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Multiple surgeries, pain, hyst? Or Lupron? Or what? Multiple surgeries, pain, hyst? Or Lupron? Or what?

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  #1  
Unread 07-04-2004, 12:39 AM
Multiple surgeries, pain, hyst? Or Lupron? Or what?

Hello. I'm Rebecca. This is my 2nd post here. I've been reading and reading and reading and decided to post my story.

When I was 16 I had an emergency laparotomy because I had a huge (grapefruit sized) chocolate ovarian cyst on my left ovary. The GYN surgeon also took my appendix out at the time.

It was a long and painful recovery. I was put on birth control pills immediately and I continued to have pelvic pain until the time I found my current doctor at age 24. She immediately recommended a lap. after a US. I had severe adhesions from my belly button all the way down, my left ovary and tube were adhered to my colon and I also had endometriosis.

She told my husband and I that if we wanted a family, we'd better get started. So we did.

Much to our joy we were pregnant two months later and had a beautiful girl. When she was 10 month old I had another lap. done to see why my pelvic pain had returned. We again found the left tube and ovary adhered to my colon.

FFW to July 2002 when I had my 2nd lap. when we knew our family was complete (since had given birth to two sons ) we decided ahead of time to remove the left ovary and tube since they seem to cause me so much trouble!

So, they were removed.

I've been battling pelvic pain pretty much since about 9 months after that surgery. But it has gotten increasingly worse since March.

I am on Mircette b/c. I had an MRI done on June 10, because she thought I might have been having some impinchment of my nerves in the pelvis. The MRI showed a 10x16mm mass right on top of my Pudendal nerve.

Living in Nebraska, the dr.'s here, did not know what to do with it. So they sent me up to the Mayo Clinic last week. So, my dh and I trekked up to MN to consult first with a GYN. Who was fabulous. He said he suspected heavily that I had some adhesive disease going on and quite probably endometriosis as well.

We also saw a neurologist who evaluated my pain to see if it was coming from the mass they saw on the MRI. He was very dismissive and he was convinced that my pain was GYN and not from this mass. He said he was quite confident that the mass was an "incidental" finding and benign in nature and recommended leaving it and doing another MRI in 3 months to see if it's grown or changed. He said if it's grown, it will have to come out, but if it's the same size, that would be reassuring that it is indeed benign.

Sooo....

I've been through the ringer.

The kicker for me was, when we were driving to Mayo and I was reading through my chart from my current GYN and I was reading the notes from my most recent surgery in 2002. It said they removed an area from the right culdesac that was "highly questionable for endometriosis".

I was livid! She NEVER mentioned that after that surgery. Just that the left ovary and tube were adhered again.

So, today I called her to ask for a different RX for pain meds. b/c what I have isn't helping, I can't even sleep at night! And she said "Well, Becky, I really wish we could get you fixed, but I'm really running out of ideas with you".

Wow. Thanks, huh?

So, I am trying to decide if I should get a total hysterectomy or try a round of Lupron or what? I'm not opposed to having a TH if I knew it would take my pain away, but we all know it can't be a guarantee.

So, any feedback would greatly be appreciated.

And, bless your heart if you read this post! I'm sorry it turned into a novel!
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  #2  
Unread 07-04-2004, 06:57 AM
Multiple surgeries, pain, hyst? Or Lupron? Or what?

Hi Becky,

Wow, you have been through a lot! And it sounds like you have done your homework and talked to some of the best docs about your condition.

Are the docs saying that the "adhesive disease" is something completely separate from endometriosis? Or are the adhesions due to the endo? If endo is the cause of the adhesions, then it tends to make sense to think that treating the endo will help. But you are right that there are no guarantees, and that's the really heartbreaking problem with endo.

I had a TAH/BSO about 2 1/2 years ago, primarily due to severe stage 4 endo. I was 46 at the time, so probably much older than you. I knew that there was a possibility the endo would return, even after the hyst, but the daily pain and involvement of other organs tipped the scale for me in favor of the hyst.

My regular gyn advised me to consult with a gyn oncologist and the gyn onc later assisted during my surgery. If you are moving in the direction of a hyst, I'd highly recommend that you consult with a gyn onc because they really are the experts when it comes to dealing with complicated endo cases. My gyn onc did peritoneal stripping during my hyst in order to remove all the endo in my pelvis. I also did not take any estrogen for several months post op, later took low dose estrogen, but had recurring endo symptoms so I've now been estrogen free for a year. So you need to be prepared for life without estrogen - and this can be difficult, particularly for younger women who are many years away from menopause.

I was also told by my gyn onc that Lupron can be a good "test" of whether or not a hyst will bring endo relief. Although I never tried Lupron, I was told and have read here that if you get good relief while taking Lupron then you'll probably get good relief with a hyst.

None of these decisions are easy, partly because there are no guarantees and partly because the side effects of drugs like Lupron can be pretty rough. But when you're in constant pain you need relief.

In the end, only you can make this decision after consulting with your docs. Whatever you decide, we'll do our best to provide support. Please keep us posted on how you are doing and what you decide about treatment. Sending gentle hugs your way.

Beth
  #3  
Unread 07-04-2004, 08:35 PM
Multiple surgeries, pain, hyst? Or Lupron? Or what?

Hello, I'm sorry to hear you are dealing with this! I was diagnosed with stage 4 endo during a lap surgery to remove a chocolate cyst from my left ovary. I ended up having a LAVH/BSO one month later. I had horrible pain, and didn't realize how bad it was until it was gone. I'm not sure what to tell you to do-you've done your homework. If you do have endo, it can only be definitely diagnosed through lap surgery. You may need to find a 2nd doctor closer to home. I decided against lupron, as it would only have bought me time before needing a hyst anyway. Everyone's situation is different & you will need to make the decision that is right for you. good luck.
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