FULL HYSTERECTOMY!!
Posted , 13 users are following.
I've just found out I have to have a full hysterectomy I'm still a bit of shock as I'm only 36 it's long story but I bleed all time I'm severely anemic and have been for a long time ! So that's it it's all going !!! Just wondering if anyone has had this done and did it affect your fibromyalgia? On a good note I went for a assessment for a blue badge and I've been awarded it yay x also my ot had been round and I'm getting lots of help which is great sonafter Xmas I'll go for the mobility side of pip as I'm on the standard rate at the moment
0 likes, 33 replies
denise_13913 sadie1980
Posted
Hello Sadie I just had a total hysterectomy Feb 2015 and found out a month before surgery I had fibromyalgia and I had been anemic for yrs. I had a huge tumor that was sitting on my small bowel and bladder. up to today I'm still very anemic and it's not iron deficient after a slew of tests it could be 11.2 today and then drops to 9.2 I have to be 7 before a transfusion I have a new hematology Dr. I just found out my colon stopped working and now have to have permanent stoma put in .....I'm 47!!!!! on the fibro side 98% of the time it wipes me out and it was very bad before and got worse after. now this is me...you may be better. I keep going to the Dr for them to do something because my quality of life is so bad FINALLY my primary says there a special clinic in Chicago (I live in Wisconsin ) that deal with fibro pain. at my f/u appt at that time which is next week I will confirm that i would like this set up. Like I said again this what happened to me. You may come out just with Fibro. Best to you with your surgery.
sadie1980 denise_13913
Posted
Thanks for your reply I'm having it removed for the bleeding and endometriosis also my ovaries have cysts etc so it just needs to go ! My levels are really low and my ferritin is like 4 ! So it gives me a condition called microcytc anemia. So I'm really hoping that this sorts the problem. I hope u get sorted Hun . I'm on all sorts of mess for my fibromyalgia which does stem the pain up until a flare up ! I also go to a pain management clinic
aleacia54764 denise_13913
Posted
Hi Denise I also live in Wisconsin (just over the border) and have never heard about this clinic in IL you are referring to, would you mind telling me about it please? I'm getting ready next month for full hysterectomy and have had Fibro since 2012 and it has only gotten progressively worse, any tips pre-surgery and post would be much appreciated?
shirl21730 sadie1980
Posted
hope all goes well for you.
take care
Shirl x
sadie1980 shirl21730
Posted
That's what I wanted to hear lol ! The pain every month is unbearable to the point it feels like full blown labour x
ihavenonickname sadie1980
Posted
Hi Sadie
Fibro, endo, JRA, Crohn's....45 years later and I still feel so much better...no pain, no bleed...
hugs
sadie1980 ihavenonickname
Posted
That's sounds great ! Just hope it ends the labour like pains I suffer every 20 days or so x
bronwyn97278 sadie1980
Posted
Hi Sadie; I, too, have had an Hysterectomy, over 10 years ago, and found that the op itself was of no major issue. The only thing I ask of you, is that you do NOT push yourself post-op (as I did, thinking I was invincible, and had a family to look after); I don't believe I had the CFS before my surgery, but do believe that I succumbed to this following my op. I Just couln't seem to get back my Energy....and was readmitted by my Gynaecologist for further observation, and all that they could come up with "was, I showed signs and symptoms of Glandular Fever". As many CFS patients all say, this is how they started the road for CFS, so I ask that you "take your time in healing" and ask for help, and not let yourself, or others, push you back to your normal routine.
?I did not suffer any excess pain levels from my op, which was very good.
?I do believe that it is important to have your surgery (and am hoping that you are happy in having the family that you had planned for); and that this is not an issue for you? If you are continually bleeding, and have tried all other forms of Hormone Treatments to no avail, then this is the course of action that you should take for your betterment. Good luck, and keep us posted. Bron
sadie1980 bronwyn97278
Posted
Thanks for your reply Hun , I've had my family 3 boys 16,12 and 2 ! All By c section unfortunately. I also have had 7 miscarriages and been sterilised. So enough is enough I think. I'm having key hole surgery so hoping that will be good but scared about having my cervix removed to be honest x
ihavenonickname sadie1980
Posted
I agree, you are young. I was 19. So I can say you will actually feel much better when you stop losing blood.
In fact, I wonder how much is fibro and how much is low iron and blood loss.
hugs
judith
sadie1980 ihavenonickname
Posted
I no it will be interesting to see how it effects me after . Unfortunately that pain is only a tiny side to my fibromyalgia I have all over pain on a daily basis. The period pain is one of many things.here are the other things I get
Stiffness
Tired all time even after sleep
Pain if get poked
Hate loud noise
Puff eyes
A stone put on
Confused can't get words out/ can't count
Headache
Numb legs
Rib pain
Bk pain shoulder neck
Spine stiff and hurts
Hands worst
Cramp
Wrist and ankles
Jaw
Clicking and grinding joints
Hands shaking
Twitching in body / right eye twitch for days
Bone pain everywhere
Loose voice when I've done to much and run down and can't move
Shooting pain threw bum into bk of leg
Ibs hard then very loose
No appetite
Migraines
Hot flushes
Sweating
Headaches
Low iron all the time
Cold hands and feet
Bones cracking
Vitav sadie1980
Posted
Sadie I am 45. I feel exactly all the symptoms you have described. It's sad! My rib and chest pain is the worst. Confusion my God! I feel like I have dementia at times. IBS 😩😩😩! It's like everyday it's something new! Tears.... What do u take for pain Sadie?
sadie1980 Vitav
Posted
I'm currently taking pregabalin twice a day I also take amatriptolin and zapain and tramadol which holds me down on a daily basis but when I get a flare up nothing will ease the pain it's a horrible condition I wouldn't wish it on my worst enemy xxx
What do u take xx
Vitav sadie1980
Posted
Well Sadie. I have refused EVERYTHING! I am afraid of side effects. I take ibru 800 & tylenol. I know it's not enough but that's about it! They gave me tramodol In the hospital and I felt like it really didn't help. I feel like the docs are over me because I won't take all the meds. I try natural healing and relaxation methods. Salt baths, heating pads. Vitamin C. Massages. I will be getting a colon scope soon too see what is going on with my stomach. Ugh. This is exhausting! I feel no one really understands. I have a wonderful hubby and children but I know they are sooooooo tired of hearing about all me aches & pains. Idk what to do! 😣😣😣😣
sadie1980 Vitav
Posted
Ah Hun I feel the same ! They are all tired of hearing oh my leg hurts oh my back etc etc lol that's why it's great to be on this board 🤗
You should try pregabalin Hun it's been a god send to me from crying everyday to just being abl to get threw the day x
Jitterbugss sadie1980
Posted
I recognise the majority of those symptoms. I hadn't put them all down to fybro, but I'm really glad I've seen this because now I know what I'm feeling is real. It's really hard to understand how pain can move around your body on a daily basis. At times I felt I was going mad or having a breakdown. I was formally diagnosed 3 weeks ago by my GP but they just want to give you pain relief and send you on your way. No explanation or information. I asked for a referral to a rheumatologist, neurologist or pain clinic but was told it wasn't necessary. Theresbso much conflicting information online about the best meds and vitamins to take. I'm still trying to get my head around the diagnosis and see what I can do to make my quality of life better. I don't want to be on pain meds for the rest of my life, I'm only 33. Thanks for sharing your symptoms. All the best