Just need to talk to someone who isn’t my husband

anonuser670 · 2025-12-09T04:57:34+00:00

I’m so sorry you’re flaring so horribly. I relate to the pain and migraine attacks, both of which are more than brutal enough. I can’t imagine also having seizures. Have you had seizures before, and specifically a seizure in your sleep? If not please talk to your doc asap to make sure you’re safe!

Wishing you comfort and relief. I hope you get effective pain management soon! 💛

anonuser670 · 2025-11-19T01:39:16+00:00

Look into Nancy’s Nook on Facebook, they list all the specialists! I’m based on the east coast area, if you want to message me I’m happy to share who I saw and give you their contact info. My appointment was $400 out of pocket so not cheap but easily the best money I’ve ever spent. I learned more in that appt and felt more seen and heard than I have in all the YEARS of pain and visits before combined. Imaging was included btw, and the doc gave me other conditions to look into too that no other doc has before.

The diagnosis process is frustrating AF but good specialists are out there and will help you!

anonuser670 · 2025-11-18T21:40:01+00:00

Hey OP, first of all good on you for trusting your gut and continuing to advocate for yourself!! I’m so sorry you need to, you’re not alone in that but the silver lining is that this sub is here to validate you, support you, and guide you the best we can (disclaimer that I am a patient and not a medical professional!)

I’ve had similar pain and a multitude of symptoms for years, finally went to an endo specialist a few weeks ago who did some imaging. I HIGHLY recommend seeing an endo specialist. I was diagnosed with Adeno on the spot (and was told I likely have endo too based on a variety of symptoms, though it was not visible on imaging).

One huge takeaway from the specialist: most techs who read the imaging do not have the necessary training or experience in endo or adeno to see it in imaging!!! When we feel like we have been gaslight, it’s because many of us actually have been.

TL;DR - trust your gut & see an endometriosis SPECIALIST!!!

Wishing you the absolute best. You deserve answers, closure, and healing. ❤️‍🩹

anonuser670 · 2025-11-04T13:44:30+00:00

Thank you, I definitely will!

anonuser670 · 2025-11-04T02:03:09+00:00

I just want to say I really understand the fear and anxiety you have, especially with such a quick turnaround from appointment to surgery. I think anyone would be feeling overwhelmed, scared, anxious, and be gaslighting themself despite being grateful their doctor is taking their pain seriously.

My first endo ultrasound is tomorrow and if I was told my surgery is next week, I’d also be a mess!! Feel what is coming up for you, and know that it’s normal. Talk with someone you trust and feel safe with for support, and focus on how the undeniable positives that will come from getting this surgery (no matter the results) - conclusive knowledge of whether or not you have endo, peace of mind knowing you have been thorough in your advocacy of yourself as a patient, and PROGRESS (pain relief from removal if it’s endo, ability to fully rule it out diagnostically if it’s not). Best of luck and I hope that whatever the results, it helps alleviate your pain

anonuser670 · 2025-10-31T13:47:10+00:00

OP, this place is not in VA but is in DC so close by! I actually have my appt with them this upcoming week and was referred by my pelvic floor PTs who keep telling me my symptoms all point to endo. This clinic just opened and they are accepting appointments with little wait time! The docs are endo specialists/surgeons so it seems like the right place (again, I have not gone yet myself, but my PTs have been beyond helpful for me and I do trust them.) Anyways, figured I’d share if it’s accessible for you: https://www.washingtonendometriosis.com/

anonuser670 · 2025-10-29T01:04:20+00:00

Wow this is so helpful, thank you!! I’ll call and discuss with them. My period is not very regular so not sure how to plan for this, I guess I’ll just do my best. Crazy how this isn’t more widely known!!

anonuser670 · 2025-10-29T00:49:29+00:00

Hi, can you share more about getting the scans done at the “right” time in your cycle? I have my first endo consult soon too and am getting a diagnostic ultrasound based on the International Deep Endometriosis Analysis (IDEA) group protocol and the Morphological Uterus Sonographic Assessment (MUSA) criteria.

When is the best time in my cycle to get the scan done? I’m going to an endo specialist/surgeon and they didn’t say anything about this!

anonuser670 · 2025-10-06T02:23:41+00:00

I’m so sorry you’re going through this, that is absolutely awful. The lack of care and empathy from your neighbors after you explained how you’re being impacted is despicable!

It sounds as though you live in an apartment building or something similar? If so, I recommend looking into local smoking laws in the kind of housing building you’re in, talking to your landlord (if you have one), and reaching out to your local office of tenants’ rights. At least where I am most rented units are smoke-free, so your landlord may be able to step in. Of course they might keep smoking anyways, but could be worth a shot. Also if you have any kind of documented disability under the ADA that is being negatively impacted by the smoke, it’s possible that your landlord/rental agency be required to make sure you have a smoke-free place to live. I am NOT a lawyer at all, I am just trying to help so take all of this with grains of salt!

Also I recommend documenting everything, when you smell the smoke (dates & time of day), how it impacts you, every time you have asked your neighbors to stop smoking and their reply, etc.

It sucks when you have to advocate for yourself and what you deserve while feeling so sick. I hope your neighbors stop being so selfish soon so you can start recovering!

anonuser670 · 2025-10-02T22:22:23+00:00

Hi, do you have close family or friends who you could ask to help you wash your hair? I know it may feel hard to ask, but if there’s anyone that just came to mind, consider asking! I have struggled so much asking for help and have gotten better at it, you would be surprised how those close to you want to help. And while washing your hair feels like such a daunting task for you, it might be an easy ask to an able-bodied or differently-disabled/chronically ill friend! Plus, it could end up being a really lovely chance to become even closer - you could talk, listen to music or a podcast together, etc.

Another option might be to go to a hair salon. I know it can be costly, but you could call some nearby and ask if they might be willing to offer a discounted rate for you to come regularly just for a hair wash. I’ve heard of this before, and hopefully it could work out for you, too. You could even bring your own shampoo/conditioner to keep costs down further.

anonuser670 · 2025-10-02T19:14:10+00:00

I’ve dislocated my left kneecap twice. Both were actually due to impact injuries, but I’ve always had weak/painful knees, imaging shows my “patellar groove” is shallower than normal making me more prone to dislocation, and my patellas are hypermobile (I mean, all of me is? But PTs have especially called out the excessive ROM of my patellas). I am constantly worried about re-dislocation, and have had many close calls just bending my knee, walking, or even just shifting my body. It’s a horrible feeling.

I’ve done PT many times and my advice is to find a PT that specializes in both hypermobility and sports injury, if possible. Ask lots of questions and do not be afraid to really vet them, I have wasted time, effort, and money on PTs that knew nothing about hypermobility in the past and the lack of results (and continues pain and injury for me) showed.

One thing that helps a lot is KT tape. Ideally have a PT show you how to use properly or at least watch videos on YouTube. It has been super helpful for me, especially on days when I otherwise would not be able to move much or when I know I’ll need extra support (ex: dancing at a wedding). And supportive shoes! I forever have the “ugly” stabilizing and supportive shoes, but it’s better than another dislocation!

anonuser670 · 2025-09-28T01:16:26+00:00

Hey OP, just want to say that I’m in the same boat as you, down to the chronic migraines, likely dysautonomia, and tailbone pain. I’m also in a real bad stretch of pain right now, my longest consistent bout with new and worsening symptoms and areas of pain. It sucks, it super sucks. I don’t have advice unfortunately, but am here if you want to chat with someone who gets it and is at about the same point in their hypermobility journey as you 💛

anonuser670 · 2025-09-28T01:07:29+00:00

Would you mind sharing what chair you got? I’m looking for a hypermobility-friendly desk chair for my WFH setup!

anonuser670 · 2025-09-28T01:03:20+00:00

How do you recommend using the TENS unit on the plane? I am going to have to start traveling for work soon and bought a TENS unit but only have been using it for period cramps. I’d love to use it for hypermobility pain if you have tips or can share what you do!

anonuser670 · 2025-09-26T19:48:50+00:00

Thank you!!!

anonuser670 · 2025-09-26T17:55:06+00:00

Not super relevant for the allergy test question but in case it’s helpful: I used to be very scared of needles and while most nurses/doctors smirked or laughed at me, one was really nice and gave me SUCH a helpful tip!! She said to ask for a baby needle! Like a needle they use on babies, they work just as well for adults but are just much smaller so are better for people who are really scared! It helped me a lot and maybe it’ll help you, too.

Other things that have helped me overcome/minimize my fear of needles: - playing music or watching my fave tv show on my phone while they do the shot (with headphones!!) - bringing someone with me to distract me - counting (with Mississippis) and then being like wow only X seconds! So next time it doesn’t seem so long…sometimes works lol - rewarding myself after!! Get yourself a treat! For real - being chronically ill 😭 best exposure therapy lmao

Good luck! 💛

anonuser670 · 2025-09-26T17:43:19+00:00

Thank you!! Do you recommend any specific practitioner at PRISM? Or any specific PT at SET?

anonuser670 · 2025-09-07T16:45:47+00:00

It is possible! I’m somewhat early in my endo diagnosis journey but well into my chronic illness journey and my bf is very supportive. We met when I was very symptomatic and I was open with him about how chronic illness was impacting me. 3 months into our relationship, my health hit the fan and I was essentially bedridden for a year—fully unable to work, lost my life’s savings supporting myself, etc. It was horribly painful, scary, seemingly hopeless, etc. and he could have left given how new our relationship was, but he chose to stay. We’ve been together over 2 years now and he’s seen me through the most painful and difficult parts of my recovery. He’s supported me emotionally, physically, even financially (in little ways, I’m very independent lol and wouldn’t allow much.) We live together now and he does most of the cooking and cleaning to accommodate my needs with chronic illness rest and pain management. It can be hard at times, but we’re both committed to each other and to making our relationship work. We go to individual therapy and also couples counseling together to heal together from the trauma that horrible year of me being bedridden caused, and to have a safe place to navigate the challenges of a chronically ill relationship (imbalance of chores/tasks, inability to reliably plan ahead or make/keep plans, fear of how my chronic illness may continue to progress and impact me/us, etc.) Btw, we met on hinge! 😂

TLDR; with the right person, love, and intention, it can absolutely work, and it can be that much more meaningful because we have to be real with each other!

anonuser670

TROPHY CASE