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    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.

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For all the ladies...

Messages
22
My periods were regular and basically pain free from ages of 14-18. The first time they became irregular I had a golf ball sized cyst on my ovary which had to be surgically removed. My periods went back to being regular for a year or so.

Then bam! I was experiencing severe pain during my period and a week before it came I was so fatigued that I would basically sleep for a week! They were irregular, I would get them twice a month and then not get them for a few months, basically all over the joint.

The pain got to the point where it was there 24/7. I ended up in ed and they had no idea what was going on. I then saw my gynaecologist and asked him to do a laparoscopy. It turned out I had extensive endometriosis at the age of 22. Surgery helped a lot for about 4 months. Then the pain came back and I had to trial different hormones to see what worked for me.

The only pill that helped was visanne, I take two tablets a day and I have an implant in my arm. They are both different forms of progesterone. I am now don't have any pelvic pain and period free.

If they suspect endometriosis I highly recommend surgery (for diagnosis and removal) followed by hormone medication! It is the only way to basically get it under control. Suppressing periods is essential!

Find yourself an amazing gynaecologist or someone who specialises in endometriosis. I had an excellent gynaecologist and now see an endometriosis specialist for management. The endometriosis specialists are brilliant and really know how to manage the condition.
 

Cheryl M

Senior Member
Messages
115
Location
North-west England
Hi all. Sorry for resurrecting thread?

My ME symptoms came on insidiously within a couple of months of my period starting at the age of 12. I have had problems continuously ever since, including during a three-year period when I didn't menstruate because of Depo Provera. I don't know if this sounds weird, but are my periods causing the ME (and hypermobility)?
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
One thing I noticed through the years with PMS and bad cramping is they didn't occur if I managed to take some b complex sometime during the month. I didn't have to take it all the time but just some and then the PMS didn't happen.

It might not work for you as it sounds like you have a lot more going on than I did but it did help me.

Also it doesn't have to be a mega b complex. I just had to use one that wasn't yeast based because of an allergy to that and I found I prefer the co-enzyme b products because some b complex products make me feel nauseous but those type didn't.

Hope you get some relief.
 

Float

Senior Member
Messages
307
Location
Australasia
As I journey through a 'recovery' with ups and downs, I can definitely say symptoms are worse before and during period, especially OI and fatigue.
It's at this time that I panic I'm having a full relapse and will be disabled again.

So.......I recently did a test for levels of both estradiol (the type of estrogen that is highest in menstruation age women ), and progesterone.
This test is best done on day 19-21 of your cycle ...I think it can also be done on day 3 though I'm not clear.
The ratio of estrogen to progesterone is very important .
Ideally 1: 200-500.
Mine was 1: 61

If the ratio is low like mine, that is estrogen dominance which causes bad pms, sore boobs, fluid retention, weight around hips, painful periods, fibrous and endometriosis

There is some relationship to hormone levels and the renin angiotensin aldosterone system (which could effect blood pressure ) but I haven't worked it out yet but I wonder if that's why OI gets worse.

In addition I had low levels of both progesterone and estrogen (you can have estrogen dominance even with low estrogen! ).

WHAT I'M DOING ABOUT IT:
A supplement called DIM or SGS is something you could investigate for estrogen dominance but I chose to :

Take vitex (agnus castus ) supplement as soon as boob soreness starts each month. You're supposed to take it continously for 6 months but the first lot worked very well for pms and boob soreness, but I had a 10 day period (4 days very light ).

The supplement contains also : black cohosh, magnesium, calcium, b6 , chromium, wild yam. Apart from the wold yam, all of those are evidenced to help with pms and or blood sugar balance .

Up intake of cruciferous veg as they help the liver metabolize estrogen for elimination. (Same concept as sgs supplement).

Good luck everyone !