fibroids - My story

I've had very painful periods for about 5 years now. My first ob/gyn suggested a hysterectomy just to relieve my symptoms during my period. I wasn't agreeable to major surgery just for 3 days a month that I really felt bad. So I talked to my PCP about this, he agreed and I also discussed the fact that I have to go to the bathroom about once an hour during the day and also sometimes have some leakage that I'm not aware of. He sent me to a urologist. The first one I went to was convinced that my bladder was not emptying from that pvr machine they use(he was actually seeing the shadow of the fibriods). He put me through self cathing, which because he still saw what he thought was a full bladder didn't work and eventually sent me for an mri thinking it was neurological. I went to another urologist, because this wasn't making sense to me since I was getting very little output from the cathing and he was saying I was retaining a lot of urine. The new urologists told me I had fibroids. I went back to my ob/gyn(who then decided to do an ultrasound after I told him this) and said 'sure enough, you have large fibroids, we need to do a hysterectomy'. He seemed too surgery happy to me. In the meantime the MRI showed a couple of lesions on my brain and I was diagnosed with MS after a 6 mo followup mri and spinal tap, even though I currently have no ms symptoms.

I decided to see another gyn for a second opinion about the hysterectomy. She agreed that my fibroids were so large, that they should be removed. In the meatime, I saw a MS specialist and he advised me not to have a hysterectomy unless it was life threatening because major surgery can bring on a MS flare(which thankfully I haven't experienced yet).

So about another year passed and it was time for my annual. My 16 yo daughter was having some problems and her pediatrician referred her to another female gyn. I thought I'd start fresh with a new doctor and see what she recommended. I told her of my MS and my MS doctor's recommendations that I don't have surgery unless it's absolutely necessary. She did an exam and said my uterus was up above my belly button and it was the size of someone 23 wks pregnant. She then ordered an ultrasound to compare to the previous doctor's ultrasound. After this, she said that since the fibroids are growing so fast, they could be 'something else' and she recommends they come out also.

I have surgery scheduled for January 30th. My periods are heavy but they only last for about 3 days, so I am not anemic. I do have constipation and bladder issues that they tell me are because my uterus is so large and I have a couple of fibroids hanging off the uterus. I know because of how I feel with the lower back pain all the time that I need to have it done.

My question is almost everyone else I see posting her has anemia and very long heavy bleeding, I don't. Are these enough reason to go ahead with the hysterectomy? What have you experienced with this? Currently, I plan to go ahead with it, but if anyone has experienced anything different, I'd love to discuss.

I don't suffer from anemia or long periods. What I do suffer from is pain. I have heavy clotting, back pain, leg pain, abdominal pain, vaginal pain, rectal pain, pulling and tugging in my sides, etc. I have several 3cm fibroids and a slightly enlarged uterus. Doc feels I have adhesions from previous c-sections. My main reason is pain. OTCs are losing their effectiveness. We all arrive here for different reasons. Our method of treatment is a personal one. I wish you well with your surgery and MS.

Sherri

Thanks Sherri, I think it's the correct decison for me, because I know what I go through each month and sometimes during the month also, so I'm looking forward to some relief. Now that I'm a little over a week away from my surgery though, of course, I'm scared and wondering what others have done with this.

I'm also a little afraid that it will cause MS issues for me and I've been so lucky to not experience any of those yet. I am on medication for MS and the doctors tell me that because I have a normal neurological exam that my prognosis with MS seems good. I've talked to lots of others with MS who have had major surgeries and some have had issues, but most have not.

I am scheduled for Jan 29th. While my periods are getting longer and longer, the worst part is only 3-4 days but my low back pain sticks around the whole month, and there is only about 10 days where it is tolerable. So that is good enough reason for me to do something - Quality of Life is important. Your uterus is really enlarged - I would think you are having some big problems because of that alone.

However, I am looking into ExAblate tomorrow. Now I don't think it treats pedunculated fibroids, or fibroids that are <2cm or > 10 cm. (I got that off the uterine-fibroids.org website, check it out to see if you qualify.) The bad things are it's new, uses an MRI, isn't normally covered by insurance. If you have a decent insurance company they might consider covering you because of your contraindications to surgery. Just do your own research on it to see if it may work for you. I hope I get good news tomorrow with my insurance - I may reconsider. Also I heard from another woman on this site (breezyme) that they did a study and her price was reduced. Good luck.

I had large fibroids, and although I did have some heavy bleeding and did become anemic, that's not the reason I had the hyst. My fibroids also kept growing and although I didn't want the surgery, they finally started pressing on my bladder. That became a problem, and I finally decided that I needed to get that big, ole, soggy uterus out! My doctor was concerned that because they had gotten so big, that he wouldn't be able to do a vaginal hyst. He didn't want me to have a large abdominal incision because I have diabetes and might have problems with healing. In the end, he was able to do the LAVH, but I lost alot of blood and the surgery was quite long.

Don't wait too long, it might make the surgery and your recovery more difficult.

Echo on the don't wait too long part. At least take some action (even if it's a watch and wait - just WATCH closely).Things may not get better, and they may get worse! You just never know unfortunately.

This post explained a lot about my new bladder problem....

Thanks Oceanmist