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Are New Symptoms Cause For Concern? Curious If I Should Explore This Or Just Assume It’s Endo. More Info 👇🏼

A MyEndometriosisTeam Member asked a question 💭

2-ish months ago, I had a sudden onset of nausea, severe bloating, and left side and back pain. I met with an endometriosis excision specialist and she said it’s possible endo could be on my appendix causing the nausea. She recommends surgery but I don’t have the money right now (she’s out of network).

About a month ago, I noticed I’m not getting hunger cues. I have to remind myself to eat. Then, when I do, I’m immediately nauseous and in pain. I’m the type of person that is already excited… read more

August 15
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A MyEndometriosisTeam Member

Is that the same as transvaginal ultrasound ?

August 18
A MyEndometriosisTeam Member

Sorry for the late reply! I went to a gyn surgeon who specialises in laparoscopic management of a few diseases, endo included. He doesn't sit in the OBGYN wing of the hospital but in the laparoscopic surgery area. I found it hard to find an endo specialist from just hospital directories so I researched surgeons online one by one and went through almost 70 - narrowed it down to four who had a fellowship in Minimally Invasive Gynaecological Surgery AND listed that they had specialised experience with endo that I then met with. Of those two told me nothing was wrong with me so they were instant nos!

Btw this surgeons also advocated having a GI surgeon on call but not in the room in case anything was found on the outside of my bowel or on an extra-pelvic organ. I'm sorry you've had to have so many surgeries, really hoping this is the last one in a while! Also fingers crossed there's a way to get insurance coverage.

Have you perhaps encountered this list of questions to ask potential surgeons? The ones about an operative pathway etc may address your concerns about leaving behind endo: https://eightysixtheendo.com/questions-to-ask-y...

All the Questions to ask your Endometriosis Specialist
All the Questions to ask your Endometriosis Specialist
August 22
A MyEndometriosisTeam Member

This is so helpful, thank you! Did you see an endo excision specialist or general GYN for your surgery? I’ve had a partial hysterectomy but the endo doctor thinks the surgeon didn’t explore enough during surgery left behind endo. The only problem is the endo surgeon is out of pocket 🫣 but I worry if I go to a general GYN surgeon again that they won’t get it all. This would be my 3 rd surgery in 3 years.

August 19
A MyEndometriosisTeam Member

Sharing my story in case useful as I feel better post surgery.

I had some of these symptoms - no hunger cues (for maybe three years), loads of nausea and severe and painful bloating. I would only know to eat if I felt like passing out. I'm about four weeks post excision surgery and I am now hungry all the time! I'm talking multiple meals a day for multiple weeks in a row :) My bloating is still around but not constant (figuring out my trigger foods) and my nausea is reduced.

In terms of what worked: I had a colonoscopy pre surgery that came back clear. I had a laparoscopy for excision of lesions (none on my appendix) + adhesiolysis for the adhesions on my bowel (one side attached to the right lateral pelvic wall and the other to the left). They couldn't visualise the adhesions until the excision surgery itself although I had MRIs and ultrasounds etc. I consulted with a GI doc at the request of my surgeon but the GI doc attributed it all to endo.

Let me know if you want any tips for how to deal with these symptoms and good luck!

August 19
A MyEndometriosisTeam Member

It is :)

August 18

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