Lupus Related...periods?

Tallwoman, I hear you!

Even though I am only 30 and *really, really* want kids, I am seriously thinking about asking for a hysterectomy. I go into a flare every time I get my period. I have not been below 20mg of perdnisone in 2 years. I don't think kids are possible anymore anyway because of how active the disease is. I'm going to talk to my docs in may...I'll let you guys know what my docs say...

Hugs,
ladybrannon

Hello ladies,

well, I had great periods, like clockwork, until I was diagnosed too in 2002. My doctors took me off the pill right away and I haven't really been on it since (except for the last 6 months on that synthetic thing which started not to work).

I was very lucky with the pill for those...12 years...And didn't feel a thing. My sister-in-law said something about a prescription she takes only during her period called anaprox that I am going to look into.

That is, when I find a oby/gyn out here.

Anyway, the hysterectomy conversation went well with the hubby, although his initial reaction was to pop-open his eyes.

: )

clarebear

When we're willing to undergo the knife for relief. I thought about going on the pill, but a gynecologist told me I shouldn't take it because I get migraines. I guess it puts me at increased risk of stroke. Oh misery. I keeping hoping menopause will be my relief, but who knows when that'll be. Someone told me it might not be until my mid 50's!

Well, actually, the knife would really be accomplishing two things...As my husband and I have decided _not_ to have kids, it would also help with the possibility of becoming pregnant. Yeah yeah there's all sorts of other things to help prevent that but this is the surest way to know.

I took pregnancy tests three times last year because I didn't know if my periods had just temporarily stopped due to the chemotherapy or if I was pregnant. Of course it was the former but still...It's scary not knowing. We're not financially able to even help ourselves right now (new town, new job, me not working blahblah) and I know physically while I am able to do many things that I used to do, having a child - either naturally or through adoption - would be very taxing on me. Some would say I am selfish but if I cannot take care of myself then how can I take care of a child?

Talk soon.

Clarebear

I would not say that you are selfish for deciding not to have children, clarebear. Even if you were perfectly healthy, and you decided not to have children, I wouldn't say that was selfish. You have to live your own life. You decide what and who that includes. I know too many people who have children without a thought, and it shows. Their poor children brought into this world with parents who thought, "i want to have a child to love me." never mind everything that a child needs to grow up strong and healthy. They love their child(ren) when it's convenient for them. (i work in a school. I see too many children that would have done better on this earth had they been born to different parents.) so, i'll step off my soapbox now.

If I do end up having lupus. That will explain my difficult pregnancies. I had preeclampsia with two out of the three. And the last one almost killed me. It did kill my unborn child. I don't want to scare anyone. That was a long time ago and i'm sure there have been advances made in the treatment of lupus and pregnancies. But still, one must consider all things.

I agree, tallwoman. I think clarebear is being very thoughtful about all this. And I think it is something that all of us with lupus must think about...

I'd love to hear what more of you think.

Tallwoman, think you for sharing your story. That must have been very difficult.

And clarebear, while I want a child more than anything, I think I am beginning to agree with you completely. How can I raise a child when most days...I can barely take care of myself?

Hugs to all,
ladybrannon

One of the most asked questions I received this weekend while at a wedding was "so, when are you going to have children?"

i'm not. I am not, dammit. I have answered this question a million times and a lot of them were a direct answer to you.

My mother in law asked me in her way (oy, her way) about children again earlier this year. I told her that it wasn't in the cards. That even if I did adopt or whatever, I still would not have the energy to do it. Her reply?
"well, I saw you with the dogs, you can have children."

hmm. Let's weigh this issue for a moment. Dogs. Children.

Hell-f***ing o???

Sorry. It would be great to have a child. Yeah, it would. But with my husband working 12 hour days, who will take care of our child when I cannot get myself out of bed because i've overdone it?

Amazing how people always tell me to take it easy but then say "so, where's the kid?"

hmm.

Well, most of them anyway. They see you on a good day and think that you have the potential to perform that way all the time. Stick to your guns, clarebear. And since i'm a mother-in-law myself, try to be gentle but firm. Tell her, "you saw me with the dogs on a good day. On my bad days, all I have to do is put water and dry dog food in a bowl. You can't do that with a baby. I know you want grandchildren. I wish I could give them to you. I would love to have children myself. But I have to be realistic..."

Hi ladies,sorry...I'm a little behind in my reading.I'll explain later.
I know none of this is a laughing matter. ...But I did get a chuckle out of some of the post.
My input is this,for what it's worth....I had very bad periods for years.If you are serious about not wanting children,and are having so many problems with your periods,and the meds don't help......Then find a good gyn doctor(mine was female)and go the whole nine yards!! It is not worth a partial job now,just to have more problems down the road and maybe having to go through another surgery later on. The last part was a quote from my gyn doctor.
You still will have to take hormones for a while,along with a few hot flashes....But it was worth it to me. Now....I had other medical issues that you might not be having....But I was 43 at the time of my surgery.The same issues of which could become a problem for you later on.
it's a serious thing to do...But I have no regrets...And I darn sure don't miss the periods!!!
Sharon

I'm going to have an ultrasound to see if fibroids might be causing a couple of symptoms i'm having. But if they recommend a partial hysterectomy, I might tell them, "just take the whole thing out. I'm done with it anyway." lol!

I sure am glad ihad my hysterectomy! My suggestion is to have a complete hysterectomy, as I told the Dr., take it all, cause I am not coming back! You do want to remember that as soon as you do have a hysterectomy that you do become menapausal, I do not feel that it is as bad as you would go thru it regularly, as I have heard that a lot of women that go thru menapause almost go off the deep end and a lot of women say that have had a hysterectomy that their sex life is not as good, I don't see any difference. Yes, I probably do have a few hot flashes but I am hot blooded anyway. Another good thing that I enjoyed about my hysterectomy was that they had me knocked out for the 1st two days so I did get some sleep!
I, myself would not want to bring up a baby in this day and age and I know I would not have the strength anyway. It is difficult enough just to keep up with my jobs and I live in pain but I have to keep going just to keep up with my medical insurance, I work around children, adults and snior citizens, that is too much for me too handle!
Anyway, this is my opinion!
Sincerely,
sandy

My internet has been out for weeks so i've really been out of the loop, but I definitely wanted to contribute to this conversation. I got married 4 years ago, after being fairly symptom free for 2 years before that, and immediately started trying to get pregnant. Nothing was happenning, so we went to a fertility specialist. My ovaries were not producing any eggs at the age of 36! No one in my family had ever had any fertility problems before me. There was no explanation for why my ovaries were not producing. I took hormone pills, they didn't work. I took hormone shots. They did'nt work! I took even stronger hormone shots. They didn't work! And then the oddest thing happened, my cervix started to elongate. My gyno started calling people into the room so they could look at the sonogram of my cervix which had prolapsed to 7mm(approx. 7 inch I get the conversion confused?). I asked how this could have happened? He didn't know. Could it be fixed? No. Could I still carry a pregnancy, probably. We did 1 more round of shots in august of last year at triple stregnth, and thats when I had my major lupus flare directly following. The worst flare of my life. The flare that hasn't ended.

Fast forward 6 months, for a follow up visit, cervical prolapse seemed to be progressing rapidly so back to the gyno. My uterus was completly falling out. I am currently wearing an old fashioned plastic device called a pessary, to hold my uterus in my body until such time as I decide whether to have a complete historectomy or, to lose my mind, and try one more time to get pregnant, with borrowed eggs.

I just turned 40 in march and my time is up. I don't think I can get well enough to get pregnant and get off the seizure medication and other meds that would cause problems with pregnancy. I also don't believe any adoption agency will gladly hand over a child to me with my medical history. My husband and I wanted children. We also wanted a normal life. So much for wishes. Whats the saying.... If wishes were horses...


Mia

...Hi mia. Been a while for me too to be on this site; I was surprised to hear of your story.

Anyway, I am sorry about the way things are turning out for you physically as far as children go.

As for the adoption thing, you never know. People of all kinds of shapes and sizes (and marital status) are able to adopt. I would definitely look into it before closing the door.

As for me, my md said that I should really look into getting the tubes tied or the hysterectomy b/c all of the meds would either deform a child, cause miscarriage, and whichever of the two, throw me into a flare like i'd never wish on my worst enemy.

So now I am on the search for a good gyn in myrtle beach. Which, apparently, they're in abundance.

I wish you much luck and my heart goes out to you.

Clarebear