confused

[reese28]

Hello Ladies I'am confused? I'am reading information about endometriosis, its true that when you still have pain you can have hysterectomy?

THIS IS.. If you have completed your family, and other treatments have not worked well, removal of the uterus (hysterectomy) and removal of the ovaries may be an option. This has a high chance of success for curing the symptoms.. is this true? I'am thinking after my IVF success can I have hysterectomy to remove my ovaries? hysterectomy is the best option?? I really don't want this pain its destroyed my life..I don't want to live this kind of pain I'am 29 years old I don't want to have pain till I'am 40,50,60 till I die?? I want to enjoy life :( I hate this disease,sorry I'am hopeless.

[lulu747]

Man this disease is the worst!!!

I really hope your upcoming surgery- both of you- gives you some relief.
My surgeon was pretty clear with me that my surgery Oct.8th may not be the fix that the last one was.  I am pretty scared I have adenomyosis.  The endo I can deal with, the adenomyosis is a new bird.
Also.  I cannot do ANY hormone therapy.  Every time I put ANY hormone in my body I have a flare of one of my autoimmune illnesses.  Last year it was my Crohn's, now it is my rheumatoid arthritis.
I feel sick, tired, and am in horrible pain all the time.
The meds don't touch it.
I send a prayer out for you, for all of us that we find some relief and peace from this terrible disease.
Stay strong sisters!!
Lu

[ipurr2]

I had severe endometriosis finally confirmed after I diagnosed it clear back in 2004...I had a complete hysterectomy with my ovaries removed and my endometriosis continued to destroy my pelvis...now 6 surgeries later I am doing better in regards to pain...but I still have pain every day...I would strongly recommend you see an endometriosis specialist that does excision surgery (cuts the endo out) in order to not have pain (or hopefully not have pain or at least less pain) the disease has to be cut out as that is the only potential cure for this monster disease...it is like if you have a grain of sand in your eye it causes a lot of inflammation, irritation and pain...endometriosis is the same...one tiny missed bit of the disease can continue to cause pain and since it can be the width of a strand of hair it is important to see a specialist if you want any chance at being well! It frustrates me to see dr. still just saying take the organs to cure the disease because this is inaccurate information. The only way to get rid of endometriosis is to cut out the disease and it's roots...if they do ablation (burn it) all this does is kill the top layer of the disease, but unfortunately the disease has roots like plantars warts so it goes very deep and must be cut out like cancer - beyond the disease in order to ensure all the disease has been removed. After I had all my female organs removed (castration) it caused me many other issues which an endometriosis specialist would not have done...and this has changed my life in a huge way...my life is good don't get me wrong and I am not complaining (too much!;)) but it has certainly been hard because the Dr.'s I had in the beginning of my endo journey did not understand the disease...Please feel free to pm me if you want to or continue conversation here...good luck in the endo journey it is so challenging because it's one of those "unseen diseases"! {{{hugs}}}

[reese28]

Hi..Lulu thank you for your replay my first surgery was c-section 2011, since my first period at agev13 I have really bad pain my mom said not normal because I stayed in bed for 3 days I don't eat anything, my first surgery I thought I don't have pain but after 2 months my utrasound shown cysts my obgyn said maybe it will go when my period, I still have bad period pain back pain I ignored because I am working, after 2 years getting worse my pain Nov. 2013 worse pain ever! everyday nearly a year I struggled this disease I have laparoscopy July this year to the endometriosis specialist only drained my 2 large endometrioma cysts, I have severe Endometriosis stage 4 here's my Diagnoses: endometriosis of ovary, Endometriosis of rectoviginal septum and vagina, Endometriosis of pelvic peritoneum, before my consultant said I also have adenomyosis, my next surgery on 3rd October to remove all endometriosis..I'am really tired of this disease,its true this disease destroy your life, relationship, work,family, everything....Thank you so much for your support :) Reese

[lulu747]

Hi.
I know this disease is awful.  It has robbed me of so much and I totally relate.  As I understand it a total hysterectomy can help, but not always as endo grows outside of the uterus.  What stage do you have and have you had excision surgery?
I have stage 4 endo with bowel and bladder involvement and suspected adenomyosis.  I had total pelvic reconstructive surgery (excision surgery) in 2010 and experienced 3 years pain and symptom free.  Then it came back with a bang last October.  I am going in for my second excision surgery on Oct.8th.  I don't have any children and really hope to conceive after this surgery.  If I have adenomyosis my plan is to have a partial hysterectomy after I manage to have a baby....IF I can have a baby.
The key is the right doctor.
Unfortunately, there are no real cures for the pain of this disease but excision surgery does provide relief for a time.
We are all here to support each other.  Hang in there....
Lu