A Brand New Forum

[icnmgrjill]

Thanks to a great conversation I've had this morning with Alisa, I've created this brand new forum for those of us who are struggling with hormone changes. I, for one, am in hormone hell with perimenopause, hot flashes, anxiety, anger... and it's just crazy right now. :evilsmile

Need a place to vent, ask questions??? This is it! Enjoy!

Jill

[lissad]

Hi Jill .. Thank-you so much for creating the forum . The flare's and PMS are like a perfect storm that can take a normally functioning sick person into a mental state of hell. This forum should ( and will) release some of the tension we all feel. Thanks again for your great work . Lisa

[lisabar36]

Thanks. :) I had my hysterectomy Feb 21st, I am on the vivelle dot hormone patch 0.1 mg, so far I have not had any menopause symptoms at all, I feel better now as far as mood then I did before my surgery, I think my hormones were a mess before surgery. Also the vivelle dot patch does not hurt my bladder as I hear pills can be hard some IC'ers, but I know we are all different. :)

[ICNJess]

Great idea! My IC becomes worse during ovulation and my period. I'm in a flare-up now thanks to the former!

[Claredale]

That's a great idea.

[Trishann]

The other day my husband and I was in the car driving to the store. My husband was freezing so he up the heat, as for me, I stripped off my coat thinking then I be ok. No, then I reach for the heater and turn it off and roll down the window, I was suffocating being so hot. Then after it is pass than I am freezing. :loco:

Hugs, Trish

[A.J.]

I'm so thankful this forum was created. My PMS and periods are as bad, if not worse, than my IC symptoms, and it's nice to have a place to discuss it all. Thank you!

[GriffsMommy]

Jill,
Thank you so much for creating another wonderful section of to the boards. I am having menopause like symptoms now that I am on the Lupron injection and am in pure hell. I don't know what is worse, the hot flashes or the night sweats. The Lupron headaches def is the worst of all.
I can't wait until my hysterectomy on April 3rd and then I can get hormones more even and hopefully won't have so many problems. I am sure I will be visiting this section after my surgery so thanks again!

[VickiB]

Wow, this is like -just in time!

I'm in that transition time of life, technically still perimenopausal, and have lots of questions that I'd thought about posting on the over 50 board.

Thanks for a section to post my questions in!

Vicki

[izazen]

My hot flash (and I had terrible ones) advice is this:

Always dress in layers so you peel off things when you get hot - you can always put them back on afterwards as so often the chills will follow the flashes.

Always have a bottle of water with you and when you feel a flash coming on start drinking water - somehow it, psychologically, it mitigates the heat of the flash. I used to drink many swallows until the flash passed. This helped me tremendously.

I set up a little mini electric fan by my bedside and would sleep (still do, actually) in a cami top and briefs. On the bed I would just have a sheet and a light-ish comforter. When a flash would come on I would flip the fan on my face, drink some water (bottle by the bedside) and throw back the covers. After it passed I would get the chills, cover up, and go back to sleep. You can leave the fan on all night if you want.

I bought a battery mini fan for my purse and , when possible, would turn it right on my face - it seemed to me that my face and upper body got it the worst. Sometimes I would put the fan on my hand and it would be effective. Other times I would run cold water on my inner wrists.

Good luck, hope these tips were helpful.

[Vicki]

Well, I for one am so glad to see this discussion. I had my hyst. two years ago and have spent a lot of hours on the Hystersisters message board to sort out all of my hormone issues. The bad thing is that most of the women on there have no experience with IC. So, it will be helpful to talk with other ICers who have to deal with the extra challenges that IC presents when it comes to menopause, Hormone Replacement Therapy, etc.. Menopause, whether surgical or natural, makes your body do some crazy stuff. I was totally unaware of all the things that can go wrong when you don't have adequate estrogen. I figured hot flashes and mood swings would be my only problems. Boy, was I wrong. I have memory loss, headaches, vaginal itching, acne, anxiety, insomnia, etc. when my estrogen is low. It took a long time for me to sort all of that out. I would have never made it this far if it weren't for being able to communicate with other women who were able to help me put the pieces of the puzzle together. That is also how I have been able to deal with IC. I feel so blessed to have found this forum. I am truly thankful for each and every person here! :smile tee
-Vicki

[lissad]

welcome . So glad you found us I hope this forum will grow to become a place for all of us to get "sanctuary" awy from the rest of the world . This is a place to vent , say anthything where no-one will judge you .

[chuchideb]

I too, am looking forward to this forum. Great idea. I had a full hystrectomy in 2004 and have been told that I am estrogen enemic. Basically I suffer from severe menepausal symptoms. I too, sleep with a fan a foot away from me, and have used that with a sheet for the last 2 years. My hot flashes are horrible it rushes up my arms and stomach to the top of my head and then hot hot hot! LOL I have actually tallied them and timed them. 16 severe hot flashes during an 8 hour period. I am now on a climara patch 0.1 mg and have 0 hot flashes. I don't know what I would do without this patch (i tried everything) but totally worry about taking these hormones since they say it is bad for me, so for now i choose the sanity of the patch.

[sugar]

What type of dr do ypu see for suspected hormone problems and issues? I saw my GP yesterday and asked for my hormone levels to be checked via bloodwork. He refused; said another dr would have to do that but who? He agreed to ck my liver, thyroid, nutrient levels. Should I see my ob-gyn? Please help. I'm only 38 but have awful painful periods. Plus I've had 3 miscarriages. I wonder if my problems, along w/IC. fibro, CFS, endo, PFD, IBS, depression, anxiety, etc is hormonal. Or thyroid. My GP said we would wait for the other blood work to come back, and we may try a small dose of thyroid med or B-12shots. He said those were outdated and old treatment. I just need some energy and I'd like to have a baby. Can I with all these conditions? I've read IC improves w/pregnancy. I can get pregnant; just can't stay pregnant. All three miscarriages occured around the 5-6 wk. I'm feeling emotionally ready to try again. But I'd love to have some things checked out before hand.
Any advice is appreciated!
Thanks!
Annette

[dyno]

This forum will be a great addition for us. I am also in the wonderful perimenopause time. I am still having periods but they are starting to space themselves out. I had one a few weeks ago that lasted about 7 days but it had been 56 days since my last one.

I have not had any hot flashes to speak of yet, maybe I will be a lucky one.

[Julie B]

woo hoo! :woohoo:

A place for "us!"

[mary124]

I had a partial hyster. in May of 2000, and I just recently started to have night sweats!! No fun. I go to bed and a few hours later i wake up totally soaked from head to toe --then after changing everything, I'm freezing, when my husband comes to bed later he notices that I am on his side of the bed so he goes and sleeps on the couch, luckily this doesn't happen too often but I know one week it did for 3 nights in one week.
Every once in a while I do have hot flashes,again my husband wishes though I would get over them soon, but a friend of his said that it will take a while and told him "you guys will just have to fight over the heater/air conditioner!!"

[barefootdyke]

i keep a hair clip in my purse for those moments when i have a hot flash because when it happens, i ABSOLUTELY HAVE to get my hair up off of my neck ... i'm in panic mode when it happens and it's almost like i feel like i'm choking or something, and the hair is only on the back!!! weird huh?

for my night flashes, i have a remote controlled fan in my room, because i found that if the fan is within reach, it's too close, so the remote is nice.

my doc prescribed effexor to help with the night flashes/sweats but i stopped taking it becuase i can't afford $30 a month for the prescription!!! but it certainly helped when i was taking it!

[missusg]

I can see this becoming one of my favorite go to places.
I am scheduled for blood work on Wednesday. My GP has finally agree to test my hormones levels. I am 41 and had a hysto in 1996. I believe I have been having mini hotflushes for the last 3 or 4 years.
On another note, I have my appointment for my first SANS treatment on Thursday of this week. I am so hoping that they will work. I will not get my hopes up but we shall see. I had a very difficult weekend with a nasty flare that peaked on Saturday night. Thank goodness it went away before the Leonard Cohen concert last night.

thanks for starting this forum.

[bladder]

Anyone around my age - 39 and getting hot flashes and night sweats? I have had a bunch of tests done but all come back neg. I am wondering if is the meds - Elmiron or antidepressants? Does anyone just have IC? We all seem to have other problems connected to this disease...

[glassd18]

Wow great thread!! I too have suffered hormone issues since I was 35 as I had premtature ovarian failure (I'm 43 now so I'm not really considered prematurely menopausal anymore). I'm on the Climara Pro Patch, but have troubles with pain in my joints, and shoulders and arms. I also get puffy eyes. I'm really tired of trying to find something that doesn't do something negative to me.

Hey Bladder I think the Effexor can give you hot flashes. Some anti's can do that, and I think some can help that too.

[samandmichelle]

I have not spoken with a doctor yet, but wondered if anyone out there had a similar experience and could offer advice. I got a hormone panel and my hormone levels are post menopausal or lower. I have been on continuous bc since October to avoid the pain of a period. That being said my overall estrogen is 117 (normal range being 69-437, depending where in the cycle a person is). This does not seem too bad, but shouldn't it be in the upper range of the normal because of the continuous BC? Any feedback or help people can give for coping with the craziness and the pain would be appreciated.

Thanks!

[c2miracle]

Hey Everyone! Great topic! I had hysterectomy in 2006 with a bladder lift at same time.(that's how I met current Urologist) I was doing fine (so I thought) until a couple of months after, and that is when the "symptoms" started FULL FORCE!!:bonk: I was confused,:confused: I really wasn't sure what it was because it would only last a day or so. I'd been having night sweats (so bad I would wake up totally soaked) and also dealt with insomnia. Chalked it up to daily stress! I am only 39 (same boat as you are "Bladder") Now I have some sort of clue what is going on. Being diagnosed with IC has made sense. Love this forum and thanks to everyone for there support and kind words!:) Think Positive!
:grouphug:
Colette

[justice4j]

She knows alot about hormones having worked in a women's clinic for women experiencing abnormal hormone problems.

[amaranthe]

I have a heater and a fan in my bedroom. My body is so mixed up...I am running the heater in JUne for an hour, then the fan and a/c for an hour! LOL! My poor husband! Though he and I may fuss about ALOT of things, I can say one thing for him...he NEVER touches the thermostat or my heaters or fans! :smile tee Sweat may be pouring off of him or he may have the chills, but he just grunts and bears it! (Then again, he's probobly too cold under those covers to get up and turn the fans off and A/C back to normal! :lmao:) I like to think he's going thru it with me!:evilsmile He didnt get to experiance labor pains, childbirth, postpartum depression, cramps, menstral backaches and diarrhea, the sex caused UTIs or the IC, but at least he can share this one with me!:evilsmile (I know! I am terrible!)

[Grammy]

There are many hormones besides estrogen that most likely would need to be tested. I wonder where you can find a doctor who would know about these things and how to make you feel better.

[Grammy]

Being in pain is not fun but for me I have been more or less in a severe state of anxiety for almost fifteen years and I have yet to find anything that helps. I had a hysterectomy with the removal of the ovaries in 1994 and had an immediate prolapse of all the genital organs. I have had five surgeries to try to correct this and now I found out that I have prudendal nerve entrapment on both sides and the surgery to fix this is gruesome. The one thing that I have not tried is estrogen and I am wondering if that would help me with anxiety. So any of you that have had anxiety issues but are better taking estrogen will you let us know. Thanks for this forum as many of us need it. I am 62 and my 82 year old mother has more energy than I do seriously. Still trying to find a website about the SANS treatment as to the exact placement of the needle.

[wolfaleena]

hi Grammy just read your post about being in pain ... do you have a pain management physician. Do you take anything for pain/
i know what you mean about not having any energy and being in pain all of the time. I do take narcotic pain medication, it eases pain somewhat. lately i have been trying to find the right HRT therapy for menopause and having problems with several of the meds. They may have triggered this bizarre new type of pain i am experiencing .... The trouble with IC pain is you never know what will trigger it or what will fix it! I have very severe IC and it is difficult to control.
you are Not alone in feeling drained from IC.....
I hope you get some relief and just know you are not alone out there

[wolfaleena]

grammy: forgot to ask you if you take anything for the anxiety. I take Ativan and it does take the edge of the anxiety issue from the helpless feeling that IC can leave you with. Others I know take Valium ... I also have used Kolonopin. Ativan seems to help a bit with my anxiety levels. It also has a slight muscle relaxing effect. Also do you take anything like Neurontin for the Nerve entrapment pain? i am on Neurontin as well. Don't know if it is helping, but am afraid to go off of it, for fear that I might experience a greater level of pain.
My doc has actually said that the pain has just taken sort of a life of its own so to speak. It is acutally become just a chronic condition.
hope i have helped you in some small way
Keep the faith..
living with severe IC can make you feel like you are on an emotional rollercoaster. One minute you are trying to be normal and the next minute you are frantic with pain searching for a bathroom only to find there is a line for the restroom.
I hate IC....