Ammenorhea....

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Gloria
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Post by Gloria »

What a relief to know that you don't have a tumor! I hope you can get some treatment to increase your hormone levels.

Gloria
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CathyMe.
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Post by CathyMe. »

Thanks Gloria. Yes, it was a huge relief!
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Gabes-Apg
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Post by Gabes-Apg »

Cathy
i am joining this discussion a bit late, it is the first chance i have had to write my reply.

Since teenage years i had menstration issues, ie i didnt menstrate. Every 6-8 weeks i would have strong cramping pains (which i now know to be the gut issues not hormones) there were 2 instances during my teens, when i was hospitalised with chronic stabbing pains i couldnt move, couldnt eat, couldnt sit up, i am guessing this was the cysts bursting and my body reacting to the toxins and inflammation
Various tests, scans could not diagnose anything so the doctors labelled it 'growing pains'

at age 18 when i hadnt menstrated and i was entering the workforce it was decided to put me on the pill to keep things 'normal' and try and elminate the cramping pains.
this was ok for about 8-9years in this time i had 3 lots of bowel surgery and realised what the cramping pains were related to.

at this time i as thinking about having a baby, i stopped all contraception, didnt menstrate and after 12 months was diagnosed with chronic PCOS. Back when i was a teenager, PCOS wasnt commonly known so lack of menstration was not investigated like it is now.

without contraception, i couldnt cope with the hormones and digestion, i had constant digestion issues and time off work. (including D accidents) all i knew then, was that my body couldnt do PCOS and 'IBS' I started using the implant to control the hormones.

turn the clock forward 10 or so years. what i have learnt on this forum and about the toxicity and agression of inflammation, linked with my body's set up re my adrenals, any wonder my body couldnt cope with the PCOS and 'IBS'

12 months ago i had the implant removed, with the MC under good control i wanted to deal with the hormone stuff. i have had one small spotting period a couple of months ago, and my current treatments are looking at removing the toxins from the contraception, deal with the inflammation the Thyroid is causing and to get the hormones and digestion working happily!

this is not easy, i know what you mean about the mood swings.!!
it is like cleaning a 40 year old oven that has never been cleaned, layer upon layer, needing multiple attempts to gradually get rid of the guff.

this may not answer your concerns but it may give you some insight into the relationship with hormones and digestion

my question is, what concerns you about the lack of menstration? once you have it confirmed there is no structural issue (tumour or cyst etc) medication to make you menstrate may cause other issues with the thyroid and with your MC -
if you are supplementing your Vit D and calcium then there are no major concerns in not menstrating
Gabes Ryan

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Gloria
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Post by Gloria »

Interesting, Gabes.

My daughter, who is a couple of years younger than you, was diagnosed with PCOS in her late teens. She also has been diagnosed with "IBS." Both of her daughters were invitro babies. (She tells everyone that; it's even on her Facebook page, so I'm not revealing anything she doesn't want known.) She was very thin all of her childhood, but now is probably 100 lbs. overweight. She was diagnosed as pre-diabetic in March and has managed to lower her A1c by one whole point since then.

I can't get her interested in the slightest to go GF. She says she will never eat the way I do. She just called yesterday and said she and her 7-year-old daughter have to have their tonsils removed because they've had strep throat 4 times since the beginning of the year. I feel like she's a walking time bomb, but there isn't anything I can do.

I never considered that her PCOS and "IBS" were related. It seems like gluten is a multi-headed monster.

Gloria
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Gabes-Apg
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Post by Gabes-Apg »

With my bowel issues, there was always big risk i would not handle pregnancy with out major issues, so if i wanted children, adoption was the only option, ie overseas adoption very expensive.

the more i research inflammation, toxins etc the more i realise how interconnected all these conditions are.
if you continue to consume things that cause inflammation, or continue activities that create inflammation, if you have these types of health issues, then you pay the price.... (infections that wont go, IBS, joint issues, fatigue issues)

it was when i learnt about the PCOS etc, was when i started being GF/YF about 80% of the time, and after doing a liver detox realised that i could not tolerate lactose.
for those years, if i ever got constipated i only had to have some icecream and the C would be gone!

its a shame your daughter is not willing to be pro-active and reduce or eleminate the chance of MC developing by reviewing the eating plan.
Gabes Ryan

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Gloria
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Post by Gloria »

Gabes,

She could have MC now, but it may be the increase in Glucophage that is causing her D. She said she's had D for two weeks straight. She's a teacher, so it isn't easy.

It's funny; she gives other people with digestive problems my name to contact for suggestions. She knows what she should do; she just doesn't want to do it. I'm not the best example for using diet to resolve MC, though. I believe in it and practice it, but it's just not working for me like it does for others. I wish she would go on this board so she could read about others' successes.

Gloria
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CathyMe.
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Post by CathyMe. »

Gabes-Apg wrote:Cathy
i am joining this discussion a bit late, it is the first chance i have had to write my reply.

Since teenage years i had menstration issues, ie i didnt menstrate. Every 6-8 weeks i would have strong cramping pains (which i now know to be the gut issues not hormones) there were 2 instances during my teens, when i was hospitalised with chronic stabbing pains i couldnt move, couldnt eat, couldnt sit up, i am guessing this was the cysts bursting and my body reacting to the toxins and inflammation
Various tests, scans could not diagnose anything so the doctors labelled it 'growing pains'

at age 18 when i hadnt menstrated and i was entering the workforce it was decided to put me on the pill to keep things 'normal' and try and elminate the cramping pains.
this was ok for about 8-9years in this time i had 3 lots of bowel surgery and realised what the cramping pains were related to.

at this time i as thinking about having a baby, i stopped all contraception, didnt menstrate and after 12 months was diagnosed with chronic PCOS. Back when i was a teenager, PCOS wasnt commonly known so lack of menstration was not investigated like it is now.

without contraception, i couldnt cope with the hormones and digestion, i had constant digestion issues and time off work. (including D accidents) all i knew then, was that my body couldnt do PCOS and 'IBS' I started using the implant to control the hormones.

turn the clock forward 10 or so years. what i have learnt on this forum and about the toxicity and agression of inflammation, linked with my body's set up re my adrenals, any wonder my body couldnt cope with the PCOS and 'IBS'

12 months ago i had the implant removed, with the MC under good control i wanted to deal with the hormone stuff. i have had one small spotting period a couple of months ago, and my current treatments are looking at removing the toxins from the contraception, deal with the inflammation the Thyroid is causing and to get the hormones and digestion working happily!

this is not easy, i know what you mean about the mood swings.!!
it is like cleaning a 40 year old oven that has never been cleaned, layer upon layer, needing multiple attempts to gradually get rid of the guff.

this may not answer your concerns but it may give you some insight into the relationship with hormones and digestion

my question is, what concerns you about the lack of menstration? once you have it confirmed there is no structural issue (tumour or cyst etc) medication to make you menstrate may cause other issues with the thyroid and with your MC -
if you are supplementing your Vit D and calcium then there are no major concerns in not menstrating

Thanks for sharing your experiences Gabes. You bring up an interesting point of view that I never thought about....the no period thing. I have not missed it @ all, LOL, but realize it's not a normal thing. I am more concerned with the accompanying no libido, fatigue, excessive thirst and a few other weird symptoms that I experience. I will let you all know what my endo. suggests and am researching ALL options @ this point. My Vitamin D levels are high as are my B12 levels and my PCP suggested that I stop all supplements @ this point. Thanks again!
CathyMe.
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Post by CathyMe. »

I met with my endocrinologist today...she went over my blood test results and showed me my MRI (cool stuff!!) and went over that as well. Her thought is that since my pituitary gland appears to be normal but that there is no signal from my hypothalamus and pituitary, that it is likely that my LC has suppressed and shut down my reproductive system ): This disease really SUCKS! My poor body has been put through the ringer! She put me on a trial of provera, to see if that will "jump start" my system and restart my cycles but she was not really optimistic about this. If this doesn't work, then she will prescribe a Birth Control combo. of progesterone and estrogen. I am really hoping that my gut tolerates this and that I get some relief from fatigue. This is a really good lesson to myself and all of us to LISTEN to our bodies.
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Post by Belle »

tex,
are you saying that birth control pills might prevent someone from going in to remission?
what if you have no choice but to be on them since i can't get pregnant while in this flair. it would be pretty unsafe and would not help me get better. unless by some luck the pregnancy can put me in to spontaneous remission
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tex
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Post by tex »

Belle wrote:tex,
are you saying that birth control pills might prevent someone from going in to remission?
Unfortunately some women with MC have that problem. I'm not sure how high the percentage might be, but it seems to be somewhat common.

There are two possibilities for women with MC who become pregnant. Either their MC symptoms become worse, or their symptoms diminish to the point of remission or near-remission. Hardly anyone is unaffected one way or the other. I have a theory that for those whose MC reactions are dominated by mast cells, their MC will probably go into remission for the duration of pregnancy and lactation, but in cases where mast cells are not the primary issue, then the MC symptoms will probably become worse, due to the hormonal changes. That's strictly a theory, of course, and it's untested in the real world.

My theory is based on the fact that during pregnancy, very high concentrations of diamine oxidase (DAO) are produced by the placenta (up to 500 times as high as the normal level). This is part of the mechanism by which the immune system is prevented from rejecting the fetus as a foreign invader, but IMO, this level of DAO would effectively suppress any residual levels of histamines, for example, and possibly other inflammatory agents released by mast cells. Officially, as far as mainstream medicine is concerned, at this point no one really knows why some women go into remission, and others get worse, during pregnancy.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Belle »

I still don't understand. putting pregnancy aside are the birth control pills themselves bad for you and can they be making things worse?
Belle
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Post by CathyMe. »

Belle,
My understanding of BC pills and hormones in general, is that they can make MC/LC symptoms worse and many folks use a transdermal patch rather than take oral pills, as they are easier on your system. I am on day 2 of oral pills and have not had any negative symptoms so far. I figure I will wait and see and go back to my endo. if the pills upset my stomach.
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tex
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Post by tex »

I agree with Cathy. They definitely can cause problems, but not necessarily for everyone. We have at least one or two members who also cannot use the transdermal patches without reacting. There are no easy or sure solutions for everyone.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
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Post by Gabes-Apg »

Due to my long term IBS and high risk of not absorbing meds properly, way before my MC Dx, i used the implant (size of matchstick in your upper arm) for 9 years. each implant lasts 3 years, it is a relatively painless thing, done via local anesthetic.

like most hormone meds/treatments, some people react, i had no issues whatsoever. It is the most cost effective, in Aus the script costs $60 and then it is just the fee to have it inserted.

Here in Aus there is a Govt subsidised family planning womens health organisation, Pap Smears are free, things like the implant procedure is only $40.
a private GP will charge anything from $150 - $250 to do the implant procedure.
I find the doctors in these centres are 10x more informed, educated and aware of current health issues (they know more about MC and inflammation than any other GP or specialist)
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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Post by brandy »

Hi Belle,

I was on and off the transdermal HRT patch while I had WD, b/f diagnosis and b/f I found this website. I don't believe that it hindered my healing in my situation. That being said I know that you have really suffered for a while with this disease....there is always the barrier method of contraception perhaps for a couple of months. The diaghragm is not a big deal, you get fitted for it by gynecologist, pop it in after dinner, take it out in morning and just get in a routine of it. Around 94 % effectiveness. Side effects are probably nominal compared to BCP. I don't think it is prescribed much anymore but is probably used by women in "situations"---like us. Then there is always the fallback for single people. Condoms. Not terribly romantic but you get used to it.

I'm not a scientific person but I believe the thought is that women are more likely to get MC due to some kind of hormonal link.

Hope you feel better as I know you are struggling. Brandy
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