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Gynecological problems - Xmrv

Discussion in 'Hormones' started by VillageLife, Feb 22, 2010.

  1. VillageLife

    VillageLife Senior Member

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    I found this while doing a search on google for problems with menstuation in CFS sufferers! It's quite old information back from 2002.
    It is perhaps more proof of the possible connection of XMRV, as XMRV effects men with prostate cancer, perhaps it effects womens menstuation.


    Summer 2002

    Gynecological Concerns in Women with Chronic Fatigue Syndrome
    By RosemaryUnderhill, MB, BS, MRCOG, United Kingdom


    Women suffering from chronic fatigue syndrome (CFS) commonly have a bewildering array of symptoms that can occur in every body system, including the reproductive system. 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.

    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.

    Low estrogen states, menopause and osteoporosis
    Many pre-menopausal CFS patients have scanty, irregular periods, inter-menstrual bleeding and sometimes periods of amenorrhea. 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.4 The researchers suggested that a chronic estrogen deficiency state is present in a subgroup of women with CFS.4 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.

    There are number of central nervous system symptoms associated with the low estrogen state. They are tiredness, headaches, dizziness, lack of concentration, insomnia, depression and anxiety. When FSH levels are also raised at menopause, this can result in vasomotor instability, causing night sweats, feeling hot often and flushing of the face. All of these symptoms may be due to reproductive hormone changes, CFS or a combination of both. 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. Many women find that their CFS symptoms worsen at menopause.

    In younger pre-menopausal women, the presence of a low estrogen state can be confirmed by measuring blood estradiol levels (low) and FSH levels (not raised). In peri-menopausal women between 40 and 50, FSH levels may fluctuate, making serial measurements helpful. In women over 50, menopause is more likely and blood FSH is high.

    Women with CFS who have had a low estrogen state for some years are at risk for osteoporosis. A small study found that five of seven hypo-estrogenic pre-menopausal women with CFS had a low bone density.4 Other factors contributing to osteoporosis in CFS patients are exercise intolerance, because exercise exacerbates CFS symptoms, and lack of vitamin D, due to inability to go outside in the sunlight, as a result of weakness and photophobia. Calcium intake may also be low, if the patient avoids milk due to lactose intolerance, which is common in CFS. The diagnosis can be confirmed by bone density measurement.

    Treatment considerations: In pre-menopausal patients, treatment to regularize periods is not necessary. But if estrogen levels are low, the co-existing central nervous system symptoms can be much improved by hormone replacement therapy (HRT), although it will not cure symptoms due to CFS. In one uncontrolled trial, it was found that symptoms improved in 80 percent of patients with low estrogen levels, following hormone treatment of estradiol patches and cyclical progesterone therapy.4 HRT is also helpful in menopausal patients. For example, insomnia associated with CFS is much improved if a menopausal patient is no longer woken several times each night by hot sweats.

    Osteoporosis can be prevented and treated by use of HRT, calcium, magnesium, vitamin D supplementation, and weight-bearing exercise, if tolerated. Several pharmacological agents, which can reduce the incidence of fractures, have been approved for treatment of severe osteoporosis. With the exception of HRT, their effect on CFS patients has not been studied.

    Premenstrual syndrome
    Premenstrual syndrome (PMS) occurs widely in the general population but is more common in CFS patients, occurring in more than 50 percent of them. PMS can pre-date the onset of CFS, although it is less common before the onset of the CFS than in controls.2

    Symptoms start in the luteal phase of the menstrual cycle and improve within a day or two of the period. The most common symptoms include mood swings, irritability, depression, headache, insomnia, carbohydrate cravings, breast pain and tenderness, and abdominal bloating. Fluid retention may cause a weight gain of two or more pounds. In addition, CFS symptoms frequently worsen pre-menstrually.

    The cause of PMS is disputed. It is thought to be hormonal in that it usually occurs in association with ovulatory cycles. Some recent research has found that it is linked to a deficiency in serotoninergic activity in the brain.5

    Treatment considerations: Various treatments used in the past have been found to be no better than placebo. These include the use of progestogens, estrogens, vitamin B6 and evening primroseoil.6 Recently, in several placebo controlled trials, serotoninergic antidepressants (SSRIs) such as fluoxetine 20 mg daily, or use on days 1428 of the menstrual cycle, were found to be successful, relieving PMS symptoms in up to 90 percent of patients,7 but there are no specific studies in CFS patients. Side effects of treatment tended to improve with time.

    Dysmenorrhea
    About 15 percent of normal women suffer from dysmenorrhea, but at least 30 percent of CFS patients may suffer from it.8 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
    Endometriosis is reported to occur in up to 20 percent of women with CFS. It can predate its onset.2 Dysmenorrhea is the most frequent problem. It can be very severe even in apparently mild cases of the condition. Pain before the period, dyspareunia, pelvic pain and pain related to the bladder or bowel may also occur. There may be no symptoms, and the condition is only discovered during surgery for another condition, such as infertility, which is often associated with endometriosis.

    In endometriosis, endometrial cells which line the uterus are also found in the pelvic cavity and sometimes elsewhere. Retrograde transport of endometrial fragments along the fallopian tubes occurs in many normal menstruating women, without signs of endometriosis. These endometrial cells are normally removed by immune system scavenger cells. In women with immune abnormalities such as CFS, the scavenging cells may be overwhelmed. With each menstrual cycle, the ectopic endometrial cells are shed, resulting in localized bleeding. This is painful and may lead to inflammation and scarring in the affected area.

    A physical exam may be normal, but scarring may cause lack of mobility of the uterus and cystic enlargement of the ovaries may be present. This can be seen on an ultrasound scan. If symptoms are severe, the diagnosis can be confirmed and other conditions excluded by laparoscopy and biopsy. No abnormality may be seen on laparoscopy. The cause of pelvic pain can sometimes be difficult to find.

    Women with endometriosis who do become pregnant are often much improved following delivery of the child. If severe pain caused by endometriosis does not respond to medication, surgery may be required as a last resort. It is very important to distinguish endometriosis pain from pain due to other problems before embarking on surgery.

    Treatment considerations: The treatment of symptomatic endometriosis is by analgesics, such as NSAIDS, oral contraceptive pills or progestational agents. Also used are anti-estrogens with immune modulating effects, such as Danocrine, or the GnRH agonist Leuprolide acetate. These anti-estrogens all have side effects which may not be tolerated in CFS patients. For the treatment of infertility, there is no proof that the treatment of mild endometriosis by hormones is helpful.

    Interstitial Cystitis
    Twenty percent of CFS patients have dysuria.9 Symptoms of pain, frequency and urgency of urination both by day and night may be present. 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.

    Interstitial cystitis is thought to be associated with some immune system abnormalities. An informal survey of patients with it found that 13.8 percent of them also suffered from CFS.10

    Vaginal problems
    Twenty-nine percent of a series of CFS patients complained of vaginal discharge.11 In all cases a swab should be obtained for diagnosis. There are many causes of vaginal discharge. A thick, creamy, irritating discharge may denote a vaginal infection with Candida albicans. The yeast organism is present in the vagina of many asymptomatic women, but overgrowth leading to symptoms may occur in patients who have had repeated courses of antibiotics, are pregnant, have diabetes or have abnormal immune function. There is disagreement as to whether vaginal candidiasis is more common than normal in women with CFS.

    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. There are several effective vaginal anti-fungal preparations. A short course of treatment may be adequate, but a longer two-week course may be necessary and may have to be repeated to clear symptoms.

    Sexual Problems
    Sexual dysfunction is present in up to 20 percent of CFS patients.9 Decreased libido is common and dyspareunia may also occur. 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. Dyspareunia may be caused by vaginal dryness from low estrogen levels, or the presence of a pelvic condition such as endometriosis, interstitial cystitis, pelvic congestion syndrome or vulvodynia. For low estrogen syndromes, a vaginal estrogen cream or hormone replacement therapy may be helpful. Sexual problems put a severe strain on both patient and her partner. They may need counseling to help them save their relationship.

    For contraception, an oral contraceptive pill or a hormonal implant can be used, if tolerated, but the intra-uterine contraceptive device (IUD) is not recommended because of an increased possibility of pelvic infection.12 The diaphragm, cervical cap or condom, while less effective as contraceptives, can be used. Surgical sterilization carries anesthetic risks in CFS patients and can cause a relapse.

    Fibroids, ovarian cysts and hysterectomy
    A history of ovarian cysts, including polycystic ovaries, and uterine fibroids was found in one study to be more common in CFS patients than in controls.2 They often predated the onset of the CFS. There are no reports of any increase in ovarian cancer. If a pelvic mass is present, referral to a gynecologist is indicated. Patients with CFS are significantly more likely than controls to have had a hysterectomy.3 This may be associated with the increased numbers of patients with fibroids, ovarian cysts or endometriosis.

    Rosemary Underhill, MB, BS, is a physician who specializes in obstetrics and gynecology. Dr. Underhill served as a medical consultant for the New Jersey consensus manual for the primary care of CFS.

    References

    1. Jason LA, et al. A community-based Study of chronic fatigue syndrome. Arch Intern Med. 1999; 159:2129-2137.
    2. Harlow BL, et al. Reproductive correlates of chronic fatigue syndrome. AJM. 1998; 105(3A): 94s-99s.
    3. Reyes M, et al. Risk factors for CFS. J Chronic Fatigue Syndrome. 1996; 2(4):17-33.
    4. Studd J and Panay N. Chronic fatigue syndrome. Lancet (letter). 1996; 348:1384.
    5. Ashby CR, et al. Alteration of platelet serotonergic mechanisms and mono-amine oxidase activity in premenstrual syndrome. Biol Psych. 1988; 24(2): 225-233.
    6. Manu P. The pharmacotherapy of common functional syndromes. The Haworth Press Inc. 2000; 229-257.
    7. Stone AB, et al. Fluoxetine in the treatment of late luteal phase dysphoric disorder. J. Clin Psych. 1991; 52(7):290-293.
    8. Jessop C. Clinical Features & Possible Etiology of CFIDS. CFIDS Chronicle. Spring 1991; 71.
    9. Bell D. The Doctors Guide to Chronic Fatigue Syndrome. Addison-Wesley 1995;
    10. Chalker L. Interstitial cystitis. CFIDS Chronicle. Summer 1996; 72.
    11. Wookey C. Myalgic encephalomyelitis. Croom Helm. 1986; 21.
    12. Shepherd C. Living with M.E. Cedar. 1993; 241.
  2. creekfeet

    creekfeet Sockfeet

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    Thanks so much for this, villagelife. I want to provide my gynecologist with a copy of this article. Do you know of a link to an original source, or any publication data? I googled the title and author and got only lots of other places where it had been re-posted or referenced.

    In any case, it offers some explanations and raises some further questions for the relationship of endometriosis (and other "plumbing problems" as my old dad used to call them) with ME/CFS. Intriguing!

    Again, thanks!
    ~ Creek
  3. VillageLife

    VillageLife Senior Member

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  4. creekfeet

    creekfeet Sockfeet

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    Thanks for the link! I just went in today and am scheduled back for an ultrasound Monday to look for fibroids. It seems what's been so ouchy for the past many years may have been fibroids instead of endo. Or both, or... Anyway, I've got a good gyn now so I'm sure she'll read the article and have a good response for me.
  5. knackers323

    knackers323 Senior Member

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    this is a little different but maybe relevent. since I got cfs ive had nearly no libido, which is very un-normal as I got it at 17, and I have had a near constant pain in my testicals. ive had heaps of tests for this and the docs have come up with nothing. any other males out there experienced this? I also wonder if maybe the best place to look for XMRV might be in the reproductive system?
  6. creekfeet

    creekfeet Sockfeet

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    Quick update: wiped out after making two other posts but wanted to let people know: Got my ultrasound, no fibroids. Got an endometrial biopsy, no cancer. Yesterday had emergency gyn appt, feared infection from biopsy process or who knows what: intense pain, nearly passed out. Turned out to be ruptured ovarian cyst. Doc did an ultrasound and saw the cyst: about the size of a roma tomato, he said. Going to put me off my pizza.

    Flat out for acouple days waiting for fluids to reabsorb. Meanwhile sloshing cyst fluid in abdomen creates hellish pain. Darvocet helps a little but also increases brain fog so I'm keeping the dose low. Incidentally biopsy was done with nothing but ibuprofen and didn't hurt much at all but if you do have fibroids as my sister can attest it hurts like hell.

    Final note, endometrial tissue is en route to WIP.
  7. Kati

    Kati Patient in training

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    Oh Dear Creekfeet, take her easy... So sorry- and couldn't the gyne see the ovarian cyst last week when he did the biopsy?

    The good news is there's no cancer. :hug::hug::hug:
  8. creekfeet

    creekfeet Sockfeet

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    During ultrasound and biopsy all looked fine, evidently. And I had only the usual pain. So I guess this thing blew up huge all of a sudden. It was a functional cyst meaning it's the sort you're supposed to develop every time you hatch an egg, to help the egg break through the ovary wall, but sometimes they grow way too big and when they burst huge amounts of caustic fluid get splashed all over for a couple days; hence, excruciating pain. So yeah, I guess the timing was such that it wasn't inflated when I was seen last week.

    Thanks for the hugs! In a way it's a good thing that I've got one more thing forcing me to seriously rest.
  9. ahimsa

    ahimsa Senior Member

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    ME/CFS and endometriosis

    Thanks for posting that article. I've seen some of this information before especially this section:

    I'm in this category. I've had endo symptoms since high school. My mother had endometriosis as well so even without an official surgical diagnosis I was pretty sure it was endo. But my ME/CFS onset was in 1990, when I was 29, many years after my first endo symptoms.

    The pain slowly got worse after my ME/CFS onset but I don't know whether that was directly due to ME/CFS itself or some other factor (e.g., had to stop regular exercise - maybe exercise was one factor keeping my endo pain in check?). I had surgery to remove the endometriosis tissue in 2000 (Dr. Redwine, a surgeon in Oregon who specializes in endo removal) and that confirmed what I had suspected all along. Lots of endo tissue, especially on the side where I felt that intense, burning pain (not general cramps, but a specific point where it hurt). Ten years later and I'm still mostly pain free (maybe 1-2 ibuprofen tablets each month) so the surgery was a success for me.

    I was hoping that removal of the endometriosis would improve my ME/CFS/NMH symptoms but no such luck. :(

    Marjorie
  10. coxy

    coxy Senior Member

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    i have had 3 separate ovarian cysts since being ill. Each time i was sent for a scan a cyst the size of a tennis ball was seen. i was booked in for an operation each time, but the scans i had before the op all showed the cysts to have shrunk and be reabsorbed luckily. I quite often get terrible pain mid cycle though, i'm sure the cysts get quite big almost every cycle. It's absolutely agony when the cysts twist though, like no other pain ever experienced!!
  11. DrDonnica

    DrDonnica

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    I am writing an article for the medical journal The Female Patient tentatively called "Why Gyn's Need to Know About CFS". Thsi goes to 42,000 ob/gyns & 20,000 ob/gyn nurse practitioners. I welcome any comments/input that women with CFS may have to make sure I don't miss anything. Yes, I have already read Dr. Underhill's excellent article & will be quoting it heavily.
  12. leaves

    leaves Senior Member

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    Dr Donnica, Great you are doing this!!

    I am not sure whether I am a typical CFS patient, but here it goes: I am xmrv+, long term amenorrhea (hypothalamic) since about 17 and very low progesteron and estrogen, I also had a big polyp removed from my uterus (and I was pretty young for having one). Birth control did not make me feel better, and also given the fact that estrogen is a food for xmrv I dont want to take it. I see it as a symptom that will resolve when I got better. There are some studies that suggests that high dose carnitine are good, it did make me feel better a bit, but never solved it. But I do recommend for females to take 1gm carnitine daily. Regular red meat (muscle not fat) also helps some.
    Also, I have borderline osteoporosis. Drs often recommend calcium but for many cfs people this is not tolerable. Actually i never had low levels of serum calcium, but very high! It is "leaking from my bones" a calcium defficiency is not the problem! Japanese use high dose vitamine K2 for osteoporosis (e.g. thorne vitamin k 3 x 12 drops daily). This is tolerated much better and also supports the immune system. The nice thing of vitamin K2 is that it takes the calcium out of the tissue and into the bones.
    I'd say the big problem/ risk factor is that these gyno problems cause a delay in correct diagnosis. When females that go to the dr with gyno problems and fatigue etc, drs will think it is CAUSED by the gyno problems, or that it is psychological. It is important for them to understand it is a symptom of cfs.
    Another problem is that some drs think that gaining weight is the solution. if the patient is at healthy weight this should not be recommended; it increases inflammation and also can be very hard to reverse.

    Thanks again :)
  13. sarahg

    sarahg Admin Assistant

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    I second this, big time! When I suddenly came down with CFS, the symptoms of endometriosis that I had had for over a decade became suddenly and catastrophically much worse. For me this led to a delay in diagnosis as all the doctors felt they could focus on was that, and everything else I was experiencing was either brushed aside or explained away as being part of it. I was misdiagnosed as having PID, as all my blood tests showed signs of a massive infection, but the cultures for PID were negative, tested for mono which was also negative. So my primary doctor left it at "well, we don't know what you are infected with, it should go away soon" and I was pointed in the direction of endometriosis being the culprit for all my health problems. (it was only after getting CFS that I was diagnosed with endometriosis, all the complaints I had made to gynecologists over the years about things like passing out or throwing up from pain when I got my period were brushed off as "normal" until this point). It took 2 surgeries for endometriosis, including one where I had to have my left ureter resectioned to prevent my kidney from eventually failing due to endometrial growth, for me to realize that I didn't feel any better and something else was also wrong. I found a new primary doctor and was promptly diagnosed with CFS and Fibromyalgia, nearly a year after I had gotten sick.

    My point is that I saw several gynecologists and urogynecologists ( I think 3 or 4) and they all insisted fervently that endometriosis was the only thing that was wrong and that they would fix me 100% and I would get my life back ASAP. I would come into their office with page long lists of increasingly disturbing symptoms that had nothing to do with my reproductive system, and they would continue to insist this was my only problem, even going to the lengths of convincing me I didn't need to see other specialists. Now I know that they were trained in general medicine enough that they should have seen that this wasn't the sum of my health issues. Oddly, I have noticed that in literature about endometriosis it is often noted that there is a significant overlap with CFS, but I rarely see this noted in CFS literature. I hope you can get through to at least a few doctors that if a patients symptoms don't seem to add up entirely to one illness, they need to refer the patient to additional specialists. It would have saved me a lot of time, money, and dashed expectations.
  14. filfla4

    filfla4 Senior Member

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    I'm confused!!!!!! There seems to be just too much going on with me medically at the moment for me to identify which route to take! In the last 3yrs my menopause has thrown me and my usually identifiable ME/CFS symptoms out of whack!!

    In a nutshell....sufferer for 17yrs, started as glandular fever, one year bed ridden and since then have sort of been coping through extreme bouts and better times...typical symptoms of bad throat, low grade fever, rashes on wrists and ankles, myalgia and fatigue....there's more but will keep it brief, including dislocated pelvis etc etc.

    However recently the symptoms have changed (I think it's my menopause changing the face of this monster) and seem to be far more neurological...eg much more frequent parasthesia particularly on my left side, and just in the last three days a wierd sensation of dizziness couples with almost a 'twang' -like electric shock on the left side of my head!!!!!! At the same time, the bad throat and low grade fevers which were there for sooooo long, almost 15yrs, have almost disappeared!!

    There may be a couple of reasons for these sensations which I need to look into....in the last three months my doc has been trying out new anti-d's. I've gone from being on Cipralex for about 3yrs, to trying Cymbalta (for two months) and now just this week he's switched me again to Valdoxan. I wonder if the 'twang' sensation is a side-effect.

    At the same time, my gynae problems are being dealt with....I've got a second ovarian cyst (last one was 4.8cm and this time it's only 1.3cm), I've had a mamogram and a breast ultrasound with various benign cysts there too, plus while my thyroid seems fine, my oestrogen and progesterone are totally out of whack. I have a gynae appointment on tues to discuss this. I suspect my doc is going to suggest hrt and I'm not sure how I'm going to deal with this.........

    Any thoughts/advice???? Any suggestions would be VERY appreciated at this point, since I live on the tiny island of Malta and we have no dedicated clinics or ME specialists here!!
    xxx
  15. creekfeet

    creekfeet Sockfeet

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    Dr. Donnica, that article will be such a boon to us all, with so many pros reading it.

    Like everyone who has posted here my picture is a mess, so much to sort out or unsortable.

    History of dysmenorrhia and fibroid-like or endometriosis-like pain predating ME by decades. No fibroids found, fibrocystic ovaries in 20s have evidently cleared up now, no confirmation of endometriosis, and my gyn tells me all the pain could be from FM but I didn't have ME/FM until 3 years ago... so...? The only measure for possible comfort she could suggest is 10mg progesterone for 12 days starting on day 16 of cycle, 3 cycles in a row, to try to reduce unusually heavy lining build-up. But now I learn that progesterone makes some of us have flares and sure enough I've been flattened lately (more than I would have expected from my push to get the socks project off the ground).

    So my answer to "Why Gyns Need to Know About CFS" would be, because it exponentially complicates an already-complex picture. Drug sensitivity, reactions to hormones, dangers of anesthesia, ability to carry infants to term, possible heredity of the condition, etc: all these things I've learned so slowly as a cognitively-challenged patients are things my gyns should have known.

    Plus, what about that little note that endo can predate CFS? Any chance that women with certain gyn problems should be particularly monitored for possible development of CFS?

    For all your work, a thousand thanks.
    Creek
  16. flybro

    flybro Senior Member

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    the 'twang' thing I've had on both sides at the back of my head, feels like a springs just doinged off, it dosent rteally hurt when it happens but it makes me go OW. I find it hard to describe it to ppl.

    I've have cysts as well, I had a hysterectomy in my late twenties, was put on HRT in my mid thirties, it was an awful experince, my live seemed tobecome an emotional rollercoaster. However I was never able to take the contraceptive pill either, both my grown daughters have hell with contraception too.

    I dont know how much you have read on XMRV but I beeive that some hormones can make the XMRV worse.

    i'm not sure but I think its estrogen and nope I cant remem the pther ones, hopefully someone else will fill that in or point you in the right direction.



    i also lived in Malta as a tot way back in 66-68/9, Ihave also been told that I drive like a Maltese taxi driver, or did when I drove.
  17. filfla4

    filfla4 Senior Member

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    LOL!!!!!!!:D Know exactly what you mean! They're notorious!!!!
  18. lululowry

    lululowry Senior Member

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    In the last five+ years (since my ME/CFS has activated), I've gone from a clock-work, trouble free menstrual cycle to not. Basically, my gyno symptoms have followed along with my other symptoms, becoming increasingly noticeable and problematic over time. Unfortunately, they are no easier to pin down. The pain in my pelvic region comes as goes, as do some of my other non-gyno symptoms - they are maddeningly inconsistent, so if you don't have a doctor who understands CFS, you can feel crazy. After increasing pain and achiness, I had an ovarectomy 3 years ago because of a 6 cm dermoid cyst. Although that cyst was removed (and they checked the other ovary to make sure it was okay while they were in there), I now have such majorly heavy periods that I can feel myself getting anemic - and indeed I am now anemic. Along with menorrhagia, I have a lot of pain in my remaining ovary, which has been repeatedly checked for cysts, etc. (no cysts) as well as pain in my "ghost ovary". I have had two of the kinds of cysts that fill up with fluid - they wait a cycle and always go away so I have not had to undergo surgery again (something I am eager to avoid if possible). I have been thoroughly checked for endometriosis which I do not have it. Basically, my doctor can't find a growth or a reason for my pelvic pain or menorrhagia, any more than she can find a reason for my leg weakness or blinding headaches.
  19. wciarci

    wciarci Wenderella

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    Hello Dr. Donnica,

    I have had endometriosis, ovarian cysts and uterine fibroids. I could not conceive. My libido from a scale of 0 to 10 is about a 1. The endometriosis predated the CFS while the cysts and fibroids came after. I do not have a problem with yeast infections. Hope this helps. Thank you.

    Wendy
  20. Advocate

    Advocate Senior Member

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    I knew a moderately ill CFS patient who became severely ill after a Provera challenge, and never returned to baseline. I don't know if she is XMRV+.

    Advocate

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