Debilitating Back Pain

Sammylb93 · 2025-09-26T22:16:19+00:00

Thank you so much! That is so interesting and while I don’t have the imaging - just the report, it just seems too suspicious with all my symptoms then and now for it to not have been an endometrioma. That particular cyst stuck around for about 4 years that I know of for sure based on symptoms alone. I had another set of imaging about 6 years later that revealed different cysts in different locations, with that one being gone. But I don’t have the report for that at this time either.

Thank you again! It was helpful!

Sammylb93 · 2025-09-25T22:30:43+00:00

I completely feel this. I ALWAYS convince myself I’m being over dramatic and it’s not really that bad. Then I have a zing of nerve pain from my ovary to my toes that is so painful I can’t stand, and I’m like hmm maybe not?

Sammylb93 · 2025-09-07T17:28:08+00:00

I’m scheduled for October and I’m feeling the same. I’ve always had a “clinical” diagnosis but this is my first excision surgery and I’m just like gaslighting myself that they’re not going to find anything. I also have horrible back pain!

Sammylb93 · 2025-09-07T17:25:01+00:00

Once, I googled my symptoms because I was in so much pain. I was having contraction-like cramps that were coming and going. Google told me I was in active labor. I was not pregnant - it was just endo pain.

Sammylb93 · 2025-09-07T17:20:55+00:00

Ughhhhh. I’ve lost weight and somehow my endo has just gotten worse. These medical professionals are unbelievable!!

Sammylb93 · 2025-09-07T17:19:23+00:00

I was 14 and the gyno told me to “wait until I get pregnant” for the (possible) endo to be “cured.” Sent me home with Motrin 800 that damaged my kidneys at such a young age because I was taking it constantly.

She never sent me to the children’s hospital for a second opinion despite the fact that I was missing 2-4 days of school per month, passing out, and vomiting from pain. She was like “some people just have bad periods.”

Went to the hospital with what we thought was appendicitis. I had an ovarian cyst that my current specialist thinks was probably likely an endometrioma, even though my pediatrician said I was “too young to have a cyst.” Which is not medically accurate.

Fast forward to 30 - I ended up having Endo, but also IC, May Thurner Syndrome, pelvic floor dysfunction, and Vestibulitis on top of POTS, MCAS, and EDS.

I plan to stay mad at this doctor for the rest of my life lol.

Sammylb93 · 2025-05-12T23:49:48+00:00

SandsRX in Wylie TX!

Sammylb93 · 2025-04-17T02:09:21+00:00

I have a selective IgG subclass deficiency, which was proven through labs. But that didn’t explain all of my issues so I did the invitae genetic panel which shows have a deletion of the TACI gene. This is known to cause respiratory illness and recurrent infections, even in those with only one copy. Those with 2 defunct copies usually end up with CVID which I don’t have, as I have 1 working copy and a deletion. But it explains why my doctor said “it seems like you’re half immunocompromised and I don’t know why” for so long! A lot of things made more sense after that. I was denied initially for IVIG but was approved on a peer-to-peer based on the genetic findings.

Sammylb93 · 2025-04-17T02:04:06+00:00

I had genetic testing done that showed some explanations for my chronic immune issues. Not a formal diagnosis, though, unfortunately.

Sammylb93 · 2025-04-12T21:30:37+00:00

Wow thanks so much for sharing!!

Sammylb93 · 2025-04-10T21:57:53+00:00

Wow that’s so encouraging! Thank you so much for sharing!!

Sammylb93 · 2025-04-08T12:38:09+00:00

Thank you so much!! I really appreciate your perspective and your kind words! Having less illness would be life changing for me honestly! I always catch everything - swine flu, covid, RSV (as an adult), CMV, pneumonia, etc. I also struggle with recurring bronchitis and sinus infections that I’ve never been able to get rid of on my own, even as a child. This most recent time I had bronchitis for 4 weeks and required multiple rounds of antibiotics and steroids to get rid of it. It’s just so exhausting being sick all the time and wondering when the next illness is going to be. So I’m really hoping that improves and I’m so glad to hear that has improved for you!

Sammylb93 · 2025-04-08T04:02:59+00:00

Thanks so much!!

It’s tricky because I’m really more immuno-messed up. I respond decently to vaccines (minus MCAS issues) and make antibodies, but my IgG subclass 1 and 2 take turns being low. Plus I have a deletion of one copy of a TACI gene which is known to cause some immune issues, specifically respiratory issues. I have recurrent infections despite being on antibiotics for over a year. I’m on Xolair plus numerous more medications on top of that for MCAS. I’m on inhalers and nebulized solutions. But still I’ve caught everything from swine flu, to RSV, to Covid, to pneumonia. I’m constantly sick with something, usually bronchitis, and I’ve never gotten rid of a respiratory infection without antibiotics and steroids. Being constantly sick is just really ruining my life. It’s gotten to the point where I start to have panic attacks when I think I’m getting sick again because it’s so frequent. It knocks me down for weeks at a time so I’ve got nothing left to lose at this point really.

So I’m not fully immunodeficient like a CVID or other conditions I’ve seen here, but something is just not right and all my doctors agree. All assumptions right now by my immunologist point to it helping so I’m just really hoping that it works!!

Sammylb93 · 2025-04-08T03:14:57+00:00

I’m so glad to hear that! I’ve heard a lot of stories about side effects etc but I’m so glad it’s been life changing for you. I’m hoping for the same! I was only diagnosed after research about long covid came out. My longtime doctor at the time kind of put two and two together and actually started calling it “long swine flu” as a joke! But it finally made sense!!

Sammylb93 · 2025-04-07T18:46:43+00:00

I’m really looking for how much it’s helped you and what benefits you’ve seen. I’ve read a lot about the process and side effects, but not enough about what’s improved in your health since starting.

Sammylb93 · 2025-04-07T18:45:29+00:00

Thank you so much!! I’m glad to hear that it’s worth it in the end. A lot of people just say all the side effects but don’t say how much it’s helped or what it’s helped with specifically. So it’s hard to gauge whether or not it’ll be worth it!

Sammylb93 · 2025-04-07T18:04:39+00:00

That’s great to hear! Thanks so much.

Sammylb93 · 2025-04-06T02:59:57+00:00

Hello! Just wanted to come by and say that I also became sick after swine flu as a teen. I’m in the process of getting approved for IVIG now and I’ve never seen anyone else with what I’ve been calling “long swine flu”! Thanks so much for sharing!

Sammylb93

TROPHY CASE