Hysterectomy Anyone? With This Disease

Discussion in 'Fibromyalgia Main Forum' started by cilli, Jul 10, 2006.

  1. cilli

    cilli New Member

    My doc has informed me that I have cystitis, not sure of the spelling, he said I need a new procedure that they do which is burning the lining of the uteri to get rid of the sist? Or I could have a complete hysterectomy so that the problems would not reoccur. Just wondering which is better? Has anyone had a hysterectomy done with this disease, i'm worried about recovery and the surgery.

    He said about 70% of women that have the small procedure done end up having more problems and getting the complete surgery done. My Mom and sister say go for the whole surgery and get it over with, they say the hormone treatment afterwards is no big deal. By the way my Mom has fibro and Lupus just like me. Just want to know if anyone else has been in this boat?

    Thanks for listening
    Hugs Cilli
  2. tandy

    tandy New Member

    personally,...I would'nt get a total hysterectomy either.

    No way!! sure if I had a life threatening disease.

    Get the smaller procedure done first~ please,..
    please, research your options!!
    Drs. are too fast to tell ya 'how to cure ya' but alot of times it is'nt a cure. (just more money in their pockets!)

    I walk the talk too Cilli. I was told I needed a total hysterectomy for Endometriosis 2 yrs ago.
    after ALOT of research and contacting other woman who have been thru it already,..for Endo,...
    Some of the woman still had pain/cysts/scar tissue. etc.
    even after a total Hysterectomy!!!

    Best of Luck~
    Hugs
    Tandy
  3. MamaDove

    MamaDove New Member

    Please listen to the previous advice and RESEARCH your options...

    Stormy's story is all too familiar to me...I had endo and they HAD to go in to remove a mass, they took my left ovary and tube along with a 4 lb. mass...I HAVE NOT BEEN THE SAME SINCE!!! My energy was gone!!! Noone would listen to me either...My surgeon even said I WOULD NOT HAVE ANY HORMONAL ISSUES because I still had one left...

    I know this was the first trigger for me and it's been downhill since then...

    Please, think about this and I personally would heed the 'warnings' rather than listen to the people who tell you "It's no big deal"...I didn't think my issues were a BIG DEAL while I was in for surgery and my friends and family were partying for the 4th of July...I knew soon after the operation that I was NOT THE SAME...

    Initially, I would favor the less invasive approach but certainly try to research your particular situation, I am sure there is much info out there...

    To this day, I still have women comment on how their hysterectomy was the best thing that happen to them...I had a phenomenal, talented surgeon and yet I sit here today with the constant reminder of who I used to be...Granted my surgery was urgent to risk torsion and cutting off my blood supply, but I think if I would have been able to wait and have other options, like you at this time, I would choose the less invasive and looked into this deeper...

    Make an educated decision and know you did the best for YOU...

    Peaceful days ahead~Alicia
  4. Adl123

    Adl123 New Member

    Deear Cilli,
    Please, oh, please, think long and hard before you make a decision.

    Let me tell you what happened to me:

    I had a lot of fibroids in 1974, and had a hysterectomy (partial). While in the hospital I had my first anaphylectic reaction and out of body experiene. I almost died, or actually died, twice. My fatigue and started getting worse at this time.

    Sever years ago I had a cyst the size of a baseball on one of my ovaries. I was going to have it removed, but, thanks to all that is good, I had a fight with the anesthesiologist the night before.

    You see, I know that I could not have general anesthesia, because I had very bad raeactions to it before. When I told him that whe went balistic and started yealling at me, and cancelled ths surgery.

    Actually, that was the best thing that hapened to me. I decided to have the cyst aspirated and biopsied instead of having surgery, and found out that it was not cancerous. It might grow back, but I can have it aspirated again.

    All cysts are not cancerous, and all do not becomse cancerous. I would suggest that you get a second or even a third opinion, as to what kind you have, and what is the best route for you to follow. From what I have heard, surgery, and the chemicals that go along with it, do nothing to make CFIDS or Fibro any better.

    Good luck!
    Terry
  5. mariee

    mariee Member

    Hi there,
    Any surgery is major, and I found a great website that helped me make my decision.
    IT is hystersisters.com
    So much great info, and a lot of the women there have FM too.
    Great for pre surgery decision, and great for all aspects of surgery.
    You can also scan the post surgery part to see many women do fine, but many women years later are still having problems.
    I would also advise a second opinion.
    I did have a hysterectomy...no choice w. my situation,but I am not pain free.
    Best wishes.
  6. Lolalee

    Lolalee New Member

    I had a hysterectomy many years ago and have since wished many times that I had gotten a second opinion. My doctor was really "blase'"and convinced me that it would be the best course because I had horribly painful periods and PMS a week before and the week of my period. He described the procedure as "no big deal". So, I had it done and the recovery was "HELL"

    Please do a lot of research. Do you have Interstitial Cystitis? If so, I'm not sure that this is a good reason to have a Hysterectomy.

    You are right to ask questions. A Hysterectomy is major surgery.

    Good luck,

    Lolalee
  7. cilli

    cilli New Member

    Thanks to all of you for your responses. Something told me this was the place to ask for opinions. I too don't think at this time in my life I am ready for the full surgery, the recovery time alone is to much for me. Plus I have to move in with my sister so someone would be there to take care of me during recovery. So I will check the hystersisters site, but I think my mind is made up to go with the small stuff first. Thanks again to all of you!!!!

    Love and Hugs

    Cilli
  8. DFL

    DFL New Member

    3 years ago I had the lining burnt, and less than a year ago I had to have a inside pouch made for my bowels and when they opened me up I had that to and while they were there they gave me a total hysterectomy, so I had a lot done at one time and I feel like I'm still recovering. Donna
  9. CgWife

    CgWife New Member

    I had a Hysterectomy 10yrs ago, I tested positive for pre-cancer cervical cells that came back after I had another treatment that did not work. I don't know how old you are but my suggestion to you would be first research and see if there are other options for you and then I would get a second oppion. If you do decide to have a total Hysterectomy there are a few things that you will need to consider. #hormal replacement therapy- I am against this because taking hormone you do increase your chance of breast cancer. I do not take hormones and I am going thru menopause pretty good except for hot flashes. they are not that bad. I was in my early 30's when I has my Hysterectomy I adjusted fine. I had a vagianl Hysterectomy which you recover quicker and minimal scars ( they do have to make 2 small incisions in your belly area) But I did not have any pain which I was quite surprised. So what ever your decision is Just pray about it and you will know to make the right choice. The surgery was not bad at all. (at least for me).

    Good luck Cilli I will pray for you and let us know what you decide to do.
    God Bless
    CG Wife