Lack Hormones and MS

[slightlybroken]

Hi everyone. I've been around lately. Mostly lurking. I haven't felt very good since my kids went back to school. I found out yesterday that I have to have another surgery. The cyst on my last remaining ovary has grown and the doctors feel that they need to remove it. I have to go later today and talk with the doctor about this.

I had a hysterectomy back in 2005, due to a prolapsed uterus. They removed my uterus and cervix, leaving the ovaries behind for hormones. In May, I lost the left ovary due to a large cyst that developed and decided to move things around plus to make matters worse I had DVTs (blood clots) in my left leg. Within weeks of the surgery I developed another cyst on the right ovary. They wanted to "watch and see" what it would do. Well, instead of shrinking like they had hoped, it grew.

I know I have to have the surgery to remove the cyst but should I also have them remove the ovary too. I'm not sure if I'll have a choice in the matter because like I said earlier, I haven't been to the doctors yet. The fact is that I can still make these cyst as long as the ovary stays which puts me at risk for other problems. The surgery will be risky too because I will have to go off my blood thinners for at least 5 days prior to surgery. (At least I have my vena cava filter.) I can't keep having them go in and removing cyst. It's not good for me or the ovary. On the other side is the hormones..or lack there of. If I have the ovary removed I won't be able to take HRT because of having blood clots. I've always heard that hormones in women have a direct effect on bones and the heart and I don't want to add more problems to what I already have. Here I am, 35 and won't have hormones for the rest of my life. Do I really want to do that? As you can see I'm in between a rock and a hard place.

I'm also thinking about MS. What effect, if any does lack of hormones play on that disease? (if it turns out that I do have it). If anyone could tell me I would greatly appreciate it.

If the doctors do decide it's best to remove the ovary it will be like me going through menopause right now and once my hormones are gone they are gone and then I'll be post-menopause. I'm trying to keep my spirits high. It's kind of hard sometimes when family and friends try to be funny about the situation and make comments about growing a beard or being an "it". I don't find it funny at all and it does hurt my feelings sometimes. I cried when I had to have a hysterectomy because I was loosing something that made me a female. I actually morned. I know it's silly but I did. Now I'm down to one ovary and possibly removing it. I feel like everything that makes me female is being taken from me but I know I need to do what is best...but I'm not sure what that is. There is pros and cons to keeping the ovary or removing it.

I'll discuss my options with the doctor...(if I have any)..When I saw the ultra-sound, my ovary did look pretty bad. I know what an ovary is suppose to look like and mine didn't look like that...so wish me luck.

Livin up to my name
Slightlybroken

[IndieSky]

Even if you have a hysterectomy and they take your ovaries HRT is the way to go but you should find a Dr. that will prescribe bio-identical hormones. Also, with MS they have done trial studies in which they have found that Estriol, the weakest of the Estrogens and the one women have when they are pregnant reduces MS lesions dramatically. By the 8th mo. of pregnancy their lesions have subsided by 75-80%. The reason women get cancer from HRT is because they use synthetic hormones which are made from pregnant horse urine. Not anywhere near to the hormones our bodies make. Bioidenticals are made from wild yams and are very similar to our own bodies. You will have to get them at a compounding pharmacy and they are very reasonably priced. For example, 120 pills of my estriol costs $65. The progesterone you can buy online at http://www.****.com/progesterone.html It is $28 for 1 months supply. I will find out tomorrow how much the progesterone is at the compounding pharmacy as it's more convenient than waiting for it in the mail. My doc has prescribed 8mg. per day of estriol and at least 100 mg. at night of progesterine. Do not use progestins as they are synthetic. You can find a doc that will prescribe bioidenticals and ask for a topical (cream). Here is a great article on bioidenticals: http://www.****.com/fehoreth.html and some info about the estriol studies: http://suite101.com/article/estriol-therapy-in-multiple-sclerosis-a69720 and another: http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1878/
I do not take the shots anymore. I have chosen to take LDN (low dose naltrexone) and haven't had a relapse since starting it 2 years ago. At the moment I am going through perimenopause and had endometrial ablation 2 yrs ago but now menses is back and I'm going to a bioidentical endocrinologist to get my wacky cycles back on track. Women can take bioidenticals well into their 90's. Here is a list of the benefits of bioidenticals: http://www.****.com/ Hope this helps. Please research and figure out what is best for you. I know this post was from a few years back but maybe it can still help.
Indie

[Sunnytoday]

Hey there, thought I'd throw in my two cents for what it's worth. I'm 20 and at age 18 was dx'd with extremely low estrogen. They can't figure out why, but they just said for some reason, at about age 17 or 18 it just stopped working in my body.... (yes, my weight is normal right now and was then too, I get asked that). Sooooo.. it appears that I'll be on meds for a LONG time!

I laugh right along with my mom who is hitting menopause right now, because I tell her that if I handled menopause at 18, then she can handle it at 47! Really though, my symptoms are all managed now, and I don't have the hot flashes and night sweats, etc. Anymore.

I do hope that this the shot works for you, and if you do need surgery, you are able to find a medicine that will replace your hormones that is safe for you!
~Sunnytoday~

[Fluffysmom]

Surrounding you with hugs while you deal with this latest chapter in you life.  Maybe you could write a medical thriller; one with a happy ending at last, of course.

My best friend had a reaction to penicillin when she was still quite a young woman, and developed Stevens Johnson syndrome (sp?)  Her hormones completely shut down, she grew a tumor, and needed a complete hysterectomy.  Her hair turned white, too.  This was before I met her, but I can tell how traumatic it was to her.  

She is also still totally a woman.  She sees an electrologist fairly often to remove the extra dark hairs that show up on her chin and lip; makes her feel much better about herself.  She tried electrolosis,but that doesn't work that well if you have (normally) dark hair; takes lots of treatments and is more expensive.  She has her hair dyed.

She is able to use a hormone patch, so her story is different.  She also has a pituitary tumor that keeps her from producing hormones, so she also has to inject human growth hormone.

If you were to see her lower back and neck MRIs; well, I'm just saying that there are al ot of us that are slightly broken.  And are still very much loved.

Hugs and love,

Kathy

[slightlybroken]

Thank you all for the comments and your crossed fingers. I figured I would give it one last effort to see if it will work. I just don't want to have no hormones at my age. I guess I'm thinking of the effects on my body long term and believe me, I don't want to add another problem to my full basket.

Shell- I remember the discussion of MS and pregnancy. That's why I was wondering if it would have any effect on no hormones compared to the increase in hormones you get from pregnancy. Don't cross your toes too long...I hate toe cramps lol.

Rena- My thoughts exactly. I think it would be beneficial to me to hold on to this ovary as long as I can and avoid surgery. But if it comes down to it...I might not have a choice. The thing keeps getting bigger. According to the doctor, I have several cyst so I'm hoping that this shot will work.

humming4u- Thank you for your kind words. I know, no matter what happens, I will still be the women I am...just with less body parts. lol...I've had a lot of female problems all my life and it did serve it's purpose for as long as it could. I got 3 wonderful children out of it when the doctors told me that I might not be able to have children when I was 17 yrs. old. Here's hoping that hormones have little to no effect on MS, just in case that is my DX.

[humming4u]

i'm so sorry to hear ALL you have going on, its a lot. but please know you'll always be the women that god formed you into in your mothers womb, always, your heart and soul is women, hormonal lost won;t change that, but the body might protest fro awhile, but thats just your body, not yourself. you are mother, wife, girlfriend, daughter, always and forever! please remember we here, are always waiting and willing to encourage and support you. hey, i still have every thing and still menstrate at 53, but honey, i have a whole lot of hair,,,everywhere,its a job i tackle daily, and i still feel very female...well after its all said and done:),I call my sons monkeys, and tell them its thanks to me!
I don't have a firm dx yet, but i do beleive that when the hormones are doing their high, i feel ten times worse, so maybe its not a bad thing  to not have in MS.
guess someone else could tell you more

[Rena705]

Hey honey...I have had the cyst on the ovary problem in the past but have since had an partial hysterectomy and they left my ovaries.  I had a cyst removed surgically years ago and they were able to leave the ovary.

I certainly hope that this injection helps to reduce the size of this cyst and you can avoid having surgery...I don't blame you for not wanting to lose this one and then having to deal with the lack of hormones on top of everything else you have had to deal with.  Please know that I have my fingers and toes crossed for you and let us know how you make out ok?  

Lots of Hugs,

Rena

[sllowe]

Slightly-B,

Gosh Girl! 2008 needs to be behind you already doesn't it? Man, oh, man.

Well, I do know that we've discussed hormones and MS in regards to pregnancy.  Other than that, I'm not versed in the topic.  

To me, it seems that you have to get these obstacles that are coming up.  You may just have to get rid (if it doesn't shrink) of it like you did the clots. It's obviously not the type of cyst that shrinks from month to month on it's own, or they would not be recommending this.  I'd hate the thoughts of hormone replacement too, and see your turmoil and trying to hold on to your dignity and self just the same.

On a good note, if you need the surgery, you'll be better off in the hospital w/your existing clotting issues.

My Gosh Girl! I'll keep fingers and toes crossed too until they cramp...lol...

Love and Hugs,
-Shell

[slightlybroken]

Well I came back from the doctors yesterday...and the news wasn't good. The doctor said that the cyst is too involved with the ovary and that it would be impossible to remove without taking the ovary too. As the way it stands today, if I choose surgery, the incision will be bigger than normal and I'll have to stay in the hospital for 4-5 days.

The other option (the one I took) is the one last effort to save my ovary. I had to get a shot of Deprovera (a birth control shot) to see if that will cause the cyst to decrease in size. I guess when you are on birth control, it can help with cyst, by decreasing the size or causing you not to even make them. The problem is that I can't have birth control because of the blood clots. My doctor felt that Deprovera would be safe enough to take otherwise there is nothing she can do but remove the ovary along with the cyst.

I have to go back in November to see if the shot had any effect. If the shot doesn't work...the only option is surgery and I'll have no hormones after that so, keep your fingers crossed and hope the shot works.

[Wobbly]

on no, you are sure going through alot now,,,, I myself had a hysterectomy when I was 39.. they left my ovaries...I had problems with my right one and they had to take it out.  I understand how you felt when you had them removed..I felt the same way... I was life changing situation...to yourself...you feel you life has changed..right..

I'm sorry you have to go through all this, but I think you will need to get the ovary problem fixed and the Dr will give you options... it's a difficult situation to be in ... when do you see your Dr?  

Let us know what your Dr says... be strong ..
take care and know we are here for you..
Hugs
andi