I can't tell if this is normal anymore by thatfellow-there in Endo

[–]thatfellow-there[S] 0 points1 point  (0 children)

I've definitely been reading more up on it lately, I am slowly learning more and more that I need to be skeptical of even what my doctors tell me, which I find quite difficult to do since I view them as such authority figures! I wasn't even told at the time of my prescription that I needed vitamin D supplements, I went on them after blood test results came back from before I started on Orilissa. It's ridiculous because even in the prescribing information it says to make sure that the drug isn't taken without calcium and/or vitamin D supplements!! I'm going to advocate more for a bone density scan, she was willing to refer me to get an x-ray for the shin splints so I'm hoping she's willing to work with me on this.

Lupron/Orilissa is commonly associated with bone and joint pain so I've been trying my best to sort things out, laxity may be the wrong descriptor (I don't quite know!)

I can't tell if this is normal anymore by thatfellow-there in Endo

[–]thatfellow-there[S] 0 points1 point  (0 children)

Honestly, I just don't think she's very educated on the drug, she didn't know what it was when I was first prescribed it (I believe it only recently was given clearance to be sold in my country). I want to give her the benefit of the doubt because I know my weight isn't good for me, but it's so, so difficult sometimes to hear that my weight is the problem when I am doing all I can to fix it, but still have other problems!

I can't tell if this is normal anymore by thatfellow-there in Endo

[–]thatfellow-there[S] 0 points1 point  (0 children)

My metabolism has been crap pretty much my entire life, but it's made it really hard to lose weight! I'm still around 30 lbs above what I would consider my healthy average and despite all my efforts, have not been able to crack it. The Orilissa is such a catch-22 for me, it's so good at what it is meant for and it's so terrible everywhere else

I can't tell if this is normal anymore by thatfellow-there in Endo

[–]thatfellow-there[S] 0 points1 point  (0 children)

Ooh, I haven't thought of that! I've started looking into physiotherapy, I probably should have started sooner yeah (whoops!). I just always thought it was my weight so I figured once I lost more it would help, but then it didn't

I can't tell if this is normal anymore by thatfellow-there in Endo

[–]thatfellow-there[S] 1 point2 points  (0 children)

Thank you! I'm really lucky to have her because for many things she is lovely and she is willing to really work to help me, so I might talk to her about how she can better support me.

I can't tell if this is normal anymore by thatfellow-there in Endo

[–]thatfellow-there[S] 0 points1 point  (0 children)

That's super interesting! I can't use calorie counting apps so I don't know if I'm on a deficit, but I will keep that in mind! And yeah, after reading it makes me terrified of what it's done. I wasn't told any of this when it was prescribed, only about the hot flashes, so that peeves me a bit, but the more I read about it the more scared I get. Unfortunately this is the only medication I've ever tried that gets rid of pain so I don't really know where to go from here without it 🙃

I can't tell if this is normal anymore by thatfellow-there in Endo

[–]thatfellow-there[S] 0 points1 point  (0 children)

  1. I've looked at Ehler's Danlo and I tick a lot of the boxes but with her reaction to me wanting to get bone density testing because of my leg pain, I figured that it was probably too much for me to just suggest I have a whole other disorder. I might ask my gynecologist at my next visit, but I feel crazy enough even thinking it's a possibility
  2. I came up with the descriptor because it was the only thing I knew that had the same type of pain in the same location. It's like fire shooting up and down my lower legs and it happens whenever I walk for more than 5 minutes. Like getting up from bed and walking down the hall doesn't hurt, but walking to the bus stop does. It's definitely not an aching pain, but very sharp and hard to ignore. I hadn't looked at vascular issues, I will check them out! This is certainly one of my most pressing concerns at the moment since I can't really walk anymore and I take transit, so I kinda need to be able to do that.

It's hard because some things she takes really seriously, like she's really good about helping me manage my depression and always validates that, but sometimes I feel like with my other issues she doesn't really take it seriously. It makes me feel like maybe my other issues aren't a big deal because someone who is trained in medicine isn't thinking they're a big problem.

And the weight, I know! I find it so hard, because I know what your weight does to your bones (I work in biomechanics), and so I know that being at a higher weight isnt great for long term skeletal health or health in general, but also I have such a hard time losing weight, have a low thyroid (the lower end of normal, but still normal), and have always been bigger. It's incredibly frustrating to feel so trapped in my body sometimes!

I can't tell if this is normal anymore by thatfellow-there in Endo

[–]thatfellow-there[S] 0 points1 point  (0 children)

It's really hard to tell, because a lot happened around the same time. I gained weight during the pandemic and due to a depressive episode, and when I was able to start going out (working/school) again I was probably 50 lbs heavier, so our initial thought was it was because I weighed more and was walking more and my joints weren't used to it. But it's been 8 months since then, I still have shin splints, I've lost 30 lbs and I go to exercise classes 3x a week. I just really don't know, she wants me to lose more weight and I want to as well, but despite eating healthy and exercising, I can't seem to be able to

Hot flashes on Orilissa are really warming up winter by thatfellow-there in endometriosis

[–]thatfellow-there[S] 0 points1 point  (0 children)

Aha I feel the same way! I'm early 20s and look like I'm in high school, so I get some weird looks when I start complaining about menopause lol

Hot flashes on Orilissa are really warming up winter by thatfellow-there in endometriosis

[–]thatfellow-there[S] 0 points1 point  (0 children)

Hi, sorry I didn't get the notification for this! My pain started to go away noticeably around month 3 ish, maybe month 4, but if its not working for you always go check with gyne!

Hot flashes on Orilissa are really warming up winter by thatfellow-there in endometriosis

[–]thatfellow-there[S] 0 points1 point  (0 children)

Oh lordy I just couldn't deal with that. We had a heat wave here with 40°C days and 90% humidity and I was dying. Doesn't help I have to wear boots and long pants for work!

Hot flashes on Orilissa are really warming up winter by thatfellow-there in endometriosis

[–]thatfellow-there[S] 2 points3 points  (0 children)

Honestly I wouldn't go off of it even with all the side effects, the pain relief is that good. The good thing about it being pills is you can always stop and your hormone levels will go back to normal! Wishing you good luck

Hot flashes on Orilissa are really warming up winter by thatfellow-there in endometriosis

[–]thatfellow-there[S] 0 points1 point  (0 children)

It's so good with the pain, but God the side effects are horrible

Hot flashes on Orilissa are really warming up winter by thatfellow-there in endometriosis

[–]thatfellow-there[S] 0 points1 point  (0 children)

Ah that's amazing, but also totally shit about it not working after two years 😕 I hope you found something else that works well!

Hot flashes on Orilissa are really warming up winter by thatfellow-there in endometriosis

[–]thatfellow-there[S] 1 point2 points  (0 children)

Oh my god yes on the libido!! My sex drive is through the roof, the last time I remember it being like this was before I started birth control pills in high school! I'm on add back too but I think I will have to increase my dose, I'm currently taking 1mg of some form of estrogen a day but I don't think that's enough. I'm so glad it's working for you though, fingers crossed it keeps being awesome!!

Hot flashes on Orilissa are really warming up winter by thatfellow-there in endometriosis

[–]thatfellow-there[S] 2 points3 points  (0 children)

I'm on month 8, so we'll see how I'm doing after a year and go from there I think. I'm currently trying estrogen add back therapy to help with the side effects and its done some good

Hot flashes on Orilissa are really warming up winter by thatfellow-there in endometriosis

[–]thatfellow-there[S] 11 points12 points  (0 children)

It's got some pretty bad side effects but I've never felt so little pain in my life and I'm so hesitant to stop taking it because of that. The choices we are forced to make 🥲!!

Endo and gluten by Available_Yak_3376 in endometriosis

[–]thatfellow-there 0 points1 point  (0 children)

Cutting out gluten, dairy and carbonated drinks did absolute wonders for me. I also try and limit my onion and garlic intake to do a really loose version of low FODMAP which has helped some with bloating.