Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
I've had endometriosis since I've been 12 and had no idea what the pain was. I was diagnosed at last when I was 25. I had a surgery to have my totally destroyed right ovary removed (and a 3lb mass of endo scar tissue) but the doctor could not remove the rest of the endo without giving me a total hysterectomy, which my mother's doctors talked her out of doing. So my left ovary and the rest of my uterus still contains endo. And it HURTS LIKE HELL! I have been on a fairly steady supply or Lorcet (10mg hydrocodone/650 tylenol) for about 3 years now, but lately it hasn't been doing ANYTHING. My family doctor, the one who normally prescribes the pain meds, says he isn't allowed to prescribe anything else.
I'm going to a psychiatrist, who is supposed to help with the anxiety and help me find a pain management specialist in a week. I do not, nor have I ever, abused the narcotics. I take them as prescribed. Will a pain doctor prescribe something that works better or will he attempt to find another way of relieving the pain? Another surgery is out of the question. I am not ready to give up my chances of having children.
Yes, I understand that after 3 years on hydro (even though I take it as prescribed) that I am likely addicted and that withdrawal will be hell. I have had zero side effects from taking it, however, and it DID help a lot for the first 2 years. My family doctor gave me Percocet 10mg once and that was amazing. It was like endo had never existed, but I do not expect to ever get that. I have also tried Dilaudid (given to me by my ill grandmother, NOT from the streets) and it helped as well. Should I tell the psych/pain specialist all of this?
In other words, what do I do when 10mg hydrocodone no longer works for the pain and another surgery is no option?
I'm going to a psychiatrist, who is supposed to help with the anxiety and help me find a pain management specialist in a week. I do not, nor have I ever, abused the narcotics. I take them as prescribed. Will a pain doctor prescribe something that works better or will he attempt to find another way of relieving the pain? Another surgery is out of the question. I am not ready to give up my chances of having children.
Yes, I understand that after 3 years on hydro (even though I take it as prescribed) that I am likely addicted and that withdrawal will be hell. I have had zero side effects from taking it, however, and it DID help a lot for the first 2 years. My family doctor gave me Percocet 10mg once and that was amazing. It was like endo had never existed, but I do not expect to ever get that. I have also tried Dilaudid (given to me by my ill grandmother, NOT from the streets) and it helped as well. Should I tell the psych/pain specialist all of this?
In other words, what do I do when 10mg hydrocodone no longer works for the pain and another surgery is no option?
In my experience, taking 5mg Percocet is about the same as taking 10mg Vicodin. They would rather have you take one pill than two, especially since you need to be careful about how much Tylenol you ingest per day.
If your family doctor says he's not "allowed" to prescribe anything else (which by the way sounds really weird to me and kind of like the situation is that he'd just rather not), you may want to consider seeing a gynecologist at the very least, but preferably a reproductive endocrinologist who specializes in endometriosis. I see both and neither ever has a problem prescribing narcotics when necessary. As long as you're not running out of pills every few days (aka taking more than prescribed), you should be okay. Good luck, and I hope you can get something that helps soon!
Yes, my family doctor hates prescribing controlled medications. It isn't that he's not allowed to, he just hates prescribing them. He even pushes against giving me my Klonopin, which I have been on for 5 years. He tried to deny me that once, but I had to remind him about the side effects of benzo withdrawal. He is NOT a good doctor, but he's cheap and DOES script the stuff, even if he doesn't want to.
I will talk to the psych/pain doctor and see if I can get 5mg Percocet. If not, I suppose I will have to make due with Lorcet. My OBGYN simply wants to do more surgery to get rid of it completely, which is out of the question for me. She will not prescribe anything except 5mg Vicodin, which does not work, unless I have the hysterectomy. She also told me to take my mother's Celebrex, which has to be against some type of law about sharing meds....
Just because you take it for a certain amount of time, doesnt mean you're addicted at all. If you're taking it for severe pain, thats what its for...you cant suffer. It sounds like you're taking it as indicated, so I wouldnt worry about the addiction, but always be mindful.
Percocet or Oxycodone makes me throw up, and Ive only taken it after surgery's. You can get a stronger Hydrocodone dose; Hydrocodone ES which is 7.5/750mg so thats 25% more of hydrocodone and 750mg of tylenol, so thats a lot of tylenol. I was told by Dr. and pharmacists no more than 4000mg of tylenol a day. But it may help more for your pain. Ive taken it many times, and it helped more, but I chose to take hydrocodone 5/500 and still feel some pain. Also its important to have your liver and kidney function tests every couple months due to the meds.
I should also let you know that sometimes pain specialists dont prescribe narcotic pain killers...i had a pain mgt dr who would only gave me Tramadol. She said she only gave out narcotics for cancer, so that wasnt so helpful. I take Tramadol for my chronic pelvic pain, so Id get that from her, then Id get Hydrocodone from my Dr.
I didnt like that method, I wanted one Dr. treating my pain, so I found a Dr who would manage my pain...this new Dr's plan at first was to switch me from hydrocodone to percocet (I nixed that quick because i wasnt comfortable, and felt the hydrocodone was enough)...her 2nd plan was to have me take hydrocodone every day and cut out Tramadol! I was so against it, but she pretty much wrote an RX and said "just try it" and left. So i took it every day (obviously smaller doses and less often than during my period or severe pain), and hated it! I called her a few weeks later and told her I was not comfortable on hydrocodone every day, and it was making me feel awful...but that for my period and severe pain i would take the trade off! But not for my moderate pain!
I once read an endo Dr. wrote that having severe pain and exhaustion from endo is very similar to a patient suffering and dying from cancer! So, we are entitled to lessen our suffering!
I agree 100% with everything kDeezy said; be very careful of the tylenol! you can get hydrocodone and percocet without tylenol and add tylenol if needed. I found that more helpful for me...but with my period I get fevers so I need some tylenol. Also like she said it is suspect your Dr. said he's not allowed to give you anything else. Thats where a good pain dr comes in, or RE. They're more likely to understand endo pain, and how severe it can be.
Heres a link to a list of pain killers by strength you may find helpful;
http://www.vaughns-1-pagers.com/medicine/painkiller-comparison.htm
Its very good you're going to a psychiatrist...my endo/pain Dr. said it was imperitive to have a therapist or psychiatrist when you're suffering so much from endo! Its helpful, because I have panic attacks and a lot of anxiety. I also talk to a therapist, and I love her. Im glad you're taking this step!
Im sorry you're having so much pain, and I completely understand! I hope you get help at your pain mgt appt! Keep us updated! :-)
I am shocked and disgusted your Dr. told you to take your moms celebrex! Would that even help??!! I mean like you said its against the law WTF?
I understand you dont want to have another surgery, Ive had a lot of surgery for endo and endo related issues. BUt at some point it may be very beneficial to seek an endo specialist and get excision surgery...they can remove pretty much all of it with their specialized tools. Some RE's do it, not many, and its VERY rare for regular OB/GYN's to use excision. When you have severe and a lot of endo, cutting it out is the gold standard, and it has really helped a lot of women who've suffered like us. It helped me for a whole year, almost! It came back so quick because i have an agressive case of endo, and even on BC pills, it didnt matter. But it gave me somt time! Im grateful for that, and will do another excision lap within the next few months.
Anyway, i would never tell you waht to do...but its just a suggestion and thought for the future!
Also, if you see a pyschiatrist (and some pain mgt dr's), will want you to try an anti depressant for pain. It helps some people. Apparently im allergic to something in them, so i cant take them. Im just trying to think of anything that might help you.
Also, when you see an RE you should explore the option of having surgery again. A skilled surgeon can absolutely remove endo without giving you a total hysterectomy. Yankees and I are actually both walking proof. We both have severe endo in places that most doctors won't touch (bowel, specifically) and we both have had specialized surgeons who were able to remove it while leaving our parts intact.
I'm so frustrated for you, it sounds like your doctors are really ill-informed. Based on your profile, I did a quick google search and came up with this: http://www.slu.edu/obstetrics-gynecology-and-womens-health-home/general-gynecology-obstetrics-and-womens-health/our-specialties/center-for-endometriosis#.Ua0RqrVQG1I I hope you check it out and look into finding a doctor who can actually help you. Please keep us posted, and don't stop advocating for yourself!!