Do we have rights to request a hysterectomy?

I've been suffering from chronic pain for 5 yrs. Had lap June 02ar which found endo, adhesions, pelvic congestion & fibroids in uterus. I continue to suffer with chronic pain. Due to massive veins & blood vessels from pelvic congestion not all of endo could be removed & left ovary is covered as well (which I think is alot of the pain). I also have very heavy menstrual bleeding & painful periods. I've tried birth control but get terrible headaches & leg cramps. My gyn is hesitant of lupron since I can't take birth control. I'm going to endocrinologist to determine if lupron is next step or straight to hysterectomy. I know left ovary will have to come out because of the endo but not sure about the right. I have really been thinking about just going straight to hysterectomy but have wondered if this is crazy. Does anyone know if I have rights to request the hysterectomy?

Thank you for your advice!

You have a right to request anything in the world. At least it will get you and your doctor talking about the options. Your doctor may not understand your priorities, and my be assuming that you would want to avoid surgery, or might want kids someday. Go ahead and ask, it couldn't hurt, and in any case you'll have more information than you do now.

Sarah:

You can request a hysterectomy, but the hard part is convincing your doctors and insurance company that it is "necessary".

The other problem is that, if your hyst is for endo and adenomyosis, the problem is not always "cured", even with going off all estrogen forms. So some doctors are hesitant to go to hysterectomy without trying to shrink the endo/adenomyosis with Lupron first, feeling that they have a better shot at getting everything with surgery if they've minimized it through the Lupron regimen first.

Good luck. I can see from your post what a long, hard road this has been for you. But you may find the Lupron makes your hysterectomy more "effective" in alleviating your symptoms if you try it first.



Audrey

Thank you for your responses. It sure does help to have others to talk to. Since I'm 33 I don't have any friends with similar cases. I had my children early and had tubal ligation 2 years ago as I knew I wasn't going to have anymore kids and I was tired of struggling with the birth control. I have talked with my Dr. about hysterectomy and she is extremely hesitant due to my age and the new studies about HRT.
Again, thank you so much for your support!

Sarah

Sarah:

Tubal ligation and c-section are both factors increasing the risk of adeno. I found this very interesting website about adenomyosis: Adenomyosis - An Internal Uterine Endometriosis , which seems to be a thoroughly researched digest on the subject.

The thing about the new studies for HRT is that they still haven't studied the younger age group yet. You would think that, with so many hysterectomies performed annually (I think the number is 600,000), and even if the ovaries are retained they often fail "early", that there would be a large cohort for someone to study our long-term HRT needs and effects. I guess, though, that would have to be a 20-year study! . If the adeno is making you miserable, you certainly have the right and the obligation to yourself and your family to get a second opinion if you don't see eye to eye with this practitioner.

I know that the hunt for a second opinion can get frustrating, but talk to at least one other surgeon besides doing your own research.

Audrey

Sarah,

Another way to break an impasse with the insurance company (or a doctor) is to think about a "course of treatment" rather than hyst or no hyst.

You have symptoms that are interfering with your lifestyle due to a disease process. Your insurance company is obligated to treat you for that disease. They may ask you to try less invasive methods first. Document, document document as you try them. Who knows? One may work? If the doc says I want you to try these three things first before we go to surgery - fine. As you try them, keep track of side effects and the effectiveness of the treatment.

The best that happens is that you find a compatible treatment without surgery. At worse, you've documented a case for why a hyst is your only remaining solution.

Your doc is right that there are risks to a hyst - not only surgery, but also long term consequences. Doing nothing is also a risk to your productive life.



Dorrie

First of all, like others have said, you need to weigh all of your options and the risks of having a hysterectomy. Discuss these with your doctor.

After having said that - I'm 25, never had children and just had my hysterectomy 5 weeks ago today. I had endo and scarring, tried lupron, BCP's, depo-provera, etcc...and 2 laps (one with laser surgery).

You have every right to ask for a hysterectomy - but find out what the Lupron can do for you first, if you can take it.

I had to convince my doc to let me have one - I was at the point where I just wanted it all out (she eventually convinced me to keep one ovary and we can always take it out if needed for hormonal reasons due to my age). I had to have a colonoscopy, a bladder test and talk with a psychologist 3 times before she consented. It was all worth it.

Make sure that you try everything that you medically can first though. Insurance has a tendency to deny - they did mine and I'm going to a lawyer tomorrow to fight them on it. Reasons they denied mine: not medically necessary (erg!), age factor and never had children. (One they were completely wrong about). You have the age factor possibly against you that way.

Even though I may end up paying for this all myself, it was worth it anyway. Keep that in mind also.

Hope everything goes well - keep us updated

Phoebeflower

Thanks again for all of your responses! You are all wonderful.

Phoebeflower- I see your surgery date was 8/6/02 - I was wondering how your recovery is going? From your note you sound like you must be doing great for 1 month post-op - I hope this is the case! Good luck with the insurance company. I'm sure you can prove to them how medically necessary it was!

I will be going to a urologist (for problems with urgency) and endocrinologist to help determine if I can take the Lupron. My Dr. says Lupron is given in 3 month shot only and we're both concerned about that because once taken there's no going back! I've seen where some women have had 1 month doses but was told this wasn't an option. I'm curious to find out more about this now.
Oh, to just be pain free and not tied to the house during a period!!

Hi Sarahlinn,

I'm not really in any position to advise you since I am sitting here in never-never land WAITING for some type of recommendation or answers.

But I see that you said adhesions, not adenomyosis. I don't know a whole lot about adhesions but I was under the impression that once you had adhesions you were more prone to them after any type of surgery.

Just something to think about, research and ask about - as if you don't have enough what with the load you are carrying.

I sure wish you lots of luck and God bless.

Oh, I do have adenomyosis as well. I forgot that in my list of many ailments!
It's the adeno, endo, pelvic congestion, fibroids, pain, very heavy bleeding that are prompting the lupron or hyst.
How are you? Where are you in your decision process?
I wish you the best as well.
Take care,
Sarah