Poll The FM and ME/CFS Gynecological History Poll

[Cort]

A recent study found increased rates of gynecological disorders in ME/CFS. Other studies suggest the same may be true for fibromyalgia. Please take the gynecological poll and tell us which, if any of the conditions listed, you've had. Please let us know in the comments section if they preceded ME/CFS/FM or occurred concurrent with it.

• High Rates of Gynecological Disorders Implicated in Chronic Fatigue Syndrome

 

[Jana g]

All gyno problems except ovarian cysts were after ME/CFS.

 

[serenebeth]

early menopause (at age 40) --NOT due to hysterectomy, as well as misscarriage & ovarian cysts... all after dx with FM & CFS

 

[Melanie]

You should add fibroids? Also fistula? And ovarian cysts?

 

[Karmin]

Endometriosis is listed twice (in questions and results). Would be good to have premature menopause included too.

 

[Ruth Efird]

Fibroids and hysterectomy after CFS/fibro dx. Dx at menopause

 

[Thobby]

This is an edit of a post I made two years ago. I had a hysterectomy (for a baseball-sized fibroid) eight months after I wrote it. It turned out that my womb could never have produced a child; muscle tissue and lining tissue were intermingled, rather than being in layers as they ought to have been.

My periods were nearly always regular as clockwork (though beginning in my late thirties I tended to skip a period in the hottest days of summer). So I'm a counterexample there.

On the other hand, I always had ridiculously heavy periods (an "overnight" pad would last me two hours at most). My periods were agonizingly painful (enough so that all I could do was stay in bed for a week when they hit), and the pain grew even worse as I grew older, but no doctor ever found evidence of endometriosis. I also have a long history of UTIs, cystitis, pyelonephritis, and yeast infections.

Note, however, that I've never thought that any of it had anything to do with CFS, as I'm a DES daughter, and the heavy periods and pain were present from menarche, a decade before I got CFS.

 

[pepsilovr]

Should include the cancers. I have no doubt my (rare) ovarian CA was caused by CFS.

 

[junib]

A recent study found increased rates of gynecological disorders in ME/CFS. Other studies suggest the same may be true for fibromyalgia. Please take the gynecological poll and tell us which, if any of the conditions listed, you've had. Please let us know in the comments section if they preceded ME/CFS/FM or occurred concurrent with it.

• High Rates of Gynecological Disorders Implicated in Chronic Fatigue Syndrome

I have had 4 hydatidiform mole pregnancies, a pedunculated parasitic tumor from my uterus, polycystic ovarian and breast disease, extremely heavy periods every 3 1/2 weeks (bleeding through 2 tampons and a maxi pad), a ruptured ovarian cyst that attached to my colon, fibroids, and finally a hysterectomy in my early 30's. All before I was ever diagnosed.

 

[Cort]

You should add fibroids? Also fistula? And ovarian cysts?

I added fibroids and then ran out of options - it limits me to ten questions.

 

[Cort]

I have had 4 hydatidiform mole pregnancies, a pedunculated parasitic tumor from my uterus, polycystic ovarian and breast disease, extremely heavy periods every 3 1/2 weeks (bleeding through 2 tampons and a maxi pad), a ruptured ovarian cyst that attached to my colon, fibroids, and finally a hysterectomy in my early 30's. All before I was ever diagnosed.

Boy do you fit the profile junib.....

 

[Cort]

Should include the cancers. I have no doubt my (rare) ovarian CA was caused by CFS.

Got it - cancer is a pretty common reason for hysterectomy. Unfortunately the poll is limited to ten questions. I'm going to try and change that, though.

 

[Cort]

Endometriosis is listed twice (in questions and results). Would be good to have premature menopause included too.

Did it again!
I removed the second and added ovarian cysts...

 

[junib]

Boy do you fit the profile junib.....

No one has ever connected the dots for me.

 

[Cort]

I'm still in the last stages of perimenopause at age 52, and my periods were nearly always regular as clockwork (though beginning in my late thirties I tended to skip a period in the hottest days of summer). So I'm a counterexample there.

On the other hand, I was infertile despite 25 years' happy marriage, and I always had ridiculously heavy periods (an "overnight" pad would last me two hours at most). My periods were agonizingly painful (enough so that all I could do was stay in bed for a week when they hit), and the pain grew even worse as I grew older, but no doctor ever found evidence of endometriosis. I also have a long history of UTIs, cystitis, pyelonephritis, and yeast infections.

Note, however, that I've never thought that any of it had anything to do with CFS, as I'm a DES daughter.

So many variations on gynecological problems! Look what I'm missing . There are advantages to having a simpler system!

 

[Cort]

No one has ever connected the dots for me.

You must be in the hormonal ME/CFS subset - which looks to be a pretty big one. Only three studies have been done in 30 years. It's kind of both scary and exciting. If it wasn't for a female CDC researcher - Dr. Boneva - who told me she pushed for these studies - they wouldn't have been done. Look at what they showed up though. One wonders what else hasn't been done that open up other insights? Probably lots of things.

 

[Lissa]

Heavy and painful periods until on the pill. Cured all my ills and then a doctor took me off the pill at age 30.

THAT screwed me up royally and I wound up with rapidly growing fibroids. It was so painful I couldn't walk or stand up straight.

Hysterectomy at age 32, and the surgeon commented he'd never seen so many fibroids in one uterus!

Didn't get a CFS diagnosis til age 42...

 

[Issie]

One thing that is being connected to endometriosis is mast cell degranulation. They are looking at addressing that to help endometriosis. I had endometriosis and severe fibroids and cysts - and after 7 surgeries my 8th was a complete hysterectomy at age 36. I also have MCAS (mast cell activation syndrome).

http://www.researchgate.net/publica...triosis_with_janus_kinase_3_inhibitor_JANEX-1

 

[Issie]

BTW, I wonder if there is an imbalnce in men with the Ratio between testerone and estrogen in those with CFS and/or POTS - would be an interesting study. Or maybe even too low levels of testerone vs normal estrogen levels. Making estrogen too high. Endometrosis is thought to be too high levels of estrogen with to low levels of progesterone.

Issie

 

[Telula]

I have finally been diagnosed with PCOS that I've obviously had since before my first period (3-4 weeks before my first period I felt a horrible pain in my right side and thought I had appendicitis. All these years later the doc who diagnosed me said it was most likely a cyst bursting with the egg release or something). I even had test results that date back to less than a year into my periods that showed PCOS positive hormonal changes. But, like my cousin, I don't show up with many cysts on ultrasound. From my first period I've had periods that lasted weeks, sometimes months, not counting pms and the cycle would barely give me breathing room. I also had such violent symptoms like debilitating cramps and migraines that could stay for months. My only hope of not becoming too anemic and stay in classes was to go on a pill that made me only have a period every 3 months (that's what it was supposed to do, better than without it though...at least until these scientists figure it out).