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:
- lack of concentration
- 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.