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endometriosis is back - taking norethindrone... again
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endometriosis is back - taking norethindrone... again

Hello all;
Long story short: ob/gyn suspected endo about a year ago, as I had many burst hemmorrhagic cysts, severe pelvic pain and painful intercourse.  She was pretty sure it was endo, so we attached it with the "big gun" right away: Lupron, 5mg of take back and pelvic floor physical therapy.
Lupron didn't work for me.  I had every bad side effect you could possible imagine.  Constant palpitations and fall to the ground dizziness.  I went back a month after and we decided Lupron wasn't right for me and I had a laparoscopy on 3/29/10 which confirmed the endo.  
a week ago I ended up on in the ER with severe pelvic pain again.  I have a 6 cm cyst on my right ovary.  It developed in less then 3 weeks.
Today I went for a post op appointment.  Doctor is positive the endo is back as I'm in severe pain again  pretty much on a daily basis.  
I suffer from severe migranes (migraines), so birth control is not a option for me.  
Before we throw in the towel, doctor decided to do nerothindrone to see what  happens.  I'm seing her again in month.  If things haven't improved much by then, I will have a partial hystorectomy and remove both my ovaries.
My question is, anyone know of any other options?  I don't plan on having children, but then again I'm only 28 and could change my mind.  On the other hand, I feel like I need to concentrate on my quality of life... which is pretty poor right now.
any thoughts would be greatly appreciated
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17 Comments Post a Comment
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1214188_tn?1272327807
i don't come back to this web because i got very sad lately.....my endometriosis is back again too.....i had 2 surgeries in one year, stage 3....5 months later after second surgery my pains came back.....I couln't be on birth control, becasue I was trying to get pregnant..... am 41, no kids...................i don't want to go through laparoscopy again and than what?... a few months later endo is back again?...i don't want to go on Lupron or etc, because it can have side effects later on...like bone loss...so I am dealing with pains as much I can....sometimes I even cry.....and I know whats is next for me......hysterectomy.....Your case is different....I am surprise that your endo came back so early.....did your surgeon removed all your endo or just part of it?.....from my experience....my first surgery they removed only part of it.....i found that when I asked for operative report, because I still had pains after first surgery........my second surgery was blessing...big relief....for 5 months.....I had greatest surgeon in the city......because i was trying to get pregnant i didn't take birth control, which would help me....but......If you will have to have partial hysterctomy....if your endometrium still in perhaps talk to fertility clinic to save some eggs......you never know, you are still young.....good luck to you!!!!!......second opinion from different gynecologist would be great too......
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1280060_tn?1272504751
Thank you for  your response!
So sorry to hear about  your constant pain.  
Yes, both my doctor and the operative report state all the endometriosis was burned.  From what I gathered from the ob/gyn today, It can come back very easily.... as long long as there's estrogen.  I have a history with ovarian cysts, too... which obviously doesn't help.
A lot of  people have suggested a second opinion.  However, I really do feel my doctor has been EXCELLENT with me.  She always gives me options and presents different scenarios to me, which is very helpful.
You're so right about the laparoscopy.  It's only a matter of time until the endo comes back.
If I do end up have a partial hyst, I will speak to a fertility specialist about the eggs.
How long have you been trying to get pregnant?  Are you working with a fertility clinic?
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Avatar_f_tn
I was on norethindrone as well and had to switch because it constantly made me bleed and had surgery on feb 16 and found out my doc could not remove all of  my endometriosis so i am still  having pain, I think it is still really early but I am still having pain to notice any difference
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1280060_tn?1272504751
If all the endo wasn't removed, it's very likely that you're in pain becasue of what wasn't removed.
If you had surgery in February, you should've definately had relief by now.  Why wasn't your doctor able to remove all the endo?
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1214188_tn?1272327807
thanx for your respond lil, i will try bc this month to reduce the pain...so I will see, how my pain will be............i did not see the fertility specialist, and probably won't be able to do it......i had some basic tests done...........it looked fine..............but my endo probably did some demage inside of me....tha't why I can't get pregnant, we have tried for 2 years.....and also I am not getting any younger either....haha............
Well.....I should appreciate what good in life I have............the nice man,.... which took me a long time to find him......take care...and good luck to you.......
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1222892_tn?1312152424
First let me say how truly sorry I am for all of the women dealing with endo...Please always get a second opinion even if your doctor is AWESOME because some have more experience than others with endometriosis and could possibly help you to fulfill your dreams of becoming pregnant. Try everything before you accept a hysterectomy. Especially  for the young girls suffering witht this GOD awful disease. Sadly some doctors will recomend a hysterectomy because of multipule surgeries but try to have a baby before you just accept that fate. Good Luck to All...
Keep us posted. Best Wishes...
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999780_tn?1263675571
PLEASE TRY AND FIND AN ENDO SPECIALIST.I put this in big letter cause I am only 33 and was told a hyst was my only option after many laps.Now that I have found an endo specialist I was told that I didn't need to have a hsyt. I was told that my OBGYN was the best in the state and that he knew everything there was to know about endo.Since finding this endo and fertility specialist in WI which is out of state for me I am very hopeful that I will finally be pain free and he may be able to save my remaining ovary.
Please go for a second and even third opinion. It is also true that you can be born with endo cells and it has nothing to do with your estrogen levels.Please research this on the internet although as someone with endo I think we practically live there looking for ways to help ourselves.I am so hoping for a better quality of life and this endo specialist says that he can do that for me.
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Avatar_n_tn
Hi, I've just had a laparoscopy for a cyst and endo. I still don't know the extent of it yet as I have yet to visit the doctor. But before the operation I was seeing a Chinese herbalist that specialised in getting women pregnant and she told me that there are Chinese herbs that can treat endo. Am not sure if they will cure it or just offer pain relief, but I really think it's worth considering before having a hysterectomy.
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1214188_tn?1272327807
i know that accupuncture could help, so that's what I will do.............before I give up....
I will have to find the best one in NJ?...anyone knows?.....it's nice to know that I am not alone, but I wish we did not have to deal with this disease at all.
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1280060_tn?1272504751
Hello everyone,
I've been considering a second opinion... but I'm not sure if I can deal with the process of having all the test again, waiting, etc.  My doc pretty much has given me every option and treatment there is out there for this desease.  I dunno......
Yes, I have heard that accupuncture can really help.  
I'm not trying to have children at the moment... as a matter of fact, I'm not sure if I even want children but do understand that I'm young and can very easily change my mind.
I'm up for the PROMOTION OF A LIFETIME at work.  Dealing with endo and calling in about 2x a month, doesn't exactly look good.
I guess what I'm saying is that I'm soooooooooo sick of dealing with the pain and I'll just do whatever needs to be done.  Right now as a type I feel like I'm getting stabbed....ggrrrrrr.

Just not a good morning.  Sorry ladies, but I just really needed to vent.
I wish everyone the best and pray for a cure for this God awful desiese!!!
Love,
Lilia
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Avatar_f_tn
Hi lil1226
They couldnt remove all of my endometriosis because there was to much of it to remove, at least thats what i was told, I figured that they should be able to take it all out at once but i guess not
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1068834_tn?1294013592
Please keep in mind, that with a hysterectomy comes hormone replacement therapy..To me, this counter acts the reason for the hysterectomy. If it is the hormones (estrogen) that make the endo grow, than it will only come back once the hormones are reintroduced..

food for thought..

I had lap to remove endo in December of 09. I am now having symptoms again.. and am searching for a cure all as well.. I don't advise a hysterectomy at such a young age..Even when children are not foreseen..
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1309439_tn?1274118533
Hey girl
I know it ***** but i have also considered getting hysterectomy I have two kids and I am 24 they will not do it..I am too young they say My expierence with endo has left me feeling helpless bitchy and very short tempered unlike me at all I am still researching my options and have gotten the run around from my doctors so please anything you can tell me as well will be helpful I will not take the lupron because of it having serious side effects and not a garenteed to work or take my pain away there is surgery but as I have seen has not been a long term effect in relief If any part of you wants kids yu should do it now because endo will make you infertile it says and if yuo more time go to pain mangement for a while until you are really sure GOOD LUCK
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999780_tn?1263675571
As I have said before please try and find an endo specialist in your area.Dont let the OBGYN tell you that he is a specilaist because most of them are not.You can find endo specialists on a website called www.hystersisters.com. They will help you and give your options.I can recommend one in the IN,IL,WI area. I live in IN and I am travelling 3 hours in June for endo surgery and a bowel re-section as my endo has totally taken over my colon,diaphram,bowel,bladder and pelvic area. I really hope this helps you.This dr is my last resort.I have already had a hyst and was left with one ovary and tube as the dr said that I was too young to have a complete but it seems now that I will have to loose that ovary too as the endo is so entwined with the ovary.The specialist is going to try and save it for me.
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1280060_tn?1272504751
Protea: I'm going to take a look at the website you listed above.  Wow... your endo is really "all over the place".  I hope this specialist can help you out and come up with a solution for you.
I think we finally got my pain somewhat under control.  A little over a week ago I was at a social event.  Left the house with some pain already.  Took some aleve and left.  The pain never went away... just the opposite.  I ended up being carried out by my fiance.  Called the doc... she said since I was only taking norethindrone for about a week, it really hadn't kicked in yet.  I told her I didn't want norcotis as I have a long commute and do sales.  She called me in Ponstel... it's a super strong antifalmatory.  What a miracle this pill has been.  As soon as I feel a little pain coming on, I take one and in less then a 1/2 hr the pain is pretty much gone.  Of course, this is a short term solution.  If I have to keep taking that, then that means norethindrone is not doing its job.

clh98: Hi, not sure if you know the answear to this, but doing a partial hyst and leaving in the uterus, will hormonel replacement therapy still need to be done?
I'm going back to the doctor in 2 weeks... we'll see what she has to say.

Thanks for everyone's posts and comments.  It's really helpful to hear other peoples situations and how everyone deals with it.


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Avatar_f_tn
YES! YES! YES! Please do not get a hysto, you are too young.  

If you do anything and I BEG of you to do this, get online and contact the specialist closest to you, FIND AN ENDO EXCISION SPECIALIST (using a laser to remove the endo, NOT burning it (my local GYN did that during my first lap and it was a diaster) burning endo does nothing to it but inflame it and make it worse), there aren't many of them, but they are god sends. I think the website will block the post if I name names but two of the best are in Oregon and Atlanta, GA. Go get a surgery with them, it will change your life.

I have been suffering with endo and adenomyosis for years, been on all the drugs, I've done it all and the reality is that endo is a battle we will be dealing with for life.  Excision of endo (with a proper surgical specialist)  is the only thing that has given me relief, yes, I have had to have multiple surgeries but one surgery a year is nothing compared to the constant pain, horrible drugs, ER visits, etc.  

It is so important that you know your options, FIND A SPECIALIST, you have to be your own health advocate.  You might have a wonderful OBGYN but the reality is that he/she isn't a specialist, there are doctors out there who only treat women with endo, they are the pioneers in endo treatment and they are the best. You wouldn't let a general MD treat you if you had cancer would you? No, you go and find the doctor who is the best at treating the specific disease that you have.  They are out there. Start googling. Read everything, order all the endo books you can off of Amazon, go on the Endo diet (it helps SO much with the pain.)

Good luck! I know for me, at 24, a hysto isn't an option, there are other things you can do, it might take more time/effort but know your options.
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Avatar_f_tn
Just so you know, I fly from St. Louis to ATL to see my doctor. It might sound like a long trip, and expense, which it is. But, it is worth every single penny.  This is a disease we will be battling for the rest of our lives, it is awful and painful and scary and is the worst, you deserve to be in the hands of the best. I call my surgeons my angels, because that's what they are.  PLEASE, PLEASE look into EXCISION SURGERY.
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