Monthly Archives: May 2018

Appt With Endo Specialist

I traveled a week ago to see an endometriosis specialist in Washington. I got up at 4 am and arrived home at 10 pm that same day! Needless to say, it was a very long day, but it was productive and helpful, so that was good.

I met with the general surgeon first. She will be working with the endo surgeon should I have partial or full thickness endo on my bowel (if it’s superficial enough, they can just scrape the endo off). She will be on standby during the surgery. If I do have endo on my bowel and it’s significant, they will have to do a bowel resection. Bowel resections on the colon aren’t as big of a deal, but resections on the small intestine are riskier because the bowel is more narrow and there is more potential for a blockage post-op. Rarely, they have to divert the stool out into an ileostomy for a while before reconnecting the bowel. Based on my symptoms, the general surgeon guessed a 30% likelihood that I had endo on my bowel. She also thought it more likely that it would be on my small intestine rather than the large intestine. Food and I don’t agree most of the time these days, and I’m wondering if it does have to do with the fact that I do have endo on my bowel. I guess we’ll find out.

After that I drove to my next appt with the Endo surgeon. This lady was no-nonsense, and I got the idea that she’s tough as nails in the OR. I liked her though, and I very much got the sense that she was the right person to be seeing for the symptoms I had been having. She did an exam and a couple of ultrasounds. She believes I do have endo on my diaphragm, but her guess is that it’s not full thickness yet (meaning I’m not bleeding into my thoracic/lung cavity. I don’t have shortness of breath and I haven’t coughed up blood (signs that it could be in the thoracic cavity). {On a side note: Despite all that I have been through, I am immensely grateful that it most likely is NOT in my thoracic cavity!} We talked about what a resection of the diaphragm would look like. If the endo is partial thickness, they will cut it away and I’ll have a partial resection. If it’s full thickness, then I’ll have a complete resection and most likely wake up with a chest tube (think PAINFUL). Although she didn’t think it’s full thickness endo, she also told me that she had a patient previously who she also believed to only have superficial diaphragmatic endo and it turned out to be complete thickness.

We also discussed a hysterectomy. As she bluntly put it, based on my FSH and AMH results, my ovaries are “in the toilet.” I wish that weren’t true, but it is! On top of that, BOTH of the veins leading to my ovaries were enlarged, meaning that I have pelvic congestion syndrome. Terrific. She also believes that my uterus is a cause of significant pain for me, because when she pushed on it I about jumped off the table… all this is to say is that I’m going to have a hysterectomy. My right ovary is completely adhered to the pelvic wall by adhesions, so if she can get the left ovary free as well then she’ll try to leave it.

Which leads me to another concern — apparently during my very first surgery in 2011 for endo/bilateral ovarian endometriomas, the pathology report on one of the endometriomas came back saying they were “atypical.” I didn’t think it was a big deal (because the endometriomas were removed) and no one ever mentioned anything about it to me. I was very new to the endo world and didn’t know to ask questions about it. However, last week my surgeon told me that she’s only seen the “atypical” pathology twice in her career, and that it could very well mean that I could get a slow growing cancer on my ovaries. (I later looked up some research studies that validated that concern.) So, she said that if she can’t get all the endo removed from the remaining ovary, that she’s going to remove it because of the risk for cancer. Yay.

Lastly, good old childbirth has given me a prolapsed bladder, so she’s going to fix that. I guess there is something to look forward to!

Surgery is scheduled for early June. I’ll be traveling with my Mom (hubby is taking time off work to stay with the kids) and we’ll be up in WA for 6 days. I thought about driving both directions, but I don’t want to take the extra 2 more days away from my kids (and my Mom from my disabled sister and Dad).

As far as recovery goes, I really don’t know what to expect, because it all depends on what happens during the surgery. I just hope that this is my last surgery!

Thanks for your prayers!!

Advertisements

Leave a comment

Filed under Endometriosis