Published Mar 31, 2006
after53
4 Posts
Hi.I have learned if you want facts you ask nurses.I need some feedback,maybe help me research the answer to this.At the age of 40(gotta love mother nature's humor),I started struggling with endometriosis pain.It was extensive enough to do the laparotomy and cauterize but not it is back.We are blessed with teenagers and I never suffered the trials of infertility for which I am grateful.It is a horrible disease and I try to educate people about what I know as it has a bad connotation like it is in our heads.I work .75 in an Er. I love my job. I want to be happy at work..well okay maybe I don't love triage.Anyways,the gyne thinks Lupron injections are the reasonable first line treatment.I try chemical menopuse for 6 months,clear up the lesions and then return to monthly life to await a second menopuse..hmm,why am I not loving the sound of that.No pain,that's inviting.The rest of it though is scarey.Drugs before surgery right?The net is full of too much information..alot of lawsuits and post Lupron stories that are frightening.The gyne can't guarentee anything,of course but she says at least i will know what I will feel like if we do end up with a total hysterectomy.She would do the hyst if I insisted now but not willingly.She doesn't like any of the other drug treatments she says.Ideas?Comments?Anyone been there done this?Will I still be married after two menopauses.My friends might understand but it's a hard one to tell your husband you might become a frothing monster in two weeks.I know it is mind over matter,I plan on saling through menopause on a weekend away with the girls.This was not in the plans.Have a great weekend.Thxs for listening.
student4ever
335 Posts
Just a thought - maybe get a second opinion before taking the drugs? My aunt had a hysterectomy last year d/t years of unbearable pain and frustration as no one took her symptoms seriously. What they found was endometriosis so bad that one of her ovaries was actually fused to the uterus with endometrial yuck. The gyne said she had never seen such a bad case of endo before. My aunt is 45, and says that she opted for the hysterectomy without even knowing she had endo, simply because the pain and frustration were just too much, and since she wasn't planning on children anyways, she might as well just get it out and done with. She is SOOOOO unbelievably happy with her decision... she's lost weight, she looks so unbelievably good, and best of all, no more pain! She did have to have another surgery to remove her other ovary as she ended up with a melon sized cyst and ovarian torsion (OUCH) but that was just an unexpected bump in the road. She says her new philosophy about the uterus is "if you're not going to use it and it's causing you problems, take it OUT!!!" Her gyne is awesome - she really listens to patients and their concerns, and really believes you when you say "I don't know what it is, but I just KNOW there is a problem!" In some cases I think drugs are a best first line treatment, but in the case of endo, especially when you are done having children or decide you don't want to have them, it seems that everyone I have talked to recommends a hysterectomy. The fact is, if you have endo, even if you go through the real menopause, you may still have uterine problems, and are at a greater risk of having continued problems... I have talked to many women who have had hysterectomies because of problems like endometriosis, and they are simply extatic with their results. Just something to think about before you try a drug like Lupron. Sounds like your gyne is pretty closed to other options, so it might be helpful to talk to another gyne and see if they concur, based on your personal medical history. Hey, it never hurts to add another brain to the situation! Good luck to you, I hope you soon get some relief - you are correct that endo is a terrible disease... I wish you all the best whatever you decide! Just remember to do what is best for YOU, not for your gyne or anyone else.
SuesquatchRN, BSN, RN
10,263 Posts
Second opinion. And mybe a third.
I struggled with an interminable perimenopause. Lasted 15 years. I finally, after much searching, found a doctor who helped.
chris_at_lucas_RN, RN
1,895 Posts
I too had endometriosis, had an exploratory lap at 23, a TAHBSO by 24 and it took me about 10 years to get over the psychological slam.
BUT. I had wanted children (thank God I'd given birth to one before all this came one, and adopted another soon after). No one prepared me for menopause, I didn't get the shot in surgery, nada.
Consequently, you can imagine what a joy I was to be around, and, frankly, how little joy I had in my life at that point.
That said, if you are not planning on having more children, if you want an absolute end to the pain (and I remember it well, almost 30 years later!), then the surgery is the way to go.
I will tell you that what has stayed in my memory the most clear is how little I was aware of the pain I did experience before my hysterectomy. I was up and walking around and bending over and touching my toes less than 24 hours postop (and this was in the late 70's) without pain meds! That was my clue about the degree of surgical pain relative to the degree of endometriosis pain! (My surgeon said it was because of his wonderful technique.)
Don't worry, you can still have multiple menopauses! Just go and off hormone replacement! (Something else nobody told me, that I had to learn for myself.) :rotfl:
The only thing I can offer is, I did read somewhere that endometriosis is highly correlated with high achievement and high intellect (no sure what causes what, but who cares? bask! ), and you are certainly not alone.
My hat is off to your OBGYN who would only do the surgery with hesitation. So often they are in such an all fired hurry to get you in there and get that bill submitted to the HMO, they forget you are in charge of your own health.
Good luck to you, your sister in endo!
kizzysmom
21 Posts
I am also an endometriosis survivor. Since the age of 15, I had days every month where I fainted, projectile vomit, agonizing pain, etc. Birth control pills worked great for me, but when I tried to get pregnant and couldn't I did 7 IVF's with no luck. Adopted our son and then scheduled a hysterectomy. By chance I met an accupunturist. After 2 tx, I had no cramps, fainting or any symptoms with period. I would go to her once a month or less until menopause 2 years ago.(I am 49) Peri & menopause were a breeze compared to endo. I have tried bioidentical hormones but endo symptoms came back after all this time. I think I will just learn to love my HOT flashes instead.
Natkat, BSN, MSN, RN
872 Posts
I've heard that the methods for dealing with endometriosis (Lupron and the other surgery that I cannot remember the name of) don't have very good results.
I, too, have heard wonderful success stories from women who have had hysterectomies and love it. There is so much in the media about doctors performing too many hysterectomies, that now they are almost too reluctant to do them anymore. I have a close friend who has miserable symptoms but her doctor won't do a hysterectomy because she's never had children. (She is 42 and does not want children). I have found her writhing in pain on the floor and it's horrible that someone should have to go throug this.
Anyway, if it were me and my baby days were over, they wouldn't have to aks me twice if I wanted a hysterectomy. No more periods! Where do I sign up?
VivaLasViejas, ASN, RN
22 Articles; 9,996 Posts
Closing thread due to nature of original post (seeking medical advice, which is not within our scope of practice as nurses) and length of time since OP posted it.