After having an MRI for another problem regarding my hip, they found a thickening on my anterior uterine wall. I went to a OBGYN/ONCOL and after examining me, said it was most likely a fibroid. He advised, since I'm 49, and do not plan on having children at this point, that I should have all my girl-parts out, ovaries and all, vaginally. That I would wake up on a patch, graduate to the femring, and never go thru menopause. He told me that my bones, heart, and skin would all benefit. I have no history of breast or other cancers in my family.
When I asked why take my ovaries, he basically asked, "Why keep them?" and then proceeded to tell me how horrid ovarian cancer was and wouldn't it be better to just get rid of them and not have to come in again.....
When I left, I was fine with all of it. However, since then, I've really had a change of heart. My uterus is not enlarged. While I do have a painful first 36-48 hours of my periods, and they're a bit clotty and heavy, they're rather light after day three, and stopped by day 6 or 7.
Right now, I just don't see the need to be honest. I think perhaps if we did some blood work to determine where my hormones are first.. then discussed it further. I do not have any perimenopausal symptoms. I was getting night sweats the last few years I was on the pill - but I stopped that at 42 (after 21 years - so my ovaries [1.2 of them - most of one was removed along with a dermoid cyst when I was 21] should be in good shape), and haven't had any since.
I'm in good shape, athletic, on the thin side, I definitely feel my uterus contracting during orgasm and cannot fathom what it would be like without that, so that is a huge concern.
I do have HPV and have had two abnormal paps - one ended in a cold-cone biopsy which came back a 4 on the old scale. Scared me to death. But clean since 1998. So in that respect, I might be smart in at least getting rid of the cervix and uterus.... however, after reading here, I'm not sure I should do ANYTHING at this point.
I'm going back to him for my annual pap next month with with loads of questions....
Anyone have any thoughts on what I should do?
Last edited by PsycheDancer; 07-16-2008 at 11:55 AM.
With all of your doubt, I highly recommend you get a second opinion. It seems a bit odd to me for him to be discussing what sounds like a radical hyst for the thickening of the uterus.
Have you tried anything else for your periods? ablation, UFE, etc?
I had a hyst almost 4 weeks ago. I'm 44. I kept my ovaries because I'd rather benefit from the natural hormones my body produces for as long as my body produces them. I'm reluctant to go on artificial hormones when I go through menopause. Your doctor's comment about "why keep them" ticked me off. It's like asking a man why keep your testicles if you're done making babies. :grrrr:
I don't like how he said that you won't go through menopause. You will. If he removes your ovary, you'll go into instant surgical menopause. You'll have the assistance of of artificial hormones, but you WILL go through menopause.
How did you end up being referred to a gyn/onc? Do they suspect the uterine thickening is cancer? Have they done a D&C or a uterine biopsy? Just curious.
Yep, I'd be seeking another opinion if I were in your shoes.
Pickle Eyes is right on the money. Have they determined why you have a thickening of the uterine wall ? And if so, how much of a thickening ? Anything less than 1 cm is normal and anything more requires an endometrial biopsy to check for abnormal cells. This is a simple procedure that is done in the doctor's office and you will have the results in about 3 weeks. Another procedure is a D & C (as pickle eyes said) which is a minor surgical procedure that essentially "sucks" out the lining (which later grows back) in order to have the whole thing tested. Many women our age begin to experience irregular bleeding due to our hormones and this is the usual procedure, just to be sure that nothing is wrong. If all is normal and you are not experiencing any symptoms that are ruining your quality of life then NOTHING and I repeat NOTHING needs to be done.
Why were you sent to a gyn-oncologist ? These guys are specialists in cutting women open from stem to stern and removing everything that is considered unnecessary. When someone is facing a diagnosis of uterine or ovarian cancer, this procedure is often curative (depending on the staging of the cancer) and this is why it is done. If you are a perfectly healthy 49 year old woman then a hysterectomy and oopherectomy would be the most irresponsible advice that a surgeon can give you. This is not minor surgery and you would have to go on HRT for a little while until menopause. I must say though that if he needs that new Audi then perhaps from his standpoint it's well worth it. I should not be so insensitive though .. these types of doctors see mostly women with gynecological cancers which can be quite devastating. This is often why for them taking everything out is a preventative measure. Keep in mind, however, that just because you don't have your ovaries it does not mean you will NOT get ovarian cancer. Even without your ovaries you can get a type of ovarian cancer which begins in the epithelial lining of the abdomen and not in the ovaries. This cancer behaves exactly like ovarian cancer and for all intensive purposes is just like it (the most common form of ovarian cancer forms in the epithelial cells of the lining of the ovaries).
It has now been proven that women who keep their ovaries until age 65 live longer and having a hysterectomy may cause problems such as bladder collapse due to the lack of support in the pelvic cavity. In addition, what you mention about orgasm is also a huge issue. A lot of women experience orgasm in the uterus as well as the cervix and vagina. I am like you and can actually feel my uterus contracting when I have orgasm. I would also be concerned about such a procedure (unless it was absolutely necessary).
At the very least, you need to go and get a second opinion from a gynecologist (not a gynecological oncologist) and preferably a female because I am seriously beginning to wonder about a lot of these guys. You can also tell this guy that you will agree to have your ovaries removed if he agrees to have his testicles removed for the same reasons (to avoid testicular cancer although unlike ovarian cancer, this cancer affects mostly younger men). If you were on the pill then your risk of getting ovarian cancer is even lower than the norm (even though you are no longer on it, the reduction in risk persists). The normal risk of ovarian cancer (ie. without any family history of breast, ovarian or colon cancer) is about one in eighty women. This is very low. Being on the pill for more than 5 years cuts your risk in half. The normal risk of breast cancer is one in nine (not so low) and having been on the pill this risk is just slightly increased (I too was on the pill for 20 years and stopped at the age of 41 .. your risk returns to normal after 10 years of being off the pill). It is known that HRT increases your risk of breast cancer even more and you would need HRT if you had your ovaries removed so if your doctor wants to play the risk / benefit game, give him these stats. And by the way, menopause is a natural female condition and not a disease that needs to be treated with drugs.
Sorry this is so long but when I see posts like yours I get so infuriated with these surgeons who think nothing of wheeling healthy women into surgery. Make sure that everything is OK (if your paps have been normal for so long then you are fine) by having all of the necessary tests (ultrasound, endometrial biopsy etc..) and if the tests are fine then so are you and you don't have to be "fixed".
Absolutely get a second opinion. My wife's first doctor pretty much said what your's did. The second doctor, and mine you both were female and about the same age and you'd assume level of training, was totally against doing more than was absolutely necessary. My wife took the advise of the second doctor and had just her uterus removed. That was two years ago and she's had not one problem.
I need to disagree with one thing you said, though. I've bolded this part.
Originally Posted by estria
Make sure that everything is OK (if your paps have been normal for so long then you are fine) by having all of the necessary tests (ultrasound, endometrial biopsy etc..) and if the tests are fine then so are you and you don't have to be "fixed".
Take good care of yourself.
I have always had my paps, every year since I was 19. I've never had a bad pap. At Christmas I went in for my annual exam and my doctor asked if I'd let her run the HPV/dna test along with my pap. I said sure. The pap, as usual came back clear. The HPV/dna came back positive for high risk HPV. That lead to a colposcopy which came out clear and the doctor didn't need to take a biopsy of the exocervix. "Just to check" (doctor's words) she did an ECC (endocervical curettage) to check the endocervical canal. There lay my cancer (adenocarcinoma Ia1). That was diagnosed with a cone biopsy. I had my hysterectomy June 18th and it is the only treatment I need for my cancer.
From my experience I strongly encourage women to have the HPV/dna test if they are over 40. I also strongly encourage women to ask for an ECC if their doctor performs a colposcopy.
So, PsycheDancer, if you haven't been tested for HPV,then I strongly suggest it. Otherwise, Estria gave some AMAZING information!
Psyche, please write back and let us know how you are doing!
WOW! estria, and everyone, thanks SO MUCH for all the info.
The more I think about it, the more I'm agreeing with all of you.
I got a referral to see the ONCOL from my PCP because my regular OBGYN I'm just not very happy with, and I feel like he resents getting HMO patients because he doesn't get paid much when I go see him, so why spend the time with me? I'm surprised the ONCOL only physically examined me and didn't recommend any other diagnostic tests to determine exactly what it is... just take it all and be done. As if HRT is the new botox.
I've just made an appointment with a FEMALE OB/GYN for my annual and a consult. Unfortunately, she's the ONLY female OB/GYN in my medical group (which I love. First time EVER I've never had any insurance issues. Thankfully.)
So - I'll see what she recommends and go from there. Appointment is 8/22 - I'll keep you all posted.
Thank you all so MUCH for your help!!!
Last edited by PsycheDancer; 07-16-2008 at 12:01 PM.
I can't believe this doctor is still in business with all that hogwash kind of information he is giving I'm guessing to all women. He actually sounds like he wants to torture women because there is a big reason to keep your ovaries! It is much better to in my humble opinion to go through a normal menopause and not take out the ovaries and put your body in shock all at once. It is not a pretty picture since he has no idea if the patch or hormones will be compatible to you. Especially now with all the controversy over which hormone to use. Doing a partial hysterectomy is ok for the bleeding/clotting reasons but never give up the ovaries unless they are also diseased and sometimes they don't know until they get in there but I don't know I would trust this doctor to do the surgery in fact I would go to another doctor period. The bottom line is what you want and if you want to have it done or not. I had a partial hysterectomy in my 20's and was freeeeee of all the monthly periods/pain/bleeding but still having an ovary my bones and body stayed healthy. You do what you want...but please change doctors ...try a female doctor at least they have some understanding of the female body.
Wow, PickleEyes, that is some amazing story about your situation. I was always under the impression that the Pap would catch abnormal cells even BEFORE they turned into cancer. Most often cervical cancer progresses slowly (I say most often because occasionally women are very unlucky and end up facing more agressive forms) and I figured that even if one pap did not catch something, that several done over several years would serve to give you strong assurance. I believe that most general practitioners are also under this impression (or if not they are keeping it a secret and pushing this impression upon us). Why on earth then don't they do an HPV test as well ? Is there any reason why you think that women over 40 are especially at risk ?
PsycheDancer, as you can see ALL of the people on this thread feel that the surgeon you visited did not give you a sound option so your first instincts were bang on. I am so glad that you managed to find a regular gynecologist. A gynecological oncologist is THE person to see if you are facing a cancer diagnosis but he(she) is a special breed of surgeon who is geered for this type of thing. When I discovered I had an 8 cm simple cyst on my left ovary I actually went for several opinions, one of which was a gynecological oncologist and I was so uncomfortable with him that I almost left in middle of my exam (he actually had the gall to give me a pap smear even though I had just had one two months previous which was fine .. there was no reason to do another one .. except perhaps .. $$$$$). The only thing that kept me from storming out of his office was the fact that I was only wearing a hospital gown The gynecologist that I went to afterwards was much more logical and understanding in her approach as was my general practitioner (who I love).
Do let us know what your new gynecologist says about everything and take good care of yourself.
Saw new FEMALE OBGYN Friday. LOVE HER. She did a pap, sending off also for the HPV test to see exactly which one I have since I don't remember and there are so many, and an ultrasound.
She said she'd see what the pathology says, then go from there. Most likely monitor the size of the thickening spot on an annual basis since it's not causing me pain or any weird problems. And since I am theoretically close to menopause anyway, it will most likely take care of itself.