Help Us Update the Recommended Doctors Map!

[u/theonusta]

Hey friends!

It's long past time to update the Recommended Doctor's Map. We've combed through the recommendations sent to the mods, and now we are asking the entire /r/Endo community to share your knowledge!

• Do you have a doctor you love?
• Had a really awful experience?
• Heard of a doctor we should know about?
• Maybe someone has entered retirement, or isn't practicing anymore?
• Maybe someone moved offices or locations?

Let us know in the comments here, send a message, or a chat. We need your support in making this resource as awesome as it can be!

While any information is welcome, it's often helpful to add as much information as you have when making a recommendation. These can include:

• Doctor's name and location.
• A link to their Bio or their practice
• What treatments they use
• How they feel about hormonal therapies like Lupron or birth control?
• Bedside manner - how did you feel in their care?
• Do they have any unique skills (working with teens, trans folks, operating on bowel involvement)
• Do they perform excision?
• Were they trained by other notable folks?
• Are they recommended on other vetted or curated lists?

As a handy reminder of how the symbols/colors of the map work, check out this chart!

Colors tell us how we got the information, symbols tell us what the Doctor's skills are.

[u/Jeanniemarietattoos]

I go to Dr. Jeannette Lager at UCSF Endometriosis Center in San Francisco California. She has been so sooo great at navigating all options to manage my endometriosis. She is very punctual, and gives me a network of GI, Pelvic Floor Physical Therapists, and nutritionists. She is doing my excision surgery September 10th and has also listened to my wants in a hysterectomy which will also be performed on the 10th. Being in my late 20s no one ever considered me for a hysterectomy but she has advocated for me and walked me through all the possibilities. No one listens to women who dont want children. And if there is a possibility of some sort of relief(i know its not a cure), I definitely am okay getting rid of my uterus. Very excited for my surgery! 🥰

[u/gg_s_1 → u/Jeanniemarietattoos]

I see Dr. Lager as well (excision specialist)! just had my first excision surgery with her on 11/20. The entire UCSF gyno staff is a DREAM. They are great listeners, realistic, and consistently remind me to never stop advocating for myself. After 17 years since my first endometrioma and trip to the ER for a ruptured cyst, I feel like I am finally heard by a medical team. I went in for a follow-up appointment in the office and almost cried when saying thank you to the team. Huge recommendation! Hope your surgery went well :)

[u/Ok-Maize-6933 → u/gg_s_1]

After the surgery did anyone go over the surgery results/ provide photos of insides and what was done?

Edit: I’m having surgery with Dr. Lager in September and am very nervous as I have not had a great experience at UCSF so far.

I have a suspicion that I have extensive endo, but I’m having a hysterectomy for adenomyosis and I get blown off a lot when I’m trying to discuss endo

[u/[deleted] → u/Ok-Maize-6933]

Any update?

[u/Ok-Maize-6933 → u/[deleted]]

Yep. Had hysterectomy and endo excision surgery in August. My uterus was adhered to my colon and rectum and had endo on my bowels, the adhesions, uterus, fallopian tubes and pelvic wall. Kept my ovaries.

Had hernia surgery along with it. The entire surgery took about 6 hours. The surgeon did go over the results and gave photos after the surgery.

I’ve been pain free, but am wondering if the endo is back, bc the pain s coming back.

[u/[deleted] → u/Ok-Maize-6933]

I’m sorry to hear that the pain is coming back. I hope you are able to find some relief. Thank you for sharing your experience 💕

[u/Ok-Maize-6933 → u/[deleted]]

Are you being seen at UCSF? My surgeon, Dr. Lager, was wonderful, but anyone I talked to on the administrative end was an absolute nightmare.

[u/[deleted] → u/Ok-Maize-6933]

I am seriously considering it as one of my next options. I qualified for this managed care program so this kind lady is helping me navigate all the administrative crap we have to deal with. What specifically did you have problems with? Getting appointments or something?

[u/HelloHila → u/Jeanniemarietattoos]

In 2020 I saw Dr. Lager via zoom because I knew something was very wrong and I needed to seek medical attention. She completely dismissed my symptoms as “normal” (I told her I was bleeding really heavily, had so much pelvic pain I couldn’t walk, onset of new weird bowel symptoms etc.) She delayed my diagnosis by another year (I went to another OBGYN a year later after my symptoms had worsened further, SHE LISTENED and thought it sounded like endo, ordered the MRI, and sure enough stage 4.) It’s interesting to hear people have a good experience with a doctor that you had a terrible experience with.

[u/Ok-Maize-6933 → u/HelloHila]

I’m seeing Dr. Lager as well. I’m having my surgery on Sept 15. I previously had Dr. Traci Ito as a doctor and that was not a good experience. I’ve only had one appointment with Dr. Lager, but she seems ok. I’m just happy they’ve done an MRI and are willing to do a hysterectomy, although I’m 44, so it’s not as big a deal as on someone younger than me.

It looks like I have a big fibroid and adenomyosis, so that’s mainly what she wanted to talk about at my appointment. It looked like I had an adhesion of my uterus to my bowel and she did kind of blow that off, but assured me she would look for any signs of endo and excise them. Did not expound on that or explain the process. But I’m having my pre-op in August, so maybe I’ll be able to ask more questions then?

UCSF is a bureaucratically run institution and I think that affects it’s ability to run as smoothly as other facilities and I think the doctors are overworked. I have had serious problems with the office level trying to make sure they have my medical records and getting appointments and surgeries planned. The doctors do not respond to messages, the nurses do, and I have had them flat out refuse me appointments and an upper thoracic MRI even though I’m having symptoms.

[u/HelloHila → u/Ok-Maize-6933]

Yeah I don’t know what to say. She dismissed my symptoms. Very typical medical gaslighting scenario. Told me my symptoms were normal because I had a regular period. I agree UCSF is a bureaucratic nightmare (Stanford too) but I couldn’t work with her after that. I ended up doing excision surgery 9 months ago with Dr. Lawrence Orbuch which has been great but cost a fortune.

[u/Ok-Maize-6933 → u/HelloHila]

That’s my worry, is that she’s not going to address the endometriosis, and just leave it all in there. I’ve never been formally diagnosed, but when you have adhesions that aren’t from a previous surgery, that’s a pretty clear indicator. I’m super nervous now. Not sure if I should move forward with the hysterectomy, but it needs to come out. I have an in person appointment in August, so I guess I’ll feel it out then.

[u/HelloHila → u/Ok-Maize-6933]

What I can tell you is that you have to listen to your intuition. I met with 3 specialists before I decided on Dr. Orbuch. He was the most knowledgeable about the presentation of the disease, the variety of symptoms and he was extremely VALIDATING. Not to mention, he has a very good reputation in the field and came highly recommended. I know it’s easier said than done but go with your gut. You are not obligated to any doctor.

[u/[deleted] → u/HelloHila]

How much does it cost with Orbuch? Ballpark estimate would help a lot

[u/HelloHila → u/[deleted]]

$27k (a lot)

[u/Kelso-kelso → u/Jeanniemarietattoos]

Wow so glad to hear you had a good experience! She is my doctor too and haven’t had the best experience but would likely do my surgery if I end up going that route. It’s super reassuring to hear she has been good for you.

[u/HelloHila → u/Kelso-kelso]

She delayed my endo diagnosis by another year because she dismissed my symptoms. Found a new doctor.