September 1, 2021
I was wondering if anyone had seen bowel surgeon instead of an ob for endometriosis of the GI system?
I was also curious if there were enough studies to establish what is the gold standard is for removing endometriosis- abalation, excision or both? Also if methylene blue has been used in large controlled studies for the identification of endometriosis implants?
September 2, 2021
Your question about the gold standard of ablation vs excision is a really great one. While there are pros and cons to both and we advise you to speak to your doctor about which option is the best for you, ablation burns the tissue using heat or lasers while excision procedures cut the tissue away using sharp instruments or lasers. Ablation can make it difficult, not impossible but difficult, to collect samples for pathological testing due to the very nature of the procedure. It also tends to be more of a surface procedure that can leave deeper endometrial tissue left unfound and unremoved. I am going to link an article we have about the pros and cons of ablation vs excision that go into much deeper detail between the two. https://endometriosis.net/clinical/ablation-excision.
In terms of methylene blue being used in large controlled studies, this is a really great question. I've been reading studies here and there about endometrial dying and it's definitely interesting the results they're seeing in its aid to detect endometrial lesions. I've seen a few studies where it was 50 people and a few where it was 100 people but only a handful truthfully. Is this something you have been thinking about exploring Sam? Would love to hear your thoughts on it as well.
Sending lots of love your way.
💛Kayleigh, Endometriosis.net team
September 5, 2021
Thank you for the link! I’ve found a handful of studies but found a mixed results with respect to surgical techniques. However, anecdotally my mom felt her excision surgery was most helpful and that one of her ablation surgeries made her feel worse.
I was curious because I found a couple of small but promising studies when they used methylene blue, by comparison to other dyes. I also saw one that talked about using blue light that seemed pretty helpful albeit small. I was also intrigued by it because the lesions can be different colors including clear in nature. One of the studies used electron microscopy to evaluate the stained tissue and found the stain may work due to an altered extra cellular matrix with in the “endometrial like” tissue. Hence making a hypothesis for why certain stains and dyes may work.
I guess I was trying to get and idea if it would be worth my time to travel to a top rated hospital and/or specialist. I have done it in the past and it was absolutely worth the effort. But, this is also because I have a somewhat rare disease called Ehlers-Danlos Syndrome and needed complex spinal care. The potential complications of disease (as well as higher incidence of surgical complications) make me wonder if I would be better served by someone who is really involved in endometriosis care and who often uses interdisciplinary teams to solve problems and pick treatments.
Dr. Audrey Sheridan Moderator
September 4, 2021
My experience with endometriosis of the bowel is that for deep or widespread intestinal endo, a general surgeon or bowel specialist (like a colorectal surgeon) might work alongside the gynecologist during surgery--to deal with both the pelvic as well as the bowel endo. A surgeon who specializes in endometriosis may be able to deal with both intestinal and pelvic endo.
As far as your question about methylene blue, I'll echo Kayleigh's reply. I found only two small studies, so there are a lot of questions about how much it might help a surgeon to identify endometriosis lesions. Research is also being done on some other types of dye, including a fluorescent one.
Whether ablation or excision is possible really depends on the particular situation--like what structures are near a lesion or how deep it is. There are studies showing that one is better, and studies showing no difference. So I'd suggest having the discussion with your surgeon about how he/she decides which method to use.
I think the most important thing is to find a physician who has plenty of experience with endometriosis, and someone you can have clear conversations with. Discuss your goals and options, and then you can make a plan together.
Thanks so much for sharing your questions here. Please let us know how things go for you! Best wishes! -Audrey (endometriosis.net team)
September 6, 2021
Thank you Dr. Sheridan,
That helps me understand a bit better who to see. One of the reason I had concerns and was asking is I also have Ehlers-Danlos, so pelvic floor issues and/or rectal issues and surgical complications are a little more commonplace. Maybe you can also chime in on if you’d think I’d benefit going to a hospital or physician who is top rated and used to working in an interdisciplinary manner?
Dr. Audrey Sheridan Moderator
September 8, 2021
-Audrey (endometriosis.net team)
Becca Ironside Moderator
September 24, 2021
In my humble opinion, try to find an endometriosis multidisciplinary team who work together in the Operating Room. I have had patients who have had a GYN and a urologist work together during excision surgery for optimal outcomes.
Also, your EDS symptoms are contributing to spinal instability. This flares the pelvic floor muscles and put them into spasm. I have found from personal experience of having had spinal fusion surgery at L5-S1 that when the spine is stable and the core gets stronger, the pelvic floor muscles can then relax. This results in more ease with urination, bowel movements and sex.
Wishing you the very best of luck in whatever you decide to do to help yourself!! I am quite proud of you for tackling this task - it will be worth it!
- Becca endometriosis.net Team Member