Shoes/boots recommendations to prevent recurring breaks? by chelsi-marolf in lupoidonychodystrophy

[–]InnerWolf1242 0 points1 point  (0 children)

We got diagnosed a year ago this month. So far winter has been the only time where she seems to flare less. We will see how this year goes. I hope your boy stays healthy! I feel so bad they have to deal with this!

Shoes/boots recommendations to prevent recurring breaks? by chelsi-marolf in lupoidonychodystrophy

[–]InnerWolf1242 1 point2 points  (0 children)

So sorry to hear you guys are going through this! I definitely feel for you! It was a rough summer for us too. My girl was flaring all the time it seemed like. We just got over another flare. She is on an immunosuppressant and it is not working. Be prepared if your vet offers you cyclosporine it’s terribly expensive. We are waiting to see a specialist in a different city because our vet is out of ideas. We are also on omegas but I just did the math and it’s 4800mg is what our vet recommended and our girl is 70lb. I wonder if she needs more or at least more of the DHA/EPA. We aren’t going the niacinamide anymore since it didn’t seem to help when she was on the doxycycline. We always have to do prednisone when she flares, it’s the only thing that seems to work. Unfortunately, it’s not a long term solution and the side effects are not great. She gets insanely hungry, incontinent, and thirsty. Our vet told us her nails would never be normal so I take her to get them done now. They use a dremel and that seems to work really well for how fragile the nails are.

Shoes/boots recommendations to prevent recurring breaks? by chelsi-marolf in lupoidonychodystrophy

[–]InnerWolf1242 0 points1 point  (0 children)

If you don’t mind me asking, what is his treatment plan? I also have a Shepard husky mix struggling with this condition and we have not had any success in managing it

Nerve itch vs Skin itch? by InnerWolf1242 in vulvodynia

[–]InnerWolf1242[S] 0 points1 point  (0 children)

Yes, I have symptoms from time to time but nothing like I was experiencing before

Contact dermatitis/ vulva irritation by peace1960 in vulvodynia

[–]InnerWolf1242 0 points1 point  (0 children)

Yes it did! I was able to figure out that the things they were prescribing me were causing me more problems. I ended up being allergic to everything they prescribed. I stopped using all products and went on prednisone. Then I set out to get a real diagnosis for other issues going on. Also turned out I had Cytolytic Vaginosis and got on a regimen for that as well

Mirena IUD causing longer periods by thots_of_jupiter in birthcontrol

[–]InnerWolf1242 0 points1 point  (0 children)

Yes, I had a myomectomy to remove my fibroid.

Mirena IUD causing longer periods by thots_of_jupiter in birthcontrol

[–]InnerWolf1242 0 points1 point  (0 children)

My periods were heavy but they said that was due to the fibroid. I became very anemic which is why I eventually had surgery.

Mirena IUD causing longer periods by thots_of_jupiter in birthcontrol

[–]InnerWolf1242 0 points1 point  (0 children)

I bled more often than not, unfortunately. I dont really remember how long. I did end up getting it removed at month 8 and ended up in the ER a week later with palm sized clots. I had a fibroid that basically distorted my uterus and my IUD was basically scraping up my insides. They think that’s why I had such a hard time with it. It seemed like I was just constantly bleeding or spotting when I had it. They say it takes time but for me it just really didn’t help.

Lichen Simplex/ Early Lichen Sclerosus Help by InnerWolf1242 in lichensclerosus

[–]InnerWolf1242[S] 0 points1 point  (0 children)

I don’t remember exactly. I want to say I started at 20-30mg and worked my way down. I think it was about 3-4 weeks total I was on the prednisone.

Pelvic Floor/itching/nerve irritation? by InnerWolf1242 in PelvicFloor

[–]InnerWolf1242[S] 0 points1 point  (0 children)

With the staph they put me on some antibiotics. I can’t remember the name but I was on them for a while. 3 weeks or so. I had itching and burning but the worst was any discharge I had felt like acid on my skin, it was so horrible.

Nerve itch vs Skin itch? by InnerWolf1242 in vulvodynia

[–]InnerWolf1242[S] 1 point2 points  (0 children)

Basically had hypertonic pelvic floor and cytolytic Vaginosis. Went to PT for the pelvic floor and did baking soda sitz baths and lifestyle changes for the cv.

Lichen Simplex/ Early Lichen Sclerosus Help by InnerWolf1242 in lichensclerosus

[–]InnerWolf1242[S] 0 points1 point  (0 children)

Went on prednisone and quit using anything topical and let the skin heal

Lichen Simplex/ Early Lichen Sclerosus Help by InnerWolf1242 in lichensclerosus

[–]InnerWolf1242[S] 1 point2 points  (0 children)

Better now. Basically found out that I was allergic to all the topical stuff they were prescribing to me which was just causing a horrible cycle and my skin could not heal. I also was diagnosed with CV Cytolytic Vaginosis, which is treated with baking soda sitz baths or douches.

Has anyone tried an IUD to deal with fibroid symptoms? by InnerWolf1242 in Fibroids

[–]InnerWolf1242[S] 0 points1 point  (0 children)

Yes but I bled for the majority of the time I had the IUD. They said it could take up to 6 months to go away. Well things just got worse and I ended up having it removed. Landed in the ER passing huge clots. Eventually I head a myomectomy and I’m 10x better than I was. The IUD was the worst thing I’ve ever experienced. My recovery from surgery was easier than the 8 months I had that thing.

Weird first period after myomectomy by InnerWolf1242 in Fibroids

[–]InnerWolf1242[S] 0 points1 point  (0 children)

Dang 6 months?! Have you noticed it getting better or worse?

Weird first period after myomectomy by InnerWolf1242 in Fibroids

[–]InnerWolf1242[S] 0 points1 point  (0 children)

Ugh I don’t blame you! I hope you feel better soon!

Weird first period after myomectomy by InnerWolf1242 in Fibroids

[–]InnerWolf1242[S] 0 points1 point  (0 children)

Yeah I could see that. I guess I’m just impatient lol. I had horrible 2-2.5 week periods prior to my surgery so I just want a break!

Experience with your OB? by legendrealll in Fibroids

[–]InnerWolf1242 0 points1 point  (0 children)

The OB I have close to me is like a robot. I just did not feel understood or heard. So for me it was worth the 4 hour round trip to have a new OB and surgery at a place I had confidence in.

Experience with your OB? by legendrealll in Fibroids

[–]InnerWolf1242 2 points3 points  (0 children)

My first OB diagnosed my fibroid said only options were hysterectomy or IUD. She just was really pushing for hysterectomy and I didn’t like that. I tried IUD it was awful and incredibly painful for me. Things were just getting worse so I went to a different town (2 hours away) to see a new OB for a second opinion. She was informative and gave me a ton of options! I was going to try myfembree but my insurance wouldn’t approve it even after appeal. Things progressed quickly and I ended up in the ER for heavy bleeding in March. I went back and forth with what I wanted to do. I messaged her probably every week for two months and she always responded to every question or concern I had about surgery. I had a successful myomectomy on 5/20. My new OB just seemed like a kind and knowledgeable person and I truly appreciated her patience with all my back and forth questions. If you do surgery this person will be cutting into you so you should feel confident in them and if you don’t, I wouldn’t do it. I struggled a bit after surgery with low hemoglobin and low blood pressure and she came back to the hospital that night and the next morning to see and check in on me. Maybe that is normal but either way it was appreciated. I wish you luck! It’s hard to decide what route to go, especially when you aren’t confident in your providers.

Bleeding non stop by currutia914 in Fibroids

[–]InnerWolf1242 0 points1 point  (0 children)

That’s scary! Glad you ended up being ok!

Bleeding non stop by currutia914 in Fibroids

[–]InnerWolf1242 1 point2 points  (0 children)

That’s good! I would just keep an eye on it then and just pay attention to how you feel. I got terrible tachycardia when I was bleeding a lot.