DES Daughters & Women Who Can't Take HRT

For those of you who are just beginning this wonderful process, here we can narrow down the symptoms and ask questions like "am I starting perimenopause?"

DES Daughters & Women Who Can't Take HRT

Postby Gigi40 » Wed Mar 22, 2006 1:59 pm

My mom was prescribed DES for a short when pregnant with me (in 1965). As a result, I have increased risk for cervical cancer and HRT is not recommended for me at all. In addition, I have migraines and an intestinal condition that also prohibit me from taking any kind of hormones.

I'm wondering if there are any other DES daughters here who can relate their experience and comment on how they cope with peri. I've always been very sensitive to hormonal changes, and this peri trip is a doosey!

Also would be happy to hear from anyone else who cannot take hormone replacement therapy (whether related to DES or not).

Thanks, ladies!

Gigi
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Postby DaMomma » Wed Mar 22, 2006 7:57 pm

gigi, I dont even know what DES is Hun,..but I did have cervical cancer. I did take HRTs for 3 years, and suffer from migranes sumphin fierce!

I will share with you that I have had one h*lleva peri trip. I have been off the hormones now since Aug, and boy it was not fun to say the least.

I was taking ALOT of vitamins, minerals and herbs, but in the past two months I have have been watchin what I eat and to be honest,...once I finally accepted that I was going through peri, and that it wasnt some horrible deases nor illness that was bringing on the "trips" it became alot easier to deal with.

The mental stuff is the worst I think, for me anyways. Would you care to share what all is/has been going on with you Hun?

I know there are some other gals that come here as well, that has had /has a poopy* peri too. Sometimes just asking and sharing helps too.

hugs Hun, remember ...even though you may not have one of us to embrace you "physically" we are here to help, validate and cheer ya on. Shoot some of us will even cry with ya.. :wink: You are not COMPLETELY alone girl ok?!
Are we there yet?!
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Postby Gigi40 » Thu Mar 23, 2006 2:20 am

DaMomma,

Thanks for your response. DES was an estrogen-type hormone used to prevent miscarriages in the years around 1945 to 1970-something. It was later found to cause increased risk of a rare form of cervical cancer and reproductive abnormalities in daughters born to women who took it, as well as causing reproductive abnormalities (sometimes infertility).

Anyway, because of the DES exposure, I am at a higher risk for cancer and other problems with HRT. I also have migraines that got MUCH worse when I tried birth control pills in the past, so I can't use those either.

As far as my peri experience, it has been increasingly difficult. Started with monthly hot flashes a few years ago. They weren't that bad at first. Now that I'm 40, I have more frequent migraines, and nausea is a new item that comes with them, especially around my period. The mental stuff is worst for me, too, and the hot flashes are often accompanied by a charge of adrenalin, hot flushed face and burning arms/chest, and anxiety feelings. Add to that a few days of insomnia and crashing fatigue right before my period (and I mean CRASHING!) and you get the picture. Blehhh! :cry:

How has your experience been since getting off the hormones? Bearable? What has helped you cope without the hormones? Any remedies you recommend?

Thanks so much for your support and encouragement! It's true that posting about it helps and discussing these things with others is so liberating - so glad I'm not all alone in this strange journey.

Hugs to you,

Gigi
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Postby DaMomma » Thu Mar 23, 2006 11:56 am

Hey Girl, Ok, Thanks for explaining DES to me. I know what you are speaking of now, I think our world has so many acronyms that it has become a language of its own! Sometimes my brain wont commute!

With my migranes, (which I have suffered from since I was 10), sometimes* when I feel one coming on, I can detour it by hurrying to my bedroom, (I keep my room dark..thick blanket over the window at all times), laying down, puttin in my ear plugs, and get ice for my head and shoulder.....(I get them on both sides...they change off and on.)

Also this has worked a couple of times...a gal from another site told me about this...now mind you that it does taste NASTY, but like I stated..it has worked a couple of times...take a heaping teaspoon of table salt and chase it with the blackest coffee possible. I was real sceptical when she told me about it, but by jove it did work, on my earlier ones. It took about 1/2 hour before it went.

Then theres the full blown, out of commission ones. Like you shared, the nausea, tunnel vision,hurts to even breathe ones. :( All i can do is take 800 mg. of ibruphen..(how ever you spell it)..dark room, ear plugs, ice and do not move and ride the dang thing out.

I can not take the shots..well I know I cant one of them for sure and I had such a horrible allergic reaction to it, I dare not to even try any of the other ones. I have tried the Magnesium..and sadly, it didnt do a thing for the migranes. With mine I cant find any rhyme nor reasons that may set one off. Sometimes its before a period, during, or just a lack of sleep. I havent found any food triggers with mine either :?

ARGH! the crashing fatigue...yup, picture it fully, been there, done that, hate it, dont want it NO MORE!

When I was weaning myself off the HRTs it went fairly well, BUT and I stress BUT* the following months...if I didnt have a couple of gals in my life, my meno-sisters, I would of put myself in a mental ward! Believe me I struggled not doing so!

I experienced increased PTSD..(which I have had since I was 14)...

anxiety, ..like I had to get away, pure panic attacks,... thoughts and feelings that I was dying,.. someone was going to come and get me,... that my kids were going to be taken away from me, ...that I was "losing it",... everything was so blown outta context, ...my kids hated me...

depression,... that I was no good,.. i wasnt ever going to survive, pure hopelessness and helplessness feelings and thoughts

ocular migranes...(it looks like I was seeing the world through a waterfall...very bizzarre thing!)

so dizzy that I would literally fall,

off balance sensation... like I was walking on one of those chain bridges one can find at a park, that when you walk across...you sway back n forth or like walking on a waterbed.

the most dreaded-The Elevator- :evil: ...this is what a few of us call the sensation...its like all of a sudden you literally "sense" something is about to happen to you...then all of a sudden you get whisked upward, then the cable is severed, and you plummet downward! There has been a few times that it actually felt like I was going head over heels in somersaults! :shock:

then the other symptoms as you have mentioned, hot flashes, adrenaline rushes, ...and others, itching, sore breasts, hot flashes and contractions in my "hoochie", tingling, numbness, insomnia..3 to 4 nights in a row without sleep!, fatigue, internal shaking , OUTWARD shaking as if I had Parkinsons' or something. :x

Hun, just look at the list of all the symptoms I have had all except the low libido. And yes, sometimes I would have 3 to 6 DIFFERENt things going on at the same time.

I will get back to you with what all I took for vitamins and such..and I also learned this, that whatever foods that is healthy for us and I craved..I ate it, sometimes weird combinations as if I was pregnant again...spinach salads, cottage cheese, cereals, (well there for a while I couldnt get enough ice cream either) fish, and lots of it and a potatoe at least once a day.

I will also write more later. As of right now I need to sit with Goober a bit and get some rest. I have been fighting some kind of bug that I have been fighting with since Monday.

Hang in there babe! It will subside..honest!
Are we there yet?!
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Postby colopam » Thu Mar 23, 2006 5:47 pm

Gigi

My mom was soo funny about things she'd share and what she wouldn't.. really weird so I don't know if she took DES when pregnant but I suspect that she did since I've had some findings that are abnormal.... the big one being a bifurcated uterus (it's basically two chambers) which according to my doc probably would hav prevented me from being able to carry a pregnancy to term. I do suffer from infrequent (TG!!!) migraines but then again so did my father.


I can't help but wonder at the drugs that have been foisted upon our predecessors (and even now for that matter) that haven't been really researched for long term effects.


Hugs Pam
It's never too late for a happy childhood!!
The more you live, the less you die!!
Well behaved women rarely make history.
DB: 1958
peri/hypothyroid/fibroids(myomectomy)
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Postby DaMomma » Thu Mar 23, 2006 5:54 pm

Gigi heres a list of the different ones I was taking...I am still taking the vit a,b,c,d's and also floic acid and calcium, magnesium and fish oilies.

Vit. A
Vit. B6 & B12
Black Cohash
Boron
Vit. C
Calcium
Vit D
Vit E
Flaxseed
Folic Acid
Garlic..(I eat 3 to 4 cloves..(not the whole bulbs!)a day
Ginkgo Biloba
Lysine
Magnesium
Omega 3, 6, 9

As far as my anxiety goes, I have gotten Cognitve Behavioral Therapy from my therapist and apply some of the training I recieved...calling a friend, my sister, or my two older child that have had C.B.T. as well. As soon as I recognize that I am having a P.A. I do the deep breathing using the diaphram...(Im trying to get myself into the habit of breathing this way and sometimes use the "paper bagging" method.

I also have xanax when needed...especially when I have been having any Flashbacks or nightmares.....

Has I have stated already, when I notice that in the past, when I get a craving..ESPECIALLY for "good foods" like spinach, cottage cheese, fish..I eat those foods right away. My diet is overall very good...except when the "I NEED ICECREAM!" hits....though i have found what has been working for me really well, is... I have taken pictures out of magazines, and cook books..and have the placed on my fridge and inside of my cupboards...of "Good" foods" that I look at when a "not so benefical" craving is gnawing at me. (I have a very visual brain..I see in pictures) so the pictures of YUMMY, delicous, nutriential foods help to replace the juck food cravings.. though I have yet to find one to get rid of the "ICE SCREAMS"...argh

I got close to a few other gals and we exchanged phone numbers and emails...They have been a HUGE LIFELINE for me. If you would be interested in havin mine, send me a private message and Ill give it to you, and visa versa.

Again, once I knew that all my tests had come back negative..MRI's, Catscans, Blood work, thyroids, MS...I knew then it was peri..so by reminding myself and having others remind me and encouraging me, was the ticket. By not fighting the symptoms, but "going with the flow" and most of all I think HUMOR...played/s a major "Medication"..I read funny books, like Erma Bombecks, trying to make light of the irrational thoughts and behaviors I was experiencing..(like when I thought I had poured a bowl of cereal for myself and it actually ended up being dry cat food! :oops: for example..)

Being around positive people and helping others was/is no matter what stage of life your in, is good therapy as well!

Putting into place personal boundries with others and even myself. Praying, stretching, soothing baths, with candles, being gentle on myself, and getting my priorities in line, like so what if the dishes isnt done, I NEED to laugh, so I would get a comedy dvd or vhs, and sit and watch it. Things that wasnt living nor breathing got put on the back burner...some days was just all I could do was to get up with the kids and get them off to school and then crawl back into bed. I know I had too.For 5 months. end of Sept '05 to about mid Jan '06 ... I do not ever want to repeat that again. In all my life and I have been through the wringers a time or two believe me, I would have to say, had been the scariest and most debilitating part of my 42 years,...but I have gone through it, and I do not feel like I did when I was 30...I have come to realize that those years and feelings are gone, but I can tell you, I have grown and I feel more stable in myself now.

Keep reaching out for answers Hun and reaching out to others as well. Even if all you can do is read posts and reply.."Hey I know what you mean" or "I havent experienced that before, but Im pulling for you"...can make a Large impact on the ones that have posted, and just to hear those few words do actually help. They have for me...

We all have something to offer, even if it isnt same experiences, but in encouragments, comfort, and validations.

Hugs Hun and Lifting you up...
Are we there yet?!
~~~~~~~~~~~~~~~~
born '63/peri since 2000
DaMomma
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Postby Gigi40 » Sat Mar 25, 2006 1:26 am

Pam & DaMomma, Thanks for your replies.

Yes, it sure helps to share the journey and know you've got some friends. Whew, what a trip this stuff can be! If you'd like to contact me and discuss things further, feel free to send me a private message - go to my profile and there's an option to do so.

Thanks again, ladies!

Gigi
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Joined: Tue Feb 28, 2006 5:58 pm
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