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Lessons from ME/CFS: Finding Meaning in the Suffering
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Gynecological problems - Xmrv

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

  1. lululowry

    lululowry Senior Member

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    I would add a word of caution about the pill/estrogen/progesteron - I have never been able to take any hormone as they have all made me very sick. This dates back to my first encounter with mono in 1982.
  2. leaves

    leaves Senior Member

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    I've had a provera challenge and am xmrv+ no major changes for me I think.
  3. Mya Symons

    Mya Symons Mya Symons

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    I wonder if these gynecological symptoms have anything to do with XMRV replication

    I am seeing a gynecologist for some of these symptoms. I have read that some doctors/scientists believe XMRV replicates in the lymph nodes and the sex organs. Further, they wrote that XMRV prefers certain androgens/hormones which it uses to replicate and it's favorites are progesterone and estrogen. I wonder if this is why we get all the gynecological symptoms and are low on certain hormones? Also, if this virus does somehow use and prefer to use female hormones to replicate, is this the reason more women have this disease?
  4. Mya Symons

    Mya Symons Mya Symons

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    Thicker than Usual Uterine Lining with Smell

    Don't read if squeamish.

    I went to see the gynocologist recently. He said I did not have endeometriosis, but I had a thicker than usual uterine lining (on the inside). It was about 2 or 3 days after my period had ended and it was too thick for just a few days after my period. He wants me to go in for a biopsy for endeometrial cancer. I have another symptom which is slightly embarrassing. I sometimes have discharge that smells almost like something rotting. He asked me if I had unusual discharge and then asked what it smelled like. When I described the smell he seemed to get worried. I couldn't find anything on the net about it. I am wondering if the strange rotting smell can be a symptom of endeometrial cancer. Has anyone else experienced this? (Eventhough I have been married for 14 years, I was tested for STDs. Which I was not happy about because I had to pay for them. All those tests came out negative.)

    I have become reluctant to spend more money on tests and have been putting this off. I have had the experience so many times where something is a little off and I go in for tests that almost invariably end up negative. Plus, I owe him a lot of money and have way too much medical debt.

    Does anyone know if it is common to have a thicker uterine lining with CFS or XMRV? Has anyone heard that there is a higher then usual rate of endeometrial cancer with CFS or XMRV?

    (I have also had the occassional ovarian cyst. They suck. They feel like labor minus the baby.)
  5. taniaaust1

    taniaaust1 Senior Member

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    Mya.. i havent heard of there being a higher rate of endometrial cancer in CFS.. but why really knows, sounds like you need tests.

    Interesting as this is my issue.. polycystic ovaries which would of predated the CFS as my periods have been irregular all my life.
  6. maryb

    maryb iherb code TAK122

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    Myra please don't worry too much about smell - lots of different bacteria can get active in females and they are the ones that create the smell, relatively simple to treat with a/biotic gel/pessaries etc. Given our inability to cope normally with infections I would suspect that first.
    Hopefully your biopsy will be normal, which means you just have a thicker than normal uterine lining, who knows if its a symptom of ME, we know nothing really do we.
    Really hope things turn out okay and you don't have to wait too long to find out.
  7. onebush

    onebush Guest

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    Hello Dr. Donnica,

    I lived in the GYN's office for years after the birth of our daughter. I had every infection and "itis" and you can think off. Finally it was decided to take a look. I ended up with a total hysterectomy at the age of 32. The doctor said there was so much scar tissue and fibroids there was no other choice. It was almost a year after than that I felt strong again and then the allergies started. The GYN I have now is becoming more and more interested. I was with him when I first became sick. He was puzzled and said something was going on but did not know what. He has been full of questions, he must be thinking there is a connection. I have not tested yet for XMRV but I will be very surprised if I do not have it.

    Keep up the great work you are doing and thank you!

    Margaret
  8. urbantravels

    urbantravels disjecta membra

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    I would also tend to assume the smell is an ordinary run of the mill bacterial vaginosis, which can smell pretty bad. Or, er, um, so I've heard. It's not an STD, it's more or less a case of your natural bugs getting out of whack. They can run a test for it. Flagyl (metronidazole) is what they give for it.

    Thicker than usual uterine lining is called endometrial hyperplasia. It doesn't automatically mean cancer but it's something that should be monitored as it has the potential to develop into cancer. I have a good friend who had an endometrial biopsy and said it was Not Fun, but it's better to know.
  9. Mya Symons

    Mya Symons Mya Symons

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    Thanks. This makes sense since I have had bacterial vaginosis several times since becoming sick. It is often been bad enough to get up to my cervix and cause it to bleed. I did not think of asking the doctor if that could be the reason for the smell. Yes, I really have to get that biopsy and stop procrastinating. I'll be honest--I have also been avoiding the test because it hurts. I have had two uterine biopsies before. I need to stop being a wuss :).
  10. forgottenstar

    forgottenstar

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    I had a biopsy done on the wall of my uterus about 6 months before coming down with the virus that I believe has caused me to be where I am at today. I was 12. They said that it was too thick but the biospy came back ok.

    For the past 3 or 4 months my periods went from being timed on a clock to completely sporadic. I had my normal period, then two weeks later started bleeding so heavy with so much pain that I thought I was having some kind of miscarriage. I went to the doctor who took all the normal test swabs (STDs etc) and also performed a transvaginal sonogram. They found nothing. I went to another doctor who tested for more STD's as well as a thyroid problem, and again, nothing. My period came again about week after the severe bleeding period (which lasted almost two weeks), and since then, Ive only had the symptoms of my period, but no actual bleeding. I am still taking my bc pill every day.

    The only thing they say they ever find is that the lining of my uterus is too thick.

    Since they did the biopsy, I have complained about the unusual amounts of discharge I have, especially after my period. They never seem to find a cause for any of my gyno problems.
  11. u&iraok

    u&iraok Senior Member

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    I just found this on wiki:

  12. colinmb

    colinmb

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    Don't know if anyone's still looking at this thread but here goes. My daughter, Anna, has been suffering CFS symptoms for a couple of years. Recently making some tentative progress by following Freddd's protocol. I've been helping her in various ways because she doesn't have the energy to fight all alone. Anna has a nasty menstrual crash every month, which sets back her recovery prospects severely, if not back to square one. Has anyone with a similar problem been successful using oral contraceptives to prevent these crashes? We're very reluctant to go down the oral contraceptive route because taking powerful drugs with wide-ranging and unpredictable effects might undermine Anna's CFS recovery. On the other hand, any recovery is being seriously undermined by the menstrual crashes. Separately, though relatedly, Anna has been taking iron supplements to try and help with the menstrual issues, but we are concerned because we read that it can destroy some of the (Freddd protocol) supplements she is taking. I've not been able to find anything definitive on the subject, though I did see somewhere that the Fumarate form (which is the one she is taking) is supposed to be OK. Anyone have any thoughts on that?
  13. Mya Symons

    Mya Symons Mya Symons

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    ColinMB: Yes. The symptoms were so much worse right before my period and during. DIM has helped a lot. It is supposed to convert the bad estrogen to good estrogen. I take Olympian Labs DIM and twice the dosage. It has helped so much that I would definitely recommend she try it.
  14. justy

    justy Senior Member

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    Hi - yes I have also suffered terrible premenstrual exacerbations, thankfully not so bad these days. My daughter who may also have M.E (its a long story) has problems with her periods which are made MASSIVELY WORSE from taking hormonal contraceptives. I personally don't think they are ever a good thing if health is bad, but that is just my opinion.

    I have had a lot of success treating menstrual issues, especially PMS and it making my M.E and lung issues worse every months by taking regular herbs, prescribed by a medical herbalist. It was slow, but has made a real difference.

    All the best,
    Justy.
  15. colinmb

    colinmb

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    Mya - thanks - I'd not heard of DIM but am I right that it could help in a case of excessive estrogen? But not in a case of deficient estrogen? I don't know what Anna's situation is with regard to hormonal balance - need to get tested. I've been thinking that it's more likely she's estrogen-deficient, in which case (unless I'm wrong) DIM won't help but maybe estrogen patches wouldn't be as disruptive as the regular combined oral contraceptives.

    And thanks Justy also - you're confirming my doubts about hormonal contraceptives, but can you tell me what these herbs are?
  16. justy

    justy Senior Member

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    I'm afraid that I cant - mine were prescribed by a medical herbalist, she would take a detailed history and then make up a tincture, just for me of several herbs. I also found her immune support tincture very useful. One of the herbs that can be useful for PMS etc. is Agnus Castex.

    I believe that you can buy tablets of herbal preparations, but I don't know if they are as effective as tinctures.

    Bio identical hormones would be another route you could go - but she would need to be tested to see what is out and where, and then need to be prescribed these by a suitable practitioner, I am not sure who deals with this kind of thing, not sure if you need a naturopath or a medical doctor.

    Medical herbalists are very knowledgeable and they are around in most areas - the local health food shop should know of one. Be aware though that a 'herbalist' is not the same as a medical herbalist - they undergo a much longer and more rigorous training.

    All the best
    Justy.

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