None of my Doc's opinions match?!!

I'm a 40 year old with endo, adhesions and possible adeno. I had surgery to remove endo in May to relieve back pain, but it did not help at all. My uterus is enlarged and completely adhered anteriorly.

I'm looking into having a hyst. I'm on the pill continuously to keep the pain from worsening during menses. But I'm still in a lot of pain all the time & cannot sit down for more than 15 minutes at at time due to the back pain.

I've gone to 3 doctors (2 male docs & 1 female - all do nothing but Gyn.) Here is what they've said:

Doc #1 did an exam and a internal ultrasound - his reco is a LAVH and gives me an 85% chance of success (remove uterus & cervix, but not ovaries)
Doc #2 didn't do an exam, but read my operative reports and took my history etc. - his reco is Lupron, then a hyster. if Lupron helps (no removal of cervix or ovaries to start with)
Doc #3 didn't do an exam, but listened to my history - her reco is hyster. (also removing ovaries but not cervix) and go on HRT. She said i have about a 15% chance of sucess if I left the ovaries.

Ugh! Why do thier reco's differ so much!? Here are my questions:

1) Should I keep my cervix - my gut says don't get rid of anything unless there is a problem with it, but doc #1 says cervix is "prone" to endo? Has anyone heard of that?

2) Do I really need my ovaries out in order to control the pain? Should I take Lupron as a test to see if removing my ovaries would help. I'm afraid of Lupron because of what I"ve read about permanent side effects: cognitive and joint pain...

3) Should I get a 4th opinion? I feel like I'm only going to get a new and different opinion that will confuse me even more!...

Very confused...

You can do a couple of things:
1. Pick one of the three options you have already been given
2. Keep getting other docs to look at you and or your records and give you more information.
3. Keep doing what you are doing and live with the pain (not really a choice, right?)

I guess the point I am trying to make is that you have time to make a decision, right? As long as you are still in the question, of what is right for you to do, you can keep looking for the answer that you are comfortable with.

If the Lupron is an option, but not one you are comfortable with, that is a decision you can make...

As for keeping/losing your cervix and/or ovaries, that will depend upon the procedure you have, and what they find when they are inside you.

I know I'm not giving you any answers, but that's not why I'm writing.

There is a lot of information on this site, but I don't think anyone here will tell you what to do...

I can tell you my experience, my doc would not associate my back pain with my uterus at all, and after my LAVH, my back pain was virtually gone. Doc will NOT make promises, you need to go with YOUR gut feeling...

Good luck, and I'm sure you will find comfort in the decision you make.

First thing is to get educated on your diseases. You need to learn as much as you can and then make a plan for you.
Just so you know Lupron is a temporary fix at best, your worst nightmare at worst. Endo experts DO NOT use it.
The best hope for endo pain relief is excision surgery. Adeno is endo in the uterine muscle so removing the uterus is the only "cure". A hyst is a treatment for endo nothing more. Even if you have a hyst you ned excision. Endo has a way of returning as there is no cure and it does not need an outside source of estrogen to feed it, as it makes its own.
You really need to find a doc that is a specialist in endo.
Here is a good start to get educated:
http://www.endocenter.org/
http://www.endometriosistreatment.org/
You can PM me if you like.
Be blessed,
Carrie

Dear Pearl40,

In the four years since my TAH/BSO I have done a lot of research that I wish I had done before having surgery. You are on the right track and should take your time and make certain you are 100% certain this is the right choice for you and ALL your questions are answered before you resort to a permanent, life-altering surgery.

Were any of the doctors you consulted reproductive endocrinologist? This type of doctor is a combination of gynecology and endocrinology. The latest research is showing a connection between the endocrine system (pituitary, thyroid, adrenal, pineal and ovaries/testes) and endometriosis so perhaps this type of doctor could help you more. However, keep in mind that it takes an average of 15-20 years for new research to trickle down into standard practice so you want to find a doctor who is updated on the latest developments which can be a challenge in some parts of the country. Basically, Lupron or birth control pills are a form of treating the endocrine system but they are "one size fits all" and the problem with these is that we are all not all the same size. Each one of us has her own, unique, body chemistry and an endocrinologist can test YOUR chemical balance (hormones) and possibly make some easy adjustments. (The test this doctor will do is different from the standard blood test for the basic hormones most gynecologist give.)

You said you are afraid of Lupron because of "permanent side effects" and I just want to make certain you realize that the permanent side effects of losing your ovaries can be far worse than the Lupron. The ovaries contribute significantly to your overall health. Losing the ovaries puts women at a significantly higher risk of heart disease, heart attack and stroke. Also, the ovaries are very important in fighting osteoporosis, a disease that can strike within months of losing the ovaries, no matter what your age is. Another consideration, not to be overlooked are the ovaries role in sexual desire, emotions, sleep, memory, cognitive, digestion, skin, hair, teeth, hearing, vision, your immune system, bowel, bladder and more. The biggest myth out there, in my opinion, is that the ovaries cease to function with natural menopause and that is NOT true. The ovaries contribute important chemicals (hormones of all kinds) right up until the day you die, no matter how old you are.

I think an excellent book on this is Elizabeth Plourde's, "Your Complete Guide to Hysterectomy, Ovary Removal, & Hormone Replacement."

For surgical alternatives you may want to check out www.alternativesurgery.com which is the web site for the Institute for Female Alternative Surgery in Glendale, CA. They specialize in surgeries that protect the ovaries, nerves, bladder and other risk of hysterectomy.

This is possibly the most important decision you will ever make; please take the time to do your homework now. I didn't and my ignorance has cost me a terrible price that I don't want any other woman to pay.

Best wishes,

Hi! I am having a TAH BSO tomorrow morning. I have endo and adeno and psoc. The doctor said that he would have to take the cervix since i have endo because they may not be able to see all the endo and it could grow in the cervix and cause pain. I have read posts and searched the internet for possible solutions. I think you just have to decide for yourself what it is you want to do. I know I just dont want pain anymore and as for keeping my ovaries I am ready for them to go also. I have had alot of pain and large cysts for years and I dont think my hormones have ever been right except for the one time I was pregnant. So off to the castle I go. Good luck to you in whatever you decide. Just search the internet and read posts on here, for me it helped me lots.
s to you.
Julie

Lucille in CA, The long term side effects of Lupron can be worse than loosing your ovaries. I took Lupron over two years ago and STILL have memory loss. That is just one of many permanant side effccts I am suffering, and I am not alone. The effects of not having ovaries has been much less than the effects of Lupron. I wish I would have known that there was no proof of Lupron's effectiveness except by its manufacturer TAP. And even that was a failed study, as too few women even finished the study. Excision is the only proven method to help endo pain for a good period of time. One really needs a doctor who understands the disease to treat it.
Carrie

Carrie,

Make no mistake, I am not advocating Lupron in any way shape or form. I think it is bad stuff. The memory loss you suffer from the Lupron is due to the drugs effect on your ovaries. It's like an oophorectomy. However, some women recover from the Lupron side effects if their ovaries return to full, normal function whereas you can never regain full, normal funtion if you have an oophorectomy.

You are right about the excision being a cure but they are also making progress with other treatments that are being developed now. These new discoveries have happened in the last year and I think if one can wait, it might be worth holding on for another year or two to see what develops.

Losing my ovaries caused me serious, permanent, life threatening complications and I would never advocate giving them up easily. Only as a last resort for a life threatening illness.

Lucille in CA, Hi, no what the Lupron did was not like an oophorectomy as my estrogen levels never went down as I was told it would on Lupron. My estrogen is still even post BSO, quite high. This is what most people believe about Lupron. Although is some women it does cause their ovaries to shut down. Endo makes it's own estrogen, and can do so even after ovary removal. I have done my homework. Taking Lupron did much more to me than the BSO did. Most of my side effects are not estrogen depletion related.
I am sorry what loonig your ovaries did to you. But That is not always the case. I am actually waiting to have my remants from a failed BSO removed as they have alawys cause me much pain. I almost lost my left kidney due to remants.
http://www.mercola.com/2002/feb/9/lupron.htm#
Again, this disease is just such a beast we all have to do what we hope will be the beat choise in our own situation. None of which can cure this disease.
I pray you have pain free days ahead!
Carrie

Carrie,

Thanks for the good wishes. My pain is from nerve damage done during the hyst and surgical clips left inside me that can't be removed now so I will just have to live with it but maybe someday they will be able to help me.

But about the Lupron ... I wasn't talking about estrogen; that's one of the most common myths about the ovaries, that they just produce estrogen. The fact that they produce MANY other hormones, besides estrogen, is not well known but it's the other chemicals (the words hormones and chemicals can be interchanged as they are the same) that have the most effect on cognitive abilities. In the past, it was assumed it was the estrogen levels that were to blame because the doctors knew that low estrogen levels were responsible for menopause and menopause symptoms also often included memory loss. However, now they know that it's much more complicated that once thought. One of the leading researchers on ovaries told me he thinks what they have discovered about the ovaries in the past few years is just the tip of the iceberg.

A lot of women's problems can now be traced back to the ovaries. Such things as pregnancy, tubal ligation, C-section, ovarian cysts, etc. can all cause them to malfunction in chemical production (other than estrogen) and these malfunctions can affect our health all over our bodies. The ovaries/testes are part of the endocrine system which consist of 5 primary glands, the others being the pituitary, the thyroid, the adrenals and the kidneys. Malfunction or removal of any one of these glands can cause problems with the others. New research is proving them more complicated than we ever thought. Remember many years ago when the doctors said the tonsils were left over organs from evolution and we didn't need them anymore? Turns out they were wrong about that too.

Lucille, at least they did not take my tonsils.
Yes, I do know about the other hormones that the ovaries produce. I agree with you there. I know that much more goes into the growth of endo too than just estrogen, although over production may, it seems help it grow. I had my ovaries taken not because of hormones, but because of them always getting adhered either to my intestines or to my uterus. Last time we tried to save them, I had one behind my uterus, and one adhered to my bowel. They managed that time to save 1/4 of one and 1/2 of the other. But that was two years before my hyst. Since my hyst in May I have remnants that are damaging my ureters. So, they have to go! Otherwise, I will likely loose a kidney, had a close call in September!
I have to ask besides they obvious damage from sloppy surgery, which is just inexcusable, what effects have you suffered from the ovaries being removed?
Take good care,
Carrie