The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Progesterone, infections, lung disease and the role of female hormone status in ME/CFS

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Sep 16, 2016.

  1. charles shepherd

    charles shepherd Senior Member

    Progesterone, infections, lung disease and the role of female hormone status in ME/CFS

    Some interesting new research is being reported today on how progesterone - a hormone that forms part of the contraceptive pill - plays a role in the response to infection, as well as possibly helping to repair lung damage

    Press report here:

    Information from the MEA leaflet on research into female hormone status, the menopause and the use of hormonal drugs in ME/CFS:

    Professor Tony Komaroff (1) et al in America examined whether menstrual and gynaecological abnormalities precede the onset of ME/CFS. They looked at 150 women with ME/CFS and 149 controls and used questionnaires on menstrual, reproductive and medical history. The ME/CFS group reported increased gynaecological complications and a lower incidence of premenstrual symptomatology. Compared to controls, a greater number reported irregular menstrual cycles, periods of amenorrhoea (= no periods), and sporadic bleeding between periods. Factors suggestive of abnormal ovarian function – e.g a history of polycystic ovary syndrome/PCOS, hirsuitism (= excessive hair growth) and ovarian cysts were also more common. They concluded that frequent anovulatory (= no ovulation takes place) menstrual cycles due to hyperandrogenism (= polycystic ovary syndrome) or hyperprolactinaemia (= raised levels of the hormone prolactin) may increase the risk of ME/CFS. This is through the loss of the potential immunomodulatory effects of the female hormone progesterone in the presence of continued oestrogen production. They also hypothesised that frequent anovulatory menstrual cycles due to PCOS may help to explain the increased reporting of gynaecological complications and lowered premenstrual symptomatology in ME/CFS.

    Boneva and colleagues from America (2) looked at 36 women with ME/CFS and 48 controls using a structured gynaecological history questionnaire. The ME/CFS group reported higher rates of pregnancy, gynaecological surgery, pelvic pain unrelated to menstruation, endometriosis, and periods of amenorrhoea. Menopause occurred about 4.4 years earlier in the ME/CFS group. More women in the ME/CFS group reported having a hysterectomy and oophorectomy (= ovary emoval) than controls. These findings stress the need to take a proper gynaecological history from women with ME/CFS.

    Here in the UK, gynaecologists John Studd and Nicholas Pany reported in the Lancet (3) that an oestradiol patch and cyclical progestogen therapy may help women who have a premenstrual exacerbation of symptoms with low levels of serum oestradiol.

    1 Harlow BL et al. Reproductive correlates of chronic fatigue syndrome. American Journal of Medicine, 1998, 105, 94S-99S.

    2 Boneva et al. Gynaecological history in chronic fatigue syndrome. A population-based case study. Journal of Women's Health, 2011, 21 - 28.

    3 Studd J and Panay N. Chronic fatigue syndrome. Lancet, 1996, 3478, 1384

    MEA leaflet:

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    erin, dangermouse, merylg and 4 others like this.
  2. Dolphin

    Dolphin Senior Member

    Unfortunately I have little confidence with the Boneva et al. study. It used the so-called empiric (Reeves et al., 2005) criteria (2.54% of the population).
    Hutan, flybro and barbc56 like this.
  3. TigerLilea

    TigerLilea Senior Member

    Vancouver, British Columbia
    I never had any of those problems and I was right on target for menopause at the age of 52 which is the average age.
    Hutan likes this.
  4. charles shepherd

    charles shepherd Senior Member

    This is a useful (2002) review of CFS gynaecology written by my colleague Rosemary Underhill:

    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.

    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 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.


    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.
  5. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    thanks, this was on great interest to me as I had PCOS with hirsuitism for 10 years before I got ME/CFS (though it took 20 years before I saw a specialist who diagnosed it).

    Having ME/CFS though made my periods far more painful.. extremely painful (my painful periods have now been fixed and made my regular.. regular periods which I'd never before had in whole life. are fixed with an extremely low carb diet. So my hyperinsulinemia caused by the PCOS obiously played a part in my painful periods. Its amazing to me that diet change can give me regular periods with no pain.

    Calicum in my own experience and this has been shown in non ME/CFS studies to help PMS too (I tried lots of other things but they werent helpful at all). I find 1200mg calicum can help with PMS symptoms. (but I need to take it daily for it to work for this and I find I have to be on it for a couple of months before the affects of it come in. . I used to get the symptoms right back the following month if I stopped taking it).

    B6, SSRI (I tried Loven? Lovan? I think it was called which my dr had said is often good for PMS) and evening primrose oil, taking those all together in my case were all useless and hadnt helped my PMS at all. (and I couldnt take estrogens due to being estrogen dominant due to the PCOS). All that SSRI did is give me side affects.

    It took me over 10 years of extremely painful doubled up and even fainting one time due to pain, periods before I discovered calicum helps. (I no longer need to take the calicum due to fixing that with diet)
    Last edited: Sep 16, 2016
  6. charles shepherd

    charles shepherd Senior Member

  7. Tilney


    ACTH, HRT & The Wonderful Mr Panay

    Very briefly –

    In 1999 at the age of 36 I was bitten/stung by an insect & was given intravenous hydrocortisone followed up by four days on prednisolone.

    During the next couple of years I was diagnosed as having CFS/ME (by seeing a consultant privately) & as having a premature menopause (by seeing a rheumatologist privately)

    I asked my GP to refer me to the Harold Wood hospital CFS/ME clinic who after a few outpatient visits suggested they would take me as an inpatient but my local PCT would not agree to fund this.

    The Harold Wood hospital did recommend I had –

    A radio isotope scan – this showed increased uptake of dye in the joints

    A lip biopsy to rule out Sjoegrens syndrome - the local NHS rheumatologist decided this was not necessary.

    A glucose tolerance test – this required having an ECG - I had an ectopic heart beat

    A 24 hour synthetic ACTH test – this took over a year to arrange BUT

    I had the last blood sample taken on the Tuesday morning about 9am & felt absolutely fine, back to my pre 1999 self -so good that I decided to go shopping & got home about 8pm. I was convinced there was a cure & my life could resume as prior to 1999. However by Friday morning I was feeling very ill. My husband took the day off work and phoned my GP who prescribed a short course of tapering prednisolone.

    I went back to see the endocrinologist for the results & explained that I had felt absolutely fine on the Tuesday & was expecting him to respond completely differently to the way he did. He explained that my test results were normal & that some people did feel euphoric after having tests done.

    Meanwhile my HRT adventures were going on –

    First gynaecologist at the local hospital – no periods – go home & take a pregnancy test

    Second gynaecologist at larger hospital - small dose of HRT tablets. This made a slight difference to how I was feeling & having read that the amount of HRT obtained via tablet depends on the absorption rate through the body I asked if I could be put on a higher dose but was told to wait until after I had completed a CBT course.

    I read an article in a weekend newspaper about Professor Studd & HRT for CFS/ME & asked my GP to refer me to the hospital mentioned in the article as I believed that ACTH & HRT are very loosely working on the same pathway but by the time my appointment came through Professor Studd had left the hospital.

    I have been under the care of Mr Panay & his team for approx. 12/13 years I believe they have helped improve my quality of life enormously & I will be forever grateful.

    I have changed from tablet HRT to patch HRT in a much larger dose.

    I have changed from tablet progesterone to a Marina coil. I had found the tablet progesterone gave me very very painful “periods” & the Marina coil has eliminated the need for “periods”

    Apart from feeling so much better, more mobile & able to do more the higher dose of HRT has also stopped the episodes of what I have called going into “Shut Down Mode”

    The best way I can describe it is a complete loss of energy, total drained & feeling incredibly cold. The only thing I have been able to do is get into bed or lie on a sofa with a couple of blankets or duvets and go to sleep for a few hours. It’s happened apparently randomly, even when the weather has been in the 90s & just trying to move to readjust the duvets induces more shivering.

    Dr James Le Fanu had readers both male & female writing for a few weeks to his column in a newspaper about something similar happening to them approx. 13 years ago but I unfortunately didn’t see the final answer & the increased dose of HRT had stopped this happening. I have just tried looking this up on his website but have not been able to find an answer.

    My new GP thought the dose of HRT I was on was far too high & another doctor thought it was the cause of symptoms I was complaining about.

    My friend’s husband has been diagnosed as having MS & we have been looking it up on the internet – I have some of the MS symptoms so thought the prescription drugs available to MS sufferers might be able to help with CFS/ME symptoms but according to my new GP there is nothing I can take.

    On the basis that I will try anything that might help I stopped using the patches for 8 months & the MS type symptoms did not disappear but the “Shut Down Mode” symptom started again. The HRT patches went back on immediately & the “Shut Down Mode” symptom hasn’t happened again.

    I do not believe the increased dose of HRT caused any of the MS like symptoms as I would like to think there should have been some decrease in symptoms after 8 months without HRT.

    I know there are possible long term risks involved but I believe the HRT is the only thing that has helped me carry on functioning at an increased level for the last 12/13 years.
    erin, dangermouse and flybro like this.
  8. justy

    justy Donate Advocate Demonstrate

    I have had awful gunae issues all my life. endometriosis dx in my late teens early twenties. advised to have another baby, so I did, then another, then another - only being pregnant made me feel truly well. I tend to have too much oestrogen, but now im very perimenopausal I have no idea what is going on in my body.
    dangermouse and flybro like this.
  9. Tilney


    Just realised I have spelt it wrong - its a Mirena coil.
    Try asking your GP how it works but to the best of my knowledge its a slow release of progesterone that stops the lining of the womb building up
    All I can tell you is that its stopped me rolling around on the floor once a month
    dangermouse and flybro like this.
  10. WoolPippi

    WoolPippi Senior Member

    Interestingly it doesn't mention Progestrone deficiency as the root cause for PMS, endometriosis and Adrenal problems.

    Progesteron is the building block from which Cortisol is made, the long term anti-stress hormone that also dampens the imune system (which is kind of a drama queen and often overreacts). This Progestrone is produced by the adrenals themselves, in both men and women.

    If in females ovarian Progesteron is insufficient (PMS being a telltale symptom) the adrenals substitute. This can lead to adrenal exhaustion. CFS.

    Also: THERE IS NO PROGESTERON IN ANTI-CONCEPTION. They contain Progestin, a different molecule, with side effects. Real Progesteron has no side effects. Cannot be patented so it isn't lobbied much. Your doctor can prescribe it, in Europe the brand is called Utrogestan, and there is over the counter creme. I use both.

    Dr. Lee, What your doctor may not tell you about (pre)menopause., book.
    Dr T Hertoghe, endocrinologist in Brussels, consultancy for adrenal functions
    my own experience with Prog. deficiency, HRT and Adrenal Insufficiency
    Last edited: Oct 7, 2016
    erin, Paralee, flybro and 1 other person like this.
  11. TrixieStix

    TrixieStix Senior Member

    I wanted to point out that Sampson's theory of "Retrograde Menstruation" as the cause of endometriosis dates back to the 1920's and doesn't hold much water, and few knowledgeable Endometriosis specialists believe it anymore. Sadly Sampson's theory of reflux menstruation is stifling progress in research and treatment of endometriosis.

    Below is a link to writings by one of the world's top Endometriosis specialists Dr. David Redwine (he retired a few years ago) where he does an in-depth run down on why Sampson was almost certainly wrong. (the entire endopaedia site is a wonderful resource)

    I myself suffer from severe Endometriosis and had 2 major surgeries last year as a result. Thankfully I was able to seek out the care of a skilled Endo specialist/surgeon who trained with Dr. Redwine. When I was diagnosed with Endometriosis (during a surgery for an ovarian tumor) and told I likely also had Adenomyosis I turned to the internet to research the disease and separate fact from fiction. Dr. Redwine was the best resource I found as he dedicated his career to endometriosis (his wife has it) and researching the disease.

    Did you know men get endometriosis? It's rare but does happen. Thus hinting at it being a disease one is born with. My grandmother had it to the same degree I have it, and had to have surgery at the same exact age as I did.
  12. dangermouse

    dangermouse Senior Member

    I have Adenomyosis and it often causes worsening of ME symptoms along with horrible symptoms that relate to itself.

    I've seen a gynaecologist recently who said I could try the Mirena, after reading up on it I didn't fancy it.

    I know for a fact that my severe bloating is down to this condition (Adenomyosis, one of the worst aspects of it) but the (newly qualified) gynaecologist said no and referred me back to GP who decided I had IBS. If it is IBS then it's hormone induced as it always ties in with the Adenomyosis symptoms, similar to premenstrual bloating.

    It's getting difficult to bear. I was seriously considering a hysterectomy as three weeks out of four can be severe bloating and worsening of ME symptoms. I don't feel I can go to GP as this would be third time and I think it may fall under MUS. I'm not imagining these symptoms, I can't fit into my clothes when bloating bad.

    I'd love to be able to go private as I have little faith in NHS after last time seeing the inexperienced gynaecologist. The first one I saw said I'd be OK waiting till menopause and as oestrogen will decrease the condition will disappear. This was about three/four years ago. I'm in my late forties.
    Last edited: May 30, 2017
  13. daisybell

    daisybell Senior Member

    New Zealand
    @dangermouse I'd never heard of that before but it would explain my symptoms... I've tried the mirena and it was a disaster. I'm now on the progesterone-only pill and that isn't helping either! My life is one constant period at the moment.
    I've got a referral form for an ultrasound but I haven't organized it yet because it's expensive... I had an ultrasound last year which showed nothing. It's so frustrating... I'm 45.
    dangermouse likes this.
  14. dangermouse

    dangermouse Senior Member

    @daisybell I was offered the same pill too but didn't want that as I don't tolerate contraceptive pills well.

    It's horrible to deal with on top of ME.

    It is very frustrating. Once again (as with ME) I feel fobbed off, disbelieved and left to deal with it.

    I honestly can't wait for menopause and hope the gynaecologist is right and it all clears up.

    Sending you big hugs.
  15. daisybell

    daisybell Senior Member

    New Zealand
    dangermouse likes this.

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