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
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.
Hi Sadie I have had fibro for over 20 years I was in very severe pain and around the same age as you when I had to have a full hysterectomy when I started to recover from the operation I found the pain in my abdomen was less severe I felt loads better.
hope all goes well for you.
take care
Shirl x
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
Hi Sadie,
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
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
That's what I wanted to hear lol ! The pain every month is unbearable to the point it feels like full blown labour x
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
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
Hi Sadie,
I had a full hysterectomy at age 35 due to endometriosis and like you it came as a bit of a shock. They had planned on taking one of my ovaries as it was diseased, but after the op, they admitted that they had taken the wrong one, so I then had to have another op to remove the one they should taken away first time. This then threw me into a rapid menopause, I was put on HRT for a few years, which did help, but it affected my unstable angina so had to stop it. I never regret having it done as like you, I used to bleed all the time.
I know they can sometimes do the op through keyhole, that didn't happen in 1983 so I was cut along the bikini line and couldnt do anything for about 4 months. I hope it all goes well for you. x
Hi Hun
I will have a estergon tab to take ever day until I'm older which the doc says that's nothing to worry about so I'm ok with that just bit shocked that my cervix is honing to be honest ! Will effect my sex life etc
I had to have a hysterectomy when I was in my early twenties hope everything goes well for you
Hi Sadie,
I had Hysterectomy approx 3 years ago. I had fibromyalgia at the time and didn't Know I had fibroids the size of grapefruit inside me.
I was having some breakthrough bleeding and thought things might be changing . I got very weak and became bedridden from the fibromyalgia.
I'm sure the fibroids weakened my body too.
They thought it was cancerous so we decided to do the hysterectomy.The surgery was not thst bad , but right after sugary in the post op area I had a lot of pain. More pain then usual at the incisional site.just make sure you are medicated comfortably, because us with Fibro do experience more pain then others do. Due to increased sensory nerves and things.
I was on a PCA which is a patient controlled anagelsia. I would recommend pressing that button as often as u need it. Don't wait for the pain to escalate before u take your pain mess.
Otherwise I was Exhausted the day after but I got up and walked, because I had to fly to Virginia to see him graduate from the Navy.
I left the hospital the 2nd day. The dr preferred I stayed 4 days, but I couldn't miss it.
My husband pushed me around in a wheelchair, because it does take a long time to.
Just so you know, the swollen stomach lady several months, but the pain is tolerable. Make sure u get pain medication for home and you'll do fine.
I would also recommend a abdominal binder band with velcro. That helped keep me secure and less pain.I bought mine on the web site Hyster Sisters. They have great information and other woman thst can answer questions.
I wish u luck and just take everything slow and don't over do anything
Hi Sadie
Fibro, endo, JRA, Crohn's....45 years later and I still feel so much better...no pain, no bleed...
hugs
Thank you for the advice Hun it's much appreciated going to ask about more pain meds after op as scared it won't be controlled! I also told them I didn't want op until after Xmas I have three children so need to be up and about for them
That's sounds great ! Just hope it ends the labour like pains I suffer every 20 days or so x
Hi Sadie
I had hysterectomy at age 30. After much discussion with my surgeon we decided on the sub-total route which meant leaving the ovaries and therefore not needing HRT as the hormones would still be produced (he said not guaranteed but usually works that way). I managed without HRT although the down side of sub total was that annual smear tests are needed. Can't say I have noticed one way or the other whether it made any difference to the fibro but it certainly made a difference to me. I must say not having to buy all the necessary stuff needed when one bleeds constantly was a great bonus! Glad to hear you have been awarded a blue badge - something I am considering applying for but feel really nervous about it. Good luck with the surgery and remember accept any help offered and pace yourself.
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?
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
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! 😣😣😣😣