Need advice!

Hello:


I'm new to this forum and need some guidance...please!

I was diagnosed with endometriosis 10 years ago (I'm 54 now) and suffered through the pains of that as many of us have. I was very happy when I became menopausal 10 months ago!

About 2 months ago I started to feel intermittent cramps and sharp pains on right side. no bleeding though. It became worse with time and now the pain is continuous and debilitating. I have had a Ct scan and a pelvic / vaginal ultrasound. They found numerous uterine polyps, fibroids and a cyst on the right ovary. I continue to have pelvic pain (sharp & burning). My Doctor suspects that I have adenomyosis and that coupled with my history has lead him to recommend an abdominal hysterectomy.

I'm currently awaiting an appointment for a second opinion.

My concerns are: 1)possibility of cancer (it has not been ruled in or out) and 2) the relief of pain. It is very difficult to take the time to make informed decisions when you are in continuous pain. My immediate reaction is to agree to have done whatever is necessary to stop the pain. But on another level I know that I must slow down, and make an informed decision. To help,I've been prescribed with a tylenol/codeine medication but it barely makes a difference.

My Doctor is of the opinion that the only way to be sure that cancer is avoided is a complete hysterectomy. I need to hear other theories/opinions and the experiences of others.

At this point should I also seek the advice of an oncologist or are they called in only when cancer is confirmed?

Based on your experiences what questions should I be asking, what information do I need?

Thank you in advance for sharing your experiences and advice.

Redpea. At 52 I underwent a TAH/BSO for an essentially benign condition. I also suffered a complication .

Get 2-3 opinions before making a decision. That is my biggest regret I didn't. I have had 3 opinions on the repair status of my ureter and it has been a most enlightening experience.

My gyn was of the same school of thought, avoid the risk of cancer and remove organs you are "done" with. Clearly, as I go through the process of dealing with the effects of the complication I have run into a large number of practicioners who are shocked that anyone is still recommending hysterectomies to be done with it, or because you are in there, and /or for cysts. It seems to be an outdated practice that my doctor and many other still cling to.

The American College of Surgeons has a policy that specifically says that the risk of prophylactic hysterectomy outweighs the benefit. I do not know if the American College of Obstetrics and Genecologists has a similiar policy.

Cysts can cause severe pain. Mine caused none and had been followed for a few years. Benign cysts can hang around for years in menopausal women and are not unusual. Small cysts can be dealt with laprascopically it they are causing pain or look suspicious. With my 20/20 hindsight this is the most that I would do.

Fibroids and adenomyosis are generally cured by menopause. Your uterus may be completely unrelated to the pain you are experiencing. I know nothing about polyps. Are you on HRT? Is this a factor? Is the cyst on the right side?

As an aside, over the years I attributed many of my pelvic aches and pains to my ovaries or uterus, now that I have none of the above and still have some of the same sensations, I have nothing to blame the pain on. We have alot going on in there and the bowel may be the guilty party!

Having suffered a complication I feel it is important to share my experience with others.

Hi Redpea!

I"m sorry that you are in so much pain and discomfort!
I'm glad you are seeking a second opinion, hopefully that will help clear up some of the confusion you are experiencing (and understandably so!)

I don't know anything about fibroids, benign cysts, polyps or adenomyosis. ( what I do know I just learned by doing an internet seach ... http://search.yahoo.com/search?p=adenomyosis&fr=ieas) I'm not a doctor, nurse, or even the most knowlegable person on this site. I cannot tell you one way or the other, but my advice would be to learn all you can about what they suspect the problem is, what your options are.. ALL of them.......how they expect a hysterectomy to relieve the problem, what KIND of surgery you can expect (laproscopic? Total Abdominal Hyster? Total Vaginal Hyster?? Radical?) Will they take everything or try to save what they can? etc etc etc) and what your recovery is going to be like. And although the pain right now may be great, carefully consider ALL your options. Don't be afraid to go for 3rd and 4th opinions even if something isn't 'sitting right' with you.


:key: ALSO........If cancer is the LEAST bit suspected, I would strongly urge you to seek a consultation with a gyn/ oncologist. EVEN IF HE TELLS you your chances of having cancer are slim, at least you know the most qualified professional in this area is giving you that advice, and that would be money well spent. And if cancer is suspected, a gyn/onco is the ONLY person I would want doing the surgery.

I so hope your problem is NOT cancer! (and you have said it hasnt' been ruled "IN" or "out") But if it's even a little bit suspected, I Hope you make an appointment to see a gyn/onc.

I'm sorry if this rambles on! It's late and I"m having a problem staying focused and saying what I mean tonight!

I wish you the best,

s and ray*ers
K9

Take time to read lots of posts here. Being informed is the best thing you can be.

Different things can cause the pain, call you doctor and see what tests they have planned. The resources are great on this site and the support is wonderful.

The best part of this site is that you will hear pros and cons of all of the various routes for treatment. It was so helpful for me going through the decison process.

Making decisons under pressure is difficult. You are right we want immediate relief. One of the hostess will be able to give you the links for the resources.

I guess the part of your post that troubles me most is this:

	Quote:
My Doctor is of the opinion that the only way to be sure that cancer is avoided is a complete hysterectomy.

So it sounds like cancer has not been diagnosed, just not "ruled out". My opinion (and it's only that, of course) is to echo what others have said and urge you to seek at least one or two additional medical opinions. I realize it's hard to delay these things when you're in pain, but it may also give you some crucial information. It may also lead you to a treatment plan which is less invasive and carries fewer risks than a hysterectomy.

I hope you are able to get on a path which will help relieve your pain and other symptoms! We're here any time you need us.

Hello:

Pearle, K9, Die Narrin & mjd2491:

Thank you all for sharing your experiences and insight.

I have a '2nd opinion' with a female OB/GYN scheduled for tomorrow afternoon. Thanks to your responses and the invaluable information I've gathered from this site I feel much better prepared to ask questions and make decisions.

Thanks so much!

Dear Redpea,
Is this of any help? http://www.wdxcyber.com/dxppn011.htm

It seems a very thorough and clear article.

Best wishes for your appointment tomorrow,

Gillian