[acard]

I am going to see my ob-gyn tomorrow to discuss a hysterectomy.
I would like to know from you all the pros and cons:hehe:
I can't do hormones, and I have had a endometrial ablation almost 4 yrs ago and not wanting to do it again.

I appreciate all your advice in advance.


Thanks,
Becca

 

[JudifJ]

Sorry in advance - gory details

Hi Becca

Big ((((((hugs)))))) to you as I know what you are going through.

I had all sorts of problems - ovarian cysts, fibroids, endometriosis, prolapse - not to mention pregnancy related problems, too. I was 40 when the decision was made for a total hysterectomy and bilateral salpingoophrectomy. I had bled constantly for 54 days before then and couldn't wait to get rid of the "trouble maker".

I'm not saying it was an overnight success as the op itself was difficult as I had so many adhesions and bled profusely (borderline for transfusion but didn't need it in the end). It took a good 2.5 years to really get over it but by then my lupie symptoms had manifest themselves and then started another batch of consultants.

As I couldn't have HRT due to previous pulmonary embolism (start of APS????) I hit the menopause before I had even left the hospital. I was having nightly hot flushes and feeling most peculiar. So the consultant prescribed Dixarit (can't remeber the generic name) to control the hot flushes. This is an actylcholine suppressor (messes with the brain) which I had been prescribed about 20 years previously for migraine (ah ha! another APS symptom). They did work as the brunt of the flushes stopped and when I weaned off the Dixarit a year later they didn't come back too badly - probably had only 10 or so before they fizzled out completely.

Didn't have time for mood swings as I tried to get back into work and I don't think I am very prone to them anyway. One positive effect is that they have slowed the growth of hair on my legs (less shaving!) and underarms.

The main positive effect is that I don't have to worry about my "bits" anymore. I don't have the awful pain I used to get prior to my periods and periods that were so awful I would have to take to bed. I didn't have to have any more operations for cyst drainage or removal and I don't have such awful pain going to the toilet (bladder was stuck to uterus and uterus was stuck to bowel). Also I don't have to "be prepared" all the time with sanitary equipment and now can wear more or less what I like with confidence that I am not going to have an "accident". (Plus not having to worry about contraception, either .)

On the whole it has been for the better, if you discount the autoimmune stuff. There is a lot to take into consideration as it is a major operation. I weighed the pros and cons considerably before going ahead but my gynae sort of made the decision for me as there really was no alternative.

It is a big step but I was very glad I made it.

Wishing you all the very best.

Much love

Judi xx

 

[cuteynblue72]

Hello. Sorry to hear about all of your problems but when I had my hysterectomy at the age of 20 it was a god send. I was having problems with constant bleeding and they had found a 8 to 10 inch cyst on my one overy and a smaller one on the other plus they found that I had cervical cancer. Once they did the hysterectomy all the problems went away which was wonderful. The only down fall was I was pushed into full blown menapause which hit me like a ton of bricks from about the 3rd day after the operation.

I suffered with hot flashes my husband laughed at me and would not sleep with me for the longest time because it was the dead of winter and I would sleep with a fan on high speed because the night sweats got so bad. The hot flashes was a pain in the butt and the mood swings were off the hook. These symptoms lasted approximatly 2 years and now I will have a occasional hot flash but other then that the symptoms have disappeared for the most part.

I don't mean to be personal but there was only one other symptom and that was that I deal with vaginal dryness now. So I invested in the ky lubricate because if I don't use that the dryness becomes very painful. The other thing is that it may take longer to become aroused or have an orgasm. I felt embarassed after the surgery and I could become sexually active again I had to ask the doc about this why it was different and it took so long to achieve satisfaction and the doctors told me not to be discouraged but due to the hysterectomy I would still be able to achieve orgasm but it may take longer to do this and she was right I finally got back into the groove of things but it just takes a little longer.

There for the longest time I did not want to be touched because I went thru a period of time where I felt like I was less of a woman because of the surgery and the doctor explained to me that a lot of women feel that way after this type of major surgery but in time this will pass. And after a while this did to pass.

Then I got severly depressed because all of my friends were getting preganent and even tho at this time I had already had my three children I knew I would not be able to have anymore it really got to me and to this day it still bothers me but now I just take care of everyone elses child but the good thing is that if they are misbehaving or being a brat I can give them back to there parents. I can spoil the crap out of them and hand them back which is great having the joy of a child in my life and not having the responsibilty of raising them. Don't get me wrong I would love to have another child but I know that it is not possible.

I also could not take the hormone replacements because they told me that it would counteract the meds that I was taking at the time. It will take a while to get used to the fact of no longer having your female parts but eventually you will get used to it and it does have its pros about it no more periods and the hair growth slows down greatly I am lucky if I have to shave my legs and armpits twice a year now which is great!!!!

I wish you good luck and hope you make a speedy recovery with this decision. If I can be of any help in any way feel free to ask. Laurie:wink2:

 

[mary520]

Hi Becca,
I had mine 18 months ago and it has been wonderful for me. I wish I could have had it years ago. I haven't had any hot flashes yet because the left my ovaries but I read somewhere that even when they leave them they start slowly dying soon after and put you in premature menopause. I am glad they left mine so it is a gradual thing and not suddenly.

I was so nervous before the surgery but it wasn't as bad I thought it would be. Mine was vaginal so I felt kinda like you do after giving birth but a little worse...mainly very sore for a few days....I was drugged up pretty good so it's all a little fuzzy I was on the maternity floor and in my drugged up stuper all I remember is thinking how good it was that I didn't have a baby to take home from the hospital with me!

I wish you the best and hope all goes well for you.

Mary

 

[runnergirl]

Hi Becca,

I had mine done November of 2006 and haven't regreted one second of it. Like others that posted, I had all kinds of issues including no longer allowed to have any type of hormone.

I had an abdominal hysterectomy because of endometriosis, my gyno and I chose to leave the overies (even though I take the chance of endo coming back) he just cleaned them off completely. That way I wouldn't go into menopause immediately, it would be more gradual.

Like Judi, everything was fused toghether and I always had cyst and was ALWAYS having a cycle, it was non-stop. Enough is enough ya know! When they sent everything to the pathologist I had five different infections going on. No wonder why I was always in so much pain.

Ultimately, it has to be your decision. I was 38 at the time and everyone tried to say I would regret it or that I was too young, but they weren't walking in my shoes, I feel I did the right thing for me and haven't missed a beat since.

Good luck in whatever you decide, I think you'll know if it's right in you're heart.

 

[BaumshellLupieMom]

Dear Becca:

I had a hysterectomy a few years back, and am so so grateful that I had it done!! I feel so much better now and don't have the horrendous cramps to deal with anymore as well as the other menstral issues, ovarian cysts and my right ovary was enlarged (can't remember the term). I chose to keep my other ovary so I wouldn't go into menopause as I preferred doing the natural course of things if at all possible. It was done both by laperscopy (sp?) and vaginally. I'm not a candidate for hormone replacement because of the Breast Cancer. And, at 47 now, no signs of menopause yet.

I hope all went well with your appointment. You've been given great advice by all that posted to you. Hugs.

Love -- Susie

 

[sam101360]

I have not had one yet...however I did have ovarian cancer (Iwas 34 at the time), they took the bad ovary, tube and part of my uterus. They left all the rest and tied my other tube.

For the next 7 years, I never again had a normal day...LOL...I went into menopause about 10 days after the surgury, the oncologist said that would probably happen. My gyno passed away from cancer...I left things alone and suffereded in silence for 7 years.

Then I saw a therapist to help with the lack of desire and mood swings. She sent me to a gyno, who put me on very mild HRT and the old me came home! I had to stop the HRT due to the lupus and side effects, but now I am past all of the problems.

I am due to have a hystarectomy in the next couple of months...I have fibroids, scar tissue and my remaining ovary is enlarged. Gyno tells me I will have no changes due to the fact that I have had them all already, so I dont care...except I have to have major surgery which I would prefer not to do.

Good Luck - let us know how you get on - Stephanie

 

[Lily]

Hi Becca,

How did you get on with the Obgyn? I'm wondering why you don't want to consider another endometrial ablation, given the choice, I would prefer that over a hysterectomy. Hysterectomy is major surgery and ablation is a minor surgery, so as far as recovery and complications go the ablation would win hands down if it's possible for you.

Everyone has given you the positives and for many it is a great op to have done.

But given the fact you can't do hormones do think carefully.

If they leave your ovaries you will still get PMS and other cyclical problems you had prior to a hysterectomy and sometimes it's more upheaval because the surgery interrupts the blood supply to the ovaries and they seem to play up more.

If they take your ovaries and you are without HRT then the long term implications of that are osteoporosis and who knows what else that the jury is still out on. You will suffer extreme immediate onset of menopausal symptoms which will put your body under a lot of stress.

Adhesions are a distinct possibility with any abdominal surgery and something I had which required further surgery 6 months after the original:

http://www.thelupussite.com/forum/showthread.php?t=63779&highlight=hysterectomy

If you do go ahead then bring your Rheumy into the loop and then they can cover you with extra Pred and keep a watchful eye on you to control the Lupus both during the op and the recovery period afterwards.

My experience was not a good one as you may have gathered :wink2: ...........it sent my Lupus into a frenzy. I think the reasons for that though were that I was not diagnosed at the time therefore left to battle it out, I am extremely sensitive to hormone changes (left ovaries but it still left me in turmoil) and I also had complications i.e. the adhesions, a prolapse of bladder/vagina/rectum. The prolapses were made worse by the fact that they first probably prolapsed a little (normal with that sort of surgery) and I had undiagnosed CNSV. My body 'perceived' the changes and went into complete and utter overdrive attacking the site. The Lupus attacked my spine and nervous system and really went to town on those weakened structures. Things are a bit better these days though, but it was awful and terrifying when it happened.

It's important to hear all sides and I thought I would balance the argument up a little, it's not for everyone.

let us know what you decide.

love
Lily

 

[acard]

Thanks ladies:thanx: I had to postpone my appt. I had a TIA that of course made me go to the er. It left my left side weaker than it already has been. I see the neurologist tomorrow. I will hope to find out more.

I would be getting my ovaries removed too. I appreciate the honesty.
I have a few morw questions.
1. How did it effect your libido?
2. What other menopause sx's besides the hot flashes do you get?
3.Did it affect your lupus and cause a flare?
4. How long to heal to where you are up and about?
5. My option is a procedure they can do to just my ovaries. Then treat my uterus. So it all would still be there. I do not know what the procedure to my ovaries is????
Thank you so much for all your wonderful advice.

Hugs,
Becca

 

[helloos]

Hi there

I had my uterus removed and did not have Lupus (at least I don't think I did) when I had it removed. But my recovery was bad and ended up with major infection. My ovaries are still there.

When chosing removal of ovaries or uterus. The ovaries obviously will cause more side effects when removing them. However, it is really not suggested these days to take hormone therapy - at least not long term- as I have heard on medical shows, etc. Menopause would set in and you would have those symptoms.

Everyone is different so there really is not telling what happens to one with side effects may not happen to another.

If it were me and they were removing the ovaries and suggested the uterus, I would remove all only because you are definitely taking the ovaries out - so my feeling would be just take the other out and go through it one time. That is me though. I am not sure what your medical reasons are for either one.

If a lesser procedue can be done as listed above - I would try that first. As I don't know where Lupus would play with the surgery.

I guess between your doctor and you and all your research you will be able to come up with a decision and feel ok with it.

I will be praying that you can come to a decision that is best for you and that it will all work out for you.