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.
Hi ladies,
I thought I would start a discussion. On Saturday I went to my first pain specalist appt. Very different to what you guys have told me about, he had alot of alternative options to pushing me full of pain meds. While he told me, anything he gives me has a 40% chance of working and a 40% chance of not and a 20% chance of maybe a little bit, he has found women in my position to find something effective even if it's just half way.
I have been placed on epilsepy medication on top of my pain killers - I take 1 x 75mg 2 x per day. I know this sounds odd but he explained it that our receptors become so senstivive that over the course of endo growing that e.g a spot of endo is somewhere, it then causes pain but since our receptors are so sensitive instead of sending 1 pain signal to our brain it send 4 or 5...and it's not that the endo isnt there, it is, it's just our brain is being sent alot more then it should. That is why he said, things like tramadol and morphine stop working and we become immune, because we're being sent more pain signals over time. I found the theory very interesting and have been on the medication since saturday and I can notice a slight improvement already. I don't think it'll run miracles, but if I can get to a point of 1-2 pills per day I'll be jumping for joy...or being able to get through a day and come home to take 1-2 tramadol and then rest, that to me is a miracle. High hopes I know, but trying everything is what we need to do sometimes. He hopes though to up my dose to a point my pain meds will only be needed for the days I have my periods (HIGH hopes for him) - this medication does not have the adverse effects like opiads (so no haziness and no constipation!).
At the end of the month/start of October I am to schedual ketamine infusion for 1 day to start and if it does not work, then for 5 days. He has had great success with this resetting nerves in the pelvis..he has a woman come in once every 3-4 months for a 1 day infusion and it helps her pain enough for that time where she takes minimal medication (mainly when she's due for another infusion) - I couldn't believe it. I am extremely willing to try it!
ketamine is commonly known on the street at "special K", it is yes a horse tranquiliser but it is also used sometimes on us when we're under aneasethetic to put us to sleep/ keep us unconscious. However most of us would have only had it for a few hours and thats IF we even had it at all, it's not always used.
I'll keep you updated, but I thought someone might be interested in these approaches, it's something I havn't seen/heard anyone try on this board =)
x
I thought I would start a discussion. On Saturday I went to my first pain specalist appt. Very different to what you guys have told me about, he had alot of alternative options to pushing me full of pain meds. While he told me, anything he gives me has a 40% chance of working and a 40% chance of not and a 20% chance of maybe a little bit, he has found women in my position to find something effective even if it's just half way.
I have been placed on epilsepy medication on top of my pain killers - I take 1 x 75mg 2 x per day. I know this sounds odd but he explained it that our receptors become so senstivive that over the course of endo growing that e.g a spot of endo is somewhere, it then causes pain but since our receptors are so sensitive instead of sending 1 pain signal to our brain it send 4 or 5...and it's not that the endo isnt there, it is, it's just our brain is being sent alot more then it should. That is why he said, things like tramadol and morphine stop working and we become immune, because we're being sent more pain signals over time. I found the theory very interesting and have been on the medication since saturday and I can notice a slight improvement already. I don't think it'll run miracles, but if I can get to a point of 1-2 pills per day I'll be jumping for joy...or being able to get through a day and come home to take 1-2 tramadol and then rest, that to me is a miracle. High hopes I know, but trying everything is what we need to do sometimes. He hopes though to up my dose to a point my pain meds will only be needed for the days I have my periods (HIGH hopes for him) - this medication does not have the adverse effects like opiads (so no haziness and no constipation!).
At the end of the month/start of October I am to schedual ketamine infusion for 1 day to start and if it does not work, then for 5 days. He has had great success with this resetting nerves in the pelvis..he has a woman come in once every 3-4 months for a 1 day infusion and it helps her pain enough for that time where she takes minimal medication (mainly when she's due for another infusion) - I couldn't believe it. I am extremely willing to try it!
ketamine is commonly known on the street at "special K", it is yes a horse tranquiliser but it is also used sometimes on us when we're under aneasethetic to put us to sleep/ keep us unconscious. However most of us would have only had it for a few hours and thats IF we even had it at all, it's not always used.
I'll keep you updated, but I thought someone might be interested in these approaches, it's something I havn't seen/heard anyone try on this board =)
x
To all:
My doctor has heaps of women like me who recieve relief...some don't no but some do. It's scary yes...but it will be in a controlled environment (hospital).
I'm actually surprised none of your doctors have offered it to you...2 of the girls in my support group have tried it and recieved some relief from it aswell.
I'm finding it very interesting that you're finding this "odd" - it's used to reset nerves that are damaged and ours would be with all of whats going on...it's not a garuantee but it can give relief...some of days some for months some for years. All it is 1-5 days in hospital. If it doesn't work you don't do it again...if it gives some sort of help you go back when needed.
I'm kind of disheartened that you're taking this negatively, I thought you'd be interested to hear of something new (been going positively for 2 or so years around the world), something that could help to decrease your pain medication. I hope I get relief and have somthing positive to tell you.
Pain meds do work for me, but not enough anymore..I'm willing to try anything and this has had some positive results it's not like I'm the guniea pig. I understand your concerns, as yes it's scary...but so is the prospect of being on morphine at 21 for the rest of my life knowing things are only going to get worse and I'd be heading towards methadone...Thats not a life.
Hopefully I get some results, which will open your minds up a little.
Also...epilepsy med - http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605045.html
I have had the epilepsy medication suggested to me by my gp but at the time i was unsure about trying it.... have you had any side effects from it?
So far no side effects from the epilsepy medication =) I think the worst would be weight gain but I am watching what I eat =)
I am noticing a small improvement in pain...nothing out of this world yet but small is something! Will continue to update =D
I think it's great that you have a doctor who is willing to try different pain meds like ketamine. I say, whatever works! There has not been enough attention paid to pain relief in general, and pain relief from endo in particular. When my daughter was in the hospital back in Dec. 2010 with excruciating endo pain, the pain management was totally inadequate. I had to continuously beg the doctors to give her adequate pain relief. Toradol, an NSAID given as an IV, stopped the pain, but only for three hours (my daughter had to wait another 3 hours till the next dose). In my research on pain relief, I came across some interesting options (e.g., IV lidocaine and heard about ketamine also), but the doctors in the hospital were not willing to try anything else besides Toradol. I don't know much about ketamine, but I really hope you find some relief from it, and if you do, then maybe other women can mention it to their doctors and get some relief as well.
Good luck, and keep us posted!
I wish u the best of luck in ur treatment, I know everyone is different so I know it not 100% that ull have the same side effects.
*hug from me*
Samantha C.
I have to have alot of blood tests done. Not all the pain can be healed with this ketamine...now I have Stage IV endo, Adenoymosis and Polycystic ovaries...Im wondering right now how it's going to help it all. I'm going to email the man soon and ask. I'm overwhelmed at the moment. my ovaries weren't too bad. Now they're riddled with cysts =(
I promise to keep you updated!
(((HUGS)))