether they were able to be repaired or not, or even if the doctor tried to repair them.  I am trying to get the doctor to return phone calls about it, without any luck.  (I no longer live where I got the surgery and don't have insurance, or much money).  My surgery was done for pain and the possibility of ovarian cancer, however the doctors knew I wanted to get pregnant.  I am 38, and feeling very discouraged and overwhelmed to get this diagnosis at such at late stage.  Does anyone here have any advice or information for me?  Have you ever had trouble getting a doctor to return phone calls, what did you do? I hope to seek fertility treatment soon, but I'm worried I will need surgery again just so the doctor can determine the outcome of my last surgery.  Thanks very much for reading my post.

[tina1111]

Welcome aboard Julie, I'm so sorry for all you're going though. I did a quick search and found a site that is a little graphic, actual photos of repairs for clubbed tubes. http://www.urogyn.org/gallery_laparoscopy.html  I'm not a dr, but by the looks of the surgery, I would have though he'd have done it while in there. Let's hope anyway. Having to go through another procedure isn't too fun. As for the endometriosis, did he give you any kind of idea? The sites I quick scanned didn't rule out conception by natural means, but did lean toward IVF.

I would call and ask to talk to a nurse if Dr won't call back or PA or someone who can answer your questions. It is important to know. Or if they can send you the surgigal transcript. It will detail exactly what was done. Good luck!

[YvetteY]

Did you recently lose your medical insurance?  Perhaps you can continue your coverage through COBRA.  You have 90 days to get it from the time  you lose your coverage.  You just have to pay for an individual premium...maybe about 180 a month for single coverage.

Maybe the endometrious won't be an issue since it's on the outside of your tubes, unless of course the finger-like structures are obstructed.  

[shesherm]

welcome.  endometriosis is not a problem my friend was told she would never get PG because of it and she had twins :o)

[JulieAM]

Thanks for answering everyone.  I wasn't able to get the doctor to answer my question on the phone, I had to make an appt for next month "to discuss my options for fertility treatment."  Although it is really just a post-op followup since my first post-op appt was made with a doctor who had never seen me before, and wasn't able to tell me anything about my surgery. It is frustrating because I don't want any treatment or advice from these doctors, I just want to know what happened during my surgery and I have to pay them just to find out.  Tina, I will look at that website.  I have a copy of the operative report, is that different than the transcript?  Because the report is only 2 pages even though the surgery lasted almost 3 hours.  I think my major problem is that I was a "charity" patient, and apparently don't merit the same standard of care as someone with insurance.  My financial aid expired in January, I still qualify but I would have to reapply, and the application process took months last time.  (I lost my insurance a few years ago because I had to quit working due to this illness--all the doctors I saw at the time told me there was nothing physically wrong with me.  COBRA was about $350 and I could only afford it for a few months.)  That's why I hate to go back, the staff there are condescending and rude, but I guess I have no choice.  Anyway, sorry for all the griping, and thanks again for answering my post.

[NessH2O]

Wow, this is exactly the same situation I am in.  THe Doctor that diagnosed me with the clubed tube and endo just suggested going on Lupron which after looking it up sounds dreadful.  Since only one tube is clubed in my case she suggested just having it removed.  I am just trying to get a secound opinon at this point.  Have you heard about just getting one removed?  Not sure what this would accomplish?  Not to menton the crazy cost and all.
I do want to get pregnant but it seems like everything is working agianst me at this point.

[SHP]

I was told that I had a blocked tube.  There was some scar tissue in my abdomen on my bowels at the end of one of my blocked fallopian tube - oh it was clubed also.  The doctor was my regular Obgyn.  She tried to flush the tube open.  She said that she did not know what caused the scar tissue.  She said that it could have been anything - even undiagnosed PID.  When I went to my RE he said that I had endrometriosis.  Not bad  - but that was what the tissue was.  He has my records from my obgyn.  I am so confused.  Either way - there is tissue blocking the tube.  When I asked about opening the tube I was told that the surgury was expensive and not covered by insurance typically. I was also told that sometimes the villia in the tube can become damaged and it sometimes won't push the egg along like it should and that you can have an etopic.  So - I have resorted to trying for the good side (that ovary is small though).  We finally tried IVF.  I was 39 when I found all of this out.  I guess that I could have picked up PID 15 years ago and didn't know it.  Or it could just be endrometriosis like the RE said.    I guess that my point is - I am as confused as you.