Can't take the pain anymore

[ALT76]

I feel like endo pain is taking over my life.  Before my first lap which was just before last Christmas, my main issue was excrutiating pain with my periods.  I knew when my period came to prepare and deal with it and was done.  Not too much to deal with between periods.  I'm approaching the 10 month mark since my surgery, and now I feel 10 times worse than before the surgery!  It seems that everyday I wake up in pain which seems to be getting worse and worse (today was out of control) until I go to the bathroom. Problem is, I'm in so much pain I can hardly get out of bed to get to the toilet, much less sit down and go.  It usually goes away shortly after that, but waking up to unbelievable amounts of pain that seem to be getting increasingly worse is not how I like to start my day!  

Then there's the day to day pain that comes and goes.  We are trying to fix up our house to get it on the market and we are in the final stretch, rushing to get things done.  Yesterday I spent about 5 1/2 hours landscaping and shoveling compost into raised beds, and had such a painful fullness in my belly the entire time.  I had to stop because I had a breakdown.  I think I was just tired (we stayed at the house all weekend and I stayed through yesterday), but also just frustrated.  It doesn't help that we moved into an apt and didn't leave any couches or anything soft to sit on there!  I really thought we'd be making another trip last night to the ER.  Fortunately I brought some Tylenol w/codeine and took a couple and laid down and it subsided to a more tolerable level.

Right now I'm in a good phase too!  A lot of times I'm on ordered bedrest for cysts or this and that, so I was trying to get done all the stuff I haven't been able to do.  Stuff that 2 years ago would've been no problem.  Now I feel like I'm so physically limited by my pain and it's really depressing.  I'm also angry that my surgery's affects not only didn't last (they've been trying to get me to have another lap for at least 3 months now) - but now I'm 10x worse!  I think my scar tissue inside just went to town multiplying!  

I've taken a break trying to conceive, and tried going on the pill this cycle, but stopped after 7 days because it gave me headaches.  I'm waiting for my next cycle to try another pill, but my doc claims that I was at the lowest dose for the other reason I was on it - which is to prevent cysts.  He says anything else would be stronger and have more side effects.  I'm going to force him to put me on Ortho TriCyclen, which I was on 7 years ago and fine on.  He doesn't think it will be enough to prevent cysts, but I'd like to give it a try.  I'm hoping the pill will help a little, but I can't see how it's gonna stop the existing pain.  It should technically only stop new stuff from forming.  

I'm trying to find a job and this is really impacting my decision.  Daily pain, future surgery....  I just don't know what to do.  I'm so tired of being in pain and SOOO done with this ****! :o(

[PPhelps]

I would like to mention that the body rolling does work. My friend Mary and I have been telling people on these forums for years now. She has made a health page on it from the Ovarian Cancer forum if you'd like to read it.

[Bats102]

also, i really cannot bring myself to believe that laparoscopys are beneficial to this disease...i had mine done and everything was so severe, she couldnt burn anything away because everything was webbed closely to someothing else, like major blood vessels and such....so all this surgery did was give me more scar tissue...and unless you have large cysts, i really would double think going in for this surgery...it may help initially, but it agravated the disease and causes even more scar tissue and adhesions, most often leaving you worse off than before..

but, thats just my two cents on THAT issue...

[Bats102]

There are some great ways to manage this disease...I have done quite a bit of research as i am only 22 and was diagnosed about 6 months ago, and it was found in the most advanced stage already, everything has already cemented itself together/to other organs, even my abdominal wall is now attached to everything else.

I have two books which have proved very helpful. they are;

"Endometriosis: a key to healing through nutrition" by Dian Shepperson Mills, M.A.,


"Women's Bodies, Women's Wisdom" by Christiane Northrup, M.D

both supply a wealth of ways to control this disease and its effects on the body, many of which can be done with vitamin and mineral support....One main thing to stay away from (which I have had a hard time following, note age) is alcohol....alcohol enters the body and immediately turns to fat, and fat produces more estrogen, thus, drinking increases estrogen. in turn, you also suffer more inflammation after drinking. Estrogen is also believed to be a culprit in severe symptoms of this disease, as most cases are women who have higher levels of estrogen...so, stay away from alcohol if possible.

Also, this disease tends to cause inflammation on a cellular level, and dairy products increase inflammation, so should also be avoided if possible..these are the two things that I find plausible and achievable to quit consuming...the full list of no no food is: Alcohol, dairy, sugar, wheat, gluten, any meat other than fish, fermented products, processed food, and additives....as you can see, this would leave you with nothing but vegetables and water...not a very appealing diet...so like I said, I honestly think that if you cut out alcohol and all dairy (doesnt matter if its non fat or low fat, still does the same thing to your body) you will experience a bit of relief...i am on the pill, and before this, my pain was horrible, it only came during my period, but when it was there it was bad...even passing bowels hurt like a mother f*er...i literally have no pain anymore...and i wont lie to you, I have strayed quite often from the dietary guidelines...but, i do take a multivitamin, flaxseed oil, and acidopholus everyday, and i think this all helps.

Also, there is an aggressive excercise I have been doing which really seems to help as well...I heard about it from another woman on here. It is very painful at first, because what its doing is physically/literally tearing apart your adhesions...But I figured that since all my organs and everything are fused together, this certainly couldnt hurt to try...my doctor oked it and said it wouldnt harm my body...even if I would happen to have a chocolate cyst, she said it wouldnt be able to reach deep enough to rupture it...So, here is the excercise.
You go out and buy a kickball or rubber playground ball from the store, about the size of a soccer ball but has more give. or, you can go directly to this site to buy one (i suggest starting with the softest one, I believe its the green one?)

www.yamunabodyrolling.com

what you do is you lay down on top of this ball, it should be centered right above your pelvic bone...then with the ball supporting as much of your weight as you can give it somewhat comfortably, roll left and right, up and down, and way you like...you will feel it working, and yes, it is going to hurt...after each time you should be able to put a bit more weight on the ball as your adhesions start to break apart...you can literally feel the blood rushing to this area though, I do it and i will start to feel my ovaries beating like my heart..I consider it to mean its working...I have done this several times and some of the pain I had is gone and im literally pain free, in combo with the pill and dietary modifications....When I would sneeze, i would get a sudden sharp pain in my abdomen, and since starting this, that has gone away...so, I really do think this helps.

Im sure you know this, but the reason we have pain from this disease is because our reproductive organs are trying to move around, and since they are attached via enometrial tissue and adhesions, they are unable to move where they want to..so while your organs are attempting to move away from each other and correct themselves, you are in horrible agonizing pain..so, this is why I think the rolfing works so well, as well as the pill, constant use of the pill prevents ovulation which in turn prevents your organs from trying to move anywhere, because they are now dormant..

Lastly, if none of these ideas trip your trigger, Aleve always worked well for me, taking 2 as the initial dose and every 6 hours, I think mostly because it has anti inflammatory agents in it, and when this disease is active/painful is when all the tissue is inflamed...if you like, you could probably get on a daily regimen of one aleve every 6 hours, so you are taking 3 a day to keep inflammation and pain at bay

Goodness this was a lot of info :P , hope it helped

but please check out the books and that website...I really think you will find that these things all add up, and can really help with your quality of life :)

[ALT76]

thanks angela!

I'm going tomorrow to get an ultrasound and for a consultation appt.  Fri and Sat I could barely walk or sit down, but today it was a little better.  I think I may have another cyst, which is a whole other issue.  I actually WANT it to be a cyst, cuz then I know there was a reason for my pain other than this endo BS!  But Friday I broke down and convinced my husband that if the dr. could fit me in soon, I'm having another lap ASAP.  I will definitely look into marvelon21 - thanks!

[ticked]

Man am I reading my story or what??? I was diagnosed with stage 4 endo last year, I was covered all over, i was on acid medication for six months prior but after my surgery a year later all the symptoms are back, i hvae pressure on my left lung and the only thing that i think this surgery did was release the pain in my rectum by removing a large recto vaginal nodule so i am able to have a bm with less pain. I am on marvelon21 which i recommend.  I was prone to getting major migraines before but havent had one since.  I am back to my doctor Oct 29th demanding another surgery next jan. I cant live like this anymore its killing me.  I am going to tell you one thing, the best thing in my opinion after tons of research is to just keep having the surgeries to remove the adhesions. I can feel them all the way up to ribs again.  A hysterectomy is an option but it might not help, meds only mask the problem there is no real solution and it *****.  When they put you on the pill did they tell you to take it continuosly?  I take mine everyday no break and i havent had a period in over 5 months. That helps alot. I still have pains but not as bad as once was. I am going to agree that in some ways i wish that i never had the surgery because i feel worse than i did before.  I am here for you if you need someone to talk to..

angela