trouble with right decision

Hello Hyster Sisters,

I'm new here, and so glad that I have found you!
I have found a lot of valuable information on this site but the more I read, the harder it seems to get to make the right decision.
I'm 42 years old and was diagnosed with endo 14 years ago via laparoscopy. During that procedure main patches of endo were removed by laser. I then took birthcontrol pills to keep endo in check. Five years ago I stopped taking the pill for other health concerns.

I haven't had any unbearable pain or other problems throughout the years, and more or less pushed endo out of my mind, hoping to make it to menopause without any further treatment.

Then early last summer my pap came back abnormal. An ultrasound and biopsy were done, and revealed that this was due to endo cells. The ultrasound also showed ovarian cysts - a complex cyst on my left ovary, and a clear cyst on my right one. Several ultrasounds were done since then, showing that the cyst on the right ovary had shrunk, while the complex one on the left had grown a little.
Two weeks ago I had a laparoscopy, and was also supposed to have an oophorectomy done in order to remove the left ovary and the complex cyst. However, my doc did not perform the oophorectomy because the laparoscopy showed that the endometriosis was now severe, and the procedure could not have been done without complications. My uterus was also slightly enlarged.
My doc now strongly suggests that I have a complete hysterectomy including the removal of both ovaries done.
I am not thrilled about this because I'm afraid of possible adverse effects, possible complications after the hyst, and the aftermath of sudden menopause. I have gotten educated about my condition, alternative treatments, the pros and cons of those, but - as I said - the more I read, the more complicated it seems to get to make the right decision. Nothing seems to be just the right thing. My doc says that the best alternative, should I decide against the hyst, would be for me to go on Lupron for two months, then have an oophorectomy to remove my left ovary and cyst, then continue with Lupron for four more months, and get back on birth control after that.

I realize that in the end nobody can make a decision for me, but I'm having a terrible time choosing the right one. Can any of you ladies help me with some advise?

Thank you so much,
Lupa

Hi, Lupa,

You're right. Nobody else can make the decision for you. And there is no "right" decision; but there is a right decision for YOU.

I'd suggest getting at least one more medical opinion. Hysterectomy is a big decision, and in my opinion, no woman should make that choice unless she has obtained at least two medical opinions.

I'm aware that this will take time, and it could involve more testing, and I'm sorry about that. But I think you owe it to yourself to get another opinion.

I'd recommend choosing a doctor who is NOT affiliated with your current doctor. Doctors in the same medical practice are likely to agree with their partners.

My insurance company required at least two medical opinions, before they would OK my hysterectomy. I'm glad they did.

I hope this helps you.

Best wishes,
Helen

You endo ladies, I think, have the most difficult decisions. Perhaps you can call for a second opinion and ask each office if that particular doctor operates on endo patients. It takes skill for this surgery and although my insurance book does not list ,"endo specialists", I'd hope to find a doctor who has alot of experience with it. Try to stay away from the OB/GYN's...they are too busy with babies.

I didn't like the side effects of Lupron and said No to it. It works well for some though. I've read many times that it is used for a short time prior to surgery. Things will return and continue after stopping the drug. Perhaps your doctor is trying to buy you time on the drug, if you decide against the surgery. Time for menopause? I'm 54 and not close to menopause!!!

As I understand, the only chance you have of getting rid of endo is to remove all sites; ovaries, tubes, uterus, cervix and to get every speck that is attached to anything else. Then, no supplement hormones for 6 months. This requires alot of skill.
If you are in the sever stage of it...it would be hard not to worry about the stuff messing with your bowel and other body parts.

I vote to go for that second opinion with a skillfull surgeon.
Hang in there...you're in a difficult spot, no place to go but forward. Keep us posted.

Hi Lupa,
Sending gentle hugs your way. You've gotten some great advice so far. Your story has a very familiar sound to it ...

I had a TAH/BSO about a year ago, primarily due to severe stage 4 endo. I was 46 at the time. But six months before that, I had a lap myomectomy to have two fibroids removed. (I really didn't want to have a hyst at that time.) During that surgery my gyn discovered severe stage 4 endo. My right ovary was stuck to the ureter, the cul de sac area was obliterated ... I was a mess. He really could not do much about the endo during that surgery ... sort of sounds like the situation with you too.

I got my second opinion about hyst surgery from a gyn oncologist. He actually trained my gyn, but they are not in practice together. The gyn oncologist assisted with my surgery because I had peritoneal stripping done to remove all the endo. I also had urologist there to put stents in my ureters in order to protect them and to help my gyn "find" them in all the endo and adhesions.

I think you would be very wise to get your second opinion from a gyn oncologist. These surgeons are highly skilled and if you can't find an endo specialist in your area, a gyn oncologist is a good alternative.

Let us know how you are doing and what you decide. We'll support you in way we can.

Beth

Hi Lupa,
My question about your situation would be "is the dr watching your CA 125?" That is a blood test that can give some indication about how quickly you should move to get at the complex cyst. We opted for an abdominal sugergy for me. That way if the pathaolgy report turned out that i needed therapy , the tumor was removed with less chance of it being broken open. In my case, the chance of cancer was very small, but very real. I was also preped for a bowel surgery, just in case i need it. I am not bothered by my scar, I did not have a pretty tummy to begin with.
As for taking your husband...aboslutly. It always helps me to have my support system with me, he looks at things in a different way. That way there are two of you to remember what the doctor said.