Pots And Menopause

[Science girl]

Hi there,

Hey I was just wondering if anyone knows if dysautonomia gets better after menopause? Since it gets worse often at menstration and is linked to endometriosis i wondered if it resolved sometimes.

[arizona girl]

I don't know but I am hoping! PCOS and endo are suppose to improve after menopause. I've now been waiting ten years for that to happen. Maybe just maybe I'm starting to move in that direction, my fsh is now 13. I've had some irregular cycles, but I've always had them to some degree. No hot flashes or night sweats. Have had night sweats on and off for decades and now know they usually mean I have an infection on board. Haven't had those lately either. I hope I'm one of those people who it just stops with out a whole lot of symptoms. Wouldn't that be nice for a change of place.

If I could get rid of some of my pain triggers through menopause that would be lovely. So, here's hoping!

[Science girl]

Totally. It may be a ways off but if my endo is really bad maybe I could get a hysterectomy. I was hoping to find people who have found some relief after menopause and this would be a good reason to pursue this surgery. I always thought it better to keep things as normal possible but if it helps both endo and POTS then that would be great.

[ukwildcat]

At a doctors appointment recently the topic of menopause came up, again. I have asked this question before to other doctors over the years. I said that since I have many of the symptoms of menopause maybe it wouldn't be as bad for me as it is for women that are having these symptoms for the first time. The doctor said that POTS symptoms many times get worse during and after menopause. I have a really hard time with pots symptoms before, during and right after my period. So I was very sad to hear this news, even though doctors have told me this before. I have always hoped that after menopause, I would have some hope of feeling better.

[corina]

I was diagnosed with early menopause in my early 30's. It was thought to be the reason I had difficulties getting pregnant with our second son (I needed hormones to get pregnant). I wasn't aware of POTS at that time though had been having problems all my liffe. My gp wanted to do some bloodwork over the years to see how it went and after a few years it turned out that I wasn't in menopause anymore, in fact my bloodwork came back normal and when I asked him if that happened to other women he said he hadn't has this happen before. As I was on mirena it didn't really matter to me, I just added it to all my other unexplained medical issues. About two years ago my gp told me that I now was through menopause but as I'm still on the mirena I hadn't noticed. It hasn't cured my dysautonomia though. I like to add that the mirena stopped my period which was a huge blessing!

[Science girl]

Why was it a blessing to stop having periods? Did you have endometriosis? I actually did my masters degree on early menopause. Sounds like you may of had amenorrhea (absence of menstration). This can happen for a load of reasons.

I guess it seems that if periods are an extra painful experience then at least that's gone after menopause. Sorry to hear it doesn't help the POTS.

[corina]

Science girl, my periods were (mostly) really heavy and very unpredictable. I could go from 10 dyas in a row, then nothing for 3 days and start again. The longest period took about 6 weeks (though not as heavy). There was no pattern at all. I think hormones are playing a big role in my dysautonomia. That's interesting that you did your master on early menopause. It runs in families doesn't it? My mom had early menopause too (though hers wasn't magically cured after a few years )

[bebe127]

I've had Mirena for about seven years (changed it out at 5) and haven't had a period except for a bit of spotting now and then. I concur with Corina, it is a blessing for me as well. I feel it is a blessing because neither my husband nor I have to deal with any of it. No feminine products, no mess, no fuss, etc. I am 43 and not in early menopause (far from it from what the dr. says) and I still have symptoms. Don't know about running in families as my mother and maternal grandmother both had hysto's early on. I keep hoping for menopause, I should think that it can't be any worse than what I am experiencing anyway

[Science girl]

Yes early menopause runs in families. I did a masters in genetics and molecular biology so I was research a genetic cause for it. We only found a mutation linked to those who are very young. The youngest was only 18 and the others with this mutation were around 20. We were looking at the glycoprotein inhibin which is part of the transforming growth factor family.

[sue1234]

My POTS started in the throes of perimenopause. About three years ago, I actually made it a whole year without a period, so my doctor checked my hormones and they were all high. I was told I was officially in menopause. And then, a couple of months later I had a period! So, another year and a half go by with no period, and once again elevated FSH, so NOW officially in menopause.

...until a few months later, I have another period. None of the doctors can explain why I have a period every 1.5 years, even with my FSH being in the 90s.

The only thing that might explain the last one was I had been putting freshly ground flaxseed in my morning smoothie for a month, and then one day I got a fever and felt achy. I thought I had the flu. But after two days like that, I began my period. I think the phytoestrogenic properties of the flaxseed actually gave me a period.

Anyway, I don't think finally reaching menopause has helped the POTS.

Now that I think about it, with a couple of us showing via labs that we were in meno, but not really, I wonder if there is something up with the pituitary?

[corina]

Sue I've been checked on that, was suspected first and then it came back negative.

[blueskies]

I'm 57. At 47 pots symptoms got worse. Although no official diagnosis of peri-menopause my age at the time certainly supports it.(Actually, it just came back to me that a few years before I was showing elevated FSH levels and told I was menopausal but I was in my early 40s then and turns out those tests were either wrong or my body was just weird. (I think my body is weird because I've also been blood tested for anaemia one month and iron levels were so low I qualified to have the pill camera test for gastro system for free (It cost about 2,000 dollars a test in Australia then unless patient was very anaemic -- if very anemic the test was paid for by govt.)But suspicious that my body was not always telling the truth when it comes to blood tests I asked for another blood test just before I was scheduled for the test and I was no longer anaemic. (Weird I know, but gut instinct is pretty dependable, at least for me).

Anyway, I believe that the menopausal transition was a big factor in symptoms getting so much worse that at age nearly 50 I was diagnosed with POTS. At 51 it was official, I was post-menopausal. Very elevated FSH levels (although I'd had a light period a few weeks before??). At first I was dealing with hot flushes without the sweating. I had lost ability to sweat, although 4 years ago ability to sweat came back and now I can sweat a river and do so many times a day.. All symptoms got worse with menopause. Some have now eased off a bit, some have got worse but my hope that I'd get better once the menopause transition was finished for me is pretty much dashed.

I once had a conversation with a pots person on the old pots site that shut down virtually overnight -- can't remember it's name but it was very popular. Anyway, this patient was in her 40s and had Dr Grubb as her pots doc. She was doing really well then but he did warn her that she could see an increase in symptoms once again when her menopause transition started. I fully believed my symptom increase was menopause related but my hopes that when I was finally menopausal that my symptoms would go away did not eventuate.

At one point I went to a public hospital menopause clinic and saw a very good specialist there. She prescribed livial for menopausal symptoms (synthetic form of hormone replacement that is different from traditional ones) that was only available in Europe and Australia that I knew of. I did so well on it for 2 months. Full of life and a lot of my symptoms seemed to go into remission. However I put on about 30 pounds on it in just the two months I was on it so I had to be taken off it as it's not good to go through menopause too overweight. Unfortunately I never did lose those 30 pounds. I tried but it's like the livial stuffed with my weight for good (as have a few other meds). Symptom wise it was good for me for pots but weight wise I just could not continue on it as I kept on gaining weight. Then I tried the traditional hrt / hr medication and found that although hot sweats/flashes improved nothing else did and I believed they made migraine worse and I felt kind of nauseous on them. So, no more hormone treatment for me.

Although if my sweating problem does not calm down this coming winter (been a hot hot summer in Aus) I'm definitely off to see an endrocronologist. I just can't stand this excessive sweating. When I go out for more than a walk to the shops I often take a change of clothes because I'll end up looking like I've been rained on.

blue

[Science girl]

Hi Blue, thanks for sharing your insights into menopause and POTS. Sorry you are having a rough time with the transition. Hoping and praying for you that your body can adjust to your new normal and the symptoms will dissipate. Stay strong. Science girl