da Vinci hysterectomy recommended for severe endometriosis

Long story short, I just found out about a year ago that I have endometriosis. It was rather by accident when my neuro wanted my hormones checked due to my migraines. Instead, we found a pollyp and I had a D&C, laparoscopy & hysteroscopy and removed many adhesions. Hindsight told us that my previous doctor had been putting off my symptoms for several years. We decided on a course of Depo-Lupron shots and then Seasonique to suppress my endo.

My ob/gyn left the practice in Jan (for personal reasons) so I followed up with her colleague which brings us to the present. My first cycle on Seasonique gave me about 6 days of cramps. She reviewed my file, which included pix from my surgery, and she recommends a da Vinci hysterectomy, including both ovaries. She said my case was pretty severe. Even though the last doctor wasnt that direct with me, I could read between the lines and wasn't surprised. I have two beautiful children that are even more of a blessing than ever. I'm most upset by the fact that I'm only 37 years old and I and hardly can keep track of the surgeries I've had already.

I feel this is the right answer but am looking for support I suppose for anyone who might be in the same shoes as me. And when should I schedule it? The doctor has kind of left it open.

You'll need some help during recovery, especially if you still have kids at home. Talk to your family and try to schedule it at a time when someone can be there with you for a while during recovery. Some ladies recover rather quickly, and some take a bit longer. In my case I was a slow healer. It's always better to plan for a longer recovery, then if your better sooner it's a bonus. Make sure your surgeon is rather skilled with endometriosis, maybe see a specialist for a second opinion. I have read on this website that if endo, even a small amount, is left behind your symptoms can return . Best of luck to you.

How do I find an endometriosis specialist? I've asked around and tried searching the internet but I am not coming up with anything.

i had a hysto aged 36 i had 1 ovary left behind but was never told that my endo could return because of the hormones that the ovary produced. now 5yrs on my ovary had become stuck to my bladder and was crushing my bowel by 80% so constipation every day for the past 2yrs. i had it removed last thursday so still recovering. i now have to wait and see about how i react concerning the meno then decide what to do. i dont know if this helps but if i wish id had the full info the first time round and maybe i would have had both ovaries taken. x

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Originally Posted by pinkknab How do I find an endometriosis specialist? I've asked around and tried searching the internet but I am not coming up with anything.

To help, we have created a couple articles:

How Can I Find a Doctor Who Specializes in Treating Endometriosis?

Member recommended endometriosis specialists

The first article contains several tips to get you started on your search.

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Originally Posted by kelton i had 1 ovary left behind but was never told that my endo could return because of the hormones that the ovary produced. ... i dont know if this helps but if i wish id had the full info the first time round and maybe i would have had both ovaries taken. x

As an FYI, removing both ovaries does not necessarily end endometriosis. Endometriosis can create its owns supply of estrogen and thus be self-sustaining. Additionally, estrogen can be critical for overall health so going without it may not be an option for all women.

The key for treating endometriosis is not the removal of our reproductive organs, but rather the excision of the actual implants themselves. As long as endometriosis remains, it has potential to continue to cause pain and issues whether or not there is a uterus or ovaries.

Seeing a specialist can offer the most successful outcome. Though I did continue with some pain following my hysterectomy because my OB/GYN had to leave endometriosis on my bowel walls, since I had excision surgery with an endometriosis specialist I have been endometriosis pain and symptom free and I still have both ovaries and was initially diagnosed with stage IV endometriosis.

There is hope and there is help, but one has to find a skilled surgeon and medical team because this condition is so confusing and complex.

(((pinkknab))), I wish you well for whatever you and your medical team determine is best for you!

	Quote:
Originally Posted by Weiser To help, we have created a couple articles: How Can I Find a Doctor Who Specializes in Treating Endometriosis? Member recommended endometriosis specialists The first article contains several tips to get you started on your search. As an FYI, removing both ovaries does not necessarily end endometriosis. Endometriosis can create its owns supply of estrogen and thus be self-sustaining. Additionally, estrogen can be critical for overall health so going without it may not be an option for all women. The key for treating endometriosis is not the removal of our reproductive organs, but rather the excision of the actual implants themselves. As long as endometriosis remains, it has potential to continue to cause pain and issues whether or not there is a uterus or ovaries. Seeing a specialist can offer the most successful outcome. Though I did continue with some pain following my hysterectomy because my OB/GYN had to leave endometriosis on my bowel walls, since I had excision surgery with an endometriosis specialist I have been endometriosis pain and symptom free and I still have both ovaries and was initially diagnosed with stage IV endometriosis. There is hope and there is help, but one has to find a skilled surgeon and medical team because this condition is so confusing and complex. (((pinkknab))), I wish you well for whatever you and your medical team determine is best for you!

omg i was not told that, my gyny told me before my op last week that once my ovary had gone that would be the end of my endo. i do hope this has cured my bowel problems :0(

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Originally Posted by kelton omg i was not told that, my gyny told me before my op last week that once my ovary had gone that would be the end of my endo.

Sadly, that is what many physicians believe. Here is an article with some information about endometriosis and its own estrogen: http://www.northwestern.edu/newscent.../01/bulun.html

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i do hope this has cured my bowel problems :0(

It will depend on what exactly is causing the bowel issues. If it is endometriosis on or around the bowel, it needs removed. If it is adhesions, they need removed. But women with endometriosis also have higher instances of IBS and conditions such as Crohn's and ulcerative colitis. For those who are registered members with OBGYN.net, there is an article titled "New Risks for Women with Endometriosis" that discusses Crohn's and ulcerative colitis. Here are some other articles on bowel symptoms (besides Crohn's and ulcerative colitis) and endometriosis:
http://endometriosis.org/resources/a...owel-symptoms/
http://www.centerforendo.com/articles/bowel.htm
http://www.vitalhealth.com/patient-p...-the-bowel.php

my bowel was being crushed from the outside by 80-90% i have no idea what was totally removed as my gyny came round and explained whilst i was still out of it. i wont see him again till august so ill find out then. thanks for the advice. xx

Thank you for the replies! With Duke University being so close (2.5 hours, it's all relative, I guess), I just looked them up and gave them a call. It appears that they are specialists. I felt weird asking my own gyn and so far everyone else I've asked hasn't been much help. This is fairly new to me and this is my first support group, so I haven't had much exposure to resources. Thanks again.

I had a da Vinci hysterecomy & oopherectomy in December. I did not know I had endometriosis at the time, so it was not something I had researched when considering HRT. I was very surprised to learn I had such extensive endo. My doctors suggested a 6 month no HRT break and then only if necessary, do the vivelle dot.

I made it 4 months without HRT, but the hot flashes were disrupting my sleep too much and my sex drive was gone. I started the vivelle dot and subsequently began gaining weight, feeling puffy, and had some acne breakouts. I have re-started spironolactone as an anti-androgen and diuretic in the hopes that the weight gain is water retention. Thankfully the brain fog lifted a bit and my sex drive returned - what relief it was to have pain free sex again! It had been years...

My biggest concern now is pelvic pain - diffuse burning pain and pain on my left side like before my surgery. The burning usually gets intense when I have a bowel movement. Intercourse has become painful again. I feel like I'm taking a big step backward and am sad and anxious that the endo may have returned.

I have contacted my surgeon and my reproductive endo, but not sure if either can help me. The idea of having to do another surgery to excise the endo is very depressing, as is the idea that I might not be able to continue HRT, b/c overall I do feel better when I am on it.

I'm still better than I was before surgery, but would like to be pain free again. Any guidance on what to do next would be appreciated.