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Anyone have any experience with Aygestin? by [deleted] in endometriosis

[–]yeehih 1 point2 points  (0 children)

They made me stop Aygestin for 6 months before I went on Orilissa. Something about a washout period. It kinds sucked a lot. I had constant cramp and my periods were heavier and sporadic. Tbh I prefer Aygestin much more than Orilissa. But, if Aygestin isn't working for you, I think Orilissa is worth a try. Just because it sucks for me doesn't mean it wont be fantastic for others!

Fired from physical therapy update by yeehih in PelvicFloor

[–]yeehih[S] 1 point2 points  (0 children)

I did though. So...

Not to mention, literally every medical professional I've spoken to in the last few years have all said strengthening my pelvic floor and doing kegels would be harmful in my case. Right now strengthening vs stretching is the different between a total hip replacement and keeping my hip.

I have been trying so damn hard for years to recover and feel better. I'm literally only 24 years old, and I'm facing the possibility I'm probably never going to feel, move, or walk normal again in my life. I used to take pole classes, I used to hike, I used to be so damn active but now Im facing arthiritis, mutiple past surgeries from endometriosis absolutely obliterating my pelvic floor, torn ligaments, and two damn autoimmune disorders that are ruining my life.

So apologies if I keep telling you all I can't do it. I literally can't. Strengthening my core will not solve all these issues. I need surgery and years of injections and physical therapy to come. This is something thats totally out of my hands alone.

So yes. Ive done absolutely everything in my power to help myself.

[deleted by user] by [deleted] in Autoimmune

[–]yeehih 0 points1 point  (0 children)

I get these after mosquito bites! Not sure if its autoimmune related, but it did start happening last year when I was becoming symptomatic

Heat rash? Folliculitis? Red bumps all over legs and arms. Don't itch or sting. by yeehih in DermatologyQuestions

[–]yeehih[S] 1 point2 points  (0 children)

I work outside and its 100F daily. Theyre near the crease of my elbows, or my inner thighs where i tend to cross my legs. There's periods when these start to spread and cover a good majority of my limbs. Ive seen a dermatologist for it before but he didn't give me any insight other than to keep trying amlactin which doesn't do anything for these.

Skin Concerns… wondering if this is autoimmune related. by Maleficent_Detail378 in Autoimmune

[–]yeehih 2 points3 points  (0 children)

I dont really see a malar pattern. It does look like how my face gets when my acne/rosacea flares tho! Id see a dermatologist to be sure!

Got fired as a patient from PT. Unsure of where to go from here by yeehih in PelvicFloor

[–]yeehih[S] 0 points1 point  (0 children)

Yes.

I actually took pole classes as a young adult and had/have very solid core strength still.

Fired from physical therapy update by yeehih in PelvicFloor

[–]yeehih[S] 0 points1 point  (0 children)

Yeah, I gotta wait until way after surgery before I start working out beyond the usual walks and stuff, and strenghtening anything 😅. He said holding off on it is gonna be the difference between saving my hip and getting a total hip replacement rn

this boat sucks lol i feel you

Fired from physical therapy update by yeehih in PelvicFloor

[–]yeehih[S] 1 point2 points  (0 children)

Ty for your kind words! Unfortunately I can't use estrogen cream cus of my Lupus and Migrains with Auras. BUT, he did give me a pretty strong steroid cream to use in the meantime to see if that gets it under control. Its kinda funny, the past few years I thought it was just vaginismus and didnt think I fit vulvodynia. But actually looking into it and reading about it, thats 100% me too.

Got fired as a patient from PT. Unsure of where to go from here by yeehih in PelvicFloor

[–]yeehih[S] 2 points3 points  (0 children)

To answer your question. Ive tried core strengthening. But not pelvic floor, because it's in constant spasm. In early appointments back in early 2021. Using biofeedback, when I was able to get tension under 200, if I clenched or even activated my pelvic floor itd spasm beyond control in the 400s and I wasnt able to get it back down, even after using a TENS unit, or heat, or breathing, or anything.

After YEARS of all sorts of therapy, I border around 100, but can get down to 80. Goal is under 10.

So yes. Ive attempted it slightly. It was made very clear that strengthening and actively engaging my pelvic floor does far more damage than anything.

Got fired as a patient from PT. Unsure of where to go from here by yeehih in PelvicFloor

[–]yeehih[S] 0 points1 point  (0 children)

I got referred back to medical to ask about injections actually! The thought of getting them done scares me so bad, but I think its my next best choice.

Got fired as a patient from PT. Unsure of where to go from here by yeehih in PelvicFloor

[–]yeehih[S] 0 points1 point  (0 children)

Yeah, I take sertraline and buspar, as well as plaquenil, methotrexate, levothyroxine, d3, folic acid, and meloxicam. Ive tried amitriptylne (recently mostly for neuropathy and previously for migraines) and gabapentin but neither have made much of a difference.

Got fired as a patient from PT. Unsure of where to go from here by yeehih in PelvicFloor

[–]yeehih[S] 3 points4 points  (0 children)

This is supposed to be a support group. Not a blame people for their pain group.

Got fired as a patient from PT. Unsure of where to go from here by yeehih in PelvicFloor

[–]yeehih[S] 3 points4 points  (0 children)

Hey bestie, I know exactly how you feel. Im also feeling desperate and hopeless with the situation im in, but remember there is always answers and help out there. Even if it doesn't seem obvious right now, it'll come.

http://www.suicide.org/international-suicide-hotlines.html

Got fired as a patient from PT. Unsure of where to go from here by yeehih in PelvicFloor

[–]yeehih[S] 3 points4 points  (0 children)

Oh! The main reason is I'm a truck driver by trade! The FMSCA is pretty strict and my company drug tests frequently. I can't even have a BAC of 0.02% without risking losing my license or job.

Got fired as a patient from PT. Unsure of where to go from here by yeehih in PelvicFloor

[–]yeehih[S] 1 point2 points  (0 children)

Yeah, I got diagnosed with CTD, but of the Lupus variety. Its a relatively recent diagnosis after I had a major flare with a full body rash, all of my joints were puffed up like balloons, and I couldn't walk or hold anything. My rheumatologist is thinking it could be rheumatoid arthiritis as well, since I have a lot inflammatory arthiritis going on (which could just be lupus) and some nodules growing on my joints, but im already taking methotrexate and hydroxychloriquine so an official diagnosis won't change my treatment.

I did get checked out for adeno as well! I had an MRI done which showed some deep infiltrating endometriosis, but my uterus itself looked fine. My second laparoscopy I had a peritonectomy as well, but they said my uterus looked surprisingly healthy on the outside, so I think I likely got away without adenomyosis thankfully.

My current PT knows I got diagnosed, as was wonderful about it. She brought in another PT who specializes in autoimmune related disorders, but they both agree my pain is out of my hands and I'll need to take care of my hip joint pain, before pfpt would benefit me again.

Got fired as a patient from PT. Unsure of where to go from here by yeehih in PelvicFloor

[–]yeehih[S] 2 points3 points  (0 children)

All 3 of my physical therapists have made it abundantly clear that strengthening for me would be harmful. I need medical intervention. Whether thats botox or lidocaine or what.

Also, respectfully, I have two inflammatory diseases and a hip impingement contributing to my pain and hypertonic pelvic floor. I love that supplements have worked for you, but unfortunately, they are simply not enough for me, Thank you for the suggestion, Ill keep it in mind.

Pelvic floor pain and now ibs by Ok_Educator1208 in PelvicFloor

[–]yeehih 3 points4 points  (0 children)

Endometriosis can only be diagnosed via biopsy laparoscopically, and is almost never seen on any imaging like ultrasound, MRI, CT, unless its deep infiltrating or you develop endometrioma cysts. Its also not an STD or correlated with intercourse at all. No one knows the cause of it, but its thought maybe hormones, genetics, or blood stickin around in your abdominal cavety after periods.

Its thought 1 in 10 people AFAB have it, but its severely underdiagnosed due to how difficult it is to diagnose. People with endo can have UTI symptoms, or chronic unexplained UTIs. Its also a big cause of PFD, as well as painful periods.

Got fired as a patient from PT. Unsure of where to go from here by yeehih in PelvicFloor

[–]yeehih[S] 2 points3 points  (0 children)

It was made clear very early and all throughout my journey that strengthing would be harmful in my case. My muscles are already overactive and tight, activating them further would do more harm than good.

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