BlsdMama Posted January 9, 2022 Share Posted January 9, 2022 I went from being very regular to full stop. I didn’t have a period for about seven months except one episode of spotting for two days. I’m 44. Part of me wonders if this is due to the disease - ALS is hyper metabolic. It consumes so voraciously that you’ll often be exceedingly low in vitamins, mineral, etc. If I don’t supplement protein, my hair falls out. More recently, my blood tests indicate a healthier me - a return to normal MCV, normal iron, normal B12, normal liver function. This is great but… My period returned this last week, completely normal, five days, etc.?! Part of me is pleased, if it returned due to increased nutritional status, that’sa good thing. The other part of me? Ugh. It is so hard to do the extra cleaning and work with failing limbs. So I wondered - did anyone else have a menopause that was just a full STOP then a random period? I’d really be so grateful to be done with all that, kwim? 2 Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted January 9, 2022 Share Posted January 9, 2022 My mother did. Nothing for several years then a suprise while out on a holiday and unprepared 1 Quote Link to comment Share on other sites More sharing options...
LMD Posted January 9, 2022 Share Posted January 9, 2022 Well, kind of? I'm undergoing investigations for early menopause. My cycle stopped for about 18 months when I was 36, then I had one period randomly, then nothing for 6 months again. My endocrinologist thinks it's a prolactinoma which is apparently very common. There are so many things that can stop/start it. The incredible stress you've had over the last year could certainly contribute. 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted January 9, 2022 Share Posted January 9, 2022 Do you have a bidet? One can tilt one’s pelvis and use it for other cleaning, iykwim. 1 Quote Link to comment Share on other sites More sharing options...
EKS Posted January 9, 2022 Share Posted January 9, 2022 Did you recently get a covid vaccine? 1 1 Quote Link to comment Share on other sites More sharing options...
Cordelia Posted January 9, 2022 Share Posted January 9, 2022 I don't know much about menopause, but I will say that I lost my period for a bit over a year when my celiac disease was undiagnosed and out of control. My body wasn't absorbing the nutrients in my food properly and that caused all kinds of issues. 1 Quote Link to comment Share on other sites More sharing options...
Kassia Posted January 9, 2022 Share Posted January 9, 2022 This didn't happen to me, but it did to many of my friends. They were hopeful that they were done and then...bam, another period and they had to start the clock all over again. I'm sorry about the additional struggles for you. My periods stopped when I was 47 and I assumed it was menopause until last year when my doctor ran some bloodwork and discovered my hypothalamus wasn't working at all - that was what caused my periods to stop and not menopause. My hormone levels aren't menopausal. My gyn was pretty shocked about the lab results and ordered them again and they were even worse. She said I'm a "mystery" which is not what I want to hear from my doctor. 3 Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted January 10, 2022 Author Share Posted January 10, 2022 6 hours ago, prairiewindmomma said: Do you have a bidet? One can tilt one’s pelvis and use it for other cleaning, iykwim. Indeed! I love that thing. 1 Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted January 10, 2022 Author Share Posted January 10, 2022 6 hours ago, EKS said: Did you recently get a covid vaccine? I actually did but it was about two months ago. Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted January 10, 2022 Author Share Posted January 10, 2022 6 hours ago, LMD said: Well, kind of? I'm undergoing investigations for early menopause. My cycle stopped for about 18 months when I was 36, then I had one period randomly, then nothing for 6 months again. My endocrinologist thinks it's a prolactinoma which is apparently very common. There are so many things that can stop/start it. The incredible stress you've had over the last year could certainly contribute. I had to look that up. That is interesting because I had to have imaging done five years ago because my pituitary gland was enlarged. 🤔 1 Quote Link to comment Share on other sites More sharing options...
madteaparty Posted January 10, 2022 Share Posted January 10, 2022 6 hours ago, EKS said: Did you recently get a covid vaccine? I did and I’m convinced it put me in this situation. Quote Link to comment Share on other sites More sharing options...
LMD Posted January 10, 2022 Share Posted January 10, 2022 26 minutes ago, BlsdMama said: I had to look that up. That is interesting because I had to have imaging done five years ago because my pituitary gland was enlarged. 🤔 I had a contrast mri and they still couldn't see it, it’s apparently a micro prolactinoma but seems to be responding to medication so far. A friend of mine has the exact same thing, but hers is bigger so they could see it on an mri and even a ct scan. A key symptom was lots of lactation well after breastfeeding finished. Combined with pcos its just a mess lol Quote Link to comment Share on other sites More sharing options...
Kassia Posted January 10, 2022 Share Posted January 10, 2022 13 hours ago, LMD said: I'm undergoing investigations for early menopause. My cycle stopped for about 18 months when I was 36, then I had one period randomly, then nothing for 6 months again. My endocrinologist thinks it's a prolactinoma which is apparently very common. 6 hours ago, BlsdMama said: I had to look that up. That is interesting because I had to have imaging done five years ago because my pituitary gland was enlarged. 🤔 6 hours ago, LMD said: I had a contrast mri and they still couldn't see it, it’s apparently a micro prolactinoma but seems to be responding to medication so far. A friend of mine has the exact same thing, but hers is bigger so they could see it on an mri and even a ct scan. A key symptom was lots of lactation well after breastfeeding finished. Combined with pcos its just a mess lol My doctors pushed me to have an MRI to look for a pituitary tumor when they figured out that I wasn't actually in menopause and my periods stopped due to hypothalamus dysfunction. They were sure there was a pituitary tumor, but there wasn't. 1 Quote Link to comment Share on other sites More sharing options...
LMD Posted January 10, 2022 Share Posted January 10, 2022 23 minutes ago, Kassia said: My doctors pushed me to have an MRI to look for a pituitary tumor when they figured out that I wasn't actually in menopause and my periods stopped due to hypothalamus dysfunction. They were sure there was a pituitary tumor, but there wasn't. If you don't mind me asking, how did they diagnose hypothalamus dysfunction? Quote Link to comment Share on other sites More sharing options...
Kassia Posted January 10, 2022 Share Posted January 10, 2022 2 hours ago, LMD said: If you don't mind me asking, how did they diagnose hypothalamus dysfunction? Not at all. It was clear from my hormone levels. Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted January 10, 2022 Author Share Posted January 10, 2022 (edited) 9 hours ago, LMD said: I had a contrast mri and they still couldn't see it, it’s apparently a micro prolactinoma but seems to be responding to medication so far. A friend of mine has the exact same thing, but hers is bigger so they could see it on an mri and even a ct scan. A key symptom was lots of lactation well after breastfeeding finished. Combined with pcos its just a mess lol This whole thing is fascinating to me. I mean maybe you know my backstory but maybe you don't. I got the MND diagnosis here, went to Mayo and they said, "Yep, looks like that buuuuut we're going to test you for random antibodies (and any other weird thing that could be mimic) while you're here." So a few months go by and a test for "glycine receptor antibody" comes back as positive. So they rename this Stiff Person Syndrome - PERM. Nasty little disease. So I'm told we've discovered some treatments and they work *or* you don't have it. Did it all and it was extensive. Nothing worked thus the wand was waved and I was told, "Yes, you are the freak few who have the antibody and you look like Stiff Person, and that would make you this crazy unicorn to have PERM but you didn't respond, thus MND, but you're mostly upper motor neuron so you're this other freakish unicorn of PLS (ALS' ugly baby sister). Ba dum dum." In the meantime had to have a PET scan to look for cancer - nope. Had MRIs. Had CT scan. They found that enlargement. Is benign growth. But here's the quacky part is that people have fixed issues with Stiff Person and Myasthenia with thymectomies and the thymus gland is connected to this glycine receptor/SPS. How can people have rare oddities and someone doesn't say, "Hey... NOT a unicorn. Just all of them are logically connected." I SWEAR to you people are so enamored with the concept of unicorn they fail to recognize the thing in front of them is nothing but a darn cow. Because if you google prolactinoma they are also tied with thymus dysfunction. Rant over. So @LMD - what med and what tests have they done? Because I've asked for a thymectomy in the past and been told it's a no go but I'm not above asking again. My neurologist does likely think I have the craziest requests, lol, but we have a good relationship and he finds me amusing. Edited January 10, 2022 by BlsdMama Quote Link to comment Share on other sites More sharing options...
EKS Posted January 10, 2022 Share Posted January 10, 2022 10 hours ago, madteaparty said: I did and I’m convinced it put me in this situation. I had a similar thing happen--all three times! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.