I live in the US I heard a lot about thes... - Endometriosis UK

Endometriosis UK

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I live in the US I heard a lot about these great treatments. I don't what to do.I signed to have a full hysterectomy.

Sarahlovesjuliet profile image
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I have stage 4 its on my intestines and Ii feel like it is on or around my bladder and my kidneys hurt.Having this procedure will take care of the periods that are like a stabbing knife .I am stuck on the couch. It was unbearable the pain 14 days straight I bleed heavy.That was the first time that happened.I signed 3 days before that happened to have everything taken out because I was admitted for 5 days for pain control and vomiting .I have a 2 year old toddler to take care of.I cannot stand being away from her for that long.Or how hard it is physically to take care of her.I want to enjoy this part of being a parent.I never thought I could have a child ever for many years 14 years I was told my chances were pretty much not there.Now I'm so sick and I have lupus and endometriosis and I feel like I'm struggling to get through to the next day. Instead of looking forward being happy.I just know I'll have sle lupus forever and endometriosis forever.Ii just do not know if getting everything taken out will help my quality of life.I read too much information and conflicting answers on the matter and it seems like the Doctors who studied do not know what to do .So how am i supposed to know what to do.

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Sarahlovesjuliet
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Marcia71 profile image
Marcia71

Hysterectomy won't help endo I'm afraid as it will be growing on other organs causing pain.

You need thorough excision at the same time if you do think this is the right route for you. In the uk we have BSGE clinics that are best placed for this treatment. I'm not sure what is best in US but you need an endo specialist who is an excision specialist.

Good luck

Sarahlovesjuliet profile image
Sarahlovesjuliet in reply toMarcia71

Yes we do not have many options here she tried to remove the growth and she said it was just everywhere and fusing my other organs to the uterus.Which I can feel it is blocking my left kidney and it hurts terrible and my bladder. I have to pee constantly.I am having it done this Monday with removing both ovaries as well.She said she will do as throe as she can do and take her time to remove everything that is visible and hope she gets it all.But because its on my intestines they move in your body she wont be able to get it all and I will still have the disease.I'm hoping it relieves some pain I am in so much pain I cant walk and I look 9 months pregnant.

Marcia71 profile image
Marcia71 in reply toSarahlovesjuliet

Oh dear. Sorry to hear that. I do hope she gets all the endo.

Hopefully if it gets you to a better place you can then do more research on finding someone to help. There must be people. I've heard about a group called Nancys Nook that is US based so there maybe options there.

All the best

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