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Pain Management and Endometriosis
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Pain Management and Endometriosis

I recently visited a PMP for management of pain due to endometriosis and pelvic pain.  She could barely touch me without me jumping off the exam table.  In the end her suggestions we a prescription for Relafen, and anti-inflammatory, and a Lumbar Epidural Spinal block in 2 weeks.  I was extremely frustrated given that my pain is a constant 7-8, but she said that Relafen was all she would provide for pain.  Is that a normal procedure for a PMP?  Has anyone had a Lumbar Epidural Spinal Block?  What was it like?  Painful?  And has anyone had the procedure for endometriosis?  Any input for how to approach my relationship with my PMP physician or seek a new one would be great.  My pain is at a 7-8 fairly constantly and is affecting every part of my life, work, family, daily functioning etc, so I was slightly surprised and disappointed that she didn't want to be more aggressive at treating the pain.  Is that routine of a first visit with a PMP or should I consider seeking a new one?  It's already hard enough to find one that will even approach and treat pelvic pain.  Thanks.
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356518_tn?1322267242
I am sorry your appointment did not go well. But give the Doctor a chance. Try the treatment she has offered first and then if it does not help then let her know and then if she refuses to help you any further then it may be time to get another opinion.
I have had epidurals in the past and they were not painful as I was put under when I got them. The Doctor tried doing the procedure while I was awake and with some Valium but the pain was too much for me so he began giving me anesthesia. The epidurals did not help me but there are some that they really do help. I suggest giving it a try and then if they do not work then you can say well I have tried this and it did not provide any relief. The medication she gave you is often prescribed for endo but if it is not helping your pain then when you go in for the epidural tell her it just isn't even touching the pain. She may have you wait and see how the epidural works before prescribing something stronger.
If after the epidural and you have gotten no relief from that or the medicine then it is time to tell her this is not working and see what other options she can offer. If she is unwilling to do anything more then find a new Doctor. You have to be careful about seeking out a new Doctor, this is why I suggest you try what she suggest and then when you do see a new Doctor you can explain why you left because her treatments were not working but you did try.
I hope the medicine and the epidural do help you some:)
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547368_tn?1332173665
Hi Again ALSELM,

I know you were looking forward to the appointment with the PMP. I understand your disappointment. I would feel the same.

From my understanding PMP often take the less aggressive approach to PM. They must document that they are tried other routes to control chronic pain then just prescribing an opiate. So often first, even second appointments are non-opiate prescribing ones.

As Sandee suggested give the clinic a chance. They all have their own procedures and initial approach to pain managment. Many of us have to try all opinions. Certainly I wish an epidural or similar injection would have been effective in easing my pain. For some ppl it is effective. But like Sandee and others, mine was not successful, I found no significant or long lasting pain relief from a steroidal injection. My first fluoroscopic guided injection was not painful. The second on was but my physician did provide some sedation. My dad had no pain with the injection and it did help reduce his acute pain. Obviously my dad did not suffer from endo.  

As you know Relafen, generic name Nabumetone is a non-steroidal anti-inflammatory drug. If may have some effect on your pain. Although when I was DX with endo I did not find any NSAID that reduced my symptoms to any tolerable level.

I encourage you to give the PMP a bit of time, after all you did find difficulty in location on that would treat pelvic pain.  If after you have tried their suggestions and have obtained no relief than see what they offer. If it is not acceptable to you...move on. At least you have tried and your record will reflect that you have done it their way, which is always good.

I know you will keep us updated. I am very sorry that you still have un-managed pain. Hopefully with the guidance of the PM Clinic they will find solutions. Be good to youself.

~Tuck
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Avatar_f_tn
I'm sorry that you have terrible pain from Endo.  I have heard it can be awful.  I have met some people who swear by the epidural injections and some whom they haven't worked for, everyone really responds differently.  
I completely agree with Tuck and Sandee on how to go about it with your PMP.  Sometimes a medication has to "build-up" in your system for it to really start taking effect.  I don't know much about Relafen, so I'm no help there.
One thing I would suggest is to let them feel everything no matter if you have to jump a little and cry out in pain.  If you squirm away from them, they get annoyed.  I know this from experience.  My neck has hurt so bad I just didn't want anyone to touch it and was sure a touch would make it worse than ever.  Those are the times they probably should have felt it to see that it was all swollen and out of place.  Sometimes I hold my breath if they have to touch, but I'm not sure if that's a healthy thing to recommend.
I hope you get some kind of relief soon.  We are always here to talk to about your CP.  
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Avatar_f_tn
Thank you for all your advice.  I have decided to go forward with the LES next week, but also reach out to my OB/GYN and talk to them about the fact that the Lupron has not seemed to have had much of an effect.  It was a 1 month shot, and I'm currently in my third week.  It does make sense to go through with the LES and give it a shot (no pun intended.)  If it didn't work at least it is documented like you said.  I can then see what else the doctor has to offer or proceed in finding another PMP.  My ultimate hope is that my OB/GYN will agree to do a laparoscopy to remove the existing endo then continue the Lupron shots and Pain Management Program as needed.  At this point, I'm battling pain which is getting worse and many side effects from the Lupron.  It's good to know that others have gone through these struggles, and I'm not along.  You all have provided great insight and suggestions.  Thank you so much.
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82861_tn?1333457511
I had 3 laps for endo and also tried two months of lupron.  That stuff did BAD things to me.  The hot flashes and raging emotions were bad enough, but it vacuumed my brain into idiocy for several months after stopping the injections.  Apparently that side effect isn't exactly uncommon.  The only thing that finally stopped the endo (and constant bleeding and pelvic congestion and pain) was a hysterectomy.  Still managed to hold on to my ovaries so I got to go through the hot flashes of perimenopause a few years later.  There's just no escape!  LOL!

My sister has also had 3 laps due to endo - it always seemed to go after her bladder and ovaries.  Just like me, it took a hysterectomy to finally shut it down.  

Part of the problem with endo is that it also causes adhesions - scar tissue that can glue organs into places they shouldn't be.  That's one reason why endo causes so much pain and also bowel problems.  Adhesions may be a reason that the lupron isn't helping.  Surgery for endo and adhesions is both diagnostic and therapeutic.  Neither shows up on imaging studies as a general rule, so it can be difficult to find a surgeon willing to operate on a seemingly normal person.

Hang in there with your pain doc and see how the injections go.  Like everyone else said, give the doc a chance but if she can offer nothing else and you're still completely miserable it's time to move on.
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356518_tn?1322267242
your welcome:0
I hope you do find some much needed relief. This is a very painful condition and I know you are having a tough time dealing with the pain.
Speak to your Doctor about what you would like to do and remember you have a say in your treatment.
We are all here for you in the meantime and will support you and answer any questions you may have:)
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Avatar_f_tn
Hi Everyone,
It's such a relief to have a place to go where people can relate and understand what I'm going through.  My family and friends are sympathetic, but they don't understand completely what I'm going through physically, mentally, and emotionally.  I spoke with the NP from my Gyn's officer  to see what the next course of action is since my pain has not improved since receiving the Lupron shot and the side effects have not eased up.  Unfortunately my doctor is on vacation.  The NP is concerned that my pain is getting worse and not better with the Lupron.  When I originally saw my doctor a little over a month ago, we had agreed to do a 1 month Lupron injection and see how I tolerated it and if it was beneficial to my treatment plan for endo.  If so, that would be my course of treatment.  If I did not respond well, then we would reconsider surgery.  The NP said she'd leave an e-mail for my doctor, which was marked as "high priority" so that my doctor would review my case and treatment options upon her return next week as soon as possible.  It seems like the PMP thinks my best treatment would by another laparoscopy to remove the endo and any adhesions, but my Gyn is leaning more towards the Lupron/hormone treatment plan.  The last laparoscopy I had was last July and the endo had spread to my intestines, bladder, and bowel, which is what I fear has happened again.  If I had a choice, I"d have another laparoscopy in an instant.  I had an easy recovery with much less pain than I'm dealing with now and was pain free up until about April of this year.  I really felt like a new person.  I'm really struggling with how approach my Gyn as to how I truly feel about wanting the laparoscopy rather than more hormone treatments.  The NP mentioned other hormone treatment options including Mirena, but I've already been waiting so long to see if each medicine works that I'm frustrated and have had enough.  I'm sorry to sound so negative, but I'm at a loss as to what to do.  I feel like I have no control over what is going on in my body, the amount of pain that I'm experiencing, and the lack of a successful treatment plan. If I weren't 27 and wanted to have kids I'd say just take everything out at this point, but that's not an option.  Thank you all for listening, providing feedback, and being so sympathetic.  I am pursuing the nerve block unless I when I followup up with my Gyn's officer and they instruct me not too follow through with it.  For anyone who has had it, do you suggest being sedated?  One of the nurses, said it was really only for people who are babies, but I am extremely anxious about the procedure.  They do offer that at my PMP office, but I was wondering whether people felt it was necessary and what type of sedation have people experienced?  Many thanks again.
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Avatar_f_tn
I'm sorry to hear that your pain hasn't been helped by the last treatment.  It's so frustrating when we keep trying things and the pain is still there.  I can only imagine the pain and stress that endo causes.  
I have had an epidural injection.  I think it's similar to a nerve block, and it may be the same thing, but I'm not sure.  When I got mine (I've had about 2-3), the office policy was to put everyone under with fentanyl, I think.  So basically general anesthesia, but it was only for about 5-10 minutes.  I have met other doctors who felt strongly against putting the patient under during the epidural, but I am rather jumpy when I'm really nervous and I would rather be put under any day.  I think I would only have it done again with G.A.
Any nurse who says it's only for people who are babies to a patient with chronic pain doesn't have a clue about chronic pain and the procedures.  No one who deals with CP is a baby, some people would go insane if they had to deal with pain every day like this.  Also, many of the staff at the clinics where they do these procedures like to get patients "in and out" for these procedures and sometimes it takes a little bit for some people to wake up from the anesthesia, making it a longer day for the staff.  Their comfort should not be your priority, though.  Your comfort should be their priority.
I hope that you find something that works and helps the pain.  
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Avatar_f_tn
Many thanks again to all of your for your advice and support.  I did speak with a nurse and sedation is absolutely possible.  They use Versed so I won't be completely knocked out, but a little more comfortable.  I'm nervous, not for the procedure, but as to whether or not this is going to help me.  I spoke to my Gyn and she wants me to undergo another month of Lupron.  She does not want to do another laparoscopy before really exhausting all medicinal options.  The problem I'm running into is I can only take so much time off work to be running from doctor's appointment to doctor's appointment.  It would be easier for me to have surgery and be out 2 days of work then be taking a day here or there.  It's hard to say to a doctor, "I know by body and what I'm feeling, and I know what will help me."  I'm hoping I get some relief out of the epidural injection, but what if I don't.  Does anyone have any suggestions as to how to approach my doctors to voice the severity of the pain and how I feel it should be handled?  I don't want to be that patient that doctors don't like and get frustrated, but I'm frustrated right now.  Also does anyone know of anyone who has gone through PM for endometriosis and what treatments they have received?  Thanks for all the support.
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Avatar_f_tn
Other than the members who have posted in your thread here, I think there may be a few people who have posted about endometriosis and PM in the past.  A general search of the posts should turn up any other posts about it.
As for how to approach your doctor about what works and what doesn't:  Really I have found the best way to do that is to build a trusting relationship with the PM.  Unfortunately sometimes in order to do that we have to try it "their way" first.  I know it's hard to take a day off of work here and there, but I believe that with the Family Medical Leave Act you should be able to get your company to work with you as you go through this "Chronic Pain journey".  I know it's difficult to have to deal with work on top of managing a condition and CP.  
One option might be finding a doctor that has more convenient office hours for your schedule, like maybe later hours and weekends.  I know that you would have to "start over" with a new doctor, though, so that's a tough decision to make.
If all else fails you can just be frank with the doctor, tell her how you feel about your treatments and what treatments you feel would work best for you.  You are the doctor's "client" and you are paying for a service the doctor provides.  If she is not providing the service you expect, need and deserve, then it is okay to hire a new doctor's services.  If you present the facts in a straightforward manner and explain what you will or won't do, you won't be "that patient that the doctor's don't like" or frustrate them.  I think doctors should appreciate having a patient who speaks candidly with them.  One thing my MIL (who has been dealing with CP and PM for years) really impressed upon me was to "ask for options".  I am not so good about doing this sometimes as I get overwhelmed and am in a unique position right now.  I do try to remind myself to do that, though.  We hire the doctors and we deserve options to choose from.  In some cases there are no options and we have to take what we get, but in your case you should have options.
As for the epidural.  I know you are afraid that it won't work, but I would say to give it a chance.  I have met some people who say they are a life saver.  It's definetly worth a shot.  (pun intended)
I hope that you get some relief soon and/or have a good talk with the doctor about your options.
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82861_tn?1333457511
Just tell your doctor exactly what you said here:  "I know my body, and I know it's time for surgery."  I'm a bit surprised your doctor is insisting on lupron so long after your last surgery.  Usually it's the other way around.  They surgically remove as much of the endo as possible and lyse the adhesions.  The typical protocol is to start lupron AFTER surgery to inhibit the regrowth of the endo.  Six months is the usual time limit for lupron, but I've heard of plenty of women who have been on it for years.  (Legal, but irresponsible and borderline unethical to my mind due to the long-term side effects reported by many women.)  If that's the case, you might as well have a hysterectomy and have done since lupron puts you into medical menopause anyway.

In my humble layperson's opinion, your doctor has this backasswards.  You know what bowel and bladder adhesions feel like, and no amount of lupron is going to change adhesions.  Sure, it will eventually starve the endo of the estrogen it needs, but the adhesions will still be there constricting your bowels and ureters and God-only-knows what else.  

I remember one occasion that I actually got down on my knees and begged my surgeon to do a laparoscopy.  He tried to palm me off on pain management earlier, and it was a huge waste of time and money that left me miserable for several months so I could "prove" myself.  Like you, I knew absolutely that something was wrong even in the face of every test coming up negative, but I showed back up in his office anyway not really expecting any action.  Lucky for me, I was vindicated.  That time it was more endo and adhesions and a hot appendix just to make things more interesting.  Bless his heart, after the surgery the doctor said with a red face, "Well, even a blind squirrel can find a nut once in a while."  I've never had to justify myself to him again and that episode was in 1999.  Since then, he's performed 3 more surgeries and only asked for a CT scan just to cover his rear end - which is more than reasonable.

What do you have to lose by telling your doctor what you REALLY think?  Right now you're receiving treatment that not only isn't working, but is causing more trouble with side effects.  Just be honest without being damanding or combative and invite a true discussion.  Work and family issues are also important, so include that in your talk.  You believe surgery is the answer. That means you need realistic answers on why it may or may not be in your best medical interest to proceed.  No doctor should shy away from a discussion like that.  If that's the case, it's time to find a different doctor!  :-)
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Avatar_f_tn
I know it's been awhile since I've posited, but I have good news.  Well in my opinion it is.  I met with my gyn last Wednesday, and she decided that it's time for surgery since I've had minimal if any relief from the Lupron and the side effects from it are too much at this point.  In addition, the different treatments the pain management clinic have not proven effective.  The best part was that I didn't have to be stubborn and persistent, she threw it right out there on the table.  I would have jumped onto the OR bed the next day, but that's not practical of course.  We're going to wait for the rest of the Lupron to get out of my system, because at the time of surgery she's going to insert the Merina IUD for treatment of the endo.  I feel relieved.  Surgery is scheduled for September 30th, which seems like it's going to take forever to get here, but it's less than a month away.  The pain is still fairly sever, but at least I have something to look forward to.  Crazy that someone can actually be looking forward to surgery?!?!  She said once I'm healed from the surgery, we can then devise a pain management program if I'm still having pain after she removes any endo that has grown back since my last surgery.  Thanks to everyone for all your support and advice.  I feel like this is a small victory, but I'll take a small win over none at all.  
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