Help-need help making a decision

My Gynocologist, agreed to give me surgery (hysterectomy) and even scheduled it for Nov 11. Now she has changed her mind and says I am already in starting menopause and the endometriosis, fibroids will shrink as the hormonial system of menopause ceases. She left me to make up my mind if I still want it but she doesn't recommend it as it is a major surgery. Anyone else get a hysterectomy while in menopause. I don't want to feel anymore pain or excess bleeding. Plus I have had nothing but problems my whole reproductive life. I say take it out but will that cause more harm than good. Opinions and experiences please Thanks in Advance Laura
49 yrs old and have not had a period for 4 months

Hi Laura, unfortunately I am not able to offer advice on this b/c I am not at the menopause stage. I was wondering though, since you haven't had a period in the last four months, are you still experiencing pain and problems? If so, does your dr think all of this will pass and menopaurse sets in more? Your dr needs to let you know what you can expect as far as your quality of life with either decision to help you know if surgery is needed to obtain relief. I wish you the best, and I am sure you will receive good information for the right outcome.

Hi Laura. It is hard deciding isn't it? I am 52 and am peri-menopausal but still have periods. I have a huge fibroid (over 10 cm) which hasn't been causing me any problems except a little pelvic ache now and again and my clothes are a little tighter. My MD suggested total TAH/BSO due to a couple of small cysts on one ovary and the fibroid. I have decided to try and hang in there to go through menopause naturally instead of surgically and am probably going to go with Uterine Arterial Embolization for the fibroid. Have you thought of that? I haven't suffered the pain and bleeding that you have though. Hang in there and this site has limitless information on choices and how those choices have worked for others. Good Luck!

Hi Laura!

I am 39 (not at menopause age yet) & had a TAH Aug 11/03 due to uterine fibroids (pain, anemia due to so much bleeding). Anyway, after the hyst, my gyno. said that even if I didn't have those awful fibroids, the adenomyosis (sp?) he discovered ONLY through removing my uterus meant I would've needed a hyst. He said my uterus was 'mushy' or something as a result of so much adeno. .So I'd say go for it, but maybe they can check to see if you have adenomyosis prior to doing the hyst. I didn't know I even had it & I don't know if they have a test they can do to find out if you have it before sugery, but he said it was also part of what was causing the awful bleeding!
I have heard that fibroids do 'starve' at menopause & shrink away (think it's to do with chemical changes like estrogen) but if you do have adenomyosis, I think you'd still bleed heavily without a hyst..(I'm assuming that you do bleed heavily as you have fibroidic friends like I did!)

I hope this helps in your consideration!!!

Blessings,

Only you can decide BUT for what it's worth = my $ .02

I'd give anything to be in your shoes right now and undo my surgery. I'm 58 and have been in menapause for years. I had endo, fibroids, etc. to the tune of having an endometrial ablation to avoid a hyster.

They told me the same things, however, when my uterus came out ($^(*^^*)(_) it had more fibroids than ever. I wish I had it and everything else back. I feel mutilated.

Just my $.02 and there are a lot of ladies here that are going to tell how great they feel, how glad they are they had it, etc. I'm happy for them and wish I was *%&*(.

Investigate, read, research a LOT before you decide. Please make sure you'll be like them and not me.

I wish you peace.

Hey Mrs.Mew! Have you had complications? It sounds like the surgery solved some problems? Just wondering because I'm in the same boat. Maude

The only problem it solved was the prolapsed uterus. I feel destroyed, mutilated, and totally not whole anymore. I can't digest food, I'd have to cheer up to commit suicide. I can't post how unhappy I am. I went to surgery crying and saying I'd changed my mind and didn't want the surgery, but nobody listened.

I have no hope of having a sex life with my new husband after this . . . why bother if I can't feel anything?

My entire personality has changed. Before I was cheerful, positive and had self esteem. I sure don't now. I feel like a nothing.

Hi Laura,

Since you haven't had a period for 4 months and your gyn now thinks you are starting menopause, how is your pain level? Depending on the severity of your endo, I realize that you might still be having pain even if you aren't having periods.

While it's true that your fibroid(s) and the endo should shrink at menopause as your estrogen level declines, only you can decide if you are getting good relief. Did you investigate any other treatment options before deciding to have the hyst?

I highly recommend that you get at least one other opinion from another gyn. This may confirm the recommendation to wait and see how you do with menopause or you might get a completely different opinion. Either way, you'll have more information to help with your decision.

As for diagnosing adenomyosis as someone suggested ... it is very difficult to get an accurate diagnosis aside from post hyst when the uterus can be examined. Sometimes an MRI will confirm a diagnosis of adeno, but many docs do not order this test because it is farily expensive. Adeno can cause a lot of pain and bleeding and the only "cure" is a hyst. Has this possibility (adeno) ever been suggested to you? If not, you might want to ask about this at your next appointment.

As you can see from the replies to your post, this is not an easy decision and there are no guarantees that you'll have a "perfect" outcome if you do choose to have a hyst. It is major surgery and while some gals do just great, others have complications and some do have regrets. I was not in menopause when I had my surgery, so cI an't speak from experience there ... I was 46 with no menopause in sight when I had my surgery. At almost 2 years post op, I'm doing pretty well. I was extremely fortunate and did not have any surgical complications or other post op problems.

Please keep us posted on how you are doing and what you decide to do. We'll do our best to provide support, whatever you decide. Sending hugs your way.

Beth

Laura:

What tests has your GYN done? If you've not had a period in 4 months, well, 49 is a bit young to already be menopausal. Much as I hate to say this, cancer has to be ruled out as a possibility before just going to "wait and see".

If it is endometriosis, many women would tell you that a hyst is far from a perfect solution. And in some cases, laparoscopy done by a skilled surgeon can clear up endometrial implants and "buy" you some time.

There are also options for fibroids; again, though, the symptoms for all these things (adeno, fibroids) is usually heavy bleeding, not periods ending.

Getting a second opinion, particularly in your case where options may be available (or more testing need to be done) is a must. As you see from (((Mrs. Mew)))'s account, it's not a certain outcome, and for those of us with endo that's particularly true. But with endo, you do need close monitoring; there may be some evidence that those of us with endo are at higher risk for GYN cancers.

If you've not had children, and your mother had an early menopause, or you have some thyroid or other hormonal problems, then 49 may not be so early for "full" menopause. But if your bleeding stopped suddenly (over a month or so) then I'd be concerned.

And if all that's ruled out, good news! But don't rule out the possibility of a GYN-oncologist as one of your opinions. They have a great deal more pure surgical experience, and may have the skill to perform alternate procedures (myomectomy, or laparoscopy) that may improve your pain without a hyst.

For many of us, after a thorough diagnostic workup (which may include C-T, labwork, ultrasound and perhaps MRI to identify adeno), the hyst really is the only option. I know that was the case for me. But I came to that realization knowing exactly what my problem was, and if not happy about it, at least I had peace of mind that the hyst was the right decision (even with my decidedly mixed results) in my circumstances.

In my case, BTW, I wound up discussing my choices with five different doctors, three of them GYN-oncologists.

Good luck to you -- and please, get the answers you need so that you come to this decision -- whatever it may be -- with peace of mind knowing that it's the right one for you.

Mrs. Mew:

You've had a rough time of this whole process -- I've seen some of your other posts, and the pain is evident in your words.

You CAN get help -- a start would be to post over in Aching Hearts . You will find women who have posted in utter despair but who are finding their way out.

I've been there (and lived to post about it ). You're still newly post-op (frankly, I don't think any of us are sane during those first few weeks). And you didn't have that peace of mind about your surgery.

The women over in A/H know that place well; many of us who post over there have known that despair -- and know that it is possible to come back. It takes a lot of work, improved hormone balance (boy, what a difference THAT makes!), sometimes other medication to re-tilt the balances of your brain.

What tells me that you CAN feel better is your description of yourself: You were " cheerful, positive and had self esteem." When there has been a change in your entire self-image, much of that has to do with chemical factors: this surgery is a sudden disruption of a delicate hormonal balance, and when you add in the stress of the surgery itself (and you had added stress in your particular case), well, it's no wonder that everything is haywire. This is a time where many of us find short-term antidepressant use helpful: it helps "reset" that chemical balance in the brain so that your body (and psyche) can recover.

And when I am depressed, I find that it's often because I am so angry, perhaps because I lost control of a particular situation. When I've been that angry, I've found that talking about it in a safe place (with a therapist) helps me to move through it and find that peaceful, positive self.

I've needed these things more than once in my life, and you know what? Life is difficult for us right now, but we'll get through it...as long as we get help. We don't have to do this alone.

and please, come visit my friends in A/H, OK?

Audrey