Anyone with MS - I have Questions

Hi! I am new to HysterSisters and have learned so much from reading all the messages - thank you! I am scheduled for a SAH on June 20. I have TONS of questions and would like to know if there are any ladies out there that have MS and have had a hysterectomy - did you have an exacerbation after the surgery? If so, was it severe? I have never had surgery so just wondering what to expect. Other questions - Is keeping my cervix my decision or the doctors? My doc said if I had never had a bad pap or cervical cancer in my family that he leaves it in. At that visit, I didn't get the feeling that I had the choice. I would appreciate any feedback!

Julie

Welcome. I don't have an answer for your questions, just wanted to let you know that I'm sure there will be someone who can guide you in this. This site is the best place to learn what you need to know!

Good luck!

We will bump up your post and perhaps get you some additional responses on MS. I have no personal experience with that. However I know many other women have been here who have faced hysterectomy along with MS.
You can do a search using the purple search button at the top of this page to search on MSor cervix or anything else you would like to get more input on.
Here is one previous thread on MS I found for you.
https://www.hystersisters.com/vb2/sho...iple+sclerosis
Many women choose to keep their cervix because they believe it contributes to their sexual response and bladder control. Many other women have had it removed and feel they are doing just fine without it. It is really up to you and your doctor (assuming the cervix is healthy etc.)
Best Wishes and to you.

Hello Julie,
I was notified of your concern about MS and surgery.
I was not diagnosed until 1.5 years after my surgery. I do not recall any exacerbations other than numbness in my left thigh. My Gyn suggested that it was due to maybe a nerve being cut. After I was dx with MS my neuro believed that numbness to be and exacerbation.
I cannot say for you or others but I would be sure your neuro and gyn/surgeon is well aware of your situation.
As far as the cervix, I believe you should be a part of that decision. I did not keep mine and believe it was healthy but as cervical cancer goes, did not really want to keep it to have to do this over again. I did keep the ovaries and tubes.
Do make sure you talk over this subject with your physican.
Blessings<><Jody
Let me know how things go for you with MS.

Welcome Candle Lady!
I received and e-mail from a hystersister who told me about your concern having MS and surgery. I have MS and also have had a tvh/bso last November. I was diagnosed with MS in April '95. I also was concerned with the surgery and having MS. I talked with my gyn and informed him of all the medications and vitamins I was currently taking. I also took a list of medications and vitamins to give to the antesethiologist. I did not have any exacerbations or problems with the MS after surgery at all. Just remember that having the MS you will probably not bounce back as quickly but that may not bother you either. I was fortunate that it did not seem to hinder my MS at all. I wish you the best of luck and good health. If you would like to e-mail me you can at: gentry93@mchsi.com

s

tvh/bso 11/19/01

I appreciate your feedback! I did talk to my neuro and told him about the surgery and he didn't seem worried about it at all. He said to just take a few days off from the Betaseron and then get back on it when I am able. I am worried, however! I remember when I had my son and when he was about 6 mo. old, I lost the feeling/use of my left arm/hand! I couldn't even change my baby's diaper. I did get the feeling/use back about 3 mo. later, but the thought of that (or something else) happening again On the issue of the cervix - I am so confused. I really think that I want to go ahead and get rid of it (on the hopes of never having to have surgery again), but I also don't want to worsen the bladder issues I already face due to the MS! (Not too bad right now) Then again, the thought of the "mini-periods" make me want to even if they are supposedly "mini"! I go for my pre-op on 6/14 and will have lots of questions for my doc. Thanks again for listening!

Julie

Hi,

I think we've exchanged messages before. I have MS and no one seems worried in the least that it will exacerbate the MS. I am NOT skipping the Copaxone injections, though. It scares me. I also am having a general anesthesia because I don't want an epidural or anything that will make me lose any feeling because I already have that problem for one thing! But also, I don't want to freak out thinking something is MS related that isn't.

Here's what I've read. Many women have good pregnancies and exacerbations following pregnancy. I'm assuming you weren't using Betaseron during your pregnancy, so that will be different this time. You may have a break from it, but you are at least on a sort of "preventive" course that you wouldn't have been on related to your pregnancy. Second thing--and I find this way cool--is that there are studies that indicate many women have exacerbations or at least exaggerated symptoms pre-menstrually. I have (or did before Copaxone) severe facial pain and was popping steroids. It was predictable related to my period and severe weather changes. Can't help the weather, but the Copaxone has improved that problem about 98% and now I won't have to worry about any PMS kicking in the MS.

PMS used to literally mean pre-"MS". There's hope that the hysterectomy will actually improve things. I suspect due to the body's trauma that some things could get funky, but I'm trying to look at it as having a few less body parts to get screwed up by MS!!! The National MS Society has lots of good literature and stuff on the web. If you haven't checked them out, you might. I visited their message board for awhile, but people were getting kind of snide. So if you check that out, don't expect the wonderful responses you get here at Hystersisters. But the other info is good and you can get all kinds of free literature by calling--maybe even emailing.

I'd like to know how it goes. Maybe we can provide some info for those coming after us with the same concerns. I, for one, am expecting things to get better, not worse. One less health issue! Yea!

hi ladies
i don't have MS, but my hubby does and being involved closely with the MS community for 20 years or so, i feel i can put in my 2 cents second hand .
i know of several women with MS that had them and no one mentioned exacerbations directly related..., but many women with MS do have flares after childbirth with all the hormonal changes, so it would be wise to discuss this with your neuro and gyn as well. Not like anything you can do to prevent the stress of the surgery on your body or the hormonal flux, but to prepare just in case? of course you wil lbe tired post op, with or without MS or anything else, it just may mean some flaring or the need for more help than usual perhaps. I didnt realize it but from talking to many with MS, it is important to tell the anesthesiologist about MS. make it a point in pre-op and once again when you are being prepped for surgery.
you might also visit some MS websites ( NMSS )or bulletin boards and directly ask there .
i am 8 wks post op today and MY biggest worries were HOW wouldi take care of hubby and his needs as he needs alot of help , and how or IF he would be able to help ME? I wasnt a pampered princess as much as i would have liked but thats how the cookie crumbles. With hubby, our 16 yr DS, and a few good friends, we did better than i ever anticipated and hubby actually surprised us aLL with what he managed. I had to make the whole house fully accessible for him pre-op, not just certain areas, but it was worth it in the long run!!! BEst of luck!!
jandrie

I have MS and had a TAH in Nov. I did have cervix, ovaries, everything removed because my doctor deemed it necessary (large fibroids, extensive endometriosis, low hemoglobin due to excessive, non-stop bleeding.) I would suggest gathering as much info. as possible regarding cervix, etc, and talk with/ask your doc questions until you feel comfortable with whatever your final decision is. I was diagnosed with MS in Nov. '00. I told my gyn./surgeon that I was concerned about this surgery since my neurologist told me surgery often exacerbates MS symptoms. Since my surgery was not elective, my neurosurgeon said since you have to have the surgery, you just need to go ahead with it and not worry. That was easier said than done! My gyn. was wonderful! I told him all my concerns due to having MS and he listened! He had a physical therapist work with me while still in the hospital and then had a visiting physical therapist work with me for 7 weeks following my surgery. I did not suffer any worsening of my MS symptoms due to surgery. I walk with a cane and use a wheelchair sometimes and none of that got any worse after surgery. Some of the things which helped me through all of the pre-and post- surgery were having a wonderful gyn/surgeon who listened to me and had gotten all my records ahead of time from my neurologist and was well-informed about MS, and these message boards for support, kindness, and t.l.c. I wish you all the best! Take good care of yourself. Ask lots of questions and speak up for yourself! If I can be of any help, please feel free to send me a message, and I will be happy to email you back. I am sending good thoughts your way. I know you'll do great!

wendysue w.