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Endometriosis pain management

I am 31 and have had chronic low back and R hip pain for three years.  It is gradually getting worse and is to the point I feel like I am in active labor some days.  I can't function without heavy pain meds anymore.  I do not like taking them for many reasons but I hate the pain more.  I have been diagnosed with endometriosis and adenomyosis.  I have tried several different hormonal therapies and am unwilling to try anymore due to the side effects.  My doctors are now talking hysterectomy.  I can't have surgery until at least Sept due to insurance reasons.  Any recommendations??  I need to find ways to deal with the pain and still function as not only are my doctors willing to prescribe enough pain medicine to get me through ( I need 3-4 per day and even then I sometimes have severe pain) I also do not like taking that much long term.
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Avatar universal
Hi there, I read your post and feel your pain.  I too had terrible back/sacral pain. (read my thread "back pain secondary to uterus?)  MRI showed I had a disc issue but my pain was lower back/SI joint/pelvis/hip/groin area.  I said my pain was from my belly button to my thighs.  Pain was daily and severe, it consumed my life. I went to pain management was on meds, injections, epidurals, PT..nothing worked. Finally the doctor looked into gyno troubles....I had fibroids, endo, low ferriten. I was put on hormones and side effects were awful for me too. They told me that a hysterectomy "might" reduce my pain...but "might not"  I decided to take the chance and it is amazing! The pain in my back is gone, I am post op day 7 and I know that is too soon to tell but it gives me hope. My uterus was 5 times the wt of a normal one and boggy.  The pain after the surgery is minimal compared to what I had before...I guess I didn't realize how severe the pain was prior. I guess if there is no chance of having surgery earlier, try ice/heat/rest...anything that helps.  Stretching also helped alittle....actually for me nothing helped.  I know everyone is different but just realize there is HOPE out there...something I never knew until now.  Good luck and I hope there is relief in your future.
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Avatar universal
I would not recommend Leupron to anyone not even my worst enemy, this med is so bad it was horrible for me and my husband, when i first got the shot i was laying in the floor in to much pain that i asked my husband to just kill me, then i got mood swings to bad it scared me, and i was so mean but i had no control over it, it changes the way you think and makes you forget alot it is just not worth it.
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599170 tn?1300973893
Im going to address the andeomyoisis  it will not go away, nor will the endo tissue it will grow. the only way to stop this pain until  your surgery is to speak with dr ask them to put you on meds that induce a chemical menopause. These medications work very well for many do know the most common side effect is depression, weepiness, you sound like your in so much pain Id try it you can stop as easy as you start. The hope would be this will help until surgery. With out mensturation the endo tissue will not grwo, flare up etc...

the boggy heavy andeno uterus can only be fixed via hysterectomy.,I always advise alternatives. there are none for this Im sorry. When your surgery is closer get back to me I have lots of advice pre and post op

the med I speak of is Leupron your dr will know it.

Cher
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Avatar universal
I can't tolerate bc pills even yaz, I have horrible side effects, weight gain, mood swings, and continual spotting.  I am good friends w a chiropractor and can get as many adj and massages as i want.  My chiropractor has pointed out that since adj have never helped it is not a alignment issue per se.  I have had several x rays of my low back and pelvis which show my sacrum is tilted.  This can be adj but always goes back.  We believe that the endo is causing inflammation and muscle spasms that are pulling my sacrum out of alignment.  Just to be sure I am having a MRI next month to rule out spinal issues.  I didn't mention before that I also have a large scar on my tailbone from an infected pilonidal cyst removal.  I have asked my md several times about going to pain management and he brushes it off because the solution is surgery.  As for daily pain I belive that is due to all the hormonal treatments in the last year making me spot for the last six months.  Although, endo and adenomyosis CAN cause daily pain.  I am aware that I probably won't be able to make it until Sept.  At my next appt I am going to ask for a lidocaine patch or something if refer to pain management.  Thanks for the suggestions though I sure wished I could manage it wih BC's
Helpful - 0
Avatar universal
Do your symptoms of pain come only during ovulation and the time of your period? That's typical of endometriosis pain, if youre having pain every day, thats something else to look at. If its endrimetriosis related pain and you cannot get surgery until september, what I suggest is getting on a hormone that prevents you from getting a period until then. I get horrible periods-heavy, cramps, abnormally so. And I like to control things :). So I take the Birth Control pill, Yaz, and take it consistently without taking the placebo pills, so I only get a period every 6 months. I got the ok from my gynecologist to do so. That might help your pain as that will prevent you from bleeding, which is why you are in pain in the first place. If youre in pain every day, I would suggest ruling out other things that might be going on, just in case. If you are in as much pain as labor, that needs to be addressed now and cannot wait to spetember. Have you tried getting a referral to a pain specialist? They can be very helpful in pain releif and can offer additional means other that pills, such as injections and patches, so you don't have to constantly be taking pain killers. Have you gotten an MRI of your low back and right hip? That may offer some clues as to what else if anything may be going on. If insurance is a problem, often times chiropractors offer low cost xrays out of there offices which is better than nothing. Either way you do not deserve to be in pain and should not have to tolerate it. The pills are obviously not working anyway, so something needs to change. I suggest talking to your doctor, trying to see a pain specialist, and perhaps suggesting a higher dose of pain meds in the extended release version, so you only have to take one in the morning and one in the night. That should at least releive your pain for now. I would also ask about lookibng into other causes for your back and hip pain. Lastly, I would try, one last time, hormones to stop your period completly until September. I get no side effects from taking Yaz consistently (except bigger boobs and weight loss actually!). Hysterectomy sounds like it may be your best option for pain releif, but you have plenty of time to research this and here patient stories of outcomes from this procedure. I trully hope you feel better soon, and please, keep us posted. Good luck and best wishes :)

Sara RN
Helpful - 0
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