Confused, uncertain, and oh so tired

I wrote last week about one of my doctors refusing to perform a hyst w/o taking the ovaries. Your responses helped me stand up for myself and tell him I wanted to keep my ovaries. He fired me as his patient. It was for the best, I'm sure.

So now I'm scheduled with my original surgeon for a LAVH on April 6. I have endometriosis and adenomyosis, (plus a new cyst on my ovary - probably an endometrioma since I haven't ovulated in years), and I have tried most of the medical therapies. The really bad pain only comes for a day or two ever week or 10 days, but that's enough to keep me from working. The biggest problem I have is the overwhelming fatigue. I simply can't do anything. And yes, I'm being treated for depression, so I think this is something different.

My questions are:

Would you have a hysterectomy if your pain only came every week or so and you weren't having any periods?

If you had a hyst, did it relieve any of the fatigue?

I just don't know if I'm making the right decision to have a hyst. I'm 33 and don't want children, but I also don't want to be on HRT for the next 30 years if my ovaries up and die on me.

Thanks for any advice!!

Alexis

Hi, Alexis. I just had my hyst done Feb. 10. Thought I would share that the main reason for my hyst was because I had a complex cyst on my ovary. There was no way to confirm if it was malignant without a biopsy. A friend of mine got ovarian cancer which spread after a biopsy. When they do a biopsy they can spill malignant cells into the abdominal cavity, allowing the malignancy to spread. I also had uterine adenomyosis and fibroid tumors that needed to come out, so I decided to have the one ovary removed for a biopsy knowing that if it was malignant they would probably have to go after the otherone. All came out benign.
I am not sure why you are having fatigue?
Can you manage the pain with anti-inflamatories?
If there is the slightest chance you might change your mind about having children, you might want to reconsider.
I wish you the best of luck. These are such hard decisions!!

Regards,

CB

My surgeon left it entirely up to me even with the knowledge that my mother had OC and BC and her mother, maternal aunt and maternal cousin died of BC. Another cousin survived and yet another died of colon cancer. No one in my family has had the BRCA tests although I tried to get my mom to take the test a couple of years ago and again last fall. She won't although the genetists says she's the person to test. The surgeon and I also discussed the unusual type of cancer my mom had (MMMT grade III C of the ovary; ductal carcinoma of the breast in situ) and the fact that a negative BRCA test would leave us right back where we are now, wondering if it was a fluke or some undiscovered gene defect. The surgeon did tell me that I would be miserable without HRT which I had promised my mom I would not do. Talk about a rock and a hard place.

So after much thought and reading, I kept my very healthy, working ovaries. I gave the surgeon permission to remove them if they were unhealthy. He said both my cervix and ovaries were in terrific shape. I had lap surgery a year ago in which benign cysts were removed from my ovaries and all tissues biopsied at that time so I had a pretty good idea of what was there going into the surgery.

So I only removed what wasn't healthy. My breast surgeon freaked when I asked her about prophylactic breast removal but leaned toward removal of the ovaries. Go figure. I'm still wondering what my home gyn will think. Ultimately, however, this is my body and I am the one who has to live with the decision not the doctor.

Tough decision! How bad is your pain? If you are missing work each time, does that mean you are missing a lot of work? What is your quality of life right now? There can be a lot of cons with a hyst, do these out weigh the pros for you? In the end, we each have to make the decision based on our own unique cirucmstances. Of course, the only cure that I know of for adeno is a hyst. Endo on the other hand, really has no cure, esp if you are keeping your ovaries. (I do have endo and did keep my ovaries to avoid taking the limited HRT allowed for endo patients for the next 30+ yrs because I was 25 at the time of my hyst. BUT my GYN made it very clear that at some point, I will have to have my ovaries removed, I will not be keeping them until natural menopause.)

I wish you the best for your decision. Do research your conditions and ask your dr what you will gain with your hyst and what the affect you would be if you waited.

Hi Alexis

The decision to have a hysterectomy is a very tough decision that needs to be weighed carefully.

If your goal is to get rid of your pain from endo, then it is best to do some research and together you and your doctor should make the best informed decisions for your circumstance.

I had to make some of the same tough decisions you have to make due to endo. I was not happy with some of my doctors decisions, but I am glad I listened to him because he had much more knowledge on treating endo than I did.

My pain only came before and during my menstrual cycle. I ended up having to miss mork because the pain would get so bad. For me this was not a good quality of life because my life was always scheduled around my monthly cycles.

My hysterectomy has been successful in treating my endo. Not all women have the same results. There were a few extra precautions that were needed because treating endo is very complex.

Like you I also wanted to keep my ovaries. I did not want to go in to menopause at the age of 34. My doctor refused to do the surgery without removing my ovaries. First off estrogen feeds endo. Ovaries produce estrogen and if any tiny microscopic endo is left behind..the ovaries may feed it and you may not have a successful surgery. Second when I had my laproscopy done, he said the ovaries were covered with endo. Most of the time the endo will be on the ovaries along with the outside of the uterus.

Here is an article that explains the common areas for endo to be found.

Where endo is found

Here is an article that explains there is a 6 times higher recurrence rate if you keep the ovaries.

Keeping the ovaries

It was also recommended that I had an abdominal hysterectomy verses a vaginal hysterectomy. The doctor needs to be able to remove ALL the endo and there is a much better chance of doing that when he can see where it is located. Having a vaginal hysterectomy, they can not see the entire area that the endo may be and they do not have as much access to remove it.

I also had 3 months of lupron shots after my surgery, I was not allowed estrogen for 3 months and I use progesterone along with my estrogen because progesterone inhibits the growth of endo.

I just wanted to share what worked well for me. Only you know what will be best for your situation. My goal was to do everything possible to treat my endo because it was causing alot of problems with my bladder.

If you still are in the deciding phase, please take you time and make sure you feel a hysterectomy is the best choice for you. Do alot of research because in the end you need to be comfortable with your decision no matter what the outcome will be.

Here is the endo resource section that may be helpful.

Endo resources

I have had some emotional rollercoaster rides with my hormones and there are days I question my decision, but in the end I know for me it has been the right choice and that helps get me through those rough days.

Best of luck and I hope everything works out well for you.

Alexis, you weren't fired as a patient, you fired your doctor!! I fired mine because her first words were "get a hysterectomy" as opposed to my second opinion dr who said "let's check you again in 5 months since you have no symptoms from the fibroids."
DO what's best for YOU!! What does your inner most YOU tell YOU? And if it's saying, get some more opinions, that's OK, too.
MSCOT

i can relate to a lot here i went through cervical cancer last year got that dealt with have had a lot of cramping found fibroids had endo ablation but cramping still there dr suggested hyst got on the list last nov feb and still waiting family dr did ultra sound couple of weeks ago and found that my ovary only one has doubled in size in 10 months now we wait and see sometimes you get the ffeling like no one is listenning
but anyway
we will see what happens
larina

Alexis, have you had your thyroid checked? If it's not functioning correctly, it can cause great fatigue. It's a simple blood test to check your levels. I have hypothyroid and am on meds, and I feel much better. Let us know if this might be the cause of your fatigue.
Hugs, Jeanne