Endo, and my choices to stop my period, docs aren't helping me, maybe you can

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Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/6/2010 3:14 PM (GMT -7)   
I just got back from the doctors, after having to been hospitalized 2 times in 1 week from starting my period. I can't do b-control cause I suffer from migraines (the seeing spots kind)
They gave me 1 options (The fiancé is too buys to go through this me today, I need to figure it out in order to sleep tonight lol)
1: Menera IUD
2: Lipron

Problem wth #1 is when I got off of a depro, I saw a specialist, and suggested with the crohn's I don't get one, since it causes a lot of cramps.

Problem with # 2 I'll be in menopause at 25!!!!!! And the mood swings, hope the Fi can handle that lol

help!!
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 1/6/2010 4:38 PM (GMT -7)   
This is my 2nd time with Mirena and I am loving it! I don't cramp at all from it and gives me hardly any side effects. Although everyone is different. My GI even thinks it's a much better option than anything else. If you haven't had a baby yet then getting it in hurts like heck (at least it did for me) but then the 2nd time after 2 kids, didn't feel a thing. Good luck! I hope you feel better, periods suck...
Diagnosed with UC in February 2009.
Diagnosed with Crohn's Colitis December 2009.
Flaring since October 2008

Medication: tapering off Prednisone (5mg), Pentasa 6x daily, Imuran 100 mg, hydrocortisone enema nightly, multivitamin. Probiotics through yogurt.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/6/2010 4:45 PM (GMT -7)   
I've never had a child, so I am not sure I am up to that sort of pain. But I guess it's better then my periods.
I'm scard of the side effects of lapron tho.
thanks so much for advise.
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 1/6/2010 5:10 PM (GMT -7)   
Do a lot of research before you even consider Lupron. Menopause could be the least of your problems. Lupron can cause tooth loss, loss of bone density, stroke, or even leave you with chronic pain or other symptoms that don't go away when you stop the meds. Lupron was designed as a chemo type drug for men with prostate cancer. Google Lupron

It is only recommended that you take it for 6 months over a lifetime but some docs will give it to you longer. It doesn't "dry up" endo so symptoms usually come back after a while. It does help some women but it also hurts many women and there is no way to tell which side you'll be on. With your history of migraines, you wouldn't be able to take the add-back hormones that are usually given if the menopause symptoms are really bad or if you take Lupron for a long time.

Surgical removal of the endometriosis by a real specialist would be your best option. A knowledgeable specialist will be able to remove all of your endo and not have to rely on drugs to control what they leave behind. I don't know of any specialists in Canada but if you go to the Endometiosis Research Center's website, they may be able to help you.

My doc does not offer Lupron to his endo patients anymore, opting for surgery instead. He says that, for most women, Lupron caused as many problems as it fixed.

Do research and try to get a second opinion before you choose any treatments. Pain can make us desperate causing us to choose options and take risks we would never recommend to our friends.

Good luck, I hope you find someone that can help you with your endo soon.

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/6/2010 5:15 PM (GMT -7)   
Thank you so much!!!
It's true, I am so tired of the pain, and i am getting married in 3 months in the south, and it so happens the day of my wedding I am due to start my period, I am really hoping to get this sorted by then, I guess I am jumping to the easiest solution, but there are none.

My doc doesn't recommend surgery.. maybe it's time for a second opinion.. as he said it'll just come back especially since I wont able able to take b-control.. .I've been sitting her for 4 hours reading up on Lupron, and #1 thing says not to take if you suffer from migraines!!!

It looks like I'll be doing the IUD..

How long after it's inserted will my period stop?
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 1/6/2010 6:20 PM (GMT -7)   
Lupron sounds scary!

the first time I had Mirena I spotted for about 3 months (very light, didn't need a pad) then I had nothing till it was removed. This time I spotted for about a week and haven't had a period since, course I was also breastfeeding so that might have contributed to it.
Diagnosed with UC in February 2009.
Diagnosed with Crohn's Colitis December 2009.
Flaring since October 2008

Medication: tapering off Prednisone (5mg), Pentasa 6x daily, Imuran 100 mg, hydrocortisone enema nightly, multivitamin. Probiotics through yogurt.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 1/6/2010 6:25 PM (GMT -7)   
Just to clarify why can't you do depo? Is it the migraines and have tried treating those?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/6/2010 6:27 PM (GMT -7)   
I was dx with endometriosis at 18. I am now 31. I have had 2 endoscopies for this with all organs intact. I had also been on lupron. Not to bad but the hot flashes and mood swings were not fun. There are ways of dealing with them though.

I suffered with lots of pain and heavy periods for many years, most of my docs would only recommend a partial or full hysto. I have always refused. about 2-3 years ago (memories foggy) I saw a dr. at University of Michigan and they put me on a dose of Femara daily. I had not been off of pain killers since I was in my mid teens, untill I was a couple months into my femara treatment. I took femara for a little over a year and I have been off of ALL pain meds for that. I am how ever able to take continuos bc, but I have been doing that since I was 15. (Sex is much better too and not nearly as painful, it keeps getting better, i now can understand why people actually like sex!)

I hope some of this helps, please let me know if you need more help, although I feel lost with my crohn's dx I am very familure with endo!
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentassa, Entocort, B inj


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/6/2010 6:35 PM (GMT -7)   
MMMNAVY said...
Just to clarify why can't you do depo? Is it the migraines and have tried treating those?


I did the depro for 5 years already, I was very depressed on it, and I definitely found a different in my flare ups when I got off of it (less of).. and they don't suggest doing depro for more then 5 years, just like the IUD.

Yes, I've tried treating the migraines, nothing seems to work(I've suffered from then since I was 6).. 3 asprine with condine seems to be the only trick.. and I don't do that often for the crohn's.

I am wondering what the side effect would be if I did take a birth control... back when I was a teenager they said if I was to take a b-control pill and suffer from migraines it could prevent me from having a child when I am ready... I am assuming this is still the case since no doctor will give me a b-control.

I am so frustrated I am considering forgetting having a baby and just do the best thing to stop the periods. I am sure I'll regret that in a few years.
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/6/2010 6:39 PM (GMT -7)   
jesse's_girl said...
I was dx with endometriosis at 18. I am now 31. I have had 2 endoscopies for this with all organs intact. I had also been on lupron. Not to bad but the hot flashes and mood swings were not fun. There are ways of dealing with them though.

I suffered with lots of pain and heavy periods for many years, most of my docs would only recommend a partial or full hysto. I have always refused. about 2-3 years ago (memories foggy) I saw a dr. at University of Michigan and they put me on a dose of Femara daily. I had not been off of pain killers since I was in my mid teens, untill I was a couple months into my femara treatment. I took femara for a little over a year and I have been off of ALL pain meds for that. I am how ever able to take continuos bc, but I have been doing that since I was 15. (Sex is much better too and not nearly as painful, it keeps getting better, i now can understand why people actually like sex!)

I hope some of this helps, please let me know if you need more help, although I feel lost with my crohn's dx I am very familure with endo!


I first have to comment on your user name.. I love it!!! lol

Thank you so much for your post, I am going to go do research on Femara now. My only concern is I am getting married in exactly 3 month 3 days, and I am worried of spoting for the next 3-4 months.. but I guess it'd better then worrying if that period is the period that sends me to the hospital in need of morphine.

I may take you up on your offer for more info, and I appreciate that so much!!!

What are you doing for your crohn's currently? I am more familure with CD, maybe we can be of help to each other ;)
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/6/2010 6:42 PM (GMT -7)   
Tracy....please look into femara... I also still wish to have children so I believe that we share some of the same concerns. I don't know how much research has been done since I was on it but there was not much then, I only found one small study of about 20 women and it helped most of them with no side effects. (I was willing to try just about anything) I am a testament to it working!
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentassa, Entocort, B inj


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/6/2010 6:46 PM (GMT -7)   
I am on pentassa and entocort, b12 and vits....I am unsure about diet and have had a few bouts of spontainious bms. (so embar_assed)...I just don't understand. food intake is so confussing! any advice you have I will be gratefull for! (sorry my spelling sucks...lol)
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentassa, Entocort, B inj


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/6/2010 6:48 PM (GMT -7)   
I am on pentassa and entocort, b12 and vits....I am unsure about diet and have had a few bouts of spontainious bms. (so embar_assed)...I just don't understand. food intake is so confussing! any advice you have I will be gratefull for! (sorry my spelling sucks...lol)
P.S. it may not be obvious but Jesse is my guy and we have been together for ten years...thats our song too....i know we are a white mild cheddar cheesey crazy, but you have to have fun too!
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentassa, Entocort, B inj


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/6/2010 6:50 PM (GMT -7)   
sgirl said...
Lupron sounds scary!

the first time I had Mirena I spotted for about 3 months (very light, didn't need a pad) then I had nothing till it was removed. This time I spotted for about a week and haven't had a period since, course I was also breastfeeding so that might have contributed to it.


Was the spotting painful, like your periods?

Did you try birth control pill before doing the Merena? Did it not do the job?
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/6/2010 6:57 PM (GMT -7)   
yes diet is the tricky thing, what may work for me, may not work for you.

The safe foods for me while I am that situation is... mash patato, chicken breast with no skin, plain!! carrots (better cooked,easy to go down) I find when I am at that point, red meats are hard to go down as well, if you like fish, do that.. plain.
snacks: pop corn (no butter) I've never had a problem with regual patato chips (just not that healthy lol) I am not sure if your ok with milk, I know when I am like that I am not, so I do plain cerel (I know, not that fun.. so I do frost flakes make it a little fun lol)

How long have you been dx with crohn's? has your doctor suggest any type meds like remicade or humira?

I love the cheesy kinda of stuff. 10 years wow congrates!!!! I heard the hardest year is the 7th lol.
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 1/6/2010 6:59 PM (GMT -7)   
I have been on depo for over 15 years now. But the issue is that you do need to have your bone density checked more often. I do not use it for birth control. So I only take it about twice a year to stop the bleeding.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/6/2010 7:20 PM (GMT -7)   
What have you been experiening with your periods? Pain even when no period? During sex? Let me know what I can help you with.
I am so glad that you said popcorn...I have been worried since i read a page about not eating it, but sometimes i just need to have it. I have never had problems that i could contribute to it so I guess that is fine.
doc has not recomended anything other than what I am on. I have only been dx with CD for a little over a year, before that they told me IBS but all the meds for that made me WAY worse. (including Immodium!) I still have to look into what those other meds do...
I have just found out the wonderfull truth about b12! I was taking oral B and B12 but i was not getting it into my system, but oh the surge of energy, I have not had that much energy since I was 21...out all night...up all day...now though i can actually clean my house with out taking a nap.
my symptoms have been better since i started the entocort (one major issue last night but that was it in 6 wks) but since I started the B12 and the entocort I have had upper back and knee pain and "creepy-leg" on occasion mostly at night. other page says it is the pentasa not the other two.
Dr usually only sees me 6 months...is that two long between apt or do the meds really take that long to see if they are effective for you?
Na...the hardest year was the first...after that no returns you broke em' you bought em'... :)
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentassa, Entocort, B inj


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/6/2010 8:21 PM (GMT -7)   
MMMNAVY said...
I have been on depo for over 15 years now. But the issue is that you do need to have your bone density checked more often. I do not use it for birth control. So I only take it about twice a year to stop the bleeding.


really!!!!! Since I wont be using any of this for birth control, maybe I can do the same.. and maybe since I've already been on it, the spotting wont be so bad this time around.
The CD doc also suggested giving me a very small dose of anti-despression to interact with the mild despression I got on the depro.
I am starting to see a light at the end of the tunnel maybe!!!
I go see my CD Monday, I'll probaby just get the RX for that and discuss doing it 2 times a year as suppose to 4.
And I can start it next when when I start my bloody (litterly) period lol (which I have been scared, little stressed)

What are the steps in checking for bone density? does it hurt a lot? could it be really worse then our periods!

Sorry Jesse's girl, the FI just got home and has to go on the pc for work, so I am being kicked off, I'll reply back to your post tomorrow.. sorry again :(
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/7/2010 1:38 PM (GMT -7)   
jesse's_girl said...
What have you been experiening with your periods? Pain even when no period? During sex? Let me know what I can help you with.
I am so glad that you said popcorn...I have been worried since i read a page about not eating it, but sometimes i just need to have it. I have never had problems that i could contribute to it so I guess that is fine.
doc has not recomended anything other than what I am on. I have only been dx with CD for a little over a year, before that they told me IBS but all the meds for that made me WAY worse. (including Immodium!) I still have to look into what those other meds do...
I have just found out the wonderfull truth about b12! I was taking oral B and B12 but i was not getting it into my system, but oh the surge of energy, I have not had that much energy since I was 21...out all night...up all day...now though i can actually clean my house with out taking a nap.
my symptoms have been better since i started the entocort (one major issue last night but that was it in 6 wks) but since I started the B12 and the entocort I have had upper back and knee pain and "creepy-leg" on occasion mostly at night. other page says it is the pentasa not the other two.
Dr usually only sees me 6 months...is that two long between apt or do the meds really take that long to see if they are effective for you?
Na...the hardest year was the first...after that no returns you broke em' you bought em'... :)


What I experience when I start my period: First I get the normal crapping in the lower stomach area, about 30 mins later I get the nausea feeling. I then have D ,about 5 mins later I start with the throwing up,which will last until I go to the hospital to get morphine, I've tried not going to the hospital when I am in that state, but then it goes on for24 hours
This is why me and the doctors always believed it was the crohn's.. it's all the same symptoms. Back in Sept the doc did a full scope and realized my crohn's has gone into remission.. .and every time I do go into the hospital when I get my period, the blood test results come back saying there was no flare. I don't end up in the hospital every month. Some months I can get by, by popping a gravel and morphine pill (if I can get it in time,if not my stomach can handle even water) so clearly this has to do with just my period, and nothing to do with crohn's..

I am glad the b12 is working for you. I know that feeling of cleaning the house for 30 mins and then needing a nap.. I was like that as well. I must admit the humira has given me my life back, minus the periods lol.
You still have some other options before having to take such a huge med like remicade or humira.
Maybe you can ask your doctor about Imuran, I found this to help a big deal with the flares.. especially the night flares.

I did the research on Femara, but it seems to be a lot like Lupron,or is that just me? mostly the side effects seem to be similar
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


sgirl
Regular Member


Date Joined Jul 2009
Total Posts : 417
   Posted 1/7/2010 5:32 PM (GMT -7)   
my spotting never hurt, never even cramped during them.

I had been on Yaz for over a year before I got the mirena. The mirena was more cost effective for us. I only paid my copay (15) for it, wheras with bc it was 30 every month.
Diagnosed with UC in February 2009.
Diagnosed with Crohn's Colitis December 2009.
Flaring since October 2008

Medication: tapering off Prednisone (5mg), Pentasa 6x daily, Imuran 100 mg, hydrocortisone enema nightly, multivitamin. Probiotics through yogurt.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/7/2010 5:47 PM (GMT -7)   
Thank you!!!!
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 1/7/2010 5:54 PM (GMT -7)   
I take a pill called Cerazette it does not have estrogen witch causes most of the side affects many birth control pills have.
I have been taking it since august 2007 and I have had no period since October 2007 and I men nothing at all no spots or anything it is fantastic.

http://en.wikipedia.org/wiki/Progestogen_only_pill

If you have not already tried it I would..

I have endo and I get BAD pain when I have my period so this pill is saving me from having to take your option nr 2

Good luck hope you feel better
25 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009

Medication - Asacol, Pariet, Cipralex and Cerazette.
Past medication Remicade
My wonderful dogs :) ~ www.poodle.is ~


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/7/2010 6:16 PM (GMT -7)   
Thank you soo much!! I will look it up and ask my CD doctor on monday if this could be an option for me.
Again I can't thank you enough for your post!!
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.


jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 1/7/2010 6:28 PM (GMT -7)   
I am no expert, but I know what worked for me! I experienced no side effects from the femara. At the time I was taking it i felt it was a last ditch effort before having sx again. The first time that I had sx they found the webbing and the windows and put me at stage 2-3 endo. The second sx 4-5 years later they only found a few windows and no other signs but the pain again went away for a few years. Eventually I was having pain even when I was not having a period, so almost everyday. I work in a medical setting where I am responsible for the care of other people and I could not in good concious work with patients while on pain meds so I would deal with it untill I punched out and the would take the pain meds and drive 2 hrs home. (not a good situation) Having another sx was more scary to me then trying a med that seemed to be a shot in the dark...i did not expect it to work but I had already been on the lupron after my 1st sx, and it did not seem to have much benefit for me. the continuos bc was already in my regiment and the drs were talking partial if not full hysto. I was very against waking up with no hope of natural motherhood. I have always been very strong on this point. The femara was very expensive and I had to get finacial assistance from the drug company in order to stay on it, but once I was on one pill every morning for a couple of monthsand then one pill every other day for the duration of the time I was on it. I truely feel that femara is the reason that I have been pain free for so long. One theory that was explained to me was that I had endo on a cellular level and that they just did not see as much of it during the sx's. I would definatly take femara again before I even considered lupron, the question is very black and white for me. Although keep in mind that every one responds to meds differently and you have other issues to consider. Let me know if I can help with anything.
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentassa, Entocort, B inj


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 1/7/2010 6:37 PM (GMT -7)   
Thank you, I will take all this info to my visit with the doc on Monday and see what she suggestions. Thank you so much for taking your time out and explaing this to me. Much appreciation.
I am so glad you were able to get your life back, makes me feel like there is hope out there. Thank you again
Tracy from Montreal,Diagnosed with CD at age 18 but went undiagnosed for 10 years. 17 years with CD, Remicade for 1 year 4 months. Caused remi induced RA, crippled for 8 months
on humira, working for RA but CD is getting worse everyday,been on humira only 4 weeks
Pantasa 8 tabs a day
Provacede 1 daily for the ulcer's
Imuran 1 and half tabs (50mg)
Previous meds: Pantoloc, Predizone, tapered down from 10 pills 8 different times.(horrible side effects),Lots more,list is way to long.
Unable to work last 2 years and counting.Scope says I'm clear of CD,waiting for biopsie. May have Endometrioses, again waiting for another apt.

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