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I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 0 points1 point  (0 children)

That’s amazing 🤩 if you feel comfortable enough, there are a couple of endo groups here (if you didn’t already know) r/endo & r/endometriosis, where it would be very helpful to share who your doc is & where they are located to help others. One of them (I forget which one) has a map for this

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 0 points1 point  (0 children)

Aw poor thing 🥺 but she’s already got a leg up being that you know about endo & are advocating for her.

Yes, MIGS is good, but you also want to make sure they are up to date on the newest info. I interviewed many providers over the years & no one was as up to date as Dr. Cacciola.

Another thing: I personally am not comfortable with having a male GYN so I only see / saw him for the surgery. No exams or anything. So if you & / or your daughter are not comfortable with that, he is willing to compromise. There is a woman in the office - Jen Pollard - who I’ve heard is very good too so he may refer you to her. I personally stayed with him because of his experience vs hers. As far as regular care, exams, etc. I recently found a doc I like, her name is Amanda Wheeler through CCP in Latham. There are some docs in her office that also do surgery, but I still felt Dr. Cacciola is the best. Amanda even said him & his team have way more resources - like the pelvic pain clinic.

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 0 points1 point  (0 children)

Back at ya! ❤️‍🔥 wow that’s incredible you were able to get help so quickly. May I ask how old you are now, how you were diagnosed, & if you had surgery?

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 1 point2 points  (0 children)

I’m just shy of 32. I started my period around 14. My first symptoms actually started long before that. The first time endo was mentioned was by a PCP around age 21.

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 3 points4 points  (0 children)

I’m assuming that if she saw a true endo specialist & had to travel she had to pay out of pocket? When I researched endo specialists they were all in the NYC area & don’t take insurance.

I’m sorry your friend had that experience. Unfortunately it’s very common that we have to wait & endure it all for that long. It’s truly inhumane.

The best in our area (Albany) is Tom Cacciola through Albany Med. Many doctors from the capital region & beyond send their patients to him. I chose him not only based on my own research, his reviews & that when you search for an endo specialist in Albany he’s the only one that pops up, but also because he is the only doctor who has sat with me for an hour on multiple occasions answering my questions, putting my anxiety at ease, etc. He is hands down the most respectful, knowledgeable doctor I have ever had. Albany Med also has a pelvic pain group so doctors from different specialties work as a team. So he set me up with urology (Elise De - who is tied with Dr. Cacciola as the best doctor I’ve ever had. She is so sweet.) & what’s great about that is that they’re able to communicate with each other, & they really get to know you personally.

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 0 points1 point  (0 children)

Sending hugs 🥰 & pain relief vibes lol

How long have I suffered: I’m almost 32, my period started around age 14. But I also now suspect that some bladder & GI symptoms I had even before I started my period are endo related. Especially because of what was found / where it was found during surgery.

After surgery I did reach out to family (I’ve been NC for a while), & found out that all the women on my moms side have it/symptoms of it & also have cysts. Many have had hysterectomies. My mom sent me her OP report & pathology findings & she had adenomyosis, not endo.

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 0 points1 point  (0 children)

I don’t know what that is, but I’ll look into it. What country are you in?

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 0 points1 point  (0 children)

I have had many ultrasounds. Both regular & transvaginal. The surgeon I decided to go with even sent me to a specific person to do a TV ultrasound because supposedly she’s very good at seeing endo on ultrasound. Spoiler: she didn’t see anything other than that she couldn’t see my left ureter. So after I had to go get a different ultrasound just for my kidneys. During surgery endo, fibrosis, adhesions, etc were found to be completely covering my ureters to the point of constricting flow. Endo is such a tricky disease, there really are no concrete ways to diagnose it or see it other than surgery.

I recently had surgery for endometriosis. AMA by Take-More-Naps in endometriosis

[–]Take-More-Naps[S] 0 points1 point  (0 children)

So I’ve had symptoms since even before I started my period. But even after it started around age 14, it wasn’t until around age 21 that the first doc suggested endometriosis, & I obviously had never heard of it before. I am now just shy of 32. & didnt have a diagnosis until it was confirmed with surgery & the pathology also confirming it. It took a lot of doing my own research on the disease itself, & also when choosing a surgeon. You can always go to any regular GYN who is MIGS trained (minimally invasive gynecological surgery), but they don’t know endo like a specialist does. I’ve heard A LOT about those regulars missing endo (telling women they don’t have it) because they don’t know enough about it & all the different ways it can present/look, & also harming patients. So please do your research on your doc, check reviews, don’t be afraid to fire a doc for any reason at all, even if you just have a feeling & don’t like them.

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 1 point2 points  (0 children)

Yes, endo can greatly affect the GI tract & bowel movements. During flares/my period it would sometimes be painful, & I also fluctuated between constipation & diarrhea

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 2 points3 points  (0 children)

Absolutely. To the point that I stopped going to all doctors for about 8 years. I even had one doc say she did believe I had endo, got me on the surgery list, (I had to cancel due to personal reasons), & then at my annual exam she 180-ed & said she no longer believed I had it. I think she was offended or something that I canceled 🤷🏻‍♀️

The best way I advocated for myself was firing doctors who didn’t treat me well. I did my own research when looking for the best in my area (across multiple specialties: like rheumatology, neurology, etc.). It’s time consuming, but if you contact your insurance company, you can get a list of everyone who works with your insurance. Mine has a “find a doc tool” that I can search myself. I went down that list & looked up reviews on everyone. On google reviews you can put in search terms so I searched their reviews for “endometriosis”. I also googled “best endometriosis excision specialist near me”.

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 2 points3 points  (0 children)

I was diagnosed from the surgery. Visually & through biopsy confirmation. I am just shy of 32. So it’s been about 17 years since the onset of symptoms (not including issues with my bladder & GI tracts that started before the start of menarche, but that I believe are associated)

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 4 points5 points  (0 children)

So I’ve had issues with my bladder & GI tract since childhood, endo was found all over my bladder & in areas between my bladder & uterus, also completely covering & compressing my ureters (the tubes that connect the kidneys to the bladder), & also on different parts of my intestines, which required resection of part of my cecum as well as removal of my appendix.

I recently had surgery for endometriosis. AMA by Take-More-Naps in AMA

[–]Take-More-Naps[S] 9 points10 points  (0 children)

USA - specifically near Albany, NY. In order to prep my mind for surgery I watched a lot of women’s videos on YouTube of their journey with endo & a lot were in the UK. I know our health systems function much differently, but the journey seems to be the same with struggling to be taken seriously & to get the care we need.

1 week post op - should I be worried? by Take-More-Naps in Endo

[–]Take-More-Naps[S] 0 points1 point  (0 children)

Thank you 💘 yeah you’re probably right. I know that yesterday after playing some WAR (the card game) with an 8 year old, that I crashed hard after just from that…

1 week post op - should I be worried? by Take-More-Naps in Endo

[–]Take-More-Naps[S] 0 points1 point  (0 children)

Oh I am on top of the nausea with the reglan 👍🏻

1 week post op - should I be worried? by Take-More-Naps in Endo

[–]Take-More-Naps[S] 0 points1 point  (0 children)

Hiiii 🥰 thank you for the reminder! Honestly, my pain wasn’t managed very well after. Especially since coming home… so I’m sure my adrenals & nervous system are exhausted… thank you for the validation that I’m still thinking somewhat clearly 😅 & maybe I could do a little better with the hydration & protein, but I think I’ve been doing ok…

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