Endometriosis

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Post-op issues

Post-op issues

Hi everyone,

Had surgery on Monday. I had already been diagnosed with endo so we thought that's what would be found this time.. i had zero endo but had extensive adhesions due to scar tissue. They involved my intestines, my left kidney, and my left ovary.

I felt good in the days following surgery but as the week has gone on i feel worse and worse. I've had alot of nausea off and on, a headache, some weird pains in my abdomen, and a good bit of bleeding. I tried telling myself that my body was… read more

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A MyEndometriosisTeam Member said:

You are right. They are horrible bc when they are stuck to other organs like mine are then there is nothing they can do for you bc it is too hard of a… read more

posted about 1 month ago
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Has anyone else dealt with abdominal wall endometriosis?

Has anyone else dealt with abdominal wall endometriosis?

I have had it for a few years now and it has really gotten bad the last few months. I'm wondering if it is more internal than doctors originally thought. Struggling to find a treatment that actually helps. I've been on a couple iuds and a couple birth control pills but nothing has really helped. Currently on loloestrin.

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A MyEndometriosisTeam Member said:

Thank you both very much! I appreciate the feedback

posted about 2 months ago
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Orilissa and Duavee

Orilissa and Duavee

I haven't had laparoscopy yet but my doctor is putting me on Orilissa, claiming she needs to shut everything down before she can do the surgery. I am worried about the side effects but she is also putting me on Duavee which is for treating symptoms of menopause. Has anyone else found Duavee helpful during the basically induced menopause from Orilissa? (other info- I am 23 and have never undergone any endo treatment besides hormonal BC when I was a teenager)

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A MyEndometriosisTeam Member said:

Thanks for your help. I know everyone reacts differently to these things so it's hard to trust sweeping opinions from people who are all in different… read more

posted about 2 months ago
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hair loss and post pill acne?

hair loss and post pill acne?

Does anyone else here have an issue with hair loss (chunks of hair coming out when brushing, brushing hands through hair, washing and etc) and acne from endo, from being off the pill for a while and/or also after surgery? I've noticed my skin has changed so much and I've always had clear smooth skin and also my hair has been coming out in chunks and thinning out a bit now, my hair is usually thick. Just curious to see if anyone else has had this issue or is currently going through it… read more

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A MyEndometriosisTeam Member said:

Have you been evaluated for PCOS? Hair loss and acne are both symptoms, and it's fairly common to have that along with endo. Sounds like there may have… read more

posted 13 days ago
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IBS D & Endo

IBS D & Endo

Hi. Just joined. Have endo for 20+ yrs. Burned out 20 yrs ago and lasered 2 yrs ago. Deal w/ PCOS as well. Always thought my issues were related to that because of ruptured cysts. However, my D is so severe went to ER for dehydration. Take The Pill every day (no week off) to not have period to keep endo at bay. 20 yrs ago also did medication to throw me into menopause. GYN says 2 yrs ago endo was eveywhere in my body, lasered what she could. Usual endo symptoms: Chronic Diarrhea, Stomach upset,… read more

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A MyEndometriosisTeam Member said:

Yes. Did breath for SIBO. Seen functional med Dr. Unfortunately hard to get in & when I do spend all my time updating info e/ testing from other dr.… read more

posted about 2 months ago
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I’m curious if anyone has a retroverted uterus?

I’m curious if anyone has a retroverted uterus?

Hi, I’m new to this! I’m looking for a bit of advice. I’ve never formally diagnosed with Endo. However, I suspect there is a possibility that I have it. My mother has it, and I have a lot of the typical Endo symptoms. When i first started my period, it was a monster, complete with a full on 7 day heavy bleeding, irregular, vomiting mess. Lots of cramping, lower back pain and cloudy urine. I’ve spent the last 10 years on birth control pills, but recently 6 months ago… read more

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A MyEndometriosisTeam Member said:

I was told I had one last year but I never heard much more about it to be honest. I don't think it's related to endo, I think they said it just happens… read more

posted about 2 months ago
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Could my pain be endometriosis? I’m 20 yrs old, I’d never heard of it until recently, but I now suspect I have it..

Could my pain be endometriosis? I’m 20 yrs old, I’d never heard of it until recently, but I now suspect I have it..

Since my first period, they’ve always been extremely heavy, lasting ~10-12 days. I remember having crippling pain just before and throughout the entirety of my period that would often have me curled up in bed or the bathroom floor, I even fainted in school a couple of times trying to tough it out. A heating pad and 4 ibuprofen every 4-6 hrs were the only things that helped manage my pain but never… read more

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A MyEndometriosisTeam Member said:

Thanks for this useful link

posted 3 months ago
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Pelvic Floor Dysfunction? Vaginal Valium Suppositories?

Pelvic Floor Dysfunction? Vaginal Valium Suppositories?

Does anyone else have this condition? I went the doctor for a follow up after being in the ER. And after talking about the latest trip to the ER. My exam I was diagnosed with Pelvic Floor Dysfunction. The doctor said it was caused by body’s reaction to the pain from my sever cramps.

The doctor said that my pelvic floor muscles are too tight. (Which I didn’t know was possible.) Because of the natural gaurding respones to pain. And the doctor perscribed me… read more

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Ovulation GI issues

Ovulation GI issues

Any one else experienced really bad GI pain, bloating, constipation around ovulation day? I have not been diagnosed yet, my appt with a specialist is in May but for the second month I experience horrific stomach pain about when I ovulate. I have been eating well so that shouldn't be a trigger ( low fod map, gluten free, dairy free,etc)

Also, I have cramping but it's hard to tell if it's IBS and bloating related or if this is all caused by something else
Thanks!

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A MyEndometriosisTeam Member said:

GF, Dairy free, starting low Fodmap. Still miserable this cycle.

posted 2 months ago
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16 ur old daughter

16 ur old daughter

A few questions... my daughter is 16 and has had a laser lapraoscopy which helped a little. She tried the IUD which was bad. She’s on the pill now with no period breaks. She misses high school one or two days a week. Has anyone taken Orilissa? We are in the Twin cities and the OB/GYN we tried to get into is only taking surgical candidiates and I don’t think she is one. Any help would be appreciated!!!

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A MyEndometriosisTeam Member said:

posted 2 months ago
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