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Pain Management for Endometriosis
I posted this question over in the endometriosis forum, but I'm not sure if someone here can help me. I'm pursuing a pain management clinic to treat endometriosis as the pain is so sever that my OB/GYN will not treat it. She also wants to try Lupron, but that takes some time to work. I was wondering if anyone has any feedback for pain management clinics an pain management for endometriosis. Thanks so much. This has an will be a tough journey so any help is appreciated.
I am also diagnosed with Endometriosis.. going through the pain daily. I am from Fiji and there is not much done here or I gues not much options available here. .. I am also getting frustrated daily as there is not much done to relieve the pain except taking Voltaren (pain killer), which aswel does not work when the pain is bad.
i hope you find the right doc to treat you
All the best
i hope you find the right doc to treat you
All the best
I visited with the PMP yesterday and her solution was to try a different anti-inflammatory and see how I do with that. I explained to her that the others such as motrin, aleve, naprosyn, etc have not worked as the pain is so severe (about a 7-8 on the pain scale.) She did not want to prescribe anything else and wants to see how I do on the Relafen, which is the new medication. I felt extremely defeated leaving as my immediate pain, lack of sleep, and emotional roller coaster were not addressed. I'm not sure what to do at this point. I started taking the Relafen last night but have not noticed any difference. It's extremely frustrating when your pain is not being taken care of, and you know what you're body needs. Does anyone have any suggestions about what to do at this point? Thanks.
Thanks Claire for your suggestions and words of encouragement as I get more nervous as the day approaches. I've had two laparoscopies in the past 5 years and I'm 27. My doctor wanted me to try Lupron, which I recently started before going through another surgery as I'm still "young," which is a relative term and want to have children someday. However, I'm finding myself extremely emotional, although I was already an emotional person, and have aches and pains like the flue. They have me starting a hormone pill called agestrine as a supplement to the Lupron the balance that out. As for the pain management, I've already tried yoga and meditation. I'm more the pain medicine person to management the pain, but I'm open to other options out there too. I'm anxious as to what the doctor is going to suggest and prescribed and how it compares to the course of treatment I would choose for myself. These last few months have been the worst since my endo started and I feel like I'm on a rollercoaster. I hope the PMP can help stop this or at least slow the ride down. If anyone else has any personal experiences they could share that would be awesome. Thanks for all your support to everyone.
The treatment you could be advised on or prescribed will depend on what you want to do, for example if you want to have children or not, your age and how bad your endo is.
What pain relief works for one person may not work for another, it is a matter of time and what you want before a solution can be found.
I have been treated by my docter and gyni. for the pain i have had from endo and pcos since i was diagnosed in 2005 and was never referred to PM even though i was in such bad pain i couldnt even move, but my husband has been referred to them since he has been diagnosed with multi joint ostearthritis and torn tendons in both sholders which provents him lifting his arms above sholder height, i know this is massivly different to endo but since he has been going they have tried hydrotherapy, TENS machine which from what i have read is usually a popular choice for people with endo that helps with pain, i carnt say myself as ive never tried it, they have given him buprenorphine patches and amitriptyline to sleep on a night as he carnt sleep, how this compairs to what PM may offer you i dont know, but this is the only experiance i have had with PM Clinics.
In the past ive had hormane tablets to try to regulate my periods and control the pain but this failed,
i was then treated with countless pain killers but at the time my pain was so bad these didnt work.
In 2005 I was then advised to have zolodex injections which are like Lupron and put you into a menopause state, i had the full course of 6 injection, they made me so emotional and i sometimes couldnt think straight, i ended up leaving my job which i had done for 5 years and i was a manager, however the pain relief i got at the end of the course was brillient i had no pain at all.
In 2008 my pain reaccured and i was again so bad i couldnt even move, but things had changed, i had been married a year and we both wanted kids so i was told the better thing to do would be to find a painkiller that worked even if it worked only ever so ofter and be referred to a fertility clinic, which at the moment is what i am still doing,
Everyones pain relef journey is different and what method is used to releive you pain or even partually relieve it is entirelly up to you, it concerns what you want in the future, what types of methods you are willing to try i.e. medication, surgury, or natural remedies and what method relieves your pain the most.
Treatment options are vast ranging from hormone tablets to a complete hysterectomy to keyhole surgury to possibly remove the endometriosis tissue depending on how bad it is.
Have a list ready of qusetions you want to ask the consultant, your worries and concerns and think about what you want in the future, as i have said before
dont be nervious, tell them what you feel, what you want, what you dont want, what you are willing to do and somewhere inbetween they will find a solution that will make you comfortable, it may take time but be strong, smile, keep your head held high and go for it.
Take care and the best of luck.
Claire.
What pain relief works for one person may not work for another, it is a matter of time and what you want before a solution can be found.
I have been treated by my docter and gyni. for the pain i have had from endo and pcos since i was diagnosed in 2005 and was never referred to PM even though i was in such bad pain i couldnt even move, but my husband has been referred to them since he has been diagnosed with multi joint ostearthritis and torn tendons in both sholders which provents him lifting his arms above sholder height, i know this is massivly different to endo but since he has been going they have tried hydrotherapy, TENS machine which from what i have read is usually a popular choice for people with endo that helps with pain, i carnt say myself as ive never tried it, they have given him buprenorphine patches and amitriptyline to sleep on a night as he carnt sleep, how this compairs to what PM may offer you i dont know, but this is the only experiance i have had with PM Clinics.
In the past ive had hormane tablets to try to regulate my periods and control the pain but this failed,
i was then treated with countless pain killers but at the time my pain was so bad these didnt work.
In 2005 I was then advised to have zolodex injections which are like Lupron and put you into a menopause state, i had the full course of 6 injection, they made me so emotional and i sometimes couldnt think straight, i ended up leaving my job which i had done for 5 years and i was a manager, however the pain relief i got at the end of the course was brillient i had no pain at all.
In 2008 my pain reaccured and i was again so bad i couldnt even move, but things had changed, i had been married a year and we both wanted kids so i was told the better thing to do would be to find a painkiller that worked even if it worked only ever so ofter and be referred to a fertility clinic, which at the moment is what i am still doing,
Everyones pain relef journey is different and what method is used to releive you pain or even partually relieve it is entirelly up to you, it concerns what you want in the future, what types of methods you are willing to try i.e. medication, surgury, or natural remedies and what method relieves your pain the most.
Treatment options are vast ranging from hormone tablets to a complete hysterectomy to keyhole surgury to possibly remove the endometriosis tissue depending on how bad it is.
Have a list ready of qusetions you want to ask the consultant, your worries and concerns and think about what you want in the future, as i have said before
dont be nervious, tell them what you feel, what you want, what you dont want, what you are willing to do and somewhere inbetween they will find a solution that will make you comfortable, it may take time but be strong, smile, keep your head held high and go for it.
Take care and the best of luck.
Claire.
Thank for everyone's support. I'm really open to anything that will hep treat the pain and get my life back on track. I need a solution to help me sleep at night but to also function at work. I know that each PMP is different and so is each case of endo. It just makes me nervous os what to expects since I've never been down this road before. For those who were treated with endo what type of treatments did you doctors prescribed. There are so many options I'm just trying to get an idea of what to expect. Thanks for the support. I'm counting the hours till Thursday afternoon, even though it's just a consult.
Hi my names Claire and im in the UK so thing are obviously different here but i was diagnosed with endo and polycystic overies in 2005 and was in so much pain i couldnt get out of bed, i had a course of 6 zolodex injections which by what im reading is simular to Lupron and instantly puts you into a menopause state i.e hot flushes, emotional and telling your boss at work to go f*** but thats another story :)
The injections worked great but just short of two years ago my pain returned and i was again in agony. Ive desided this time not to have injections cos im now 28 ive been married for three year and we want to have children, hopefully we will be able to but we just gotta wait and see.
Anyway as ive told my docter and gynocologist i dont want the injections but im in absolute agony again they tried alot of forms of strong painkillers eventually they found one that kind of works called Tramquel slow release 100mg capsules or Tramadol hydrochloride, its started as one tablet every 12 hours but has increased to 2 tablets every 12 hours, sometimes they work and sometimes the pain is still so bad i have to go to my docters and he has to give me a additional painkiller to take with them
You might not want to go down the path of taking medicaition like that
ive read about some people who have gone to PM clinics and have done a trial with a TENS machine and that has helped.
Dont be nervious just go tell them what you feel, what you want, what you dont want and somewhere between they will find a solution that makes you comfortable but it may take time just grit your teeth keep your head held high and go for it.
Take care and good luck
Claire
The injections worked great but just short of two years ago my pain returned and i was again in agony. Ive desided this time not to have injections cos im now 28 ive been married for three year and we want to have children, hopefully we will be able to but we just gotta wait and see.
Anyway as ive told my docter and gynocologist i dont want the injections but im in absolute agony again they tried alot of forms of strong painkillers eventually they found one that kind of works called Tramquel slow release 100mg capsules or Tramadol hydrochloride, its started as one tablet every 12 hours but has increased to 2 tablets every 12 hours, sometimes they work and sometimes the pain is still so bad i have to go to my docters and he has to give me a additional painkiller to take with them
You might not want to go down the path of taking medicaition like that
ive read about some people who have gone to PM clinics and have done a trial with a TENS machine and that has helped.
Dont be nervious just go tell them what you feel, what you want, what you dont want and somewhere between they will find a solution that makes you comfortable but it may take time just grit your teeth keep your head held high and go for it.
Take care and good luck
Claire
I also was diagnosed with endometriosis .I like Jaybay had a hysterectomy because of it .I hope your pain is treated well by your PM .This is a very painful disease .I wasn't fortunate enough to have PM when I was suffering with this so I wish you the best with PM .I now go to PM for problems with my back and neck and it has been a godsend .Don't be fearful of going .They are there to help you .You prob will have to sign a contract with them stating you will not get pain meds anywhere else .And may be subject to pill counts and UA .This is common so don't take it personal .These contracts protect you and your Dr .Everyone I know that goes to PM signs one of these .I don't know how it will go with your Dr but with mine on my first visit we talked about my pain ,how long I had been in pain and she told me her rules for being her patient .She discussed with me what meds had worked for me the best and came up with a regimen to control my pain .I was apprehensive on my first visit too but it wasn't bad at all .I hope that it works great for you and your pain is managed to where you can have a better quality of life .
Take care
Melissa
Take care
Melissa
I suggest just being honest with the PMP and tell them everything you have tried and also it is a good idea to keep a journal of your pain. We have an excellent pain tracker that you can print out and take to your Doctor when you go. This will help him understand your pain levels and help with what they may prescribe.
I am lucky not to have any symptoms after the birth of my second Daughter. I have no idea why I no longer have the symptoms but before she was born I was in alot of pain. I did not get specific treatment as I was already taking opiates at that point for other problems and even they did not help the pain much. I asked my Doctor why I no longer have symptoms and she said well she did not know but do not look a gift horse in the mouth:)
I was told I could not have anymore children and I did so I am wondering if I maybe had something else that mimics the symptoms of endo. Either way I am blessed not to have to deal with it.
I know the pain is horrible. I can't imaging your not taking anything for pain and how you can manage. I hope when you see the PMP that they do help you and you finally get some much needed relief.
I am lucky not to have any symptoms after the birth of my second Daughter. I have no idea why I no longer have the symptoms but before she was born I was in alot of pain. I did not get specific treatment as I was already taking opiates at that point for other problems and even they did not help the pain much. I asked my Doctor why I no longer have symptoms and she said well she did not know but do not look a gift horse in the mouth:)
I was told I could not have anymore children and I did so I am wondering if I maybe had something else that mimics the symptoms of endo. Either way I am blessed not to have to deal with it.
I know the pain is horrible. I can't imaging your not taking anything for pain and how you can manage. I hope when you see the PMP that they do help you and you finally get some much needed relief.
Thanks for all the supportive thoughts. I am fortunate enough to find multiple PMP that treat endometriosis in the state of MA. They're hard to find, but I was able to find one. I'm just nervous about what kind of pain management they'll suggest. If it's going to be yoga and meditation, I've been there and tried that. It's at the point where it's distracticing from work, I have no energy, cry at the drop of hat, I don't know whether that's because of the Lupron or frustration, and have trouble walking as it goes around my back and down my leg. I don't know if anyone has any expernece with a PMP and what they suggested, but I'd love to know as I am apprehensive about going.
It really would help if your OB/gyn would refer you to someone as that lends a certain credibility to your case. At any rate, a pain doc should ask to have clinical records sent, which should also make the source of your pain clear.
Endo destroyed my chances of having children and I finally had a hysterectomy. That was the end of the endo. I also tried the lupron route after one of my endo surgeries. The doc wanted me to do 6 months of lupron but I could only handle 2 rounds. That stuff is unbelievably nasty!
No doubt you know it throws you into immediate menopause by shutting down estrogen which endo needs to remain active. By the time I got home from the doctor's office I was hot flashing like mad and emotional like I have never been in my life. It was three weeks of pure-D H*ll that let up in the fourth week - just in time for the next shot. Doc tried adding a tiny bit of estrogen but it didn't help one bit. It also turned me into a mental idiot for a good six months after the last shot. I later learned that many women had the same experience with lupron, but plenty of other women had only minimal hot flashes and great pain control. It's another one of those cases of a medication working for some and being a disaster for others. I hope it works for you if you decide to try it.:-)
Endo destroyed my chances of having children and I finally had a hysterectomy. That was the end of the endo. I also tried the lupron route after one of my endo surgeries. The doc wanted me to do 6 months of lupron but I could only handle 2 rounds. That stuff is unbelievably nasty!
No doubt you know it throws you into immediate menopause by shutting down estrogen which endo needs to remain active. By the time I got home from the doctor's office I was hot flashing like mad and emotional like I have never been in my life. It was three weeks of pure-D H*ll that let up in the fourth week - just in time for the next shot. Doc tried adding a tiny bit of estrogen but it didn't help one bit. It also turned me into a mental idiot for a good six months after the last shot. I later learned that many women had the same experience with lupron, but plenty of other women had only minimal hot flashes and great pain control. It's another one of those cases of a medication working for some and being a disaster for others. I hope it works for you if you decide to try it.:-)
Hello ALSELM,
Welcome to MedHelp's Pain Mangement Forum. I am very sorry to hear that you are suffering from the pain of endometriosis. Chronic pain can be horribly disruptive to our daily lives. You are so right, it is a tough journey. You have my empathy.
I too was once DX with endo and know the type of pain you are experiencing. It can be excruciating. I am blessed as mine has also subsided.
I apologize that I do not know how your particular state addresses pain management for endometriosis. It is my understanding that in some states, some PMP insist you have to have an MRI that "proves" you have pain. They only treat certain types of pain.
That is not the case in my state. It is our PCP that prescribe for and follow their chronic pain patients. I have to admit that I do not understand the refusal of some PMP to treat certain types of pain. In my opinion, pain is pain. It doesn't matter where it is located. Apparently most PMP do not share that view.
If your OB/GYN has suggested that you seek a PMP does she not have a suggestion. Can she not refer you to a PM Clinic. If she is not able or willing to do so can you consult your PCP? I would beleive that your PCP would be able to refer you to a PM Clinic.
But again in my state it is the PCP that treats us and I do not have a lot of experience dealing with prescribing PM Clinics. I hope a member may have more information for you. I hope you will continue to post and feel free to ask additional questions.
I wish you the very best.
Take Care,
~Tuck
Welcome to MedHelp's Pain Mangement Forum. I am very sorry to hear that you are suffering from the pain of endometriosis. Chronic pain can be horribly disruptive to our daily lives. You are so right, it is a tough journey. You have my empathy.
I too was once DX with endo and know the type of pain you are experiencing. It can be excruciating. I am blessed as mine has also subsided.
I apologize that I do not know how your particular state addresses pain management for endometriosis. It is my understanding that in some states, some PMP insist you have to have an MRI that "proves" you have pain. They only treat certain types of pain.
That is not the case in my state. It is our PCP that prescribe for and follow their chronic pain patients. I have to admit that I do not understand the refusal of some PMP to treat certain types of pain. In my opinion, pain is pain. It doesn't matter where it is located. Apparently most PMP do not share that view.
If your OB/GYN has suggested that you seek a PMP does she not have a suggestion. Can she not refer you to a PM Clinic. If she is not able or willing to do so can you consult your PCP? I would beleive that your PCP would be able to refer you to a PM Clinic.
But again in my state it is the PCP that treats us and I do not have a lot of experience dealing with prescribing PM Clinics. I hope a member may have more information for you. I hope you will continue to post and feel free to ask additional questions.
I wish you the very best.
Take Care,
~Tuck
I have endo as well and was just telling my friend last night that I was diagnosed after my first daughter was born in 2002 and the pain was horrible. I was told I could not have any more children because it was so sever. But God had other plans and blessed me with another little Girl and after I gave birth to her the endo just seemed to disappear. I have not had any symptoms at all since having her in 2003.
I am not aware of any PMP that treat it but I am sure there are some out there.
What state are you in?
I am not aware of any PMP that treat it but I am sure there are some out there.
What state are you in?
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