Help for pain

[Cherrytree124]

What do you guys do for endo pain when it's so bad not even medcine is  not helping? I have tried hot baths heating pads hot tea and nothing helps.. Need relief:(

[Cherrytree124]

Hi I did have a lapscopy surgery in October 2013 I guess on my medical records said it was inflamed.. My gyno  didn't want to touch the endo  on my Bowles so that's why I found this new doctor. I'll ask the new doc about being on hormones I do bleed a lot. Thanks for the heads up.

[lulu747]

Yes it is pretty standard to take a progesterone based hormone to stop your monthly bleeding prior to surgery.  Why do they want to remove your appendix?  Did it show as inflamed on an xray?  This just seems weird to me as endo can very rarely be diagnosed through anything but a lap.  I was literally infested with it and all that showed on ultrasounds, cts, xrays was 'inflammation'.  I guess they see a mass or something?  It's hard to know.  What was their explanation for removing the appendix?  Anyways, you don't need your appendix for anything and it's the easiest surgery in the world.  The excision of the endo is much trickier- my last surgery was 6 hours long.  But like I said, I was a worst case scenario.  Whatever it is, just try not to worry yourself into a knot.  (I know, easier said than done)  As long as you have a reputable surgeon and take good care of yourself (please call your gyno and talk about the hormone)  Stopping the bleeding does alleviate a great deal of a certain kind of endo pain.  And if you bleed super heavy like me, you will feel stronger going into surgery and they will have better vision.
Don't worry.  You've got this.
Lu

[Cherrytree124]

Hi lulu no I'm not on any hormones at all. When you mean to stop the bleeding are you talking about the from my monthly? Sorry I'm new to this...  He is a very good surgeon he is in Atalanta Georgia. Dr. Sinervo. I'm not sure when they want to do the surgery waiting for the surgery department to call and make all the details. He did say he might have to remove my appendix. I'm nervous it's a big surgery and 3 to 5 days in the hospital. But I'm so ready to feel better. Thank you for answering my questions

[lulu747]

So just to be clear- make sure you get on a progesterone only based hormone to stop the bleeding prior to surgery.  Make sure (pm ticked) that the surgeon is an endo specialist with a good track record.
That's great news that you are a candidate.
I am pulling for you (:
Lu

[lulu747]

Yes!
I have had surgeries on my bowel and my appendix removed.  They did this before they diagnosed me with endo and thought I had appendicitis.  When I had my last total surgery I was in the hospital for a week, under medical watch for another week, and then it was about 8 weeks of recovery time (pretty much total bed rest)  Is this a reputable endo surgeon?  It is crucial because they need to excise ALL of it.  Are you on hormones to stop the bleeding?  The first surgery I had was unsuccessful because I hadn't stopped my period for a few months prior and I was hemmhoraging too much so there was no visibility.
When do they want to do the surgery?

[Cherrytree124]

Hi lulu it's me again the doc called and he said I am a candidate. For surgery he believes it's on my bowels and appendix  have you had any surgeries on your bowels if so can you please give me some insight or advice or what to expect? Thank you
Cherrytree

[Cherrytree124]

Thank you for all your help.  Hope we both get our babies soon.;)

[lulu747]

Ack the insurance thing.  I feel so bad for you Americans.  But at the same time if you have the right insurance you get help ASAP whereas we have to wait in line for our free health care.  Ticked talked about crowdfunding.  If you set up an account with Indiegogo or some other and ask for money from your friends, family, community- everyone can pitch in and maybe you could better afford a proper surgeon.  I really don't think there is anything that can help this disease better than the right surgeon who is well versed in endo.  I was completely bedridden and living on huge amounts of opiates prior to finding my surgeon. I did not get out of bed for 6 years and was unable to work, or enjoy any kind of quality of life. She did complete reconstructive surgery and excised ALL the endo that was on my bowel, bladder, cervix, ovaries, and uterus.  She then stitched up my ovaries under my belly button for several weeks while i healed so that no scar tissue would form.  Then she told me to get pregnant asap.  The problem was I was going through a divorce from an abusive marriage at the time and so getting pg was not an option.  I did enjoy 3.5 years of significant pain reduction (no meds whatsoever) and very little symptoms.  I developed a flare six months ago.  It has been getting worse rapidly.  I am now in a happy, healthy relationship and would very much like to be pregnant.  I am hoping that my upcoming surgery will excise the endo that has returned and I will conceive.  I am fortunate in that I have many eggs, my FSH and LH are very high so I am fertile....Just having mechanical difficulties.  We were trying for a few months before I realized that I was having a flare up.  I have great faith in my surgeon and that makes all the difference in the world.  I owe my life to her in many ways.  I really encourage you to try every available avenue to you and not accept anything but the best treatment.  Nothing is more important than your health and well-being.  Having lost 6 years of my life to pain and illness and fighting like he*& to get it back, I believe this more than anything.
Wishing you the best of luck and some relief and peace....
Lu

[Cherrytree124]

Hi lulu.  I just sent my records to the CEC in Atlanta Georgia. The problem is right now I don't have insurance... So I'm hoping it won't be to expensive. I have 3 kids we are trying for a fourth but it's been 6 months and no luck yet. It helps to know I'm not alone but stinks there is endo.. I'm glad I found this website ticked showed me the link to the CEC. So I'm a little hopeful. This endo does still joy but I have to be strong for my family and kids

[lulu747]

Hey Cherry-

I feel for you and I am the same.  I take Tylenol 1 with codeine and caffeine during the day (every 4 hours) because I cannot take anti-inflammatories due to my Crohn's disease.  I take 4 mg of dilaudid at night and another in the middle of the night.  This is not great pain control but I get by.  I also take Gravol every 4 hours for nausea when my pain is the worst.  The best way to get rid of pain is to have a decent surgeon excise (remove) the endo.  It has to be a good surgeon and it has to be thorough.  I had 3 surgeries before I found relief and was free of pain for nearly 4 years before this recent flare.  I am awaiting surgery and hope to get pregnant immediately afterwards as this is the only true relief from endo pain.  If you can tolerate the NSAIDS take them BEFORE the pain gets bad.  Take the narcotic at night when you no longer have to be 'on' to get some rest and relief.  This is the best I can tell you.  It is a long road but if you find the right surgeon you will have more permanent relief.  You gotta be a strong advocate for yourself and not stop until you get proper relief.  You deserve it.  This disease can rob the joy from your life.  I am here with you in solidarity.
Lu

[Cherrytree124]

Hi and thank you for your response. My pain is constant when it's that time of month otherwise it goes off and and on but lately I have been nausea all the time. I have been taking 800 mil of mortin  every 6 hours not sure if I take it with hydrocodne??   I don't like taking heavy medicine because I have kids and babysit during the day and they make me feel woozy.. And sometimes I take Advil or Tylenol. I also take zofran for nausea but that gives me horrible headaches. I have surgery in October 2013 to remove a chocolate cyst and that's when they found the endo to tell you the truth I feel worse after the surgery:( I guess it's a journey with a long road:(.

[lulu747]

Hey Sweetie I wish I had an answer for this but I don't.  Proper pain management is important as in taking pain meds before the pain is out of control.  If you wait until your at a 8/10 or 9/10 it won't work.  Do you have constant pain or cyclic pain?  Have you seen a surgeon yet? The best combo is an anti inflammatory and a narcotic.  I can't take anti inflammatory's and am scared of taking narcotics as I was so dependent on them for many years prior to surgery so honestly, I suffer a lot.  It *****.  There is no real option for chronic pain.  What meds are you taking?
Wishing you relief
Lu