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Apr 13, 2019 7:24 AM

Can anyone tell me about their experiences of being diagnosed with endometriosis? I'm starting the process of finding out if endo is what's causing my chronic pain :(

Apr 14, 2019 10:34 AM

It's been years ago but my endometriosis caused me severe cramping and heavy irregular cycles. The doctor put me on BC which helped. I've had 8 surgeries in my abdomen & pelvic regions over a 25 year period, 3 major, and endometriosis has been present every time (even after they removed my uterus & even up around my gallbladder. My sister needed surgery to clean out all in her pelvic region just to get pregnant. I'm sending you hugs love and prayers! πŸ™‚β€πŸ™πŸŒΌ

Apr 14, 2019 11:36 PM

Thanks for sharing your experience. What is BC? I currently have to take up to 240mg of codeine a day to be able to function through my cycle and it's hardly enough anymore :(

Apr 24, 2019 6:34 AM

Can't do hormonal birth control; everything we try makes me suicidal. Got my first round of tests next week, we'll see what they say I guess

Apr 24, 2019 11:09 AM

I'll be praying for you, that they will find the best way to relieve your symptoms!

Apr 24, 2019 12:49 PM

May I ask how old you are? I had a hysterectomy at 36 due to adenomyosis. I had constant cramping and bleeding. The pain was so bad, I had no pain post op because there was just relief lol
Hysterectomy is a last resort so I hope you are able to find some relief.

Apr 25, 2019 3:58 PM

I'm 57 but had a hysterectomy at age 34 then an oophorectomy at 44, them a 10 cm paraovarian cyst at age 49. Endometriosis was present each time, which was confusing because the menstrual cycle is what's suppose to make the endometriosis occur.

Apr 26, 2019 1:16 PM

Flappyslady, did the doctor ever explain how it was present after the hysterectomy? That’s so confusing!

Apr 28, 2019 11:15 AM

No he didn't. And it confused me too. I know when my sister had endometriosis surgery they found it up around her gallbladder and stomach. Crazy!

May 02, 2019 12:21 PM

Hi there, I'm new to the community here, but have been researching and dealing with endo for quite a while now. Unfortunately, there is no cure for endo, including a hysterectomy. It is one of the many misconceptions or myths that a lot of people have, even in the medical community. It can calm the symptoms of endo and help some people's pain, as you no longer have periods, and it can help with other causes of pelvic pain such as adenomyosis. Sadly, many people who have had hysterectomies still end up with major issues from endo years after having their hysterectomy. Endometriosis creates it's own estrogen, and nothing will stop the actual disease from doing tissue damage and causing adhesions unless it is removed surgically by laparoscopic excison that is done by a highly skilled and experienced endometriosis surgeon. There are few truly skilled endometriosis surgeons to go around though, so finding proper treatment can be difficult. :,( If you are on Facebook, I highly recommend the EndoMetropolis group or Nancy's Nook if you are interested in doing research into the condition and how to go about advocating for proper care for yourself. There are even some highly skilled endo surgeons, researchers and other knowledgeable medical professionals involved in these groups. EndoMetropolis also doubles as a support group, where you can talk with other endo patients about their experiences and get emotional support. πŸ’›

May 02, 2019 2:07 PM

Hi there letting you know I had my back follow up go to where it says follow update on my back . Hi andWekcinr to the community. Hug gently to all btw I’m Shore πŸ™πŸ™πŸ€—πŸ€—πŸŒˆπŸŒˆ

May 02, 2019 8:47 PM

I have endometriosis since I was 30. Painful condition. Had a hysterectomy. 10 years later my first abdominal surgery. It had wrapped around all my intestines and had actually choked them off. It’s an ongoing issue. Has calmed down now as I’m 64 now. Of course could also be a issue with my many back issues (?) Fragnarock wishing you the best.🌺

May 03, 2019 9:45 AM

Welcome to the community Guenhyvar! And thanks for this awesome info! Hugs love and prayers you have a blessed weekend!πŸ™‚β€πŸ™πŸŒΌ

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