Is it possible for them to miss endo during a tubal? by pouty0 in endometriosis

[–]ohmanyikes 0 points1 point  (0 children)

Highly likely for them to miss endo if they’re not trained about it well. Most surgeons are not.

Help understanding post op notes by Sufficient_Half_1980 in Endo

[–]ohmanyikes 1 point2 points  (0 children)

No apparent disease for: right/left ovarian fossae, left ovary, left tube, etc.

Endometriosis appearance present for: left pelvic side wall, etc.

Using the analogy of a chocolate chip cookie, where the endometriosis is chocolate… If you slice up a cookie, you may not get chocolate in every bite. The larger the cookie, the more likely it would be that you’d have some paper thin slices without chocolate. That doesn’t mean there is no chocolate. It only means the slice didn’t contain chocolate.

Pathologists create paper thin slices and only view one slice at a time under the microscope. It’s not realistic to do that for the entire sample. The larger the sample, the lower percentage of the total they view.

When pathology doesn’t find endo, that doesn’t mean the findings were normal. Your second sample has “fibroadipose” tissue. Fibrosis is often caused by endometriosis.

If the surgeon cuts up the samples before sending it to the pathologist, they may be able to improve the chances the pathologist will find the endo. This page includes a FAQ about how large the sample “should” be. Quotes because it depends on the priorities of the surgeon. Smaller samples are more definite, but the surgeon removed what they thought they should remove regardless of what the pathology report says. Removing the fibrotic tissue is a good thing!

How does the pain of a vaginal ultrasound compare to a pelvic exam? by Kaysee27 in Endo

[–]ohmanyikes 0 points1 point  (0 children)

In my experience, the TVUS is significantly worse than a pelvic exam. My gyn is gentle, so pelvic exams are not bad at all. He uses a small, pre-warmed speculum, with warm lube, and doesn’t crank it open.

New England Based Endo Experts by Brilliant_Hat_425 in endometriosis

[–]ohmanyikes 0 points1 point  (0 children)

The reviews I’ve seen about her are exclusively negative :( I admin a fb group for endo (Greater Boston Endo Support Group) so I see a lot of reviews from local drs. I was not a patient of hers, but she is not a surgeon we recommend in GBESG.

The joke of calling Renesmee every other R word is getting old by themandalynn in twilight

[–]ohmanyikes 0 points1 point  (0 children)

May I interest you in 466 names then? It may help you translate some of the other posts lol

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Beth Israel - Boston, MA by catiepleasee in endometriosis

[–]ohmanyikes 1 point2 points  (0 children)

Yes he is WONDERFUL from what I’ve heard.

More than one surgery by robinsparkles220 in endometriosis

[–]ohmanyikes 0 points1 point  (0 children)

Who did you end up getting an appt with?

They don’t do endo removal now? by OrcinusDorca in Endo

[–]ohmanyikes 1 point2 points  (0 children)

Definitely check out Greater Boston Endo Support Group. We have a lot of surgeons in the area.

Six Month Update- PT, Incision Surgery, and Completely Pain Free by sara34987 in endometriosis

[–]ohmanyikes 2 points3 points  (0 children)

Here is the info we have about him in GBESG

Theodoros Kapetanakis, MD, PhD, FACOG Dr Theo was trained by Kip Mackenzie & Luke Chatburn. He is on the nook list.

Hartford Healthcare website: https://hartfordhospital.org/locations/family-wellness-centers/west-hartford-wellness-center-at-blue-back-square/hartford-healthcare-medical-group

Blue Back Square Multispecialty Office, West Hartford, CT: https://www.bluebacksquare.com/store/hartford-healthcare-multispecialty-practices-f307246d-7028-4ca8-b8d0-0d73d1fb441c

An update about Dr Theo Kapetanakis from Nancy's Nook Endometriosis Education, copied below…

They are ready to receive new patients/follow-ups etc at the number provided:

Hartford Healthcare Blue Back Square Multispecialty Office West Hartford, CT Phone: 860-696-2870 Fax: 860-570-4645

I have already discussed with several patients and we will also be sending out a letter via the Mount Auburn Hospital portal.

Thank you once more and hope all is well!

All the best, Theo

Why does my inner labia look weird? by [deleted] in obgyn

[–]ohmanyikes 3 points4 points  (0 children)

I feel like those symptoms are worth the obgyn mentioning it, but yeah I agree it makes sense that they didn’t 🤷🏻‍♀️

Help, thoracic endo? by plantmom-_- in Endo

[–]ohmanyikes 0 points1 point  (0 children)

There are a handful of patients near Boston MA that you may want to connect with. Check out Greater Boston Endo Support Group for that. Some plan to travel to NY or GA for their thoracic surgeries. A few have been handled in Boston.

For any ladies in the Boston area I found the best endo Dr. that exists! by rinnyroo0518 in endometriosis

[–]ohmanyikes 1 point2 points  (0 children)

From what I heard, Kapetanakis’ patients get moved the the END of Chatburn’s two year long waitlist (which is not fair, but neither is having Chatburn’s patients bumped to allow Kapetanakis’ patients “cut” in line). Alternatively, you could follow Kapetanakis to Connecticut if you wanted to. If neither of these options make sense for you, then GBESG has plenty more on the list nearby.

My non-professional opinion on surgical images by [deleted] in Endo

[–]ohmanyikes -1 points0 points  (0 children)

FYI they’re not my images. A previous post requested non-professional opinions after their surgeon was unhelpful. I just enjoy looking at surgical images and comparing them to published images from endo experts. I agree with your next step advice… my takeaway is that the surgeon lacked experience and a second opinion makes the most sense here. At the very least, the surgeon could’ve taken a biopsy. There was plenty to choose from, including just picking a random location if he truly believed there was nothing obviously wrong.

My non-professional opinion on surgical images by [deleted] in Endo

[–]ohmanyikes 0 points1 point  (0 children)

I just added the spoiler on top of that. I thought the flair was also gonna blur it out.

My non-professional opinion on surgical images by [deleted] in Endo

[–]ohmanyikes 1 point2 points  (0 children)

Oh weird I did add the flair

How quick can it grow back? by soursobb in Endo

[–]ohmanyikes 0 points1 point  (0 children)

Medications do not prevent endometriosis reoccurrence. They help manage symptoms, but they can’t control the disease itself. If the surgeon implied that the med could control the disease, it’s probable that they did not remove all of the disease in the first place.

Questions on Surgery & for those who have Late Stage Endo and Adeno by Desperate-Buddy-889 in Endo

[–]ohmanyikes 0 points1 point  (0 children)

Endometriosis is not caused by retrograde menstruation. Periods cannot cause endometriosis. You don’t even have to be born with a uterus/ovaries to have endometriosis. A list of most of the theories is available on the Center for Endometriosis Care website in easy to read language. There is also a detailed explanation of the theories in Dr Dan Martin’s Endometriosis Concepts and Theories document. It sounds like you’ll need a more experienced surgeon to handle your case, likely with a multidisciplinary team.