Trying to decide - lap v. hyst. Could really use support and advice.

Hi ladies --

I've only posted a few times, as I'm still in limbo regarding hyst. Long story short -- 10 years pelvic pain, history of adhesions, ovarian cysts, minimal endo found in first lap in 93 (had a second one in 98). I am now in pain every day, my periods have become unbearable (both pain and heavy bleeding), and despite Depo Provera, birth control pills, Celebrex, Vicodan, accupuncture, physical therapy, etc., nothing is helping anymore.

My OB/GYN suggested the possibility of a hysterectomy a few months ago. In weighing my options, I asked for and got a referral to a pelvic pain specialist, who I saw last week. He gave me four options: continuous BCPs with trigger point injections; Lupron; lap with conscious pain mapping; and hysterectomy with RSO. I am so torn with this decision.

First and foremost, my family is complete, so that is not an issue. I also don't feel that my reproductive organs are a defining part of my soul, so losing them is really not an issue for me. I'm just so NOT SURE that it's the right thing to do. It just seems so drastic. I know so many of you sisters have dealt with cancer, fibroids that caused your uterus to enlarge, etc., and I am not dealing with either of those. What I am dealing with is possible endo (not sure), possible adeno (again, not sure), probable adhesions, and trigger points at my right ovary and uterus. I just don't know if any of those things justify a hysterectomy.

The drug options are out for me because, basically, I've been there, done that. I feel as though I've done nothing but throw hormones at this problem for years, without success. Taking more drugs will only delay the inevitable -- surgery. It's just deciding on the surgery that is so hard for me.

With my previous laps, I've had fairly good pain relief for a good period of time. I'm fairly confident the same thing would happen this time. But my fear is that if I do have adeno and only have a lap, the problem will not be solved and I'll end up back in surgery for a hyst. anyway. But on the other hand, if I have a hysterectomy and there's nothing really wrong with my uterus, I will have put my family through an awful lot for no reason. (I have twin 2.5 year olds that will require alot of assistance from family members while I recover.)

My inability to make this decision is really getting me down. I was so hoping the specialist would give me a "black and white" diagnosis that would make the decision easy, but that didn't happen. The specialist was also in disagreement with my OB/GYN regarding whether to take the cervix (GYN says leave it, specialist says take it), but that's a whole post in itself!

I would really appreciate any help or guidance you ladies can offer -- especially if you can share with me how you made the difficult decision to go ahead with the hyst. I am just so tired of being in pain -- I'm so exhausted all the time and it's getting me down.

Thanks so much. I really am so grateful to have found this site.

My situation is similar, but I haven't been living with it as long. I have gone through bad periods (pain, length, and heavy), painful intercourse, and shortening cycles for about 7 years. I had a lap done 2 years ago and the gyn found no signs of endo, but found scar tissue that he found no cause for. He removed the scar tissue and things went almost normal for me for about 1 1/2 years. About 6 months ago things started to go bad again, same old symptoms but one period that lasted 3 weeks. I finally decided I'd had enough.

I have 4 1/2 year old twin girls at home and have had the same sort of concerns as you, but last week I finally decided that I was tired of the ongoing pain and bleeding and it was time to do something about it. I am waiting to hear from the hospital with a date for my hysterectomy. Plan of action for me is TAH with ovaries left behind if all goes well and he will zap any endo he finds. I hate the thought of what my family is going to go through while I go through the recovery process, but when I consider the years of torment I've gone through (and everyone around me because of it) I just had to do it.

I hope things go well for you. Keep in mind that you are not alone!

Jenn

short story:
14 years of severe endo; surgery approx. every 3 years. diagnosed at age 19, now 33. relief after surgeries would last about 1.5 years and then the pain would gradually come back. no kids. got to the ppoint where the pain was ruling my life. i waseither to tired or i was in to much pain, often both. finally my dr agreed to the hyster, after failed fertility treatments.she was worried that the build up of scar tissue from all the surgeries would start causing more problems. she wanted me to wait until i was 40, but said there was no use doing another laporoscopy. i had my cervix removed, because my endo was all over and i didn't want to chance having any left that might grow. i have been on the lupron several time over the past 14 yrs. the side effects i had were not to unpleasant. if you are not sure, why not just have the lap, and think about it a while longer. i thought and researched mine for a year before i went through with it. or take the lupron for a few months while you look into it further. you could always ask your dr. about having a lap with a possible hyst if he finds any adeno. he could go out to the waiting room and your husband could ok it if you are not comfortable leaving the decision entirely up to the dr. hope this helps a little. good luck

Hi again, Susan! Yes, this really is a difficult decision to make if things are not clear-cut and if you feel your symptoms are not unbearable yet. One hystersister has suggested making a list of the pros and cons of having a hyst at this particular time of your life, and see if taking 6-8 weeks off now will be a worthwhile trade for a better lifestyle with less pain and bleeding in the future. I decided that I didn't want any more Provera, Prometrium, or Depo Provera, and I didn't want a D&C which wouldn't solve my abnormal bleeding, either. I wanted the problem solved once and for all. But then my kids were 10 and older, and I was 48 and getting close to menopause. So it seems like the drs are letting you decide when you are ready to have a hyst and how much pain you can live with. You have to make peace with your decision, and accept that you will need others to help you while you recover--not easy to give up the "supermom" role sometimes! Good luck in making your decision. s
Ruthie