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Anyone gone through early menopause due to our autoimmune disease?

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Posted 3/22/2007 2:28 AM (GMT 0)
Hi gals.  This question is for you!

 

I've been away from the forum for a while due to some horrible health issues.  I'm dealing with a lot of depression, anxiety, late periods, missed periods, hot flashes, mood swings, crying spells, and the list goes on and on..... I just haven't been feeling like myself since January. 

 

So I took my list of symptoms to my doctor today.  She agreed with me that it is possible that I am going through perimenopause, or possibly premature ovarian failure (POF).  I'm 33 years old.  So next week, I'll be taking a bunch of blood tests to see if my ovaries are working properly and to measure my hormone levels.

 

Apparently, it is really common for autoimmune diseases to cause an early menopause or this POF disorder.  Up to 75% of women under the age of 40 who have an autoimmune disease can have this happen!  I was shocked to say the least.

 

So I guess I'm just asking a general question to anyone who has experience with this.  The depression and anxiety are the worst part of it all.  I was never planning on having children due to my lupus.  I have enough trouble taking care of myself some days, let alone a child!  Any support or ideas on how to get through the possibility of me having this would be so much appreciated.  It might turn out to be a false alarm, but the symptoms are all there. 

 

Thanks a bunch everyone.

 

God bless,

Ginny

Posted 3/22/2007 3:34 AM (GMT 0)
hey Ginny,I was wondering where you were,glad you are back!
As for the post,yes,I too have experienced this,however,it was the diagnosis before I knew of the lupus. I didn't know the stats were that high,holy cow!
I was told that family history was part of this,many have had early onset menopause,yet friends often say,''it can't be that,you're only 38''....wow,
all the hot flashes,MOOD swings,period problems,depression,fatigue,etc are turning out to possibly the lupus. During the not pleasant hot flashes,do you get to the point clothes start coming off and you start looking for anything cold to stand in? I am blood red,and though it was horrible feeling,I couldn't seem to catch a breathe sometimes,I felt like I was almost going to go nuts!
I would sweat between my toes even! I had the ceiling fan going at top speed,trying to cool down,and then get chills,and that prickly annoying feeling ...mine were more so at night,then at any given time of day or night,now more so at night again. I get burning in my face,upper arms,back,and chest-the worst being in the face. Do you feel faint or sick sometimes? It's sometimes hard to explain because I get panic attacks thinking I'm going to pass out or be sick. I learned not to go from a cool spot to anywhere warm because it makes it much worse.
what have you done for relief? You've really peaked my interest,no one around me seems to understand other than one friend with the same hot flash symptoms, she doesn't have the burning in any particular areas,but has daily hot flashes each morning and during the night.
Do you have swelling in your face when this happens?
Sure am relieved some one else can identify with this,it is bizzare.
Take care Ginny, crystal
Posted 3/22/2007 2:27 PM (GMT 0)
Hi Crystal!

 

You described my hot flashes to a tee!!  I get so hot that I swell up all over.  It lasts for about 5 minutes, then I get so cold that I have the prickly feeling all over.  It's awful!  I'm lucky to say that I have only had a handful of these in the last year.  But I had two of them on Monday which is rare for me.  My periods have been a tough thing to control for about 5 years now.  I am on the progesterone only BC pill and it does diddly squat to regulate my periods. The past 6 months have been completely screwed up.

 

Here's what is really nagging me.... I've been taking a med called Clobazam to control my seizures. I've been on it for almost 5 years now.  It's mainly used as an anti anxiety med, but works great for people with simple partial seizures too. It's a tranquilizer....

 

So, in December I went to my neurologist because the med wasn't controlling my seizures any more. He told me to start tapering off the drug.  Well.  My body didn't appreciate that one bit!  This med is very addictive if taken for a long time.  I thought the anxiety, depression, hot flashes, mood swings etc were withdrawal symptoms of coming off this drug.  It's been 3 months now since I did my first taper of the drug and I'm still having these symptoms.  My period got really wacky months before the tapering of the drug started.  So my doctor and I are thinking that this seizure med has been masking my anxiety, depression, hot flashes etc, maybe for 3 or more years!  I'm just now seeing what my body is actually going through.  Which is why we're wondering about early menopause or POF. 

 

I have a lot more of the drug to come off of.  I still have 30mg of the stuff to taper off of and I can only go 2.5mg every 6 weeks. It will take me a couple of years to be free of it.  So how bad is my anxiety, depression, mood swings going to get as I come off more of this crap!  YIKES!

 

My doctor has me on magnesium, extra calcium, and vitamin B6.  It is working well so far.  I should be in prime depression mode right now, but I'm not. If I do get more depression, she wants me to take St. John's Wort.   I can't take anti depression meds. I totally feeling as though I'm losing my mind sometimes too Crystal.  It's scary.  I know what you're going through.  Yes, I do feel sick and nauseated these days as well.  My appetite isn't what it used to be.  I've lost 10 pounds in 6 weeks.  Probably due to the stress of feeling so emotional, depressed and anxious, and not knowing what is going on and when it will stop. 

My mom went through a normal menopause and as far as I know, no one else has had issues. I think for me, if this is early menopause, it's from the lupus.

I'm so glad you can relate to what I'm going through too Crystal!  I'll let you know what the outcome is. 

Have a great, hot flash free day!

Ginny 

 

 

Posted 3/22/2007 2:34 PM (GMT 0)
Ginny,
I was 33 when I was told that I was starting perimenopause. As I understand it , it can last for years. I also have endometriosis so that was a factor in the whole thing.
Currently the only symptoms I am experiencing is night sweats the week before my period. I hope that you can get something to get you through this. I've heard that evening primrose can help but don't take anything without asking your doc first.
B
Posted 3/22/2007 4:22 PM (GMT 0)
Ginny, The symptoms that they had been telling me were from peri-menopause (hot flashes, sweats, etc) sure did disappear quickly when they started using prednisone to help control my lupus. What do you think? I think it was lupus all along!!!! Now I'm not as regular as I once was, but I'm attributing it to some of my meds, not to menopause (48 yrs old). (When I first starting being irregular, they did the hormone tests and said it wasn't menopause.) It sounds like they are doing the right things -- hang in there!
Posted 3/22/2007 10:02 PM (GMT 0)
(((( Ginny ))))) sorry to hear you haven't been feeling well, I was wondering what happened to you. The statistics on early menopause or POF disorder is shocking!!! I don't have any advise for you but wanted to give you some hugs and let you know you will be in my prayers. Hugs and love
Posted 3/22/2007 11:20 PM (GMT 0)
Thank you Bitzi, Lynn, and Stacie.  I appreciate your feedback on this.  It's pretty confusing for everyone involved to figure out what is a drug withdrawal symptom, a hormonal imbalance, or a seizure problem!  Eventually some answers will come!

 

I'll just keep track of my periods and symptoms and take it from there.  God will get me through this! 

 

Lots-a love,

Ginny

Posted 3/23/2007 3:16 PM (GMT 0)

Hi,

I am now 35, but when I was 32 my cycles started to become irregular, and I had several surgeries for fibroid tumors, scar tissue, and ovarian cysts.  My FSH level went from 5 to 35 :( and my doctor said I was not in menopause but in POF.  Although I had had 3 children naturally in my 20's, at the age of 33, I was told that my ovaries were not going to work and not only did I need IVF (which we expected because of my tubes) but donor egg? Sheesh!

I almost fell off of my chair when my doctor told me my FSH level was 35! thats the level of a woman in menopause! and I was 33 at the time. But before my joint inflammation etc.  However, I have never been told it is because of an autoimmune issue.

Posted 4/3/2007 9:23 AM (GMT 0)
hi ginny i an 22 from hull in the uk i have just been told that i have a autoimmuine disease which hasended up me not been able to have children i am really depressed and justkeep crying it breadks my heart as my mum is blaming herself. i think she is saying this to try and take my pain away . i havehad all the same symtoms as u and yesi am going through change .i really wanted to have my own little family.

pleasewrite bk to me tasha
Posted 4/3/2007 7:23 PM (GMT 0)
Hi Tasha,

 

Thank you for being so open to talk about what you're dealing with.  If you don't mind me asking, which autoimmune disease do you have?

 

I can understand your depression regarding the entire situation. I knew when I was diagnosed with lupus at 26, that I wouldn't be able to have children.  It hit me hard at first, and then I got a lot of peace about it.  God had something special in mind for each one of us.  Some are meant to have their own children, some are meant to not have any children, and then there are those who are called to take care of children who don't have a home..... Adoption!

 

My sister and her husband can't conceive either.  For what reasons, we don't know.  So they adopted the most precious wonderful baby boy.  Took him home straight from the hospital!  His name is Liam.  He is an absolute blessing from God and does not at all seem like he isn't ours!  (Or theirs!) hehe..  Sometimes, life throws curve balls at us.  It's what we do with those changes in life that will give us patience, character, and hope.  And, a wonderful life for another child.

 

It's okay to go through the grieving process of this Tasha.  Absolutely okay.  Cry as much as you need to.  Just don't let this take over your life.  You have so much to accomplish yet Tasha.  You're young and you need to have goals and dreams.  Remember, that there are little children out there who need you as a mommy!  Adoption is a blessing and maybe that's where God is directing your life.  You can still have your own little family.  Don't give up hope, okay.

 

I wish I had some answers about my ever changing hormonal situation too.  I don't have control over this, so I just give it to God to deal with for me.  I'm having better days, but wow, when the hormones swing, do I ever lose it!!  I'm a crying mess!  Crazy things those hormones!

 

I hope you have some encouragement from this Tasha.  (((hugs)))

 

Ginny

Posted 4/4/2007 10:05 PM (GMT 0)
Hi Tasha, gentle hugs and prayers for you. You are so young and have your whole life ahead of you. Grieve as long as you need to. Offer your suffering and grief up to God for some greater purpose. I truely believe that God has a special plan for each of us. Things happen for a reason and we might not understand why, but latter on in life, the reason will become clear. Think of all of the possibilties waiting for you. So many children need a family that loves them. You could adopt. Maybe you'll become a teacher and have many children. My friend was crying the other day because she can not have children anymore. I told her that her being a school nurse, she has many children to take care of.

Ginny says it best of all. She is very wise. Please read her words very carefully. You are in my thoughts and prayers Tasha, blessings and may peace be with you, Cecelia
Posted 4/4/2007 10:31 PM (GMT 0)
Cecelia, that was wonderful, positive advice you gave Tasha. Thank you for what you said to her.....

 

Wisdom comes to all who seek God with a faithful heart.  Your words to Tasha were wise also.  You are very much a God loving woman.  It shows in your support to everyone...Praise The Lord for His bountiful grace in our lives.

 

Blessings and hugs,

Ginny

Posted 4/5/2007 1:26 PM (GMT 0)
Ginny, thank you for your kind words. I feel the same way about you. Indeed Praise the Lord for his Grace in our lives. My love and faith in God are my greatest healing and His love gives me strength....He has given me peace of spirit. I have a visualazation that I use.....I am standing strong, surrounded by a blue sea of calm...I believe that it was a Divine inspiration. Gentle hugs and prayers for you Ginny. God bless you and give you peace, Cecelia
Posted 4/5/2007 2:46 PM (GMT 0)
Thank you Cecelia.  May God grant you the same peace and grace in your life.  I love that inspirational scene that you have with the blue sea of calm! Very tranquil!

 

Prayers and blessings,

Ginny

Posted 4/6/2007 11:39 AM (GMT 0)
hi everybody just been reading all ur mail thank you so much for replying i dont really know what it is really called i know itsan autoimmuine disease which has made my ovaries died andhave gone into early change .
Posted 4/6/2007 4:21 PM (GMT 0)
HI Tasha,

 

Thank you for telling me about your experience with POF (premature ovarian failure). I'm assuming that is what you were diagnosed with?  It's very common for anyone with an autoimmune disease to get POF.  Up to 75% of women with Autoimmunity will go through POF or an early menopause.  Crazy eh!  I'm 33 years old, but looking back on my symptoms, I believe I've started "the change" about 2 or 3 years ago at least.  I haven't got a positive diagnosis that I'm going through POF or early menopause yet.  I still have some other hormone tests to do. But I need my period to come in order to do them.  Not sure if I'll get it this month or not!  It's a guessing game.

 

Do you have lupus? Can you remember what autoimmune disease you have that caused this to occur?  How old were you when you were diagnosed with ovarian failure? 

 

It is a devastating thing to have happen at an early age.  I have been able to come to terms with not having children because of my lupus.  I have enough trouble looking after myself let alone looking after a child!  I also have other disorders that would make conceiving or carrying a child to term, very difficult or even impossible.

 

I hope to hear back from you too.  We can talk about our experiences. You can email me if you like.  Just click on my name and my profile will come up. My email address is there.

 

Have a lovely Easter weekend,

 

Blessings,

Ginny

Posted 4/11/2007 1:34 AM (GMT 0)

Hi Tasha,

  Welcome to the forum. I'm sorry your going through so much at such a young age. Ginny and Cecelia gave you some wonderful advice in their amazing words of wisdom. Just know that we are here for you and will help you in anyway we can. Please keep us updated and take care. You will be in my thoughts and prayers.

                                                           ((Hugs)) Babs

Ginny, ((Hugs))  How are you feeling? Have you gotten any relief from the multitude of symptoms you have been dealing with lately? Please update us when you can. You are in my thoughts and prayers.

                                                    Love, Babs

Posted 4/11/2007 2:55 AM (GMT 0)
Thanks Babs for your thoughts and prayers.  That means so much to me. (((hugs)))

 

Well, no new news on the early menopause front.  I'm feeling VERY off today.  Hormones are all over the place and I have the "bugs under the skin" feeling all over today.  The fatigue was really bad today too.It's awful.  Doing my best to keep positive.  I am very certain the fatigue is not my lupus or fibro.  This fatigue comes and goes throughout the day.  My lupus and fibro fatigue would usually last all day every day until I got the disease under control.  I haven't had fatigue like this for years now.  It's definitely different.

 

I'm just praying that this "situation" I'm in won't make my lupus flare up.  I'm being very careful, but my busy wedding season is starting this Saturday.  I can't be feeling like this.  I'm hoping my adrenalin will get me through the weekends!

 

My period is now 2 days late.  No sign of it coming either. My last period was 2 full weeks late.  Might be another month like that.  We'll see.  I'll definitely keep you updated.

 

Thanks Babs for thinking of me.  It's so great to know you're being thought of.  ((((tears)))).... I hope you're doing well too Babs.  You're in my thoughts and prayers too. (((hugs)))

 

Ginny

Posted 4/11/2007 3:08 AM (GMT 0)
Ginny,

  I'm sorry to hear things haven't gotten any better for you and today was so awful....(((Hugs))). I will be praying you get better before the wedding season is in full swing. I'm sure feeling so bad and trying to do wedding shoots will be a great challange and stressful as well.

  Thank you so much for the thoughts and prayers. They are greatly appreciated..((Hugs)). I'm doing better tks. Please keep us updated and take care. You are always in my thoughts and prayers.

                                                    ((Hugs)) Babs

Posted 4/13/2007 7:26 PM (GMT 0)
I'm sorry you're going through that. HUGS


That is really discouraging news regarding menopause that I had no idea of.. really shocking, to say the least! My aunt went through menopause in her 30's. She has many health issues, including Gout. But I believe she has Lupus and Raynauds as well. Auto-immune disease runs in the family. My mother has MS, and my sister and I are both in limbo trying to figure out what we have. :(
Posted 4/14/2007 8:17 PM (GMT 0)
Tasha, I'm also from the UK and recently rec'd the same diagnosis. Absolutely devastated! Feel so inadequate and odd as its such a stange condition for a young person to have. Would love to chat. Please get in touch.
Posted 4/15/2007 1:40 AM (GMT 0)
Hi Ginny (((((gentle hugs and prayers))))) I'm so sorry that you're going through all of this. I hope that things calm down for you before wedding season. My periods did that for a while, my gyn said that they get closer together for a while, and then further and further apart. Even after I had to have an endometrial ablation, I was still getting the "other" period symptoms and hormone changes. They got further apart. Now I have to get a blood test to see if I am menupausal yet....that was last fall, and the gyn said almost, not quite. Moods and symptoms really do even out after a while. I so sorry that you're having such severe symptoms and tiredness. Lots of nesting for you when you can :) Hugs and prayers again, love Cecelia


Hi Babs (((gentle hugs and prayers for you too)))) I hope that you're able to get some quality rest too. I pray that your arthritis gets better and things settle in for you soon. You've been in my thoughts and prayers alot this week too. Love, Cecelia
Posted 4/15/2007 1:43 AM (GMT 0)
Hi Tasha, How are you doing? I hope that your symptoms are getting better. I also hope that you are getting the information that you need. (((((gentle hugs and prayers))))), Cecelia
Posted 10/18/2016 5:35 PM (GMT 0)
New to this site, but wanted to lyk that in my 20's and teens started having problems after a severe viral infection and exposure to mononucleosis that my brother got.
I started with fatigue, hyperinsulinism, Raynauds phenomenon, migraines, and other organ issues. I got pregnant at 21 and 23 years of age with live births and difficult pregnancies. Afterwards I experienced inovulatory periods (one twice a month) which were treated with short term birth control use. Then I started with stress incontinence. My uterus was double the normal size and anterior, laying on top of my bladder. They found that I had varicose veins all over the bladder and abdomen. They tacked up the bladder to my pelvic boney structure. Unfortunately through testing, I was diagnosed with undifferentiated connective tissue disease, positive homogenous Ana ( which typically is lupus), electrolyte imbalances, shortness of breath with inflammation (chronic bronchitis and asthma), supra ventricular tachycardia as high as 200 beats per minute and recurrent abdominal adhesions with intestinal obstructions, cysts intra abdominal, and multi cystic, unrecognizable ovaries due to cysts and one attached to my descending colon and back pelvic wall causing a knotty obstruction. That surgery was done when I was 29!! Years old. Partial colectors with removal of both ovaries and the uterus was removed at age 24.
Nothing much has changed since then, , except I have learned to ignore much of it. There have been new additional diagnosis and none are easily treatable.
I am taking progesterone 200 MG every other day to prevent the hot flashes and stinky sweats.seriously stinky sweats. Did u know the difference between normal sweat and stress sweat odors?? If you nose detects a fout sweaty person, it is stress sweat, because of the high levels of bacteria in the sweat beads. I have both.....oh how lady like, right??
My suggestion to you is to try to find a recommended physician who treats lupus, and the other WONDERFUL things that are generallly diagnosed because of the lupus. A primary knowledgeable in complex patients ( via physician recommendation, online health reports, and patient referral), can help you with many of the issues. I found mine and don't want to ever move because of him. I would fly every 3 months or ask to have telephone /online visits, he is that good.
If you live in central florida, his name is Dr John Hudson , winter park, florida.

If u can learn to ignore what you can't change or do anything about, treat the treatable, be attentive to new symptoms and do research online to increase knowledge base and try to get involved in a hobby that will take your mind off day to day medical, ongoing issues, that is all you can do. Really.....try to find a reason to keep going and fun, despite the fact that most days you feel miserable. After all, life isn't one medical drama after another, it is your time in between and or on the journey til we die.
Fyi, I have 2 birthdays now, when I was born and when technically I should have died from a severe pulmonary embolism this past March. Having something like that happen to you changes your perspective, even though this has been a horrendoys, ongoing medical year. My attitude is totally different. HUGS!!
Posted 10/18/2016 7:18 PM (GMT 0)
Acrol,

I have locked this thread as you are responding to a post from 2007 and most of these people are no longer active on the forum. If you would like to introduce yourself in a new thread feel free!
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