What do you all do for pain?
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Laura_beau
Posts: 1,029 Member
Hey Ladies
What do you do to manage your endo pain?
I recently had my lap to remove my endo, but less than 2 months later the pain is creeping back.....
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I use a mixture of pain meds (Naproxen, Co-Codamol) and heat therapy (Hot baths, mini electric blanket for stomach).
Any tips?
What do you do to manage your endo pain?
I recently had my lap to remove my endo, but less than 2 months later the pain is creeping back.....
(I use a mixture of pain meds (Naproxen, Co-Codamol) and heat therapy (Hot baths, mini electric blanket for stomach).
Any tips?
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Replies
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I am so sorry your pain is coming back. If at all possible I would urge you to have more surgery to remove absolutely every implant. Make the surgeon do scalpel removal, not burning. If you want I can give you my surgeons name. She is one of the premier Endometriosis Surgeons in the world. She saved my life. She has made the study of surgery to CURE endometriosis her life's work. I know you couldn't travel here for surgery but maybe your doctor could do a phone consult with her.
As far as medication goes I have tried every pain medicine known to human kind. Every kind. I am a nurse with my Master's degree so I know what to ask for and how to take it. The ONLY medication I know that worked for me was high dose ibuprofen. And it sounds like you are taking that already. It is tough on your kidneys (renal toxic) so you have to drink LOTS of water. I would take 600-800mg every four hours. Thankfully I did not go into renal failure taking these high doses. I had no choice the pain was off the scale.
Endometriosis is just punishing and terrible. There are no words to describe how disabling and painful it can be. I am so sorry you have this. There is hope. I was like you. And now I am 90% pain free. There is hope.0 -
Oh also, castor oil heat compresses have helped a few women in my support group. Also, deep abdominal massage has helped a few of these women. Neither helped me. But thought I'd I'd throw it out there.
Also limit processed carbs. I felt sooo much better when I didn't eat junk food. I think the micro inflammation that happens with the ingestion of wheat, processed carbs exacerbates the endo implants.
Do you still have your uterus and both ovaries?
I have a friend in my endo support group who has endo on her heart. It is a crazy disease.0 -
Okay, one more thing. I know we grasp at straws just to possibly find a little bit of relief. Some endo people I know swear by taking a tablespoon of Dr. Braggs Apple Cider Vinegar every morning. Some put it in their tea and sip it all day. It has to be that brand. It is the purest form with the mother. It tastes terrible but a chaser of water helps. I would say try this, it can't hurt.
Look it up online you will see many reports of it's health benefits. You can order this brand from Amazon. They ship all over the world.
Hope I have been helpful. Or at least letting you know I can empathize with your suffering. You are not alone.0 -
Thanks for your advice)
I will ask to be referred to a specialist in endo excision for my next op. There is an excellent endo specialist called Chris Mann in the UK who is world renowned for his expertise/research/treatment so if it gets too bad I'll go straight to him.
I knew diathermy/laser may not be as effective but as it was my first lap I thought it would be fine. The issue is that laser just burns off the surface cells, and the cells below just grow straight back(
I still have my uterus & ovaries- which (fingers crossed) are in a good state and seem to have little/no deposits on them. This is great news as I havent had children yet and would very much want to in the future (I'm 28).
I am on a low carb diet, which I do for weight loss- but I have also read up on the benefits of limiting starchy/processed carbs for endo. Two birds with one stone ;o)
Thanks again) 0 -
Sorry to hear your pain is coming back so soon. I have tried all sorts of pain relief over the years, but I use either ibuprofen or tens machine - I love mine and can highly recommend them.0
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I have multiple prescription medications, but try to limit those. High doses of Advil can help sometimes and recently I've tried drinking Raspberry Leaf tea (I have the Tranditional Medicinals brand) which helps.0
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The best thing for my pain is to exercise, especially swimming (takes weight and stress off my stomach). I've got quite extensive stage 4 endometriosis, affecting everything (basically everything on my right side is glued together including bowel). I can't take too many pain meds because they cause other problems for me. But for me moving has always helped, hard to get going but definitely worth it! Other than that I use heat pads/ patches and sometimes a tens machine. But try to avoid my prescription pain killers unless absolutely necessary while waiting for my next big op. Hope you've found your pain releif!0
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I'm having a horrendous day pain wise actually(
My doctor has given me Tramadol for when my pain is bad and I have taken a couple of those. I do try to limit these for the very bad days.
Here is a link to a site that specialises in pelvic pain solutions- there are several heating/cooling pads designed for pelvic, back & groin pain and you strap them on!
http://pelvicpainsolutions.com/index.html0 -
My lap made my endo pain worse too. Before surgery it was mild to moderate, after surgery it's been severe and affects me about 50% of the time. I saw a pain management specialist who prescribed me Percocet. We tried Darvocet, Hydrocodone, and a low dose Percocet but none worked until I started taking 7.5 mg of the oxycodone (Percocet). I hate the way they make me feel and I wish I didn't need them, but that's what they're there for - people who are in severe pain.
I was on pain killers for about 14 months and recently decided I can't continue them, I can't logically spend the rest of my life on them whether necessary or not. I'm revisiting with my doctor and thinking of switching to Cymbalta which is an anti depressant also used to treat pain. I also know a few women who have tried anti seizure meds (can't think of the name?) and have had some relief... I've contacted an endo specialist to get a price quote for surgery and out of pocket can run about $30,000 for proper removal. While you can't put a price on great health I can't afford that!
I hope you find something that'll help you, I hate to see anyone in pain or get stuck on the endo continuous surgery rollercoaster! Good luck!0 -
$30,000 for endo surgery!!!!!!!!!! Thats about £19,000 OMG!
I guess I have a lot to be thankful for really as in the UK we have free birth control/hormone treatment and free NHS medical treatment (including surgery). Although there aren't many endo specialists who do radical excision surgery here so many ladies do opt to pay for it privateley as the NHS waiting lists are verrrrrrry long.0 -
After diagnosis and my first op, I was offered Zoladex to put me in a temporary menopause for 6 months. I did lots of research and met a couple of people who had taken it and was sufficiently put off and refused it. Instead, I decided to follow a diet to reduce the pain and two things that make a difference (for me) are avoiding wheat and dairy. I had a cheese binge on holiday a while ago and had the most horrendous period a week later. It could have been coincidence, but I'm sure it's linked. I also gave up alcohol, as I was feeling awful after just a couple of drinks and it made my symptoms worse.
Other than that, I rely on a hot water bottle to ease the everyday pain and raspberry leaf tea during my periods. Unfortunately, my period pain has got a lot worse over the past few months, so I have had to resort to taking co-codamol, which I stopped taking a couple of years ago as I was taking it almost daily and wanted to give my liver a rest.0 -
Evening primrose oil. I take 4 capsules every day (2 in the morning, 2 in the evening). I've done this for two months, and I've noticed a real difference pain-wise. I still have cramps, but they're a dull pain instead of that sharp awful pain.0
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A couple of people here have mentioned a "tens machine". What is a tens machine? I've only ever relied on high dose ibuprofen and heating pads. I'm eager to look for anything else out there that works!0
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I take various pain meds like Norco, use a heating pad, take anti-inflammatories before and during menstruation, and exercise. All of which help, but I still have really bad days where I can't do much.
I've had two surgeries, but my doctors have told me the surgeries are actually making my endo worse. The way it was explained to me is that every time they open me up (I can't have laparoscopic surgeries since I have so many adhesions which makes the risk of puncturing an organ very high via laparoscopic surgery) the inflammation and scar tissue the surgery creates just makes more endo adhesions in my abdomen, so I was advised by my doctors to hold off on getting another surgery (as long as I can tolerate the pain and it doesn't cause another bowel blockage) until I plan on trying to get pregnant. At which point they'll do another surgery to free up as much of my fallopian tube (I've already had to have one tube and ovary removed) as possible and clean up as much of the endo as they can and then I can either go on the drugs that puts you into menopause for the predetermined amount of time so the rest of the adhesions shrink up (which I don’t think I’ll do, the risks and side-effects seem pretty gnarly) or if I chose to forego the drugs I should just start trying to get pregnant right after the surgery.
Good luck on your pain management!0
