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newbie with hormone questions (Read 6914 times)
la woman
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newbie with hormone questions
03/23/13 at 02:19:42
 
hi all, i am a 40 year old recently married and my mast cell issues came to a head when i turned 34 (years of major professional stress, bad relationship and childhood abuse) i think for me this is not only hereditary but also very much stress induced.......

anyway it brought with it giant fibroid tumors, a pregnant looking belly(no baby in sight) and 20 lbs weight gain. i was always thin and ate whatever i wanted...no more or that let me tell ya;)

so my question is...i know for me without a doubt my mast cell issues flair big time when i ovulate and when my estrogen is highest...and my fibroids are estrogen based.....has anyone had a hysterectomy (full) and felt better? is the hormone fluctuation a problem for most women with mast cell issues? oh yeah, and hi everyone:) thanks for letting me join
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KatFromMD
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Re: newbie with hormone questions
Reply #1 - 03/23/13 at 05:43:15
 
Welcome and sorry you have to join us!

I had very bad problems with monthly hormonal fluctuations causing tremendously bad menstrual symptoms, heavy bleeding, lots of pain, which made all of my other problems so much worse.  I was diagnosed with adenomyosis, which is endometrial cells growing in the uterine muscle.  I had an endometrial ablation (Novasure in my case) and it eliminated my period entirely, and all of my GYN-related symptoms with it.  What it does is basically cauterize the uterus.  I have no idea if this would help with/be possible if you have fibroids, but it is something to discuss with your doctor before having a hysterectomy.  It was a really simply in-office procedure, but you have to be very careful with the prep meds and the anesthesia.

I definitely still have loads of mast cell issues, but at least they're no longer exacerbated every month by the GYN issues.

I've actually lost a lot of weight because everything I eat seems to trigger me, but I can relate to the looking pregnant because my belly often bloats tremendously when I eat!
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Lisa
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Re: newbie with hormone questions
Reply #2 - 03/23/13 at 06:24:27
 
Hi there LA and welcome!

Yes, I also had fibroid tumors, two of them, and the year my masto was coming out of hiding the doubled and then tripled in size forcing me to "deal" with them since large fibroids are a threat to hemorrhaging.  Excessive menstral hemorrhaging can cause heart damage by draining your system of too much blood.  Since I could not do any hormonal therapy to help reduce them, I opted to do a hysterectomy.  I kept my ovaries.  My masto was forced out of hiding with the hysterectomy.  Because the MC disease was latent, I underwent the surgery without any premedication and because the surgery and anesthesia were so traumatic and interacted with the latent MC disorder, the masto showed itself during the surgery and thereafter.  I underwent slight hemorrhaging during and following my surgery, reactions to IV narcotic pain meds and anaphylaxis and syncope a week later and the symptoms kept coming on one after another from that point on.  When the flush was finally seen by my gyno and he raised the flag to carcinoid syndrome or mastocytosis my symptoms were well established.  It took me another year to rule out carcinoid and find a masto specialist and gain the support of Dr. Castells.  

When we ran my hystectomy biopsies through mastocytosis immunohistochemical testing we were astounded to find an MC hyperplasia of 110x/field in my cervix tissues.  My gyno couldn't make anything of it and so we asked her opinion.  She believes that the the hypergrowth of the tumors was indeed related to the latent MC disorder coming out of hiding.  The MC hyplasia is known to occur in Systemic Mastocytosis.  My gyno was then able to affirm that the hemorrhaging the occurred during and after surgery was caused by my being put into anaphylaxis during surgery itself as well as all of the other symptoms which complicated my recovery.  

Now, as to the fibroids being "caused" by the masto, this is an area of study which has yet to be embarked upon.  However, MCs have recently been proven to be involved in breast cancer.  And it is long known to be involved in endometriosis since the uterus is rank with MCs and are key to the endometrium.  MCs are responsible for angiogenisis & blood vessel health - an intregal part of the reproductive system.

The hormone release responsible for menstration forces the MCs to release heparin and thus this iniciates the bleeding process every month. There are known cases of where a complete hysterectomy (oophorectomy) have brought relief for mastocytosis patients and in some cases is suggested for those who have more involvement and hormone related activity.  However, in my case it was the complete opposite.  I never had any problems with my menstration and we had no clue of a mast cell disease.  It was the removal of my uterus which triggered the latent disease to come out of hiding.  Yet it was the physical trauma and the interaction by the medications which likely did it.  In retaining my ovaries, I still do not have any increased activity with ovulation.  

So, in saying all of this, I think that this is a decision worth asking your doctor to contact Dr. Mariana Castells in Boston to see what she may recommend.  I have heard that she does indicate this as treatment for some patients, however, I think this is a case to case decision for perhaps it will bring improvement, perhaps not.

I hope this helps!

Lisa
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la woman
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Re: newbie with hormone questions
Reply #3 - 03/23/13 at 07:51:37
 
thanks for the replies! Lisa, i don't think masto causes the fibroids per se but i do think estrogen does...actually i don't just think that it's a fact;) which means for me atleast i'm swimming in estrogen...and my lab tests confirm this. so my thinking is based along the lines of..."if estrogen causes mast cells to be unstable"  then wouldn't removing estrogen fluctuations from the equation equal some form of relief? i.e. removing the ovaries along with the uterus...i have no use for mine anyway, childless and happy about that:) just thinking, since my grandmother died very young of ovarian cancer and i have monster fibroids maybe this is a no brainer....though Lisa i do heed your warning of the post surgical issues. did sodium cromolyn help calm that flare down for you? also does dr. cassells respond to emails from non patients? also do you have any additional info as to patients who improve post hysterectomy? thanks sooo much!
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Lisa
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Re: newbie with hormone questions
Reply #4 - 03/23/13 at 15:37:13
 
As to the root cause of fibroids....that's totally up for grabs.  I know that estrogen feeds their growth, but I don't think that is the cause.  Estrogen feeds some kinds of breast tumors as well but that still is not their cause.  These are tumors and like all tumors, be they malignant or benign, there is a genetic aberration going on.  MCs have been proven to be involved in some breast cancers for most cancers come forth from areas of inflammatory response.  Where there is inflammation, there are MCs.  Tumors also need blood to feed them and where there are blood vessels, you have MCs.  It's really a very complex process and I've just finished an amazing book on cancer called The Emperor of All Maladies.   I HIGHLY recommend it.  It does not touch upon mast cells or mastocytosis, but it helps gain an insight to blood related cancers as well as tumors, etc.

As estrogen causing MCs to become instable, that too is not the best reasoning because MANY things cause the MCs to activate.   The "instability" you talk about is that of a MC disorder in which the MC degranulates too easily.  Heathly MCs must degranulate and it's like having a zipper on your jeans which won't stay "up".  The slightest thing causes that zipper to fall down and no matter how many times you pull it back up, if you sneeze or laugh or anything, that zipper flies open again!!!  A most annoying thing!!!   The normal working zipper must be opened manually because it locks itself in place.  It will only release if you force it to release whereas the one with the faulty connection will just slip down on it's own and the next thing you know somebody is hopefully telling you your fly is open!!!!   See the difference?

As to removing the ovaries, as I said, there are some cases and I remember stumbling across one or two in my initial days of reading, but I never kept a copy of them because at that time I was looking for cases more like mine.   Try googling  mastocytosis and hysterectomy and oopharectomy or ovary removal and estrogen - if I remember well I was googling along this line.

I've never taken sodium cromolyn, but what calmed down my masto was using Singulair and Ketotifen in high doses.   I am no longer taking those medications.  It got too expensive for me and I've found to my tremendous amazement that I am doing VERY WELL on just Loratadine!!!   I have times of outbreak issues, but things have calmed down tremendously.   I'm hoping to return Singulair and Ketotifen to my armaments for Singulair restores my energy and Ketotifen is the MC stabilizer which we are MUST HAVE.  Ketotifen has been out of stock here in Brazil and I've been forced to go without it, but this may be changing shortly so I will be returning to using this vital medication soon, I hope.

I hope this helps you!!!


Lisa



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la woman
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Re: newbie with hormone questions
Reply #5 - 03/23/13 at 16:57:56
 
HI Lisa, thank you, the info you gave is very helpful. i'm still waging my bets on estrogen being the common denominator though because i've read in several pub med articles that estrogen causes cells to multiply hence my thought process on the fibroids and the fact that they shrink after menopause when estrogen levels drop... and in rats that have had thier ovaries removed they stopped having mast cell related asthma symptoms but when they received estrogen replacement therapy the symptoms came back....those are just the tip of the iceberg in regards to the research i have done which gets me to a place where i'm even considering removing my ovaries to get relief from these issues.  here is a link with an example of the connection http://www.karger.com/Article/Abstract/236217

i am able to control many symptoms thru diet and avoidance and sodium cromolyn has been helpful...i also take natural and herbal antihistamines like oregano oil and eucalyptus oil but during my high estrogen times very little seems to quell the fire of inflammation and reactions. i can literally lay in bed and feel my nerves firing if that makes sense...i'm just trying to look at every logical solution as to what is happening inside my body and to dissect it and get to the root cause instead of just treating the symptoms. soooo, i may just be going down a dead end with this estrogen thing but i sure hope not...in fact mayo since january of this year is conducting a trial using tamaxofin, an estrogen blocker for mast cell disease treatment  http://clinicaltrials.gov/show/NCT01334996
maybe some other ladies who are either on HRT or had hysters can chime in. again Lisa, thanks for your thoughts and taking the time to explain them
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Re: newbie with hormone questions
Reply #6 - 03/29/13 at 07:01:14
 
I had slight symptoms starting 2007 but nothing I couldn't really bull my way through it wasn't until a partial hysterectomy in 2008 that my system totally crashed like 2 weeks after. I have never fully recovered. I had a partial due to adenomyosis of the uterus....apparently no known cause....I also suffered from very high estrogen levels and could only take a progesterone only BC pill. I too have often wondered how my hormones have played a part in my illness....but none of my specialists see a link...they just say the surgery triggered the dorment mast cells......oddly enough I just had a skin biopsy come back positive for EDS another thing I had no clue I suffered from.....weird how these illnesses work.....

Bren
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