Endometriosis

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Posting a question on Nancy's Nook Group?

Posting a question on Nancy's Nook Group?

Does any one know how to proceed for a post on Nancy's Nook Education Group?
During my search on Excision Surgeon List for Egypt. Egypt wasn't there.
But I saw a video of Dr Mohamed A.Mabrouk on Nancy's Nook . I noticed that he is Egyptian from Alex.But, he is working in U.K as i think.
So , i posted asking Nancy about not having Egypt in List and to help to get Contact with Dr Mohamed A. Mabrouk to ask for possibility to perform Excision Surgery in Egypt .
Can any one… read more

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A MyEndometriosisTeam Member said:

Thanks I'll check maybe UVA or VCU first. But Atlanta sounds promising if not and only about 10 hour drive from me.

posted about 9 hours ago
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Has anyone tried Orilissa?

Has anyone tried Orilissa?

Hello,

I have suffered from debilitating pain with my ovulation and periods for 15 years. I was diagnosed with endometriosis in my ovaries. Has anyone here tried Orilissa for pain? It’s very new and I haven’t been able to find any patient reviews online. If this medication works without crazy side effects it would change my life. I’m excited about it but don’t want to get my hopes up. Please let me know if you take it/have taken it, know someone who has or even if you have any advice on… read more

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A MyEndometriosisTeam Member said:

Early morning, thank you! I’ve never heard of norethindrone I’ll be asking my doctor about that and if it might be a good choice for me to also add on.… read more

posted 4 months ago
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Has anyone tried the new endo treatment Elagolix (ORILISSA)?

Has anyone tried the new endo treatment Elagolix (ORILISSA)?

I try to keep up on the latest endo treatments and I have been following this drug development since 2016. I hear it is basically a pill version of Lupron but I am not sure if that is 100% true. Do you guys know if it is basically Lupron and/or have you tried it?

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A MyEndometriosisTeam Member said:

That’s all great to hear! My dr seemed so negative about it but he is really pushing a hysterectomy now, so that may be why.

edited, originally posted 4 months ago
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Does anyone have diarrhea and cramping still after hysterectomy?

Does anyone have diarrhea and cramping still after hysterectomy?

I had a hysterectomy on the 5th and still have really loose stool and cramping. I know it has only been 3 weeks but I'm feeling good otherwise. Just don't know if the endometriosis could have went somewhere else. Asked my Dr and all she said is it's rare for that to happen.

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A MyEndometriosisTeam Member said:

I'm going to see my Dr today. Already made another appt with an actual Endo Dr. It's a little bit farther but I want a second opinion on this issue. I… read more

posted 1 day ago
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Looking for help/recommendations

Looking for help/recommendations

I got diagnosed 2.5 years ago with a laparoscopy and was on depo provera for 2 years, then norlyda, then a combination birth control, now a different form of norethindrone for about two weeks. Also take Letrozole consistently for a month and a half. I have had pain since my initial surgery but it’s grown steadily worse. It’s eapecially concentrated on my left ovary now. Anyone have any treatment suggestions or had a chocolate cyst? I think it could be that.

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A MyEndometriosisTeam Member said:

I had a chocolate cyst on my right ovary... severe pain every month then constant back & hip pain. It was very obvious when they did a vaginal… read more

posted 8 months ago
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Norethindrone and nausea

Norethindrone and nausea

I started Norethindrone about 4 weeks ago and I'm having severe nausea (I've vomited once) and acid reflux. I'm wondering if anyone else had these side effects and if they either a) went away eventually or b) found a way to reduce the nausea.

This is my 7th or so attempt at hormonally treatments for my endometriosis and I really want it to work out, but I'm so nauseated. I've had to quit all the others I've tried because the side effects were too great.

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A MyEndometriosisTeam Member said:

Thanks! I saw my doctor and he is lowering my dose, so I'll see if that helps.

posted about 1 year ago
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Endometriosis in bladder

Endometriosis in bladder

I recently had my second laparoscopy where endometriosis was removed from my bladder (water pipe), according to the trusted source, Google..it’s rare. Has anyone else had endometriosis in the bladder?

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A MyEndometriosisTeam Member said:

I had endometriomas blocking my ureters and had to have stents placed and later removed...

posted 3 days ago
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Hysterectomy option

Hysterectomy option

For those who have had a hysterectomy could you share your experience?
I have had excision, been on Lupron, Depo and every pill under the sun. My options are slim and I’m miserable.
Yes I had my surgery with a Nook excision specialist.
Yes I know a hysterectomy is not a cure.
Yes I know I’m young.
Yes I am aware that takes away my option to bear children.
It’s a difficult decision- hence my research and advice seeking.
But I am out of options and I do not want to be miserable the rest of my… read more

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A MyEndometriosisTeam Member said:

I had a hysterectomy in Nov 2012 and was diagnosed 9mo later in Aug 2013 with endometriosis. Now in 2019, I am still overcome with chronic pelvic pain… read more

posted 3 days ago
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Endometriosis on Uterosacral Ligament

Endometriosis on Uterosacral Ligament

Does any one in the group have endometriosis on uterosacral Ligament ? Have you experienced problem of sitting post - op due to having strange feeling at end of your back where you sit ? If , Yes , for how long does this continue? Or , this lower back problem is due to Ablation and not doing excision by the surgeon?
I am now 7 days post-op

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A MyEndometriosisTeam Member said:

@A MyEndometriosisTeam Member Thanks alot . Great that any physiotherapist could do.

posted 4 days ago
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Endometriosis post op

Endometriosis post op

I'm 1week post op and was wondering does the pain disappear completely after excision?also has anyone noticed a change in symptoms by changing their diet?I've seen a lot of diet tips online

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A MyEndometriosisTeam Member said:

No,I don't really know much about the pelvic floor physical therapy.Let me know how it goes for you

posted 5 days ago
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