• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Worse or better after menopause?

Aileen

Senior Member
Messages
615
Location
Canada
Just a thought for those of you who are experiencing problems. The vagina has its own microbiome, Perhaps looking into probiotics specifically for "women's health" might be helpful. Not sure which ones would be best to take but might be worth looking into.
 

Victronix

Senior Member
Messages
418
Location
California
I've just started having my first chaotic periods (age 50) and suddenly have been flooded with symptoms (but have not yet gotten to see a gynecologist that's in another week +, so don't know yet for sure what's going on) -- the crushing fatigue, pain in the pelvis like I have a UTI but there is no infection, nausea, anxiety, sleeplessness, etc. I'm sorry to read about how difficult it has been for some on this thread! Amazing what some have endured. I'm just at the very start of this so am appreciating the knowledge . . .
 
Messages
62
Location
Philadelphia
I'm replying to older thread but think this is an important topic. Everyone told me when the perimenopause migraines started that they would go away in menopause and I didn't believe them because nothing else about my health was typical. However, they did finally go away within 2 years menopause - like 100%. So I want to hold out hope for those dealing with migraines, too - if you have them. HRT didn't help one way or the other with migraines. And sinus infections being the hallmark of my ME/CFS - those got worse in menopause and am thinking it's epithelial cells and cilia health not strong in a way they were pre menopause. Any advice on that, I'd be interested in.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
Agree with you @josephine2 my headaches seem to have gone but right from the beginning of going through menopause, I have deteriorated ME wise - it doesn't feel good and I am not sure anymore about future improvement. It's been 3 years and I am still in this deteriorated state and haven't picked up.

My CNS has got worse and I wish I knew how to calm it down. Also, I am getting night sweats during the day and I have never had this before. These sweats during the day are the same slick sweats you get with the night sweat. And the heat that comes with it is quite severe. I don't know what is going on - it's a new thing for me. The sweat is all over the body as well, not just the torso. Never experienced anything like it before. It feels like my body is trying to get rid of something with these sweats.
 

ebethc

Senior Member
Messages
1,901
Sorry to report that perimenopause made everything dramatically worse... My CFS has always been affected by hormonal changes - even smaller ones, so menopause has been rough. The inflammation (joint pain, sinus issues) and fatigue and BRAIN FOG have been killing me... A LONG road, and very hard to work during this time... Financially devastating.

@WoolPippi 's post really resonated w me... I just started pregnenolone this wk and it has had a dramatically positive effect on me - the single best supplement I've ever taken... I think this may be due to it's effect on progesterone creation and steroid hormones that decrease inflammation. I've read a lot about crashes after pregnenolone - and I had a bad experience w DHEA (a little better at first, then worse), so I'm extremely cautious w pregnenolone and not getting my hopes up very high until I have more time w this supplement. However, regardless of whether it works for me, I feel like I have a strong indication of which direction to go in... e.g., if progesterone/steroids are positive for me, then I can experiment w different combos...if preg doesn't pan out, I may try progesterone again ... Last time I tried it, maybe it was too much?? It made me bloated and sleepy... Maybe tiny, tiny doses of steroid hormones? I've tried these in the past... this is definitely something I would need a doctor's advice to work on, but I'm just glad to have a direction to go in after trying a million things only to rule out ~999,995 of them!! (e.g. methylation/genetic protocols, paleo/special diets, etc.. ugh.)

Best of luck and don't give up!
 

Mij

Messages
2,353
Agree with you @josephine2 my headaches seem to have gone but right from the beginning of going through menopause, I have deteriorated ME wise - it doesn't feel good and I am not sure anymore about future improvement. It's been 3 years and I am still in this deteriorated state and haven't picked up.

My CNS has got worse and I wish I knew how to calm it down. Also, I am getting night sweats during the day and I have never had this before. These sweats during the day are the same slick sweats you get with the night sweat. And the heat that comes with it is quite severe. I don't know what is going on - it's a new thing for me. The sweat is all over the body as well, not just the torso. Never experienced anything like it before. It feels like my body is trying to get rid of something with these sweats.

Updating this thread. How are you doing @rosie26
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
IIRC, I got worse during perimenopause, but I was going through a lot of extra stress then (living in damp, cramped temporary accommodation while my house was renovated, and finances were very worrying, also having a battle with a head of department at my uni just as I was coming up to my final exams, losing a computer and files to the damp, etc.) I put on a lot of weight, maybe because eating and drinking too much due to stress, and the extra weight was causing a lot of pain. I too avoided the horse-derived HRT for ethical reasons and instead took a soya phytoestrogen supplement.

After settling back home and losing the excess weight my health improved again, so was similar to before menopause. So I don't know if (peri-)menopause made much or any difference.

As for migraine, I started getting them at age 61 (last year)! :(
 

rosie26

Senior Member
Messages
2,446
Location
NZ
Updating this thread. How are you doing @rosie26
Thanks for asking Mij, I will do an update on my menopause thread and I will link to it from here - sometime. I am still figuring things out - so much going on. I really think the menopause and the ME has combined and triggered my lung problems and I am querying what the doctors have told me. I think it is something different to what they have told me - time will tell and more tests.

I am trying things to see what helps and loads more things to try eventually. Been extremely sick all winter and the warmer weather has helped pick me up some now and trying to get the house slowly all tidied up - such a tip, after not being able to do much at all for months on end. Thanks, hope your doing ok.
 
Messages
17
I am both sorry, and yet at the same time, reassured, to read that other women are having this problem. At least we are in good company. I was beginning to wonder if there may be some terrible new condition affecting me. I haven't been on this forum for a while, and just came back today upon googling "CFS/ME worse after menopause."

I am 54, was diagnosed with CFIDS in 1992, 26 years ago. As described in previous posts and blog, my disease went almost completely into remission thanks to holistic and herbal medicine, especially after I discontinued mainstream treatments (antibiotics for the frequent infections). Over the years I've had my ups and downs, e.g. had a severe flareup after exposure to Black Mold, good days and bad days, but up until recently I was quite strong, even ripped, and on a good day, in better shape than most "normal" people my age.

A couple of years ago I became perimenopausal with weight gain, abdominal bloating, very heavy periods with clots and anemia (suspicion of fibroids), irritability, anxiety, hot flashes and insomnia. About a year ago I began using NOW bioidentical progesterone cream, which helped a lot although the insomnia was bad. I could fall asleep pretty easily, but would wake up 3-4 hours later and not be able to get back to sleep! It was maddening. I need at least 9-10 hours to keep my immunity strong.

I was so exhausted I could barely work (my SSDI was denied back in the 1990s on the basis that, "In Florida you're not Disabled if you can still talk on the phone," which is my current first job, working as a Spiritual Advisor for a Famous Psychic Company whose name cannot be revealed on social media for contractual reasons. I have recently acquired a second job as a writer in order to pay the bills). I began using CBD, which really helped with the insomnia, although ultimately I have found that medical MJ, in the form of cannabutter, works better than anything else.

Well, my LMP was 234 days ago, hurray! It's so nice not to be losing blood. Also, ever since my period stopped, the extra pounds I'd been carrying around the last few years melted away effortlessly. Almost too easily, but hey, I'm not complaining! It's wonderful to be thin again. I felt like I was walking around in a fat lady's body. Only problem is, the weight loss has been accompanied by 2 other phenomena: loss of muscle mass and frequent bowel movements - food just goes right through me. In retrospect, I had this symptom when first diagnosed.

In addition, the fibromyalgia-like pain has gotten much worse, like it was in the beginning. Fortunately the medical MJ helps considerably, but I can only take it before bed, not while I am at work. Also I feel weak, trembly and light-headed like I did back then. Everything is difficult just like it was at first. Taking a shower is strenuous.

Another peculiar thing, I've been battling a Demodex infestation of the face and scalp. Self-diagnosed via observation of life cycle pattern, resistance to usual acne meds (I have never had acne), moderate response to tea tree oil and topical diatomaceous earth, and impressive immediate resolution with ivermectin. In retrospect, I also had this when first diagnosed, but at that time my doctor had referred to the painful red lesions as "viral exanthema," probably coxsackie, in his opinion (which was his favorite theory re: CFIDS). I've taken the first 2 doses per a research protocol I read about and it has cleared up 95% but I've lost so much hair I am nearly bald on the top of my scalp.

Anyway - when I was first diagnosed with CFIDS, before I lost my job due to using up all my sick days, I was struggling to walk up the stairs and heard coworkers whisper, "Wow, Jamie looks like an old lady!" Now I've become that old lady. I am supposed to start my new writing job, in addition to the phone counseling, tomorrow. I hope I will be able to do it. My house is filthy. I was planning to clean the floor tonight but after pulling up weeds, working on my organic veggie garden and wrestling my horses to do their hooves yesterday and today (my days "off"), I am completely exhausted.

So yeah, ladies, if your CFS/ME has gotten worse since beginning menopause, you're not alone. Join the club.
 
Last edited:

digital dog

Senior Member
Messages
646
WoolPippi,
Are you saying that the progesterone made hypothyroidism better? I have hypo and cannot take ANY thyroid meds/supplements. I am 44 and in perimenopause I imagine as missed a couple of periods which have been getting shorter and shorter over the last five years.
I do VERY badly with hormones (severe depression from two contraception pills and HATED the mirena coil)but I have serenity progesterone cream and i'm temped to try a tiny amount out of sheer desperation.
I am so sick of feeling so bloody tired...and fat. What is it with putting on so much weight? I think I'd have to stop eating entirely to lose any.
Any advice would be very much appreciated.
I still get my period but it is hit and miss so wouldnt know when to take the progesterone.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I am so sick of feeling so bloody tired...and fat. What is it with putting on so much weight? I think I'd have to stop eating entirely to lose any.
Have you tried cutting carbohydrates down or almost out? A lot of us seem to lose a lot of weight when we cut those down or out, myself included. I went rapidly from overweight to normal weight, and quite a lot of us have been the same.
 

digital dog

Senior Member
Messages
646
I've tried everything MeSci. Not for weight loss as that is the LEAST of my worries.
When I went carb free, I got very anxious and didn't sleep at all. Couldn't believe it was happening but I treid the diet a few times and very quickly developed insomnia.
I have battled insomnia all my life and I would rather be fat.
Thanks for the tip though. Much appreciated.
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
WoolPippi,
Are you saying that the progesterone made hypothyroidism better? I have hypo and cannot take ANY thyroid meds/supplements. I am 44 and in perimenopause I imagine as missed a couple of periods which have been getting shorter and shorter over the last five years.
I do VERY badly with hormones (severe depression from two contraception pills and HATED the mirena coil)but I have serenity progesterone cream and i'm temped to try a tiny amount out of sheer desperation.
I am so sick of feeling so bloody tired...and fat. What is it with putting on so much weight? I think I'd have to stop eating entirely to lose any.
Any advice would be very much appreciated.
I still get my period but it is hit and miss so wouldnt know when to take the progesterone.
hi, sorry to answer so late.

yes, my thyroid got better with progesteron but it's not a simple cause-effect. My progesteron deficiency fuels my adrenal deficiency (the anti-stress hormone cortisol is made from progesteron)
By fortifying my adrenals -of which progesteron cream was one of the tools I used- my thyroid got normal again.

Progesteron cream, of which you have a good brand, you can use without worries. Just put a small pea size on your inner wrists. If needed you will feel a sense of relief go through your body.
If you do not need it you will probably feel nothing and it will leave your system in 4 to 8 hours.
If you overdose you will feel sleepy and it will leave your system in 4 to 8 hours. (sleepiness occurs because the excess progesteron gets reverted to Pregnenolone, the best sleep hormone there is).

Birth control pills are the worst (hormones) there are. They are not human hormones. The molecules are not human. The progesteron cream you mention contains human hormones, meaning the molecule is the same as if you had made it yourself. Therefor there are no side effects. Also, it will not protect against pregnancy.
I advice to stop all birth control and use other means of contraception if that's what you take them for.
If your doctor prescribed the birth control for its hormonal effects you do wel to change the prescription to human body identical hormones such as Estrogens or Progesteron. Your cream already contains this kind of progesteron. There are body identical hormones your doctor can prescribe but they producers will not have lobbied him very heavily. Because natural occurring molecules cannot be patented. In Europe one of the manufactures is called Utrogestan. That's the brand I get from my doctor.

Good luck. Sorry it took so long to answer. Did you try the cream? What did you experience?
 

digital dog

Senior Member
Messages
646
Thanks so much for the reply WoolPippi.

I am hesitant to try the progesterone because I am feeling somewhat better. I have more energy. This is most probably down to two things: either I am in perimenopause and the lower hormones are actually suiting me, or the homeopathy I have been taking for two months is helping me.

I started homeopathy with VERY little enthusiasm. I simply do not believe in it. That being said I went on and off the second remedy because of the strong reactions I had to it and I have been feeling so much better with this third remedy so I really do not know what to think. I have only had eighteen days of fatigue in five weeks instead of daily since starting.

I am going to carry on with the homopeathy but in all honesty I stll do not believe in it and I think I must be suiting the lower oestrogen or lower progesterone (not sure which or perhaps I am suiting the higher amounts that are fluctuating???) This is obviously very strange as most women do much worse on lower hormones.

That being said, I should probably try the progesterone at some point just incase it helps. I am so nervous of hormones though but your post has helped me to see the wood for the trees.

I am going to give homeopathy another month (if I improve even more I will continue. If I stay the same I will try progesterone). Then I have something called C60 to try and after that I might try the progesterone.

Is it worth testing your progesterone? I've been told that it is not because it is always in flux and you can never get an accurate picture.

Thanks for all your information.

Metainum, have you asked the medium you are working for to heal you? Wish you could give me a clue as to who they are.
 
Messages
47
Location
Los Angeles
WoolPippi,
Are you saying that the progesterone made hypothyroidism better? I have hypo and cannot take ANY thyroid meds/supplements. I am 44 and in perimenopause I imagine as missed a couple of periods which have been getting shorter and shorter over the last five years.
I do VERY badly with hormones (severe depression from two contraception pills and HATED the mirena coil)but I have serenity progesterone cream and i'm temped to try a tiny amount out of sheer desperation.
I am so sick of feeling so bloody tired...and fat. What is it with putting on so much weight? I think I'd have to stop eating entirely to lose any.
Any advice would be very much appreciated.
I still get my period but it is hit and miss so wouldnt know when to take the progesterone.

@digital dog Just FYI, Mirena is the devil. It (I believe) CAUSES fibro and CFS. It is a progesterone only form of coil and there are currently tens of thousands of women pursuing a class-action law-suit against its makers in the US. The progesterone it uses is called levongesterel, but personally - I cannot tolerate ANY exogenous progesterone whatsoever - be it the so-called 'bio-identical type (marketing term, just to be clear) or the pills or the injectable PIO I used for my years of IVF. In fact after talking at length to a hormone specialist I realized that for years before I was diagnosed it was during the high progesterone part of my cycle that I would feel the worst. (For the record - he doesn't believe our bodies need progesterone once outside having babies. The only reason for taking it alongside estrogen would be prophylactically, to prevent uterine cancer when estrogen is taken.
 

Rufous McKinney

Senior Member
Messages
13,249
Did motivation get worse for any of you after menopause?

EGAD yes.

The only reason for taking it alongside estrogen would be prophylactically, to prevent uterine cancer when estrogen is taken.

I used progesterone creme for peri and menopause and I helped me quite a bit.

1) reduced the heavy periods/cramping going in peri-menopause

2) helped with hot flashes, maybe with sleeping some

Sleeping is what got so much worse at menopause, and if I don 't sleep, I'm in dire straits.

Several older female friends I know who did estrogen hormone replacement therapy (one used a vaginal ring) they ALL got breast cancer.
 

Victronix

Senior Member
Messages
418
Location
California
Several older female friends I know who did estrogen hormone replacement therapy (one used a vaginal ring) they ALL got breast cancer.

There are a lot of variables involved. My understanding is that older women, today, used the estrogen from horse urine, whereas women now being prescribed estrogen are often using the so called bio-identical version, which is thought to make it less likely to cause cancer since it is similar to the estrogen produced in the body.

However in recent studies they are also looking at the role of progestins and finding that the types of progestin makes a difference in cancer rates.

And there is context - as one study I was looking at stated:

"In conclusion, clinicians have to put the risk of breast cancer associated with MHT into clinical context: The risk associated with long-term estrogen use is much lower than the risk conferred by obesity, inactivity and alcohol use."