Questions for Women GBSers

Dear Jane,

Hello.. I am a 28 year old female who was dx with GBS in April of this year.. I wasnt on a vent, but I couldnt walk or move my extremeties. Received 5 days of IVIG and started noticing slight improvements by the last treatment. By mid june I was walking and eating better. I had lost my appetite ( dry heaves )!!! By the end of July I was back to work ft and feeling great!!! My doctors told me it was my attitude and determination that got me through. I definately think its my stubborness !!! I had alot of support at home, receiving pt and ot, plus my brother in law from NY stayed with me while my husband worked, so he worked me out also. I went back to follow up with my doctors 3 times and most of my reflexes are back and all of my strength is back!!! So getting back to your question. I missed my period for 2 months while I was sick. Finally I got it late June and boy it hit me hard. Not to sound gross, but I bled through everything!!! It was heavy and leaking like a faucet. Basically for 2 days I sat on the bowl. It was easier than changing my pads every 2 minutes. It only happened in the morning and evening, throughout the day it was a heavy flow, but not as bad. My period lasted
2 1/2 weeks. I was praying that the following month it would got back to normal, and it did!! I just went to the doctor for my 2nd to last follow up and I too asked the question about pregnancy. My husband and I want to start a family soon, but I wanted to know if I should wait until after my 1 year mark. He said there’s really no risk of getting gbs again if you are trying to get pregant. He also said you probably will be extra tired and feel more residuals. I hope that answers some of your questions, but every person is different. Hope your daughter is doing well. Tell her to keep a journal. I am glad I did!

I am more or less regular….BUT I do know that my residuals are awful with PMS and my period. Since things are getting better overall, residuals flare up and right before and during I am tired, weak, my leg, hand and foot hurt tingle and burn, I get tingling in my face and neck too. After my period, things calm down and I am more or less fine until next time. This month was better than last and much better than a few months ago. I assume things are healing and I hope this is a good sign.

I look forward to the day I have no residuals or at least so mild I dont really even notice.

Jane,

I seem to remember having my period while in ICU, I didnt stop, just carried on going. My first child was born 6 years post. I think its up to the individual as to when they feel ready. Pregnancy obviously is hard on the body, so I think the patient should feel they can cope, especially when the baby comes.

It is great that people can ask this type of question here. I never could ask such a question from my male neurologist! It is good to know that there could be increased symptoms with the period.

My period became irregular for a short time after the onset of GBS and I actually missed one month for the first time in my life. I had hot flashes with the GBS. Who knows why, but I have read here that others had hot flash-type symptoms also. At the time, I thought maybe it was my time to go through the change of life and that the missed periods were from that. No such luck! They are back and all normal for me.

Periods and hormonal changes are sensitive to the stresses in lives and sometimes missing or changing schedules is due to an illness or major stress in life. This is one of millions of ways the body tries to be smart so that we are not overwhelmed, I believe. The lining tissue of the womb builds up with lots of blood supply in preparation for having a baby start there. A period is when this lining is lost if it is not needed for a baby. If you miss a period, the lining CAN keep building up and the period can be really heavy when it happens. This does not always happen. I did not want your daughter to be frightened that it will definitely be really heavy like Tracy. It might, more likely will not be, and if it is, it should be just the month when all the extra tissue is there. I hope this info helps her.

Deannie
With hope for cure of this disease

I was pregnant when I got GBS so as far as periods go I wasn’t getting them anyways. But I did have SEVERE hot flashes! So bad that my hubby was taking a bowl filled with ice water and running the cloth over my legs and arms and face, neck. I can’t imagine trying to do that now! Yikes!

When I was in the ICU they didn’t allow fans but I was freaking out. So I sent my hubby out to get one anyways. When he was carrying it back to me one of the nurses said “sir … you cant have fans in here” and he looked at her and said “you tell my wife that!”. The nurse ended up helping us set up the fan! 🙂

From the information I have the hot flashes or steady hot feeling and sweating is part of the GBS. It happens when the nerves near the spine are attacked. Those are the nerves that control the body’s temperture. I had the window open when it was 16 degrees outdoors and a fan blowing on me. The sheets were still soaked. That fan followed me thru the rest of a 9 week stay in the hospital. I am past having my periods, but I had some break thru bleeding (flooding) while in ICU that lasted for 3 weeks. Since I have been home I have had a terrible time with flooding for weeks at a time. I am dealing with the GBS fatigue and also the fatigue from the bleeding. I have had a D&C and now I have bled most of September except for 4 days here and 3 days there. I have had 3 Ultra sounds during the past 24 months. I am hoping they get this under control soon! I am also still mostly numb in that area so knowing when something is different or going on is not easy. So hang in there and get well. The female body is complex! Again listen to your body! 🙂

I had long last period when I was onset, when I got sick then I was on my period and it stayed that for 6 weeks, the doc was started to talk about sending me to speacial doc to check my out. but when it stoped at last I went on my regular period. the hot flashes I still get when I hurt much in my feet, all my cloths get wet, some day I need to change often, I dont feel this in the night usaly. I thought maby it was becouse I was geting my menapause but my doctors say that is not the fact, somthing else is triggering this hot flashes.
When I was on this long last period I was realy praying that I should get pregnat to get ridd of those damm thing.. *LOL* but then I look at my 5 kiddo and thought noooo not again *LOL*

Hello,

While I was still in the hospital of my onset in March 2003 I got my period it was so horrible, the worst pains, residual,cramps, bleeding and vomitting as well. I also was sweating it was pretty bad.

Because I was lacking insurance at the time I had no choice but to deal with the horrible episodes each month as time went by it was getting much worse and quite embarrassing.

I finally got some insurance, was able to see a really good Gynocologist which suggested a few things and I choose to have a procedure called a DNC to eleveate heavy blood flow because each month it was getting worse.

After having that done my doctor thought it would improve things for me. I really dread having my period each month, it’s too painful. I have very bad residuals which will act up a lot even more each month at the time of my period.
I’m hoping to have children one day and I just don’t know what expect if anything will ever change.
I’m wondering how many other woman are having problems with this as well?

My doctor is still trying to help me as well, I’m greatful for that too.

I was diagnosed in early May off this year and for the life of me, I cant recall if I was regular or not. I guess I had a lot more on my mind! But as of late, I too am getting hot flashes (to the point where I feel close to blacking out) and intensely heavy flows. I have yet to find a gynecologist. :o) You should have seen the look on my poor neurologists’ face when that question came up!

i was 17 when i got sick and for the past 3 years since have not had my period…. iv seen my gyno and they attribute it to my extreme weight loss…. they have started me on the birth control pill to hopefuly kick start my system but for about a year no luck…. i hope ur daughters situation is different and that everything works out… if u dont mide .. could u post an update? im really curious too im trying to find out my chances of having kids in the future

Hello Ladies

before GBS I had no periods because of the type of contraceptive pill I was taking (progesterone-only/mini-pill). I had to stop taking the pill when my throat got paralysed, I stopped the pill for about 6 weeks, my period came a month after the onset of GBS, it was painful and heavy but it lasted only 7 days. After that I started taking the pill again and I had light bleeding on and off (about once and twice a month) and mild cramps for 7 months, something I never experienced before for so long. Now it seems I’m back to “normal”.

I was pregnant when I got GBS, but my periods returned to normal after my daughter was born. Any severe illness can affect the menstrual cycle, as well as stress and weight loss.

[QUOTE=ali]Jane,

I seem to remember having my period while in ICU, I didnt stop, just carried on going. My first child was born 6 years post. I think its up to the individual as to when they feel ready. Pregnancy obviously is hard on the body, so I think the patient should feel they can cope, especially when the baby comes.[/QUOTE]

Thanks for your post! I am 6 yrs post and baby planning begining in August. My GBS was post miscarraige, so its a bit scarey, but you are right, we all know our bodies and souls and what we are willing to do. I am willing to risk some discomfort to have a family. I think the big peice has been building my strength back over the past two years. Focusing on Nutrition and Exercise have been helpful, and I hope that carries into making conception seamless. Its a risk on some level I am sure, but worth it in the end.
Jane, I also kept right on truckin with the menstruation through out ICU… Some of that was because of the miscarraige. But the only slow down I had was due to some weight loss that I had as a result of atrophy and being on a feeding tube. I think if your daughter is able to maintain weight, or at least gain back quickly as she recovers, she should start menstruating again. But of course, I would always advocate for keeping up with an OB, even during the illness.

Hello,

I had GBS 28 years ago, it started 1 week before my son was born. I was vented on his 1 week birthday.

The GBS/CIDP foundation has a symposium every other year. During these sessions the ? of getting pregnant post GBS always comes up.

The ‘experts’ say if you are healthy enough to become pregnant, do it. They recommend you go to a high risk OB/GYN. Most of us would not have any risks, but it is best to make sure.

I know many of the ‘experts’ and trust what they recommend.

When you receive the foundations newsletter look on the back and there are others to talk to. If you wish or have any ?s I can help you with please call me. I’m listed in the yellow directory in the newsletter. You may also e-mail me.

Hi. GBS in fall of 2012. My “system” has never been normal, at least not for any reliable stretch of time,and post-hospital experience hasn’t much different. It did stop for a couple of months. I have been wondering about this topic, though, and my Mom will not talk about health matters for more than a minute. Periods have generally been light-to-medium and 3 to 5 days in length.
For the last two days my period has been very heavy. I’m getting close to “that age”…Is this some kind of “last hurrah”? (Day 1&2; nothing else out-of-place.)
And I seem to get the “dropsies” (pens won’t stay grasped) in the PMS days. Anyone else get this?