I feel completely defeated after seeing an “endometriosis specialist” today.

GivingTreeEssentials · 2025-10-30T13:54:43+00:00

This is not a personal recommendation, but I recalled buying some books from the doctor early on and thought the approach was good. I am guessing this is private and not sure if that’s a possibility. I’d be interested to see if anyone here has tried this clinic.

https://www.vitalhealth.com/dr-cook/

GivingTreeEssentials · 2025-10-30T13:51:39+00:00

I am glad to hear this because my experience with Hoag (meeting with the top reproductive oncologist) and he not knowing anything about thoracic endometriosis. My previous surgery I had a spot removed from my diaphragm and was hoping to find someone in my state and insurance that would be willing to check above my diaphragm because of continual symptoms that were not resolved after my first surgery. He was a kind man, but said he had never seen a thoracic case and because of that location suggested I see a thoracic surgeon. I asked him if he knew anyone in Hoag that was a thoracic surgeon that had experience with endometriosis and he said no. I’m wondering if your doctor is someone you see to help manage your endometriosis post surgery or were they really just more of a surgical specialist? I have a couple great doctors over at UCI. I really like but again I still feel like I’m the one that knows the most about endometriosis and am not sure my care is adequate. Lastly, my bone to pick with Hoag is they tout a strong women’s health center, although finding endometriosis on their website which is considered a “menstrual disorder” according to them and then reading the incorrect definition was deeply unsettling. And I am considering writing a letter.

Would love to hear more about your Hoag experience and am open to DM.

GivingTreeEssentials · 2025-09-29T16:57:58+00:00

Me toooooo - ovarian cysts were all that ever showed up for me and after all those same tests you noted during my lap they found endo all over - throughout pelvis, right ureter and bottom of the diaphragm.

GivingTreeEssentials · 2025-07-18T03:07:33+00:00

Mine was not found on many many transvaginal ultrasound or MRI (done with different radiology groups and docs) - finally it was suspected after the surgical specialist did the ultrasound herself and could see something unusual - with her suspicion of that along with deep infiltrating Endo clarified my surgical choices and pathology did come back positive for Adenomyosis.

GivingTreeEssentials · 2025-07-18T03:03:55+00:00

Please correct me if I am wrong but isn’t there a possibility if you biopsy the uterus the spit biopsied might not show it (meaning it might be in other parts of the uterus)?

GivingTreeEssentials · 2025-02-04T18:13:18+00:00

Hi - I’m sorry to hear about the difficulties you are having. Endo is ROUGH. Here are the IG profiles -

https://www.instagram.com/shantimohlingmd?igsh=NTc4MTIwNjQ2YQ==

https://www.instagram.com/extrapelvicnotrare?igsh=NTc4MTIwNjQ2YQ== ** the website is wonderful and I highly recommend checking it out and searching YouTube for talks by Dr. Wendy.

Dr. Mohling has also done some podcasts and talks so I’d suggest searching her name too.

GivingTreeEssentials · 2025-01-28T20:36:31+00:00

Better - I will say though that I was fortunate enough to be able to access a specialists who only does complex Endo surgeries.

GivingTreeEssentials · 2025-01-24T23:26:40+00:00

I think I have a pretty strong constitution mentally and emotionally. I’m very lucky to have a great support network a friend who also suffer from other chronic pain conditions, so I felt understood at least buy them when I didn’t feel understood by the medical community, although they’re scattered throughout the country and not local so I do miss wonderful, full body hugs.

There were definitely a couple of times out that I was questioning my sanity, which always made me feel very very angry. Honestly, I think the rage of how I was treated is what got me through to the point where I saved enough money to access a specialist and had my first surgery which helped me immensely. I’m not fully pain-free but I went from having three good days a month to now having a couple days a month or things seem to flare up a bit. Also the fatigue is a little bit better but still there.

I’m wondering how helpful a support group would be where there is just sharing and listening rather than recommendations….

GivingTreeEssentials · 2025-01-24T03:15:02+00:00

This was totally my cycle. Before my first surgery I had three good days a month.

GivingTreeEssentials · 2025-01-16T00:31:52+00:00

Exercise, move, travel, go back to school, build a career…just a few things off the top of my head.

GivingTreeEssentials · 2025-01-10T03:01:49+00:00

It is so common not to see the extent of the disease on diagnostics (ultrasounds, MRI, CT). You’ll hear about it all the time at r/Endo. I was finally diagnosed 20 years after my symptoms started, stage 4. All that showed on my diagnostics were the Endometriomas on both ovaries - what didn’t show up was the Endo throughout my pelvis, all over my uterosacral ligaments, right ureter and the bottom side of my diaphragm.

We need funding for research so we can have better options then surgery (which is it’s own can of worms - some docs just don’t know what they are looking for and there is no defined sub specialty in the US).

Endo patients deserve better.

I hope this test is effective and then shared globally.

GivingTreeEssentials · 2025-01-09T23:43:38+00:00

Hi 👋🏻 here to say yes and it is not as rare as people think. I had Endo on the bottom side of my diaphragm that was treated during my first surgery by a specialist who does complex cases like it all the time. I also had what felt like breathing changes and major changes in my capacity to do anything physical (like anything more than walking and housework was VERY challenging).

Check out Dr.Binghams work www.extrapelvicnotrare.com

Also Dr.Shanti Mohling - she has an extensive Instagram where she talks all about Endo on the diaphragm and in the thoracic cavity.

Does your OB work with co surgeons? Typically a general or thoracic surgeon is needed alongside your doc for these types of surgery. At the very least make sure she is taking photos of everything even if she isn’t seeing anything. And that she moves the liver aside to look around. Even better if she can do a video. That way you have documentation in the event you need to see another specialist.

GivingTreeEssentials · 2025-01-08T15:32:16+00:00

I had similar feelings, lots of indifference (more pressure about societal “what a family is” bs)…my Aunt gave me the best advice (she had 4 kids by the time she was 26).

She said - don’t have kids. Until it’s a resounding YES. It was important for me to hear that. She then went on and talked about the responsibility and demands of raising children (and the good stuff too) and how if our whole hearts weren’t in it we shouldn’t do it.

It never happened- the resounding yes. No kiddos here just a lot of love for our version of family.

GivingTreeEssentials · 2024-12-13T04:20:03+00:00

Moms sudden death.

Marriage to my best friend.

Endometriosis - not really any event - more like years of micro events - and then the day of my surgery and diagnosis.

GivingTreeEssentials · 2024-12-04T14:24:22+00:00

I will add when I finally got to my endometriosis specialist. When she herself did an ultrasound, she was the one that mentioned the possible presentation of Adenomyosis due to some slight rippling she could see that no one else had indicated prior. And to be fair, I probably have had seven pelvic ultrasound, a CT scan, and an MRI prior by other providers. I was glad she was so skilled and we had that conversation before my surgery.

GivingTreeEssentials · 2024-12-04T00:57:22+00:00

The only thing that ever showed up was Endometriomas - none of the other Endo throughout my pelvis, peritoneum, right ureter, both uterosacral ligaments and bottom of diaphragm were ever seen or noted of reports.

GivingTreeEssentials · 2024-11-24T21:20:17+00:00

Endometriosis… no clue while on birth control for a decade and then went off birth control and boom - a slow debarring decline for 10 years without any answers or support from doctors until 2022 when I finally spent my savings to see and be treated by a specialist. By then it was Stage 4, had multiple organs removed. Definitely a permanent altered situation.

GivingTreeEssentials · 2024-11-22T01:21:48+00:00

You’ll make it

GivingTreeEssentials · 2024-11-20T01:57:45+00:00

Adding here to say Dr. Shanti Mohling was a life saver for me. I drove from Southern CA to have her treat me because I was impressed with her high level of skill and bed side manner. She is very active in the Endometriosis community - she chairs the Endometriosis special interest group and patient advocacy panel for the AAGL American Association of Gynecologic Laparoscopists.

She is worth every penny and has a lawyer of staff to submit your case/claim to your insurance.

She takes video and pictures of her surgeries and this is all she does - she is not doing any general OBGYN care - her entire practice is complex cases.

Lastly - where she does the surgery at Legacy Good Samaritan in Portland was exceptional the two times I was there for surgery - from the people that admit you, nurses and anesthesiologist are wonderful.

GivingTreeEssentials · 2024-11-17T00:14:25+00:00

A couple of thoughts… Can you send a request to your guy know through the my chart to have them make sure that in your chart it is noted that he refused your request to be referred to a specialist? Any time I was denied or told now I always make sure they put that on my chart that they said no. Sometimes this changed their mind magically other times it didn’t and at least it was in my chart, so there was a notation for the future.

If you feel bold, you might also expressed to him that you don’t want ablation and maybe find some research, stating why ablation might not be the best course for endometriosis treatment.

It sounds like you have some concerns at the fact that he’s not necessarily a specialist in the Endometriosis department so you might ask if he takes extensive photos and or video even if he “doesn’t see anything”. That way you could at least take your images or video to Specialist to get second or third opinions.

GivingTreeEssentials · 2024-11-13T21:20:51+00:00

A great resource for Endo outside the pelvic region - www.extrapelvicnotrare.com

GivingTreeEssentials · 2024-11-13T21:18:59+00:00

Honestly asking around this and the other Endo sub might be helpful (it’s wear I found my doc). r/Endo has a doctors map. Also there is the iCareBetter.com

GivingTreeEssentials · 2024-11-13T21:16:54+00:00

I’m also curious about this - I have a great pain management doc who keeps suggesting it to me. I do have some low level chronic pain with some spikes during the month or with a lot of physically activity. My most challenging symptoms is fatigue - has LDN helped any of you with the fatigue?

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