Gynecological Concerns In ME/CFS Women

I find that now that I’m getting older, I am never quite sure if the symptoms I am experiencing are due to ME/CFS or if they are pre-menopausal symptoms.  My doctor had told me that I was starting to go through the pre-menopausal stage, but it’s still hard to tell which symptoms are from what at certain times of the month.  I was reading through an article I found on gynecological conerns in CFS and found that I could relate to a lot of what the author (Rosemary Underhill, MB, BS, MRCOG) was talking about.   She says:

Diagnostic confusion sometimes occurs because some symptoms are common to both CFS and gynecological conditions such as premenstrual syndrome or menopause. These common gynecological conditions can also cause an exacerbation of CFS symptoms. The female reproductive hormone system might also play a part in the causation and persistence of CFS, since the illness occurs twice as often in women as men.1

Although scientific studies are few, a number of gynecological conditions have been found to occur more frequently in women with CFS. These conditions are usually associated with abnormal reproductive hormone levels, immune dysfunction and/or pain. Some of these conditions may even pre-date the onset of the CFS.2,3 Why this should happen is open to conjecture. Endocrine and/or immunological changes may possibly be present in some CFS patients before the full-blown syndrome becomes manifest.

This next point Rosemary Underhill makes needs to be read by doctors everywhere:

Gynecological symptoms in women with CFS should not be assumed to be merely part of the CFS symptomatology. Their investigation and treatment in patients with CFS should follow standard gynecological practice, and patients will benefit from relief of symptoms.

How many times do we go to the doctor (men and women CFS patients) and our problems are dismissed because we have ME/CFS.  We are not taken seriously because doctors, if they believe in CFS, just want to throw every symptom under the CFS umbrella. It is so frustrating.  For female CFS patients, everything is worse because our bodies go through a lot more changes than men. 

The article states that many pre-menopausal women have “scanty, irregular cycles, bleeding between cycles and periods where their cycle is absent.

These symptoms can predate the onset of CFS, are typical of anovulatory or oligoovulatory cycles and can be associated with a low estrogen state. Hirsutism may be associated with oligomenorrhea. Researchers have found that ovarian hormone (estradiol) levels were low in some 25 percent of a small group of pre-menopausal women with CFS, in spite of normal follicle stimulating hormone (FSH) levels. The researchers suggested that a chronic estrogen deficiency state is present in a subgroup of women with CFS.  The normal FSH levels distinguish this condition from menopause where FSH levels are raised. At menopause, heavy irregular periods, scanty periods or amenorrhea can occur.

Underhill says that many women find their ME/CFS symptoms worsen at menopause.  This is one reason why it is hard to tell whether our symptoms are due to ME/CFS or gynecological concerns.  Check out these central nervous system symptoms associated with low estrogen:

  • fatigue
  • headaches
  • dizziness
  • lack of concentration
  • insomnia
  • depression
  • anxiety
  • hot flashes
  • night sweats

These symptoms are like a run-down of CFS symptoms.  The difference, however:

One point of difference is that vaginal dryness is usually present if estrogen levels are low and less likely to be present if symptoms are due to CFS.

The article states that ME/CFS women are also more likely to suffer from PMS – approximately 50% of CFS women.  Approx. 30% of ME/CFS women suffer from dysmenorrhea (severe uterine pain).  In normal women, only about 15% suffer from this. 

Severe dysmenorrhea may occur on its own, or it can be a symptom of several gynecological conditions which are more common in CFS patients. These include endometriosis, fibroids, pelvic inflammatory disease and ovarian cysts. In all these conditions, menses may be heavy. If there is any abnormality found on examination, such as a pelvic mass, further gynecological investigation is indicated. Mild dysmenorrhea usually responds to analgesics such as aspirin or Tylenol, but NSAIDS may work better. Severe pain can be treated by suppressing ovulation with oral contraceptives.

Endometriosis affects up to 20% of ME/CFS patients.  I am fortunate to have never had this problem, although I have had very heavy cycles, very bad menstrual cramps, and PMDD, which is a severe form of PMS.  It is also about 13.8% of ME/CFS female patients who suffer from Interstitial Cystitis.  I do have this very painful illness.  When people ask me what it is like to have IC Disease, I describe it as a bladder infection times 10. 

Interstitial cystitis is thought to be associated with some immune system abnormalities.

Underhill says that 20% of ME/CFS patients have very painful urination or dysuria.  Symptoms include pain, urinary frequency and urgency both day and night. 

Urine culture may show a bacterial infection which can be treated with antibiotics. However, sometimes the urine is sterile and symptoms may be due to interstitial cystitis, detruser instability, urethral syndrome or endometriosis. The patient should be referred for further investigation.

Approximately 29% of ME/CFS females report having complaints of vaginal discharge and sexual dysfunction is reported in up to 20%. 

Some people believe that women with CFS suffer from a chronic multi-system yeast infection which exacerbates CFS symptoms. This has not been proven by culture and oral swabs are rarely positive for yeast. Vaginal yeast infection is normally a localized condition and only local treatment is indicated.

Loss of libido can be associated with low reproductive hormone levels, or due to the severe fatigue, malaise and pain which are prominent in CFS.

There have been no reports of increased risk of ovarian cancer in ME/CFS females but there is a history of more fibroids and ovarian cysts.  CFS patients are also more likely to have had a hysterectomy than normal females.  Underhill says that this may be associated with the increased numbers of patients with fibroids, ovarian cysts or endometriosis.

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Comments

  1. Interesting and I would certainly say that my experience bears all of this out. (I’ll tell the sorry tale, only because it may be useful to you or others as a comparison.) I have fibromyalgia, ME/CFS and have suffered with unexplained cystitis since the 1970s. Even when I was young I suffered “scanty, irregular cycles, bleeding between cycles and periods where their cycle is absent.”

    In my late 30’s, suddenly, everything went into overdrive: I was having periods every couple of weeks, very heavy and very, very painful. This is probably when I developed fibroids (lots of them, apparently, that were finally diagnosed late last year.) In my mid 40’s my cycle reduced to roughly every six months. I’ve been having hot flushes on and off for about 5 years: in the last year this has increased to every time I eat or move. I’ve been convinced for years that my hormones have never been properly balanced.

    My GP and gynaecologist both assume that I am currently going through the menopause and, truthfully, I should be over it by now, as I’ve just turned 53. I know I’m not, because my last cycle was only in December.

    I had been thinking that, hopefully, all of my symptoms; fibroids, hot flushes and those that seem like they’re to do with the ME/CFS, etc., should all calm down once I am through the menopause. So, I bought one of those test kits to see at least if I am menopausal (I’m certainly bitchy enough for it! lol) and guess what? Did two tests, on separate occasions a couple of weeks apart. Followed the instructions carefully. Made sure they were mid-stream, early morning samples for the best results. Both said that I am not.

    Does this mean I must assume that all my symptoms are therefore fibro / ME/CFS related? I agree, it’s a real conundrum, because I don’t want to do that and miss something important and I certainly don’t want to resign myself to the inevitability that, if they are not cyclical, they may be permanent features either. The trouble is that the number of different tests that would be required to check out each and every symptom would be prohibitive if you had to pay for them. On the NHS in the UK, I think they’d give up on me, see me as a trouble-maker and have me thrown in a mental asylum if I even asked!

    • Hi Pamela, I wouldn’t rule out that your problems aren’t due to going through menopause. Our bodies do some really weird things and you know as well as I that tests don’t always tell the real truth. I know several times I have said that I know that my hormone levels are off even though I am only 40, but tests say differently. My doctor finally decided that I possibly am in pre or peri-menopause. It might be a combination of the two – CFS & pre-menopausal symptoms. I’m not a doctor and I know that treatment in the UK for CFS is really hard to find, but what about visiting an OB-GYN?

  2. I have always had signs of FMS, but it shifted into high gear in my early thirties, right after the birth of my second child. I was diagnosed with Graves Disease at 27 and treated with I131. My periods got closer and closer together. I had a blood test every week and was found to be ovulating every 8 days! I would bleed for 5 days, stop for 3, and start up again until I bled for 2 months straight! Finally I was diagnosed with Premature Ovarian Failure and the wild ride subsided. During that time my fibro flared so badly that I lost the ability to walk more than a few steps, my arms and legs were too heavy to lift and all I wanted to do was sleep. I am now 18 years post menopausal, and believe that there is a huge hormonal connection to FMS. I now am dealing with worsening allergies which appear to be turning into MCS. It’s been quite a journey, evolving over time and ever changing.

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