I Have Stage 4 Endometriosis- Anyone Else?

Hi,

I have endo. I was wondering of anyone else on this site has it? I was wondering what you do for the pain? Are you able to exercise when it is really painful? I am not. I can exercise most of the month. Do you find that you feel better when you weigh less and exercise more? I do- sort of.

I was diagnosed 8 years ago. I have been in chronic pain since I was 19. I am 41 now. I have some pretty severe pain 3 weeks out of every month. I recently stopped taking pain meds b/c I know that you can not take meds forever. I am pretty much going the natural route now. I am very sensitive to any hormone therapy (migraines)- thus this is not an option for me. Not even bc pills.

 

Thanks in advance for the replies! :)

I had endo for years, and finally had a laparascopy and that did the trick.  What kind of doctor do you have that would allow you to suffer like that?  Has he even suggested a laparascopy?

Hi!

Thanks so much for the response!

I actually have tried just about everything.

I have had 2 lap surgeries. Having surgery is the only way to diagnose endo. The first surgeon stated that there was so much endo that she could not get it all w/ laser. I also had chocolate cysts on both ovaries which were removed. Having the lap did not decrease my pain at all. I was then placed on Lupron so that the endo would stop growing for awhile- but you can not be on Lupron for very long due to bone density loss. (Being placed in chemical menopause is no picnic). I tried bc pills. I just get too sick. I tried pain block procedures where they temp. damage nerves in the spine that wrap around to the pelvis. That did not work either. After that I took pills. NO MORE PILLS! :)

Then I had another lap surgery. I had chocolate cysts again. And they were removed again. I do not have as much endo- yet I still have all this pain.  That is the funny thing about endo- you can have a very minimal amount present and be in horrible pain. Some women find out that they have endo because of fertility issues and have almost no pain. It is a weird disease.

Bless your heart!  If they have exhausted all options...I hate to even say the word...but have you thought about a hysterectomy?  I have Ovarian Cyst Syndrome now and had suffered terribly until I started Depo shots.  I would have gladly removed my own ovary with a butter knife had the pain not stopped.  And what are chocolate cysts?  That is a new one to me!

Yes I have thought about it. I am a little afraid due to the migraine issue. I keep holding on b/c have have not been able to have children... it is a tough one...

Does this mean that you are producing cysts all the time?

It's gross - chocolate cysts are "blood-filled cysts" that are caused by endo. They do not go away by themselves and have to be removed. I believe the correct term is "endometrioma".

I was producing cysts, about every other month.  It totally incapacitated me.  I mean, down for the count, until they burst usually about a 3 day affair.  It was horrible.  I had a terrible doctor who told me he would not remove a healthy ovary and found one that would remove it...lo and behold, I ended up getting pregnant and it resolved itself during the pregnancy.  Then afterwards he put me on Depo and I have not had a problem since.  I was so miserable though when I did have them, that I would of removed both ovaries to get some relief.

So the endo has affected your fertility?  I feel for you and totally understand why a hysterectomy would not be an option.  I wish you the best of luck, and feel for you.

I was diagnosed with Stage 4 endo about 10 years ago.  Found it through a lap surgery because of infertility.  I had pain but mostly severe monthly cycles.  I had another lap surgery 2 years after the first one and attempted for another 2 years to get pregnant to no avail.  I now take Seasonale bc pills and the pain is manageable and I am the mother to the most beautiful angel who came to us through the miracle of adoption.

ITS NATIONAL ENDOMETRIOSIS AWARENESS MONTH! and ive found myself in many places to tell people about it that have a strong possibly of having it. im so glad to see this on here!

there is hope though girls. i was in soooo much pain for sooooo many years. i finally found the right dr that told me all the right things. he was a retired reproductive endocrinologist and now an obgyn. he was great. he gave me a lap 2 days after my first appt with him even though he was booked for months! i have endo as well as Pelvic Adhesive Disease/Disorder. they removed what they could and then put me on the depo shot. i strongly urge you girls to ASK ABOUT THE MIRENA. the depo is what put me on this site. it made me gain 30 pounds! then it stopped working gradually which was such a panick for me, then he told me about the mirena iud and we tried it. let me tell you, if you havent had kids before, its not the most pleasent experience. BUT its kinda just like a bad episode of endo at the same time. then your good to do.

With the Mirena i have had NO cramping. NONE. it will be 2 years in july. when i see those words written down..."NO PAIN"....it kind of shocks me still, but its true. please ask your dr's about it. i think it saved my life, i can be me again. no pain, no mood swings from the depo, no periods. 

Jetskimichele: i think it would work for you too. the reason migranes come on (sometimes) is because the b.c. is having to travel through your body. with the mirena there is a small amout of b.c. release into the uterus. SO your body doesnt have to deal with it, its like getting a local anestetic for sugery or getting a general one....please ask your dr about this. and please try to find a reproductive endocrinologist.

GOOD LUCK GIRLS! im so glad i found this forum.

<Yes it is Endo Awareness Month>

Wow- thanks for the replies... I am not doing too bad. I am working out and doing well. I will consider Mirena... not just yet. I know I am getting up there... but I really want to be a Mommy! If I can't then maybe we can adopt- then I will go on the Mirena.

So it sounds like most of you were able to find treatments (whether temp. or not) that works for the pain. That has been my challenge. I know that there are so many women like me.

I seem to be feeling better now that I am working out so much and my weight is dropping. There are about 4 days that you could not pay me to pick up a weight or do cardio. This has nothing to do with cramping.. It is the endo.

I am just happy that I have been able to work out as much as I do and am feeling better then when I was on pain pills. :)

congrats on not being in as much pain AND dropping 4 pounds!

ive never had kids and i hope to some day within the 5 years...but at the same time its a good idea to not be on anything if are wanting to have babies.

either way, im glad to hear you are feeling better. good luck with all.

Add me to the list.  Also add me to the Mirena IUS list!  Last year I had a lap surgery & a hyseroscopy.  The endo was covering my fallopian tubes, inside and out.  My surgeon cleaned them up as best as he could and put the Mirena in my uterus.  He informed me when I woke up that I pretty much can't have kids.  It felt weird to hear that but my husband and I already made the decision we didn't want kids.

The Mirena has seriously made life worth living again.  No painful periods, no cramping (my cramps were so bad I was taking Tramadol and didn't move for 3 days per month) I have occasional bleeding/spotting about twice a year and thats it.  I haven't gained any weight or had any side effects like some people have with the Mirena.

I hope you can find some relief, maybe asking your doctor about the Mirena.  Yoga has also helped me. 

I have tried to start loads of threads about Endo and none have taken off.  Actually, it's on behalf of my best friend. 

She has recently been diagnosed with Endo, 26 now she has been in constant pain since we were both 18.  She has had the Lapo but no success, still endo and still pain.  She has been on BC but makes no difference.  The Dr has now said that there is nothing more that they can do for her and the hospital have pretty much said the same.

She is taking Provera at the moment, waiting to see if anything happens after a course of that.

The strange thing that has the Drs puzzle is that she has no periods, zero, zilch since April 2007.  I'm going to copy some of your threads and send them over to her.

Any opinions please feel free to forward and I hope that you are all ok today. x

I know a ton (not everything) about endo. I have researched, I have been to 2 specialists. If anyone ever has any questions I would be happy to try to help. For some things there are no answers. There is no real cure. There is a ton of info on the net- some good - some not good. I try to stick to medical journals etc.

Some ladies are able to take bc pills all the time to stop the cycle for awhile. I tried but it did not work for me.

For me right now- I am just trying to be strong and I try not to think about the pain too much. I have noticed that the more I exercise- the better I feel. I still am pretty bad the week of my actual period. I usually do not want to move much. Exercise is out of the question.

I am so happy to be losing all of this weight that I have gained over the years. Thanks for the words of encouragement. Before all of the meds @ 35 I was 110-115 lbs. I am older now (42 in 8/08) and would be happy with 120 lbs for now with muscles. I am a curvy woman and even when I am tiny- am curvy. :) I am only 5' 2-1/2" tall. Don't forget the 1/2"... it used to be 3/4"- I blame the Lupron for that 1/4" shrinkage (bone density loss). :)

question for those who have it kind of okay:

Do you panick at the slightest sign of pain or cramping????? even if its nothing....possibly even gas! lol.

just figured id ask.......

To answer the question- yes I used to. I have been on vacation and part of the time I could not get out of bed! This has happened to me more times then I can remember.

Another time we were visiting my M-I-L before I was diagnosed. The morning that we were going to leave for home I could not get up. I took Advil and it did nothing. Eventually my hubby asked his Mom if she had anything else. She did and I was finally able to get up, out of bed and out the door. I still do not know what she gave me- probably percocet. It worked!

Now I worry a little and hope for the best. :)

Hope that helped...

ohhhh, the advil! that stuff never worked.

i STILL carry around an excessive about of pain pills! lol. i finally got to take the vioden out of my carry around pill box. its too funny that you mention it. its good to see other people that have been through the same thing. because other people just dont understand, or dont want to understand.

i just have ibuprophen now....but i think ill always have that. for just encase.

my panicks are fewer and far between, but i can never let myself thing im good to go because i feel like if i do that....then im taking it for granted that ive been doing okay. and i know that before ive been okay and then BOOM, that b/c stopped working and i was on the floor crying.

thanks for the reply. and thanks for starting this thread :)

So I've been irregular for most of my life and i've been on BC for almost 12 years now. I'm 24 and just engaged.  I went off the BC and you would have thought the world has come to an end.  So many strange strange things happening.  First had extreme abdominal pain upper pain and they thought I had a kidney infection.  Then my hair was growing like crazy. So they did more test, and ct and ultrasounds and my ovaries were enlarged. So they said okay you have PCOS. Since I have the classic big tummy and can't seem to loose any weight.  I have been pushed around my so many Dr's I so sick of it! This is my 4 th gyno I have been to and they all just say oh we will increase your BC. No your not listening! So after yesterday I was in so so so much pain, my friend referred me to someone and I called and said I had to be seen right then! Amazingly they got me in to see them in an hour.  They didn't do anything she said if your in this much pain and your having bowel problems you have endo. So after yesterday she scheduled me for a colonoscopy for tomorrow and then on Wed I have a surgical consult for Laproscopy. Which I am nervious.  I just can't do this anymore though. I miss days of work and I am so exhausted and then once a month I either have no period or I hemorrage.  I faintd and woke up in pool of blood and they thought it was my heart and blood pressure.  Sadly I don't have insurrance so.. i'm already so much in debt. But if the lap will help then thats what I need to do. I want to have children so badly!  This is breaking my heart.  However I am in so much pain I can't even be intimate with my finace. So its hard to get pregnant without that.  So this is my last straw.  I am wondering though if anyone can tell me if you think I do have endo. I dont' know if I could have it or not.  If anyone has had lap how it was or any suggestions. I work at a whole foods store and they tell me to take selenium and fish oil for the inflammation and pain. It helps.. but it doesn't fix the problem.  I work in the produce dept and if I do have lap I don't know how much I am going to need off to recover. I would love it if osmeone sent me a message and would talk with me. I feel so alone in this. 

Original Post by jessmy22:

ITS NATIONAL ENDOMETRIOSIS AWARENESS MONTH! and ive found myself in many places to tell people about it that have a strong possibly of having it. im so glad to see this on here!

there is hope though girls. i was in soooo much pain for sooooo many years. i finally found the right dr that told me all the right things. he was a retired reproductive endocrinologist and now an obgyn. he was great. he gave me a lap 2 days after my first appt with him even though he was booked for months! i have endo as well as Pelvic Adhesive Disease/Disorder. they removed what they could and then put me on the depo shot. i strongly urge you girls to ASK ABOUT THE MIRENA. the depo is what put me on this site. it made me gain 30 pounds! then it stopped working gradually which was such a panick for me, then he told me about the mirena iud and we tried it. let me tell you, if you havent had kids before, its not the most pleasent experience. BUT its kinda just like a bad episode of endo at the same time. then your good to do.

With the Mirena i have had NO cramping. NONE. it will be 2 years in july. when i see those words written down..."NO PAIN"....it kind of shocks me still, but its true. please ask your dr's about it. i think it saved my life, i can be me again. no pain, no mood swings from the depo, no periods. 

Jetskimichele: i think it would work for you too. the reason migranes come on (sometimes) is because the b.c. is having to travel through your body. with the mirena there is a small amout of b.c. release into the uterus. SO your body doesnt have to deal with it, its like getting a local anestetic for sugery or getting a general one....please ask your dr about this. and please try to find a reproductive endocrinologist.

GOOD LUCK GIRLS! im so glad i found this forum.

I've been on Depo for 2 years and I've been painfree.

I also have stage 4 endo and I have been battling it for 13 years.  I have had laser surgery 3 times and was always told that they cannot remove it from my bowels or bladder due to high risk.  I am on depo-provera which has stopped my periods for the last 4 years, which has been a great relief.  I do want to have a hysterectomy, but my Dr. did not want to do that 4 years ago, because it would put me into menopause and I would not be able to take hormone therapy meds because she states that it would make the endo spread even more.  However, the last 3 months I have been experiencing pelvic pain all over again.  I was searching on line and came up with a name of Dr. David Redwine from Oregon.  He has a ton of info on endo, he now specializes in it.  Please check him out, you may not be able to travel to see him, but he has a lot of info on line which I found very helpful that I can now speak to my own doc about it.

 

 

I have had stage 4 endometriosis since i was fifteen years old. For the last nine years I have been in constant pain, nothing helps. I have tried every drug, tried lapsroscopy three times, took hormone replacements, nothing has helped me. I am now 24 and infertile, they say my estrogen is too high and the blockers don't help. I found weighing less for me makes it worse. I have had my period every 2 weeks for 12 years and when on the bc pills i got it every week, so dont give up they will find some helpful way to help us with this pain eventually and remember noones case is the same we are all different with different body types