hysterectomy recommended

Dear Cookie,

Thank you too.. I was thinking about the State Licensing Boards also.. though I don't know if the general public can approach them.

I'm always saddened to read about anyone who has a bad outcome from a medical procedure. And I agree that it's a good idea to get second opinions (maybe more!) when you're considering surgery and to be certain that you are being cared for by a reputable doctor.

While hystersisters is a woman to woman hysterectomy support website, this privately-owned site is neither pro-hyst or anti-hyst. We ask members not to mention specific doctors on the public message boards. And we ask women to share their personal experiences, but not provide medical advice or "recommend" a particular treatment or procedure.

No particular physician has been mentioned here, but doctors in general are getting a pretty good bashing. Yes, there are bad doctors. Just like there are bad lawyers, bad waiters, bad car mechanics ... you get the idea. There also are many good doctors, good lawyers, good mechanics, etc.

To call the American Medical Association a "club" may be going a bit far. It is a professional association. Yes, they provide benefits for their members. Any professional association does that. You can read more about the AMA here:

AMA Link

We all learn from each others' experiences, good and bad. Information is very empowering. Support and kindness - those are the hallmarks of Hystersisters. I'd encourage everyone to re-read the Hystersisters Website Guidelines if you haven't done so lately.

Site Guidelines

Beth

	Quote:
Originally posted by BethAC No particular physician has been mentioned here, but doctors in general are getting a pretty good bashing. Yes, there are bad doctors. Just like there are bad lawyers, bad waiters, bad car mechanics ... you get the idea. There also are many good doctors, good lawyers, good mechanics, etc.

Sheesh, I never meant anything I said to be taken as a bash of doctors in general! My brother, cousin, and favorite auntie are all doctors. All the doctors I've ever been treated by have been professional at a minimum and some of them have been really sympatico. By mentioning that website I only meant to point out one place where ChanceHope could find the info she was looking for. Maybe I should have made it a private message?

As for my other post, I still think that a woman, guided by her own doctor or doctors, is the one who should decide, not guidelines set down by a professional organization. The professional organization doesn't have to live with the symptoms--the pain, the mess, the anemia--whatever it is that has led that woman to consider hysterectomy. But by saying that I don't intend any disparagement of doctors, rather that the one who has to live with the consequences of having, or not having, surgery, is the one whose voice should be heard most strongly in the decision-making process.

cookie1956

wprried,

I am very much in the same boat with you. I am 24 years old with adenomyosis that was diagnosed through a lap scope in 12/03. I am scheduled for surgery on the 28th. Just one more day! I am terrified that I am making the wrong decision. However, I can no longer live with the pain, irregular bleeding, and being medicated. I have done a lot of research on my condition and came to the conclusion that the hyst is the only option left for me. I am only scared that I will come out on the other side and be in pain, having missed some other problem. I will be thinking about you and watching for your decision. I will also let you know how things are going over here.

Good luck and feel free to email me if you need someone who is going through it!

hgb12380

Hello everyone,

First, let me wish hgb12380 the best of luck with the surgery, my thoughts and prays will be with you.

Thank you for all the responses. I did get a second opinion. My doctor doesn't know, so she did not recomend the Dr.
This Doctor seemed too eager to me to "try" both procedures. When I went to see him, I only asked about Ablation, I did not mention hysterectomy. He said he could do the ablation next week and then if that didn't work do a hysterectomy before the end of June (before Ins. runs out).
When I went to see my own doctor again, she said that I couldn't do the ablation before June anyway, because I would have to take a medication to thin the lining of the uterus for three months first! It makes me wonder who's interests the second opinion doctor had at heart.
Anyway, today I called my primary care doctor's office and asked to be referred to a Reproductive Endocrinologist as someone here suggested. The office staff talked to me like I was retarded! They asked me if I had fertility issues (I have 3 kids), and when I said I needed to get my endocrine system assessed, they told me to see my gynocologist. I told them I already had, but wanted another assessment by a different specialist. They could not comprehend what I was saying, and just made an appointment for me to see the primary care doctor. I go tomorrow.
Someone suggested the IUD and said it might get me to menopause. Does Adenomyosis stop when you reach menopause. I thought that whatever treatments I try, whether ablation or the pill, these might help the amount of bleeding, but the Adenomyosis will still keep progressing. My other concerns were that taking the uterus out, can cause the ovary to stop functioning, heart disease, osteoparosis and depression. But someone I talked to said that all women are at risk for these things, once they have gone through menopuase. Again, conflicting info.
Help!

(((wprried))) so sorry you have had so much trouble. I really don't think it is necessary to see a reproductive endocrinologist to discuss the potential impact of hysterectomy and ovary removal on your endocrine system. Many reproductive endocrinologists do only specialize in fertility work and would not be current on the issues you might be most interested in.

The type of DR is not important; what is important is that they have some knowledge and understanding of the way our hormones are interrelated and what the impact of removing the ovaries would be, and that they be someone you feel comfortable working with. If you can find such a DR, and you do end up having to have a hysterectomy at some point, that DR would also be able to work with you on getting your hormones balanced.

Since you haven't had much luck finding someone, I wanted to make a suggestion of one thing you could try. You could go to a compounding pharmacy, and ask the pharmacist there which DRs in the area prescribe HRT's through them. Not that you are necessarily going to need HRT any time soon, but those will be DRs who are a little more savvy in how our hormones work and a little less likely to give you the line "oh don't worry, you'll just take a pill and be fine" . Then you can see which of those DRs take your insurance and maybe see one or two of them and ask their opinions.

If you don't know where there is a compounding pharmacy near you, you can go to www.iacprx.org and use their pharmacy locator to find one. Also, you could ask at your regular pharmacy, since they tend to know where they are (ask the pharmacist, though, not the cashier).

I know it's frustrating... and I can see that you are trying your best to do your homework. It doesn't help that the insurance situation is putting additional pressure on you. Money has no place in a decision about something as important as your health. Just remember, removing body parts is forever... you cannot go back. Many women have a hyst and do just great and never look back, but enough have continuing or worsening problems that imho it's worth trying all the reversible treatments before resorting to such a drastic irreversible solution, even if ultimately it proves to be the right one.

I'm sure you will figure out what is the best decision for you. It is requiring a lot of you... but you can do it!
Many s,
-Linda

Adeno is difficult to diagnose at best, wreaks all kinds of havoc with bleeding, anemia, pain, etc. Unfortunately, ablation isn't effective with adeno; where ablation works is if the assumption is endometrial hyperplasia (overgrowth) which is often responsive to Mirena. Uterine embolization isn't effective either; the endometrial cells have actually infiltrated the muscle of the uterus, so it's impossible to isolate one particular blood supply like you can with a fibroid.

Nearly every book, article, etc. I have read seems to indicate that, along with cancer or hemorrhage, a hyst really is the ONLY cure for adeno (at least so far). You might be able to buy some time in the artifical menopause of Lupron, but there are very distinct time limits for its use -- and it's not effective for everyone!

I realize you have some time constraints with the insurance; can you get COBRA coverage? It's horrendously expensive, true: however, it's your only shield protecting you from the "pre-existing condition" clause that many insurers have. They cannot refuse you if you have been continuously covered. If, however, you let it lapse, there could be a waiting period of up to a year before ANY procedure related to your adeno could be paid .

I am not going to go into the whole doctor thing, except to say this: please, take the time, find a third opinion or even a fourth, before making this decision. Yes, it's likely that a hyst is in your future at some point; that sort of chronic anemia is hard on your heart, too, and taking that level of iron isn't a long-term answer either. But you MUST be comfortable that this is your final option -- and that this is the "right" time for you. One question: in all this, I have made the assumption that your doctor has investigated the possibility of endometrial cancer, with a biopsy or D & C? I would feel more comfortable delaying a decision if I knew that wasn't part of the problem. Not all women fit the "profile" of the "typical" endo CA patient (overweight, post-menopausal, etc.). Adeno is likely to be your problem, but if it were me, I think I'd sure like to be certain that malignancy was NOT an issue.

Big s to you and to hgb -- best of luck with YOUR surgery! It's a tough decision to have to make at your age, and I hope your recovery is uneventful.

Audrey

I'm getting a bit confused here... I thought you were seeking information to help you decided whether or not you wanted a hysterectomy or if there were other options. I didn't think you even knew for certain that you do have adenomyosis, I thought that is just what your doctor suspected. Did you already have the diagnosing surgery? If he's certain you have adenomyosis, that puts things in a different light.

The reason I suggested a reproductive endocrinologist is because, in my experience, the hormone testing was more sophisticated, and such tests can be used to rule out other causes of abnormal bleeding, many of which can be due to hormonal imbalances that are not detected by the standard bloodwork done in most other practices. But certainly, surferbabe is right, any doctor with a good understanding of the endocrine system can order the test too. It was just my personal experience that none of my other doctors seemed to understand; and I went through a lot before being accurately diagnosed. (I prefer to spit into a tube and have my mouth swabbed any day!)

I didn't have adenomyosis so I can't relate to your pain or symptons but my friend did and she told me there is a good explanation of it at http://www.alternativesurgery.com/ed...denomyosis.php

Whatever you decide to do, I sure hope you get to feeling better soon and that you can get everything squared away with your insurance too.

Best wishes and extra hugs,

Hi wprried,
I might be the one who mentioned the progesterone-releasing IUD. I have been reading up on this as it is also sometimes used to treat excessive menstrual bleeding due to fibroids. I'm at work now and can't find the link, but my suggestion (if I was the one) was based on a paper I found online with the results of some studies on non-contraceptive uses of this IUD. I think women with adenomyosis were helped, but all the studies were small and preliminary, so keep that in mind when looking at the results. If you would like to read the article, reply here or PM me and I'll provide the link.

I think the study was done in Great Britain or somewhere in the Commonwealth--the IUD's are used a lot more frequently there than in the US.

As I understand it, adenomyosis is endometrial tissue that has become embedded in the uterine wall and when it bleeds inside the muscle it causes pain. If that's the correct definition of the condition I would expect symptoms to stop at menopause when all the rest of the endometrium stops bleeding--but ask your MD to be sure.

As AudreyS says, most of the books say hysterectomy is the only cure for adenomyosis--but none of the books I have read even mentioned the progesterone-releasing IUD. It may not have been available in the US when the books were written, or the studies I saw online may not have been done yet. I think they were all quite recent although I don't remember for sure.

Hope this helps,
cookie1956

hi wprried,

You asked if adenomyosis stops after menopause..

from http://www.mamashealth.com/women/adenomyosis.asp
"Symptoms usually go away after menopause occurs."

Sorry if I seemed to sidetrack too much above.