MS and possible hyster

Hello! I am new. I have multiple sclerosis and have had fibroids for years. They have now grown to a 5 month size, very -ahem- attractive. I have had heavy periods for the last several years regularly soaking a tampon, overnight pad and my clothes; In one memorable morning doing it three times by noon! Whew! We got that slowed down a little with prometrium so it is heavy now but I have not "soaked through" everything more than twice in a day in about 6 months.

So my nurse practitioner who has been following me for years finally said this is really getting too big here and with 8 years or so to go until meno, we need a surgical consult to consider options as the weight of the fibroids is causing other kinds of problems like pain down my leg that gets worse at the cycle, it's plain ungainly and icky looking, and I have severe constipation with pain caused by the weight on the bowels. SO debulking is the main issue for me. Though my periods are awful I could manage, and might consider ablation if that were the main issue but it's not. It's all that heavy bulge. I also feel like I have poor balance and am a litle off like a pregnant person might be-or maybe that's just the MS causing that. Does anyone else with a giant belly feel that kind of of off balance and ungainlyness??

I have been reluctant to consider surgery as MS people I know who have had surgery for other things tend to heal poorly. I would be very pleased to hear from people who did a hyster and who had MS and how they did, as well as pleased to hear of others with a similar situation fibroid wise.

I have no date yet but am seeing the surgeon next thursday to discuss options. I believe we are done with medical management (ie hormones etc) as the ARNP said I'm done you have to see the surgeon (I was supposed to do this consult last year but didn't)

At t his point after reading here and all the links I can find I believe that I am unwilling to do UAE as it appears that those fibroids become necrotic and die off-an immune system stimulation that would be undesirable in MS. I believe the cleanest easiest and surest solution to get rid of the excess tissue is a straightforward partial hysterectomy conserving the cervix, ovaries tubes etc. I have never had an abnormal pap.
I suppose another option would be myomectomy, but at 45 I am not wanting anymore kids so what that preserves is my uterus and possibly orgasm in it's normal sense but it adds the continued possibility of another fibroid down the road and continued periods. Is there anything else I would save by opting for that?

I am very pleased to have been referred to this site (my sister had a TAH/BSO 2 years ago for Cancer) and am ready to seek peer support in feeling good about doing this. As I said, I have been encouraged to go this route for a couple of years but have been reluctant due to the MS and concerns over how I might cope physically with surgery-I kept saying "I'm not doing anything just for vanity that might cause bigger problems" but it is beynd vanity now. SO now that I realize I HAVE to do it, I can't wait to get it over with-sound normal?

BB

I don't have MS, but I have two other chronic immune system related diseases, insulin-dependent diabetes and rheumatoid arthritis (RA). I had a LAVH on July 6th, 2006, for large fibroids that were causing excessive bleeding, long periods and pressing on my bladder, and everything went well. I was very nervous about being able to control my blood sugar levels, and about having a RA flare-up due to not being able to take my normal meds. The anthesiologist was very helpful, and answered lots of questions, he monitored and managed my blood sugar levels during the surgery (over 3 hours). The nursing staff were very helpful as well, although I did take my blood sugar monitor and checked it while I was in the hospital. They gave me an IV drug for the arthritis, during the surgery and at least twice while in the hospital. I didn't have a flare-up.
My GYN planned on doing a laproscopic-assisted vaginal hysterectomy, but said he wouldn't know for sure until he got in there and could actually see how big my uterus was (it was estimated to be like a 14 week pregnancy). He was concerned about doing an abdominal surgery since poor-healing can occur with diabetics. He was able to do the LAVH even though my uterus was much larger than he expected, he stuck it out, and the surgery took over 3 hours. The only "complication" that I've had is I lost a lot of blood (borderline giving me a transfusion, but did not) so the fatigue has been longer than usual. I went for a 4 week post-op and the doctor said things were healing well. I'm now 8-weeks post-op and am feeling pretty good. You can e-mail me with any specific questions that I might be able to help you with.

Jana thank you, that is good news! I did not tell it but I have RA as well as MS (and raynauds). I am glad to hear they were able to manage this for you so nicely an dit is a relief to know it worked so that you feel good already.
I believe I will ask for a Supracervical laproscopic hyster as it has reduced recovery times and I am prone to atrophy, so every week not spent in down time means at least two less of physical therapy at the other end trying to get back. That's a good thing!
Thank you so much for your input I really appreciate it
BB

Hi, I was directed to you as I asked if their was anyone else out there with MS or other chronic conditions coping with a hysterectomy and the "condition". I can mirror your experiences in several ways. The flooding regularly even though the doctor tried several drugs to reduce the bleeding.Nothing worked. I had a lump removed two years ago and had another operation in January this year for further research.After being chronically aenemic for two years, and a Mirena coil making it worse the Doctor said I was running out of options. I had the VH last week and I am out of hospital, exhausted but well enough to write on the computer. I have been warned that it will take about 12 weeks to recover fully as I have MS fatigue problems anyway. I had lost more blood than he had thought I would lose but I have been taking extra iron tablets on the build up to the operation and this helped me to be boardline but not finally need a blood transfusion. Tha anthenetist ??? (can't spell!)was amazed that the surgeon removed such an enlarged womb virginally but he is very skilled, he even allowed me to say goodbye to it, as he encouraged me to have a spinal rather than a general to help with my recovery. If you are tired with MS you don't need the extra general unless you have no choice.

Good luck with any decision you make, keep in touch, if you want a chat,

now this is sounding positive! Thank you to both of you, both doing well and better afterwards. I so appreciate your time and input.

no one addressed the ungainliness, I'm just curious does anyone else with large fibroids feel like an off balance duck or is that the MS?
bb

Hi,
Thanks for the private message. I am with you 100%. I know no one else understands because these conditions are very personal and platitudes are all very well and well meaning friends are out there but they do not truly understand how it feels to live with these things day in day out. Do what is best for you - sounds a bit like a platitude!!!, but I mean it.... I spoke to two different doctors and they both agreed that a general would not be a good idea from a recovery point of view, as it takes longer to feel aware and with it. I was very reluctant to have a spinal as I was really worried about how my legs would recover, they don't need anymore stress! In the scheme of things, for me, it was the right decision.
Can you have a chat with your own doctor as well as the Gyno and the anthetist?? (my spelling is not improving!). You making the decision based on their experiences, use them. I think seceretly I must be a bit of control freak but I do like to feel I have chosen for myself the best options for me. I am not very competent with the messaging system so I hope you are happy with me replying like this. Hold on in their,

Hi BB
I can share my experience as a person with MS who came through some of the same things you have experienced and are now facing. I didn't have the fibroids but very heavy and prolonged bleeding. I did try the ablation and D&C and prometrium to slow it down, but nothing lasted.
I was glad to finally come to where I could make the decision to have surgery and get it over with. My feelings on it all now is that the constant bleeding was a stress factor that was exasperating my MS and I really had no choice but to do what I needed to do to fix it for lots of reasons.
I came through surgery well, but not exactly like some others here. I still don't feel it was that bad, it just took longer. I had to stay a bit longer in the hospital. I was so weak from anemia and what they believe to be additional MS fatigue that I struggled to get out of bed. This only lasted a couple of days but I was weak for a long time. The first and second days after surgery when they would try to get me up I would faint. My recovery did take a little longer, but generally after I went home I felt sooo much better. I had to be careful not to push or over do, but in time I have healed up nicely. I just looked at all of this as par for the course. It was at about 8 months out that I really began to feel what I might consider 'normal'. I was closely followed by my neurologist and gyn. They took good care of me. I was sent to a physical therapist to get some help building up my strength so I could get back into a normal routine again. It was a big help.
I am almost at two years now and am doing great! I hope it helps to hear my experience. You have to remember that we are all different and need to listen to our drs and our bodies and that little voice inside us that directs us in being our own best advocate. I wish you well with your decisions and upcoming surgery.
's, Rita

Gosh Penny and Rita thank yo SOOO much for the kind replies. I feel my experience is similar, but since I posted this one I have met the surgeon and I liked her a lot. She is totally for a TVH. I was thinking I wanted my cervix but in fact others have posted that you ca get fibroids in the cervical tissue too. Ihave several so itis not unlikely to me that I might have new trouble down the road.....um thanks I'll pass on that. The only sure way to be done is to go total so I am getting in line for that. once is enough on this I'm thinking!
THANKS GUYS!
BB