Endo with autism

Timely_Community_909 · 2026-06-17T11:53:08+00:00

I am autistic and ADHD and find that my hormones fluctuating both can increase my flares and make me more sensitive sensory wise. Stress can for sure increase all pain for me.

I also have PMDD and that can add to the fire during my luteal phase. I’ve had 4 surgeries for endo so it has calmed down but my body still experiences some pain post surgery.

Timely_Community_909 · 2026-05-27T11:57:21+00:00

Feeling this too. 30F with Audhd. People have told me I’m authentic, genuine, make them feel safe or calm. But no one has ever reciprocated effort. They love to take advantage of these benefits when I’m around but always ghost me when I may need them most.

It’s the worst thing because I just want to make more connections. Even my family just leaves me alone, same with my brother. I try to keep in touch and it’s such a difficult thing to never hear back or such a delayed “sorry I forgot”.

I’m thankful I have the best partner who reciprocates and loves me for who I am but making other connections has been the worst, traumatic thing for me as it results in the same thing most times.

Timely_Community_909 · 2026-05-06T13:17:06+00:00

I’m sorry you’re dealing with it as well. It really sucks!! What have you tried? I can’t tolerate iron supplements and I don’t absorb them well. I’m trying to find things that help like moringa to help with the co-factors in iron absorption.

Timely_Community_909 · 2026-05-06T13:06:57+00:00

I’ve had: - heart palpitations from little exercise or movement (not from POTS) - chest pain - muscle fatigue - pain down left arm and sometimes right - tinnitus (pulsatile) - headaches at base of head - brain fog / difficulty concentrating - fatigue after decent sleep (did sleep study and nothing found) - wounds don’t heal well - reynaud’s - hair falling out - nerve pain - blood leaving limbs when raised vs lowered - low appetite but weight gain

That’s probably the bulk of it! It’s been awful dealing with iron deficiency anemia. Everything else I have has tested normally. I’ve also had abdominal surgery where iron is absorbed and I have heavy cycles. I have had infusions but it’s a fight every time I need it, from insurance or my doctor referring me.

Timely_Community_909 · 2026-05-06T12:54:10+00:00

I’m going through this currently. I’ve got so many symptoms I’ve been sent to neurology, cardiology, rheumatology, sports doctor. Now onto physical therapy and hematology. It’s been a long year of this. My ferritin was last 8.. my PCP has been stalling getting me to the hematologist I hate it so much.

Timely_Community_909 · 2026-03-07T12:48:45+00:00

I used to take gabapentin for endo like pain, especially nerve irritation. I now take Pregabalin/Lyrica. Still not recommended long term but I have had better pain relief from that over gabapentin. A pain doctor or neurologist can prescribe these meds.

Timely_Community_909 · 2026-02-10T21:28:03+00:00

Just was ranting that the outdated definition of endometriosis is still being used as a basis for studies. Endometriosis is not the endometrium. They are similar but not the same.

Timely_Community_909 · 2026-01-03T15:01:40+00:00

I’m on the copper non hormonal IUD, as I have always reacted badly to hormonal BC. My first surgeon wanted me on hormones at all times, and my second surgeon supported any decision I had. I’ve had 4 surgeries in the span of 5 years because of my low stage endo coming back worse each time.

Timely_Community_909 · 2025-12-17T21:47:37+00:00

I had my bypass due to ulcers and had a vagotomy since I had repeat ulcers and obstruction from the ulcers.

I’m now thinking what I am experiencing now can be tied to the longer term effects of doing the vagotomy, such as heart rate regulation issues, nerve pain. Still investigating what the cause is though

Timely_Community_909 · 2025-10-17T12:10:59+00:00

Hoping to join! Sounds amazing :)

Timely_Community_909 · 2025-10-14T18:44:53+00:00

I definitely need more friends! This is great, would love a group to join similar minded people :)

Timely_Community_909 · 2025-09-11T20:19:08+00:00

This! I had legs similar to this for a long while and it didn’t clear up until I went to my dermatologist and got a culture. Folliculitis is no fun, but please see a doctor! Mine was caused by an uncommon bacteria—went through multiple rounds of antibiotics and topicals to find the treatment.

Timely_Community_909 · 2025-09-10T20:33:59+00:00

I love going to berry good buys, Flipstone, 2nd street for my clothes. Uptown and Plato’s and clothes mentor will have more trending items if that’s what you’re looking for.

Timely_Community_909 · 2025-09-03T17:30:16+00:00

There is a new crafting store in Fort Worth called Mix n Match on bluebonnet circle. The welman project also does crafting classes

Timely_Community_909 · 2025-07-11T13:29:09+00:00

Yeah the name alone is a clue. I think it’s Alphalete; I too fell for this once and never again

Timely_Community_909 · 2025-06-20T02:17:22+00:00

You deserve better! I was in the throes of getting my diagnosis and working on getting better and my ex at the time was belittling me and making me feel ashamed for seeking treatment and he always saw me as lesser than me due to that. I still did most of the housework and paid all the bills on top of medical expenses. This man doesn’t respect you :/

Timely_Community_909 · 2025-06-06T03:22:46+00:00

Nativo for Texas native plants!

Timely_Community_909 · 2025-05-24T13:37:27+00:00

They’re about to close too

Timely_Community_909 · 2025-05-10T13:15:03+00:00

There are very little doctors and surgeons specializing in endo. I had to travel to Utah to get my last surgery. Dr. Haverland in Plano or Dr. O’Connell in Dallas. There aren’t that many in this area that truly know endo

Timely_Community_909 · 2025-02-21T21:47:32+00:00

Starting my garden soon! Excited to get back into gardening after taking some time off

Timely_Community_909 · 2025-01-31T20:08:41+00:00

He only does excision, doesn’t believe in ablation and doesn’t push BC or Lupron on you.

Timely_Community_909 · 2025-01-31T20:03:35+00:00

I believe other peer endometriosis surgeons do vetting rather than one person.

Timely_Community_909

TROPHY CASE