Endometriosis Support Group

I do totally agree - the fact that we are left in chronic pain like that with no options is totally unacceptable (I have had severe sciatic pain for almost 1.5 years now and to this day NO doctor will give me a solution except surgery or Lupron).
For starters, your doctor should not be prescribing codeine type pain relievers, as they do nothing for endo pain and require increasing amounts until addiction is inevitable. The normal drug prescribed for endo pain is ANAPROX/NAPROXEN, an anti-inflammatory. Yes, it has no painkiller per se, but it stops the chronic inflammation at the source of the pain if taken before pain gets really bad. You can ask for this in the meantime while you look at other options (it comes in 550 double strength formula prescriptions).
I can say a couple things about narcotics for endo pain relief though...because your doctor is right in a couple ways. A surgeon explained it to me well. He said that firstly, people with chronic pain should RARELY be given narcotics, as they will simply need more and more. Apparently, especially with endo related pain, narcotics are needed in such increasing amounts that they are only effective for endo for short periods (which is why I am thinking they gave it to you then stopped).

I get incredibly ill from codeine drugs, can't have surgery again due to severe adhesions (which your doctor should make sure you don't have, as this can cause post-surgery pain and more surgeries will only result in worse pain if you have this), and I also am trying to have kids now, so had to stop all drugs. The main thing that has SAVED MY LIFE in terms of chronic pain is acupuncture. I really have quite horrible pain (I had a special surgery where they severed a nerve to stop cramping it was so bad) and acupuncture has made me able to work, sometimes even exercise or frankly...like you said...just cook or do the dishes where before I was unable to move.

Can you see an endo specialist or someone other than who did your surgery? Sometimes unskilled doctors cannot perform endo surgery well enough to get relief.
Also, if none of these options work, can you ask him about the possibility of a pre-sacral neurectomy or LUNA procedure? This is where they sever a nerve that stops the pain signals from the uterus to the brain. I had it with my last lap and it was the best thing I ever did.

I was referred to a pain and pelvic clinic in Rochester, but it's going to take 2 months to get in. My fiance and I would love to have a child but unfortunately he had a vasectomy quite a few years back and we need a few thousand for the reversal. I just want the pain to go away and live a normal life like everyone else.

I agree - I hate being in pain all the time.

Ask to get some Anaprox prescribed in the meantime. It is non-addictive and if taken continuously it can give you a little relief (I used to take 1 every 12 hours for the whole week before my period). There is no reason you should be left with NOTHING.

I hope things look up and you get into the clinic soon!

I know what you are going through, I had to fight to keep my Rx. Now my GP trusts me enough to not ask questions, she knows how much pain I'm in on a daily basis. Especially since I ended up in the ER for pain with no insurance at the time. I've tried EVERYthing over the counter, I ended up taking too much and it did nothing for the pain anyway. I've tried taking NSAIDs before I start to get my period but I get alot of break through pain so I end up taking my Rx narcotic. It's the only thing that gives me pain relief and keeps me functioning everyday.

Hopefully the pain doctor will help you. I've also been referred to a pain clinic, it was my only option seeing how as I don't want a hysterectomy.

Good Luck!

Yes, yes, yes, yes... I do understand all too well. And it is a really slippery slope. Some doctors don't want to give too much pain medicine for fear of getting a patient addicted or that the doctor themselves will get busted.

I also take Tramadol because it's at least non-narcotic. I have tried Darvocet and Hydrocodone... and sometimes they helped, and other times they didn't when the pain was off the charts. But when they DID help, I also realized that I was feeling better mentally as well.

So I started talking to my Family doctor and talking about depression, so we are addressing that now as well. I know I can't stay on pain medicine forever, and I really don't want to. But I do want to have a decent quailty of life, as I think we all do. I really feel for you. I hope you can manage the pain.

Kate,
Opioid pain medications like Oxy get a bad rap because they are associated with drug addicts and lowlifes. I take them everyday and I am neither. It is largely a myth, but a powerful one. Most people do NOT become addicted to legitimately prescribed pain meds, less than 1%, unless they have pre-existing addictions.
Your age is another factor for they way you are being treated. I am 37, and I get grief for needing these meds at such a "young" age.
You need to find a pain management doctor. Be advised that they usually drug test frequently. Have the prescribed med in your body during all appointments and nothing else!
Try again with the doc who Rx'd Oxy. Explain that you are trying to get in to a pain management clinic and need another bottle to tide you over.
I am glad that some ladies like Utah can get by with OTC meds like naproxen, but they don't work for everyone.
Incidentally, my morphine and hydrocodone Rxs are not for endo, they are for severe DDD + DJD along my entire spine.
Sending my best to all you wonderful ladies out there!

Hi Kate im sorry you are suffering so much, i hope you get the right doctor for you soon xoxoxo

I know that all of us can understand what you are going through....They don't really want to give you anything, they want to push you into surgeries, and do not understand at all.....I am finally getting in to see my specialist this Monday hopefully it will be different than all the other doctors, I hope that you get to feeling better and I hope that when you are able to get into see a specialist that he/she is able to do more for you also.Best of luck to you and I hope that you are able to get some relief soon. If you need to talk or anything feel free to message me.

Thanks so much Kendra, it feels like i'm going through this all alone. I can barely sleep at night because of the pain and I wake up completely drenched in sweat. It feels like the doctor just threw me to the side, i dont' know how a doctor can offer you help and relief and then when your out of whatever they give you for help their done with you..it's crazy...like abandonment

I do respectfully disagree with ChronicIL, some drugs are addictive solely because of their ingredients...from cigarettes, to opiates, to heroin, all contain chemicals that the brain is trained to want more of once you get it.
I do totally agree some of us need it though and there is a HUGE difference between someone requiring the meds for pain and someone who takes it recreationally. I think the problem is that once you go down that road, it is very hard to get off drugs (I have done it more than once and every time the pain comes back tenfold and I am also faced with dealing with withdrawal symptoms). Chronic pain can be treated with addictive drugs if monitored by a pain specialist...

Anaprox does not even touch my pain, but I have made a choice to not take the other drugs as I know I am prone to addiction and will go down a bad road if I start it. The anaprox is really just a solution in the meantime.

I hope you get some relief.