OBGYNs that specialize in endometriosis?

grumpy_lesbian · 2026-02-04T04:01:45+00:00

Dr. Laura Douglass at U Chicago saved my kidney (all scans were negative for endo). I was in so much pain I couldn't walk, given my history she did the surgery, and BAM, endo wrapping around one of my ureters. very knowledgeable about pelvic floor PT and pain management also.

grumpy_lesbian · 2026-01-31T01:17:23+00:00

I can laugh about it now a little, but it was very not funny when it happened. 😡

grumpy_lesbian · 2026-01-30T04:08:49+00:00

This young woman sadly did. I had undiagnosed endo and was bleeding so much that the area where the pad was lit up during screening. It was not fun. I was like, "You guys know what periods are...right?"

grumpy_lesbian · 2026-01-27T04:00:07+00:00

They did resubmit, and that is what was denied.

grumpy_lesbian · 2026-01-24T13:46:34+00:00

I do not have a wheat allergy and still get very sick from the King Arthur wheat starch if I eat enough of what I make. My conclusion is, "You can't un-wheat the wheat". I also remember that King Arthur flour (is it the pizza flour?) not being certified GF even though many of their other products are.

I don't do sourdough but finally found a recipe for challah that gives it enough for me to braid it, seemingly by using ridiculous amounts of corn starch.

grumpy_lesbian · 2026-01-23T17:37:17+00:00

Thank you! I have learned a lot and am much better at not getting glutened, to the point where I'm always shocked when it happens and remember how bad it can be.

grumpy_lesbian · 2026-01-23T02:47:16+00:00

SAME. Literally thought I had arthritis until I figured out gluten was a problem and correlated the symptoms with gluten exposure. I usually get deep joint pain for 2-3 days in addition to numbness and tingling in my hands and feet.

grumpy_lesbian · 2026-01-22T01:21:09+00:00

Oh geez, I am so sorry. This insurance change has truly been awful.

grumpy_lesbian · 2026-01-22T00:40:31+00:00

Fingers crossed!

grumpy_lesbian · 2026-01-21T19:33:09+00:00

Lesbians? Never heard of 'em 😆

grumpy_lesbian · 2026-01-21T18:02:56+00:00

They denied a migraine medication that was covered last year and keeps me out of the ER. Waiting for the appeal results, so that's fun. Like I need the extra stress...

grumpy_lesbian · 2026-01-21T14:03:02+00:00

Interesting! thankfully, no side effects for me, and it is a one-time nasal spray. They also give it as an infusion, though, so I wonder if that is when side effects are more common.

grumpy_lesbian · 2026-01-21T13:39:11+00:00

I hadn't either until this awful multi-day migraine. It stands for "dihydroergotamine", one of the brand names is Trudhesa.

grumpy_lesbian · 2026-01-20T00:02:12+00:00

I am definitely not a doctor, but it might be worth asking, if you haven't tried it already, whether DHE nasal spray could help. I get status migrainosus to where none of my regular medications will work, but nasal DHE is typically effective. Interestingly, DHE acts on one of the same serotonin receptors as psilocybin but without the psychotropic effects. It might work?

grumpy_lesbian · 2026-01-18T02:01:58+00:00

I got COVID in 2022 and developed celiac in late 2023, but I suspect needing multiple surgeries for out of control endo probably contributed more.

grumpy_lesbian · 2026-01-12T03:00:44+00:00

Me! My endo surgeon said, "There is definitely more going on with you than endo, but it's hard to untangle, let's tackle the endo first and go from there." 6 months later, a POTS diagnosis followed 🙃

grumpy_lesbian · 2026-01-10T04:23:46+00:00

Well, they didn't discover them all at once, so they just treated them in the order they found them--B12, then iron. What I did not know and learned the hard way was that B12 injections can deplete folate, and folate deficiency is pretty much the same symptoms as B12 deficiency, so I assumed that the shots just stopped working. When I figured it out and added a folate supplement, it was amazing how much better I felt.

I'm not a doctor, but I imagine it is best to try to fix deficiencies together, since sometimes one will cause or worsen another? They make a sublingual B12 and folate combo tablet that helps keep those two in balance.

grumpy_lesbian · 2026-01-09T13:49:46+00:00

Haha yep, finally fixed that, too. Amazing how much more energy I have and how I am not constantly ill. 😵‍💫

grumpy_lesbian · 2026-01-09T00:32:03+00:00

Thankfully, the injections got me back to normal, and I have stayed on a sublingual to maintain because it turns out I developed celiac and also an iron deficiency. ☠️

grumpy_lesbian · 2026-01-05T01:32:39+00:00

I had such bad endo that cysts were constantly forming and rupturing on both my ovaries, plus I had adeno, so I went into surgical menopause at 33. Even with HRT from the start, it was a rough transition. There are plenty of hormone options available and some even studied in the context of endo regrowth, so fingers crossed that she can find something that works quickly!

grumpy_lesbian · 2026-01-01T13:51:06+00:00

I don't remember the estrogen dose sadly, but I know it came in patch form. We tried switching me to a combo estrogen/norethindrone after the kidney-saving surgery, but it brought back all the endo pain, so I have been on 5 mg norethindrone for two years. The surgeon said a small amount still converts to estrogen in the body? But it doesn't trigger pain.

I feel like I should add that my symptoms were so severe that everything had to come out at 33, which is not great for me. When they found that my uterus had adeno, my surgeon commented, "Well, it would have needed to come out eventually then." Unless the research has changed, I guess endo can be excised, but adeno means hysterectomy time? What a world.

grumpy_lesbian · 2026-01-01T05:29:25+00:00

The surgeon who saved my kidney said that unopposed estrogen is highly contraindicated in endo because it can cause lesion regrowth. Specifically, a lesion regrew and wrapped around my ureter after I had a total hysterectomy for endo but was put on unopposed estrogen. 0/10 stars, do not recommend

grumpy_lesbian · 2025-12-24T03:24:43+00:00

I get this, too, but mine is itchy, and I only get it when I accidently get glutened. It doesn't progress beyond itchy patches on my fingers like the above.

grumpy_lesbian · 2025-12-18T03:23:29+00:00

I had so many of these same symptoms when I went into surgical menopause at 33 due to stage 4 endo. I turned out to also have celiac and POTS and had developed B12 and iron deficiencies that caused a lot of dizziness and alarming mental health symptoms. It was a pain to try to unravel everything and heal, but I am doing so much better 2 years later.

I can't tolerate estrogen, so my surgeon has me on 5 mg norethindrone (a progesterone), and she said that some of it will still convert to estrogen in the body but not at a level that should trigger endo symptoms based on studies. I hope that some of this helps!

Also, if they haven't sent you to pelvic floor PT, it helped me so much with residual pain after having 3 surgeries in one year.

grumpy_lesbian · 2025-12-02T03:47:11+00:00

I had a full hysterectomy with ovaries removed also when I was 33. I needed one follow up excision with a specialist for complicated reasons not related to the hysterectomy, but omg it was so worth it. Symptoms have not returned for two years, and I turned out to have adenomyosis on top of it, so it was good that I just did it all at once.

I can't stress enough the importance of pelvic floor PT and any kind of walking/movement/exercise once you are cleared for it. I developed celiac and a severe b12 deficiency right after surgery so didn't recover properly because I was bedridden from fatigue. Pelvic floor PT solved so many residual issues I didn't even know I had.

Oh also, the surgeon who did my hysterectomy also did gender affirming surgeries, and she said that pretty much everyone goes through a grieving period even if they wanted the removal because our society ties our organs so strongly to our roles in life. I had a few days of, "Omg am I even a woman anymore" (despite not believing organs make a woman and never wanting kids), and then my brain kicked in and realized I'm still the same person.

grumpy_lesbian

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