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'm having a really hard time finding a pain management doctor that can help manage my pain. I started pelvic pt about a month and a half ago. I am enjoying that. I feel like the physical therapists understand this pain more than any other doctor I've seen. However, pt hasn't given me much relief yet...but I've still got faith!
It's also important to note that I've had a recent increase in pain. No idea what is triggering it, but I'm going on two weeks with this increase in my pain. My regular obgyn thinks my endo is growing back and is visible on the sonogram. I also should say, I had excision surgery in November with no noticeable improvement.
Back to the point of my post... I went to my pain management doctor yesterday. My normal doctor was not in, and I needed to see someone due to this increase in pain. I saw the head of the practice, whom also did my nerve block in january (no change in pain, but agitated my sciatica). Most recently, they've had me on nucynta. I've noticed that it's really not helping me with the pain, and its giving me horrible mood swings. I stopped taking this med about a week ago.
The pain doctor started talking about working me up for tests to see if it is something other than endo. Then, he went on a crusade about how he isn't prescribing anything more than nucynta for pelvic pain. He told me that they are more of a interventional method of pain management (blocks, stimulators ect) than med management. Hmm... well why didn't you say that before the other doctor in the practice prescribed me percocet for 4 months? THEN... he asked if i had ever considered endometrial ablation. WTF?! I'm 24! I want to have kids! I started hysterically crying.
I NEVER want to go back to this practice. They obviously don't understand pelvic pain as well as I thought they did. However, when I was initially looking for pain management doctor, I had a hard time finding a practice that said that they treat pelvic pain. I have an appointment with my reproductive endocrinologist later this week. I'm looking forward to her input.
Is anyone else seeing a pain management doctor? How were you able to find a practice that treats pelvic pain?
It's also important to note that I've had a recent increase in pain. No idea what is triggering it, but I'm going on two weeks with this increase in my pain. My regular obgyn thinks my endo is growing back and is visible on the sonogram. I also should say, I had excision surgery in November with no noticeable improvement.
Back to the point of my post... I went to my pain management doctor yesterday. My normal doctor was not in, and I needed to see someone due to this increase in pain. I saw the head of the practice, whom also did my nerve block in january (no change in pain, but agitated my sciatica). Most recently, they've had me on nucynta. I've noticed that it's really not helping me with the pain, and its giving me horrible mood swings. I stopped taking this med about a week ago.
The pain doctor started talking about working me up for tests to see if it is something other than endo. Then, he went on a crusade about how he isn't prescribing anything more than nucynta for pelvic pain. He told me that they are more of a interventional method of pain management (blocks, stimulators ect) than med management. Hmm... well why didn't you say that before the other doctor in the practice prescribed me percocet for 4 months? THEN... he asked if i had ever considered endometrial ablation. WTF?! I'm 24! I want to have kids! I started hysterically crying.
I NEVER want to go back to this practice. They obviously don't understand pelvic pain as well as I thought they did. However, when I was initially looking for pain management doctor, I had a hard time finding a practice that said that they treat pelvic pain. I have an appointment with my reproductive endocrinologist later this week. I'm looking forward to her input.
Is anyone else seeing a pain management doctor? How were you able to find a practice that treats pelvic pain?
I found that having everything written out and organized helped me a lot when I was looking for a new doctor.
First, I created an "Endo Rsum." This included a brief medical history, treatments/surgeries I've tried, life style changes attempted (both successes & failures), treatments I was willing to try (i.e. acupuncture), and treatments I will not try (i.e. Lupron). And for the treatments you do NOT want to try I would suggest printing out research/articles to backup your concerns. Like for Lupron I just printed off the lawsuits and high lighted the pertinent info.
Now I didn't find this until after I found my doctor, but I thought these were neat. Some of the endo awareness organizations have "pain tracking" worksheets you can fill out and bring with you to your doctor's appointment: You can check out two of them here:
http://projectendo.co.uk/2012/11/07/pain-mapping/
http://www.endosisterhood.ca/?page_id=168
For the first link you just print it out and color the squares where you have pain (red is intense pain, orange is mild, etc...) Then you can show your doctor exactly where you're having trouble.
And lastly I'd recommend being blunt about your pain. If you're missing school or work because of the pain talk about this. I pointed out to my doctor that I'm in a very physically demanding field, and I asked them put themselves in my place: How would they like to miss several days of work a month due to crippling pain? Could they financially afford this? Would it negatively affect their career? What if they couldn't even walk due to the pain?
I know I'm lucky that I finally found a doctor who understands, but it was a really rough road finding her.
I hope you find someone that can help you! Take care, and good luck!
I totally get where your coming from, its horrible when your in so much pain all the time. I never went to a pain management doctor as Lupron and now progestin seem to be working well, altho I still have my days.
for me it helps to keep a schedule, i'm not sure why but when I eat at certain times, wake up and go to sleep at the same times etc it seems to help the pain. Not sure if you've tried that...
Feel Better Soon!!!!