hysterectomy for endo

Hello all, I was wondering who has had a hysterectomy for endo and has it helped you? I'm scared to death about this surgery coming up. Especailly when I hear from some that it won't help. This is one of the 7 doctors I have seen. He is actually my first, I went back to him. He sent me for 3 referrals for other oppions and I went for 3 myself. He encouraged me to do so. I'm so scared.
Please help.
Samantha

Hi Samantha,

I had a TAH/BSO about 16 months ago, primarily due to severe stage 4 endo. I was 46 when I had my surgery. I also had a history of fibroids and it turns out I had adenomyosis too (discovered during pathology exam of my uterus).

I am doing GREAT! I am truly one of the lucky ones and I am very thankful. I attribute this to several things: the great plan my gyn developed for my surgery and post surgical period. My gyn was assisted by a gyn oncologist (actually the gyn onc trained my gyn!) and the oncologist did peritoneal stripping to remove all the endo deep in my pelvis.

I didn't take any estrogen for 3 months post op. During this time I took Megace, a progestin, to help with menopausal symptoms and to supress any possible endo remnants that were missed.

At 3 months post op I began taking Menest 0.3 mg (estrogen) - the lowest dose they make. At 5 months post op I started taking Estratest H.S. (0.625 mg of estrogen, small amount of testosterone) and I'm still taking this now.

My bowels were a real issue for me pre hyst and it took quite awhile for them to really get back to normal (about a year) after surgery. For awhile the docs thought I really did have irritable bowel syndrome - but I've been doing just GREAT for the last few months with no medication for IBS, so my gyn and I both suspect it just took awhile for everything to stabilize.

I know it is very scary to make the hyst decision when you have endo ... there are no guarantees. Find a gyn that you really trust and one that has a treatment plan that makes sense to YOU given what you know about the disease.

Keep reading and posting and we'll do our best to provide support, whatever you decide. Sending gentle hugs your way, Samantha!

Beth

Hello!

I had a TAH on 4/3 for endo. I have had painful periods for years that kept getting worse. 8/02 I had a Lap- stage 3 endo everywhere. I also tried Birth control- didn't help. I am 30 and I felt the best choice for me was a hyst. My Dr. didn't know until he got in what he was going to- TAH/ possible BSO. I was fortunate and only needed a TAH. I too fear that the endo can come back. For me it will be a big relief just not to have to deal with painful periods every month. They had gotten so out of hand!

I wish you the best with your decision. I'll let you know how my story turns out. I pray for my endo to be gone for good!

Best wishes!

Amy

since I am new to this site I am going to add mine to the list for replies but I wanted you to know what I was calling the subject so you could read it as well.

Our intuition is nearly always infallible. I went to even more docs than you had, and resisted the idea of a hyst b/c deep down, I had a feeling I would not be one of the lucky ones. Sure enough, many docs down the road, I met one whom I could trust. I do because his answers to my questions all made sense - and it was a nice change that he was willing to take the time to answer them in the first place!

For example, he confirmed that I had been put through painful PT for no good reason at all, except to line the pockets of those who threw a blanket diagnosis of "trigger points" and "pelvic tension" at me. Of course, some people DO have these things, but I never felt I did. I have trigger points in my neck and upper body, so I have some idea what they're about; I knew they weren't in my pelvic area.

In the end, he said I was NOT a good hyst candidate, that I would still have pain even if my endo was cleaned out 100% - and that my adeno wasn't severe enough to be a factor. I believe it, so now I have to choose between two nerve-ablating procedures. It's scary, but then, all of this is.

If you feel confident and ready, then it's for you....I wish you the best of luck whatever you decide!

Painfree wishes,

Hannah (endoplusadeno)