Regrowth of endometriosis after hysterectomy

by Candy
(LA)

In a way, you can say that endometriosis robbed me of the one thing that god blessed a woman with. The ability to have children. Thankfully in my case, I am blessed with the two best kids in the world, so it did kind of soften the blow.

Growing up with this disease was rough, especially since I thought I was just being whiny or the weak one. I actually just "toughed" things out the best I could in silence, until one night, when I woke up in the hospital fresh out of surgery.

Apparently, I had a cyst bust on my ovary, that caused some internal bleeding. But, after that point I knew I wasn't just the weak one who needed to suffer in silence. During that surgery I had quite a bit of endometriosis located and removed as well.

The next few years was a repeat of laparoscopies, and of course the arrival of my angels. When my daughter was 8 months old, the weight of the mass caused my uterus to prolapse, and they were forced to remove it. All was well until about 5 years ago when I started with some familiar symptoms in my abdominal wall. It almost felt like I was tearing inside every time I tried to stand up straight.

So, on Christmas Eve I go back into surgery to learn that not only do I have regrowth, but the scar tissue has started to fuse my intestines to my abdomen wall on the left side. So I guess I was tearing myself.

About 6 months after my surgery, I started having major pain in my groin and all down my left leg. There is major nerve damage confirmed by 3 different neurologists, but no obvious source that any of the bone doctors can find. I have been suffering with this for 4 years now, and every inch of me can't help but wonder if endometriosis has something to do with this too... Is that crazy??

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May 19, 2015
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Stay far away from Lupron
by: Anonymous

My first opinion surgeon told me I should get on Lupron to see if it could shrink my fibroid tumor. I did some research on that drug and decided to stay far away from it. I even spoke with women who went on this medically induced menopause which is supposed to only have "temporary" effects and they said they never return to normal.

Please do your research. Estrogen dominance seems to be the root cause of all these female problems so I'm doing research on trying to balance and my hormones with the Dr. Sarah Gottfried protocol.

Apr 06, 2015
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Endometriosis severe
by: Anonymous

I have stage 4 endometriosis. I was told by my Dr. that it can indeed spread throughout your entire body. One woman had it spread to her lungs ... So I wouldn't be surprised if your issue with your leg is caused by endometriosis.

Apr 30, 2014
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Response to Anonomys
by: Chrys

You are VERY welcome! I hope the progesterone works as well for you as it does for me! After my total hysterectomy in 2009, they had to leave some adhesions in my bowel/rectum area because it's so rich in blood supply there and I'll tell ya, without me being able to take the progesterone daily to keep it dormant, I would be seeing stars from the horrible pain with every bowel movement! Keep me updated on how you do on the progesterone :)

Apr 25, 2014
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Hysterectomy
by: Anonymous

I had my hysterectomy the day before my 30th birthday. I am 33 now. I have had 2 laparoscopies since then to clean up re growth and adhesions- my colon is constantly getting wrapped in adhesions and glued to the side of my abdominal wall- it's so frustrating!

I have been struggling with my hormones. I have always been scared to take estrogen - the progesterone sounds like a good idea - I'm going to call my doc send ask him about it tomorrow- thx for sharing!

Apr 24, 2014
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Hey there!
by: Chrys

My recovery was not too bad actually! I was sent home from the hospital after 2 days, was on oral pain medications and I was back to work after 6 weeks. I would take it slow with daily SHORT walks and that helped speed up my recovery :)

Don't worry about early menopause. Myself, I didn't get all crazy in the head, I just ran unusually warm with hot flashes on top of that. I was put on a medication called Gabapentin one capsule three times a day and within 3 days of starting the medication, my hot flashes were considerably better!

It took me about 5 days to get used to the very groggy/tired feeling the medication makes you feel until your body gets used to it but I ploughed thru that and I've been on it for 4 years now and I'm doing great!

A follow up bone scan is a good idea as you age. Take extra calcium with vitamin D to help your bones absorb it better.

I wish you all the best with your surgery and recovery. You will feel like a completely different person after all the physical healing is done! Soooooo much better! :)

Apr 12, 2014
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chrys
by: tranquilessence

Hey Chrys,
How horrible was your recovery? I'm about to do the same and actually feeling really confident about it. My main fear is early menopause and early aging!

Feb 23, 2014
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Endometriosis and hormones
by: Chrys

Hi!
I don't think it's too far fetched actually. Endometriosis is not an exact science. Do you still have your ovaries? If you do, the endometriosis feeds off of estrogen and is still causing any adhesions or lesions you have to flare up.

You do not need a uterus or a period every month for the endometriosis to flare up. If you have your ovaries, your body is still producing the estrogen which in turn is causing the endometriosis to flare up.

I had a wonderful infertility doctor who taught me quite a bit about endo and how our hormones affect it. After my total hysterectomy at age 38, I still had microscopic lesions left over in my bowel area and I would have searing pain with every bowel movement.

My doctor put me on an oral low dose of progesterone that I take every day and it has completely stopped my pain. The progesterone keeps the adhesions dormant and I do not take any oral estrogen. I don't have my ovaries or my uterus but taking just the progesterone orally has kept it at bay.

Ask your doctor to try putting you on progesterone (if you don't have your ovaries)to see if it helps you. If you have your ovaries, ask your doctor to shut them down(Lupron-one med I used when I had my ovaries)Yes, menopause.

But to me, it was the better decision than dealing with debilitating pain all the time. Discuss it with your gynaecologist. You never know! Good luck :)

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