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endometriosis anyone?

Feb 02, 2017 12:52 AM

what is your pain reliever?

Feb 02, 2017 4:05 AM

I had it. I had a complete hysterectomy. I had fibroid tumors. When she open me up my endometriosis was all over.

Feb 02, 2017 6:55 PM

I "clinically" have endo. Meaning I just haven't had surgery for it yet. I honestly haven't found anything that helps with my endo. I usually use heat packs and meds. My doc said to use ibuprofen for the three days before my cycle and then aleve during my period, but this will be my first period since she told me that (I have severely irregular and almost nonexsistant periods). I'm also in birth control now, and that's supposed to help too (it's the nuvaring btw).

Feb 02, 2017 7:26 PM

do you feel any pain in groin area through your legs?

Feb 02, 2017 10:14 PM

I had a hysterectomy at 19 due to endo. I had 5 laparoscopies in a year. It all over again when they did the hysterectomy. My pain was in the groin area and radiated down my leg.

Feb 02, 2017 11:08 PM

im taking visanne now but the pain in my groin is still there

Feb 03, 2017 9:26 AM

Chai, I definitely have it in the groin area, but it doesn't go through my legs (though with endo it IS known to do that, it just depends on the location of your endo), my pain is located higher. It goes almost up to my stomach and down to my legs. It's mostly in my left side and I can hardly even touch the left side of my "triangle" (the little triangle where your ueterus is). I don't take any prescription meds for it though. I hope that helps!

Feb 04, 2017 4:14 AM

Hi I have stage 4 Endometriosis that was diagnosed 6 years ago. I had adhesions all over my abdominal cavity so the Surgeon performed a Laparoscopy and put me on 6 months Hormonal Treatment to kill the remaining adhesions. After going through several Contraceptive pills and getting side effects from every one, I had an IUD inserted to stop the adhesions from growing back.

Feb 04, 2017 4:24 AM

I had the IUD put in 3 years ago and since then I haven't had any periods and the adhesions haven't grown back. However in November last year I had to have another surgery as I had excessive scarring on my bowel from the first op that had attached itself to my uterus and was pulling it down to my tailbone.

Jun 25, 2017 12:29 AM

I'm struggling with bladder issues connected to my Endometriosis and my last laparoscopy. I've had 2 total and they want to do an additional one in the same year. I'm hesitant because the pain does not stop it becomes manageable then severe in about 8 months to a year after.

Oct 21, 2017 6:13 AM

Hello fellow warriors! Stage 4 (after full hyster) doc messing with my pain meds because I asked to come down on them I've been wanting to try the CBD oil capsules,because I've been on so many for over 20 years. On top of my internal organs being fused together,both of my wrists have severe carpal tunnel waiting on testing in Nov then another surgery for both hand, 20 years ago I had foot surgery my one toe that had wire in it keepin it in place, let goe so is hanging there not feeling good at all, and for the piece de resistance on wed i had all my teeth pulled because of the years on certain drugs (not street drugs prescribed drugs) I am so hungry and in so much pain I haven't slept in 3 nights!...sorry for the spewed info, first time getting it all out!...I feel your pain ladies I hope one day soon no other girl/woman will ever have to deal with pain like this.
I have just started meditating,self hypnosis, and living mindfully. Something has to work, so I am goin to stick to it for a year see what happens. Thing that erks me the most is doc says put heat on it,next day there's an article out by mayo clinic or someone saying heat is the worst thing for endo( surprise surprise cause heat feels amazing) so of course its bad now! Ugggghhh somedays Alice.....

Oct 21, 2017 6:22 AM

@MandaJane , I found them same thing,my OBGYN calls it the "honeymoon period " and once its pver there is hell to pay. How are you managing the pain?

Oct 21, 2017 10:00 AM

Animal Lover, that sounds just like me. I was 36 when I had my total hysterectomy and I had everything you listed. Horribly heavy periods and pain all around my abdomen and back and down my legs. A year before the hysterectomy I had a laparoscopy to remove adhesions and endometriosis. I had multiple fibroids inside and outside of my uterus and the largest being about the size of a 3-4 month fetus. The pain was constant even after the first surgery, so I decided on just having a total hysterectomy. I left nothing behind because I didn’t want to have to worry about ovarian cancer or anything else happening. One of the best decisions I’ve made!

Oct 27, 2017 4:29 AM

Any advice for someone who has recently been diagnosed with endo? I have the groin and leg pain. Currently on permanent birth control which has helped. Had nearly a month with no pain but now it is back with nausea.

Oct 27, 2017 4:48 AM

Ive fibromyalgia and have come off my painkillers OMG the pain i am getting. On the upside i did it by myself within 2 months thats OCD for you lol. It took them a long time to find what was wrong with me. I take each day as it comes as every day the pain is different. I dont leave the house unless ive got to so i dont see my son out playing which is heartbreaking.

Oct 28, 2017 7:30 PM

I just had a laparoscopy to see if I have endometriosis. All they told me was it was an “unsuccessful procedure” and that the “laparoscopy failed”. He said something about the scopes not being able to get far enough to see anything. Just so frustrated. Left with so many questions, have to see my surgeon in a month to discuss next steps.

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