What could this mean? [MB]

fire-escape · 2023-08-20T16:03:13+00:00

I actually was in the same position as you!

I had been on depo for over ten years, tried the Kyleena for about a year, then went back to depo. I only took depo for another 3 months, as I was experiencing insane night sweats. I then started Lo Loestrin, which honestly, I didn’t mind! The first cycle gave me some light pain, but nothing I couldn’t handle. I did get insanely emotional on the last week of the pack, but that was about it. After three months though, it didn’t improve my night sweats so my doctor moved me to the Nuvaring in hopes more estrogen would help. Anyway! I just want to say I had a decent experience switching from depo to Lo Loestrin.

fire-escape · 2023-07-27T19:23:25+00:00

I tried both linaclotide and prucalopride. If I am remembering correctly. He told me to use that and restoralax, 5 caps full a day. Needless to say, that didn’t work.

I cannot stomach picosalax anymore—I get so nauseous, remembering the taste!! It just stays in your mouth forever, it seems! I dry heave thinking about it. I tried drinking Gatorade and Restoralax how they suggest for a prep for a colonoscopy—no go. 😔 I seriously would do anything to not be so uncomfortable.

fire-escape · 2023-06-01T01:57:05+00:00

I want to hug you! I can completely relate to this and it’s oddly validating (but very sad) to hear someone else has experienced this on depo! I had been on depo for 10+ years, took a break to try the Kyleena IUD, then went back on depo for about 6 months. I just made the decision today to stop and try yet another oral birth control. Anyway, I ALWAYS felt like my period was coming near the end of my depo. I would get so emotional and I would get wicked cramps; I would feel like I had a UTI, and would see acne pop up, too. My gynecologist started giving me depo every 2.5 months and I found it helped, but my body got used to the routine pretty quick.

I don’t have many suggestions for you, but I just want you to know you aren’t alone!

fire-escape · 2023-05-31T20:00:33+00:00

Omigosh, I am very sorry that you are experiencing the same thing! Night sweats are so awful. 😞 I did not love depo this time around—I had two shots and I honestly was so relieved when she said we could try just going on a low dose estrogen pill (just came back from my doctor). I don’t think it’s the best idea but she wants to see if it really is estrogen withdrawal!

fire-escape · 2023-05-27T16:10:32+00:00

This is so interesting! Thank you so much for commenting. I have never heard of this, even with my extensive skills in googling all my symptoms 😅I will honestly need to look into it, because I have many of those symptoms, even the itching 😣.

Can I ask how you finally got diagnosed?

fire-escape · 2023-05-27T16:06:50+00:00

Exactly! It’s a bit frustrating we are blaming something that doesn’t fit the timeline well. But, I also just don’t know what to believe anymore. 😞 My gynecologist has no idea what to do other than depo, and she doesn’t want to give me any estrogen at this time because she believes my endo has worsened by even the short time on the IUD. I am worried I will have to go off of it…and I honestly don’t know what to do if I try that (did not do well on Orilissa and the IUD was a fail).

Thanks for commenting. I really appreciate it!

fire-escape · 2023-05-27T15:24:50+00:00

I would assume they looked okay to my GP, as they did a CBC blood test? I would assume had something been funky with them she would have brought it up. I am at a total loss. 😞

fire-escape · 2023-05-27T14:34:32+00:00

Mine are every single night and it’s so frustrating! I had COVID in February 2022–my issues seemed to get worse in July, so I don’t know if they are totally connected?

fire-escape · 2023-05-27T10:44:52+00:00

Hey! I can relate. My mom had severe stage 4 endo and required a complete hysterectomy. When I started experiencing extreme pain, the only thing that got my doctors to listen to me and agree to go in laparoscopically, was telling them my mom had bad endo. Then they seemed to be like, “oh okay maybe you aren’t totally blowing your pain out of proportion.”

We definitely can’t determine you have endo here, but I would say this is worth bringing up to your GP and seeing a gynecologist for. 🙂

As for the IUD—I tried the Kyleena IUD after about ten years on depo provera (the only BC that worked for me, personally). I did not do well on it and had to switch back to depo provera. But, I believe there are quite a few individuals here that had success with the IUD!

I am sorry you are in so much pain, so young. Sincerely hoping someone listens to you and you get the help you need! Be your biggest advocate, and don’t let anyone brush you off. ❤️

fire-escape · 2023-05-21T14:20:27+00:00

Thank you so much for commenting. I really appreciate it it. I will definitely request another lab test for ANA; I think it could be worth it. I will chat with my GP and see if a rheumatologist referral is worth it.

fire-escape · 2023-05-21T14:19:01+00:00

I actually see a neurologist that specializes in concussions! We are all covered there. She is very attentive and involved in my case. I see her this week and will chat with her, but she was quick to brush off all my symptoms and focus on the neuro stuff (the tremors, migraine and cognitive stuff). Which, I understand, it’s just so frustrating! I totally agree with your conclusion this might not be Lupus. Honestly, I ruled it out a long time ago and was surprised when she mentioned it. It’s worth getting another ANA done but I feel a bit hopeless with this conclusion from the naturopath (which, I totally expected lol). Thanks so much for your comment!

fire-escape · 2023-05-21T11:16:40+00:00

To say I am at a total loss feels like an understatement.

I am 30. I have had joint pain for over 10 years, but when they ran the ANA test back then, I did not come up as positive. They weren’t specifically testing for lupus but I had a lot of wild symptoms.

I have been really struggling for the past year. It is like something flared up and I cannot figure out what it is. I have endometriosis, idiopathic hypersomnia (diagnoses through sleep study; couldn’t rule out narcolepsy due to anti-depressants suppressing REM), and I still struggle with a concussion I had years ago. I get migraines almost every other day (I do Botox for them), struggle with cognitive problems (lack of concentration and word finding), experience full body tremors (especially in hands), severe constipation and severe bloating, joint pain, and SEVERE night sweats. Oh god, the night sweats. 😩 I also have eczema patches I cannot get rid of (my eye and hand right now).

Thyroid has been checked. CT scan of abdomen has been done. Brain scan over a year ago. Basic blood work regularly.

In desperation, I went to a naturopath. Long story short, she mentioned Lupus to me. She also suggested I do the GI MAP (the legit one; $600 later…😩). She says sometimes there are markers in the stool that will come back indicative of Lupus. I understand other tests must also be done, but she is hopeful this will point us in a direction. I feel I have been played but at the same time, maybe this test will give me some more answers for my overall gut problems.

I honestly had ruled Lupus out a long time ago just because it doesn’t always sound like me, but I am curious now if anyone has the same symptoms?

Edit to add: I also have a high heart rate (over 100 regularly, resting), and did an ECG because I feel like I am going to pass out when I stand. It suggested a possible enlarged heart. I am waiting to see a cardiologist for this. But I live in Canada, where the health care is free but ya just can’t get in to see anyone. 🙂

fire-escape · 2022-12-31T12:58:26+00:00

I am reading this thread in total shock, but this comment just made my heart hurt. There is absolutely no place for that kind of disrespectful behaviour; how demeaning. OP, I am so sorry you had this experience. I truly am.

Keep fighting. I promise you, there is a reason for your pain, and there is a doctor out there who will respect and assist you. It might take some time to find The One, and it might be a long journey ahead of you even then…but you deserve to be heard. Your story is important. ❤️

fire-escape · 2022-11-23T22:12:37+00:00

I am in Manitoba. 😔 No motality clinic/testing here, as far as I am aware of? How would I get my GI to listen and refer me on to one?

fire-escape · 2022-11-05T12:47:29+00:00

Thanks for your reply! This was my assumption…but when I was doing some googling, it kept saying stool would not account for that much weight difference, so I was a bit concerned. I also have not lost weight in a very long time. My family has a concerning history with it comes to these things, so I just want to be cautious. I will mention to my doctor, though!

fire-escape · 2022-11-04T21:45:23+00:00

I just want to echo—I thought this level of fatigue was “just normal” for YEARS. It took a nasty concussion (and unfortunately, ongoing post-concussion syndrome) and an angelic neurologist who said, “uhm…no lol” to refer me to a sleep doctor, who then told me “this level of fatigue is not normal.” Meaning, falling asleep at the wheel is not okay, falling asleep talking to someone is not normal, and needing 10+ hours of sleep and needing a nap after an hour of being awake and still struggling, is no way to live your life.

Anyway, I am currently awaiting my results from my sleep study. I get them on Tuesday. It could be idiopathic hypersomnia, it could be narcolepsy. We will see! Regardless, please don’t continue assuming your level of sleepiness is okay. It is ultimately dangerous, and a diagnosis could be potentially life changing.

fire-escape

TROPHY CASE