Hi all...Let me preface this with an apology for posting so much about my situation!! It's just on my mind almost 24/7, and I don't know where else to turn. Ya'll are so great to help me feel better, lol.
Since my awful visit with the pain doc this week, I've done a lot of thinking about my situation, and others who have chronic pelvic pain. He really believes that all chronic pelvic pain isn't something that should, under any circumstance, be treated with narcotics.
He even referred to chronic pelvic pain as "psychosomatic." I believe that means, "all in my head." I found a definition stating, "the illness may be emotional or mental in origin but have physical symptoms." OK...correct me if I'm wrong, but I didn't think ENDOMETRIOSIS and ADHESIONS that have my organs stuck together and buried could have a mental or emotional origin!!!!!!!
My question is this: do any of you suffer from chronic pelvic pain? And if so, how are you being treated? I have an appointment with a new PM doc in Jan., so I would like to be a little more knowledgeable before I get on the table this time!!
OH...and a friend has suggested maybe an epidural nerve block to help the pelvic pain. Has anyone tried it, and what was the outcome?
Thanks, and may God bless!
Last edited by painaway; 12-15-2007 at 10:33 AM.
Reason: Forgot something...
Yes, there are actually a good few of us here with pelvic pain. I have had severe pelvic pain since the age of 12. I wasn't diagnosed with endo until my 20's and I have had 6 abdominal surgeries since then, all related to endo.
I see a pain doctor as I have pelvic and abdominal chronic pain. Some is from active endo and adhesions, some is pain that never went away after surgeries. I take oxycontin 10mgs 3 times a day, and percocet 7.5 mgs twice a day. They allow me to increase the break-thru meds when I have a period, which is every 3 months.
Any doctor that tells you he won't treat pelvic pain with narcotics is the "worst type of idiot." I am so sorry in this day and age, when the knowledge of endo is SOOO much better, that you still found one of these idiots! Makes me mad just to hear that crap! GRRRRR!!!!
I am only 30 years old, and I have nearly RUINED my stomach taking loads of Motrin 800, Aleve, Ponstel, Torodal, Celebrex,.......They have an NSAID, I've been prescribed it. Guess what?? Doesn't relieve serious pelvic pain.....AND causes ulcers! No doc told me that. It was just a bunch of "well here's 10 pain pills, but no more because they're addicting. I will refill your Motrin 800mg though, with 12 refills...." Idiots.
So now we are in 2007, nearly 2008. There are pelvic pain specialists, endo specialists, and pain management specialists. There are good ones, and there are bad ones. The good ones know that pelvic pain can be all-encompassing, debilitating, torturous, and can steal your everyday happiness and quality of life. THOSE doctors will help you. Period. You just need to keep looking. I know it's a crap shoot, but many doctors DO understand the pain endo causes. I am NOT having more surgery, and that is my right. Therefore, I have the right to have my pelvic pain managed. Repeat that.
As far as the epidural, I have only had one. I ended up with a spinal headache, chemical meningitis, and two weeks on my back. Never again. But that's just my experience. I have read of others that get some relief. Educate yourself as much as possible. Only let a specialist operate, and only those who do excision surgery. And remember, surgery is YOUR choice, not their's. We all know surgery may, and may not help the pain, for a short period of time. I can tell you from experience that multiple surgeries as a way to control endo pain, simply causes more adhesions, more scarring, MORE CHRONIC PAIN. I now live with chronic upper abdominal pain AND pelvic pain.
Sorry for the rant, and I hope some of that helps! Geez......I didn't know I had all that frustration in there.....LOL
Last edited by butrfligirl28; 12-15-2007 at 03:08 PM.
I'm soo sorry for what you are going through.....I've been there. This may not be the answer you want to hear, but, I had my right ovary removed at age 14 due to polycystic ovary syndrome and severe adhesions. Well, I went 4 more years of shear agony (along with my primary pain problems, my kidneys.....lots of stones, and by that age, over 35 surgeries for them, with 7 of them being open surgeries requiring an insicion from hip to hip).
Ok, back to the female problems. At age 18, and multiple courses of narcotics/antibotics later, I couldn't take the painanymore!! My left ovary, uterus, and left tube were removed. I had another severe poly cystic ovary with hemmoraghic cysts, chronic inflammation of the uterus, chronic inflammation/adhesions to my tube, and finally, SEVERE endometriosis with multiple uterine fibroids that had to be cauteriezed. The doc had to cut through 2-3 inches of scar tissue just to get down to the uterus. From my previous surgery where the right ovary was removed, he said my uterus had "shrunk" and now looked like an infantile type uterus.
He said there would have been "no way in hell" I could have ever gotten pregnant. Let me tell you, Pain, this was the BEST decision I have ever made!! For the first time since I was 13 (that's when my period started and I had problems from day one...not just cramps, but horrible, unrelenting pain that only Percocet would just take the edge off) I felt like a human again. Aside from all the other pain from my kidneys, and eventually, my left kidney was removed in 2006 and my right one is currenty failing.
I would have done it ALL OVER AGAIN!! This may not be an option for you, but please just think about it, ok?? I'm fine with not being able to have children, and so is my husband of almost 8 years. We couldn't be happier!! We have 3 cats and they are our "children". LOL Not to mention all the wonderful nieces and nephews we have!!
My ob/gyn was VERY LIBERAL with the pain meds, even on a 13-18 yr. old. I just couldn't handle the pain anymore, ya know?? Sometimes, my periods would last for a month, no joke. It was like a volcano flow! Other times, I would just spot for a day, and that was it.
I know this is a VERY, VERY, delicate subject and decision you might want to consider. I just hate to see someone else in that type of pain I know ALL too well. I'm here for you, girl, ok?? Anytime you need to talk, vent, cry, whatever....you got a friend in me!! Please keep me updated, if you want. I know this is a very private subject. I'll keep praying for you, if that's ok. Take care and bye for now!!
I too had severe endo and was in horrible pain from the moment I started menstruating which was at 11. I suffered through my teen years with no help. I started getting cysts that would rupture and I'd end up having emergency surgery (3 times) to stop the bleeding. Once I ended up with peritinitus. They decided to remove my left ovary and see if that would help. Then I went on a course of Lupron and that made it worse. None of any of this made it better. I was in such severe pain. I had to withdraw from 2 semesters of college due to it. The summer of my junior year I was doing an internship and ended up in the hospital. They flew me home and at 21 years of age I had an emergency total hysterectomy.
With my other surgeries I would ask them to just kill me the pain was so bad. After the hysterectomy I woke up and for the first time in 10 years had no pain. I was up and walking THAT day. I felt so good! In 7 days I did an aerobic marathon. That might not have been a smart decision but I felt like a new person.
I've been lucky with as many surgeries that I had abdominally I don't have any pain there from adhesions or anything. But during that whole time I was usually on percocet and tylox, and when I was in the hospital, demerol.
I am so sorry you are having a hard time finding a doc and I would run as far and as fast from that idiot that told you he doesn't treat pelvic pain or anyone your age. You will find someone, it just take some time to find the good ones.
Amanda...Thank you so much for your reply. I can SO relate, and we are the same age. It gives me hope to know there are doctors out there who will treat my pain. The last 2 GYN docs I saw recommended a hysterectomy asap, but I just don't know if I'm there yet (emotionally). I know, I may not
have a choice, but right now, I'm trying to decide and pray about it.
Boxer...Thank you so much for your reply, too. I can relate to the Lupron, etc. NO FUN. It helps to hear that you found relief after the hysterectomy. Maybe that will be the outcome for me one day. I fear, though, that the adhesions will become more after another surgery, though, so I'm being really cautious.
Friendly...Gosh, you've been through the ringer, too. (All three of you have...Amanda and Boxer included.) I can relate to most all of what you said. (Hold your ears, men...cause I'm about to get graphic, lol.) Girl, I bleed almost 3 weeks out of every month, and the cysts are bad...even on birth control. I went last month to the ER, because I just KNEW I had appendicitis. I had the whole right-sided pain thing with indigestion, etc. Well, it was just a big cyst, and a bunch of fluid from one that had already ruptured.
Thank you all again for the encouraging replies. I appreciate the prayers, too. I will definitely be praying for ya'll as well. I was thinking about writing a letter to the doctor who was so uncaring, but really, it would probably just be a waste of my time.
I went on a course of Lupron and that made it worse. None of any of this made it better. I was in such severe pain. .......They flew me home and at 21 years of age I had an emergency total hysterectomy.
Man, our story is so similiar except I ended up with severe adhesions and they had to do a clean up surgery from the adhessions after my hysterectomy.
That Lupron caused me more problems and you are the first person that I have run into that experienced that as well. I felt like it accelerated my problems.
Thankfully since my clean up surgery....I no longer have any endometroisis pain. PRAISE GOD!!
Girl, I bleed almost 3 weeks out of every month, and the cysts are bad...even on birth control. I went last month to the ER, because I just KNEW I had appendicitis. I had the whole right-sided pain thing with indigestion, etc. Well, it was just a big cyst, and a bunch of fluid from one that had already ruptured.
I had the same bleeding month after month. I even found that one week without my period I suffered dearly from cramps and was miserable toward the end.
My hysterectomy and that final clean up surgery was the best thing I could have done. It gave back my life....I got married and adopted two beautiful children -- Thank you Jesus!!
I pray that you find a caring compassionate doctor. I went thru many, many unsympathetic doctors until I found my last doctor. He was a God send and if I ever have any more problems I would fly around the world to see him. He was AWESOME.
Unfortunately I now suffer the wrath of multiple spinal surgeries.
I have added you to my prayer list. Please keep us updated.
I've had chronic pelvic pain since I was 16. I'm 43 now. When I was 25 I finally went to the GYN. They found a 10cm cyst. They took that and the fallopian tube out. After that I had pain. They said probably scar tissue. Then I had a C-Section in 1994. In 1995 the pain got worse. They found a small cyst and the watched it. It kept getting bigger so they operated again. Both were C-Section cuts. That time they took out rubber bands of adhesions. The dr. said adhesions were on my bowel, bladder and everywhere else. Sure enough the pain is back. It did get better after they took them out. The only help would be more surgery but it would only keep coming back. Now my back and leg hurt much more. I had read years ago that they were using some kind of mesh with scar tissue. After they take out they put mesh in. Then the scar tissue adheres to the mesh and not the organs. Guess it never made it over here.
I had a hysterectomy a few months ago....and guess what? No more pelvic pain...
...it's not all in your head. Some doctors are just plain crazy.....pardon me, but maybe your doc needs a swift kick in the bleeps-then tell him it is in his head. (I am assuming we are dealing with a dude here...I can't imagine a woman saying pelvic pain is fake?!?!?!)
I had adenomyosis and adhesions from a previous surgery. I bled two to three weeks at a time and would finally stop...just to turn around and start again! It was making me crazy...literally...and anemic. I also suffered from menstral Migrains. So, for three weeks out of the month, I had pelvic pain, head pain, and back pain! It was a party!!!
My hysterectomy was the best thing I have ever done. I feel great, have so much more energy...and it even helped my back. It's strange, I feel healthier...it's almost like my uterus was leaking toxins into my body...I know that sounds nutty! It does take a while to recover...and you MUST give your body the rest it needs in order to recover, but in my opinion, when you are ready, it's worth it. I know it is a hard decision...as corney as it sounds...it is taking out the very things that "make" you a woman. But once you are through having children...give it some thought. It made a world of difference for me.
Best of Luck and I will be praying for you as well.
Hey, OMG when I saw your post I felt so bad for you, I have the same thing as you do, endometriosis, also I have adhesions on my bowels and bladder. I have taken narcotics for it ever since my diagnosis about a year after my daughter was born. I am shocked by a doctor who would suggest pain caused by this could be psychosematic, ugh!! that makes me so mad
I have tried all the other meds and procedures they reccommend for this kind of pain including the epidural block, it did nothing. They have pretty much figured out that with all the injections medications and surgeries, that my condition has just continued to get worse instead of better. I wish I had researched Lupron more before I took that, the side effects were horrible!
I had to go along the the pain management clinic with all of the physical therapy, and other wastes of time and money. At least during that time I was being prescribed codiene to help with the pain. Now I have a new doc that prescribes me as much Vicodin as I need, and trusts me to use it responsibly. It's been a long road, but so worth it, hang in there and try and find a new doc, even if you have to see dozens before you find a good one, it will make your life a thousand times easier ( and more comfortable ).
It looks like there are quite a few of us dealing with this condition, and the fact that it makes most of us infertile is another cruel part of the disease that we have to deal with beside the intense pain and menstral problems. I feel lucky that I have two kids, and I didn't start having symptoms until I was thirty.
Having a hysterectomy is one choice that I'm facing now, and from what I know after so many years with this disease ( going on seven) really the only thing that can put an end to this suffering for us. Personally, I'm scared about the effects that surgery will have on me as far as needing HRT, and I fear not feeling like a woman anymore, not being able to enjoy sex, things like that. It's just so final, and it's still possible I could still have more children with fertility treatments. The doctors also say that if you can get pregnant, it will help and even sometimes make the endo much better, something to do with the hormomes your body produces.
Anyway, sorry this is so long, I hope any of it can be helpful to you, and I wish you the best of luck finding a good doctor who understands what you're going through.
It really makes me sad when I read that some women feel that without their uterus they just "aren't women anymore".!! C'mon ladies - let's give ourselves a little more credit than that!! One huge muscle in our bodies does not a woman make!! But, I also understnad how that has been droned into our heads for thousands of years - we need to reject that nonsense! Anyway, I had a complete hysterectomy at the age of about 23 because of endometriosis, adnomyosis, fibroid tumors, chocolate cysts (hemerogic cysts sp?) and loads of adhesions from previous pelvic surgeries starting at age 17. Thank goodness that I had already had my one and only child before the hysterectomy. My life was completely different after the surgery - the suffering ended and I've never regretted the decision for a moment. One point I'd like to make - not every woman is aware of the fact that if peices of endometrial tissue are left behind (on intestines, bowels, bladder, even up into the lungs sometimes) and the ovaries are still intact, a hysterectomy will not prevent these endometrial cells from continuing to bleed. The endometrial cells grow and swell as a result of estrogen in our systems. If you are also producing progesteran or are taking it in pill form, the endometrial cells will respond just like the lining of your uterus. So, if you continue to have severe pain even after a hysterectomy you should follow up with your doc. Anyway, I hope I have my information correct - that's how it was explained to me when I was making the rounds of the gyn's in search of a solution to my suffering. I have great respect for women who manage to live their lives while dealing with this horrible disease. Memere (K'Mac)
Kathy is right. I have endo on my bladder, ureter, colon, both ovaries, tubes, cul-de-sac, and uterus of course. Like she said, a hysterectomy is NOT a cure for many women. I am so glad that hysterectomies have helped so many, but I have heard of too many women who gave in to a doctor too quick to "take everything and cure you." Then the reality is that they had a hysterectomy, but still have endo and pain.
Painaway, I am like you. I am also not ready to "give up" on having children. It is so daunting though. Everytime I think about all I have to change, just to try to get pregnant, it is SO overwhelming! I am now on chronic pain meds and have been for over two years. So my body is dependant. I would have to stop my pain meds, my birth control pills (obviously, but they help by skipping some periods), Cymbalta, smoking, and caffiene..... Whew....I have a feeling I will not be a happy person for a while! LOL
My birthday is in April. I stated a few years ago that I had to start trying by 30. Well, my fiancee and I still didn't have a house, and no where to put a baby! We are in the process of buying one now, and I pray 31 is the magic number! I have heard for literally years, "If you want any chance of getting pregnant, do it NOW!" Well, we both know life doesn't work that way.
We are in the same boat, and nothing would make me happier than God blessing us both with children. After all the pain and suffering we've been through, we deserve at least a chance. Thanks for your post. I don't feel so alone now either. We are sisters in this disease. Look at all the wonderful women we have for sisters.
Amanda...I'm so happy to know we've got each other!! (And all of our wonderful friends on the board!) I was able to conceive after 5 years. I didn't think I'd ever get pregnant, with all the CRAP I've had wrong with my "parts", lol, but the Lord always has a perfect plan. I was to the point that I was ok with adopting, if that's what He wanted for me. When I say I don't know if I'm emotionally ready to have a hysterectomy, I just don't know if we would like to try to have one more, or if more problems (hormonal) would come with a hysterectomy. And, I worry that it would just cause more adhesions, which would make me even more miserable. I don't know.
I will definitely pray for babies for you, though! I know it seems so hard to think about coming off of your meds, but you may not have to come off of them all. My OB rx'd hydrocodone during my pregnancy, because of the severe sciatica (numb toes and all), where the baby was pressing on the sciatic nerve...which was on top of the pelvic pain. Actually, I found that pregnancy hormones made my pelvic pain more bearable on most days! Anyway, the OB said that they bypass NSAIDS and use narcotics for severe pain in pregnancy. Amazingly, Motrin (Ibuprofen) can cause more harm to the baby.
I'd talk to your OB/GYN about what you'd have to stop and what you could take. I know the perfect scenario would be to be off of all meds, but as my doc put it, sometimes, your pain can cause more stress/harm to the baby. Alright, I've written another book. Sorry!!
Hope you're feeling good today!
Last edited by painaway; 12-18-2007 at 01:57 PM.
Reason: add a sentence
oH MY GOSH i was so excited when i saw this post. I to have suffered with endo, and adhesions. I had my second surgery in July and I'm still suffering. I am currently on lortab for the pain but trying to stay off of it since I want another child. My husband and I currently have one child and she is 10 but since then I have been unable to get pregnant. I have been given the option to have a hysterectomy but I still want more babies ....well maybe one baby. I'm trying some other options right now and if they don't work then I may try Clomid but I guess at 33 they say your chances of multiples are higher.
I to am sick of the pain and and the way some doctors think "it's in your head". If I had one wish is for one MALE doctor to experience just one month of what we go though. They would never make it!!!!
Aw, Winnie, I'm so glad you wrote! Wow, what a similar experience. I know exactly how you feel with the hysterectomy decision. We finally conceived after 5 years, and then 2 years later, had my other child. I don't think I'm ready for a hysterectomy. I know I have 2 children, and I may not need any more, but I'm just scared to take that option completely away. And girl, the risk of having more adhesions after the hysterectomy surgery is HIGH, so will we even feel better afterward? I just don't know. I say we wait as long as possible. I think I feel worse after every surgery. Not right away, but after a few weeks have gone by and the adhesions start to form again.
Yeah, "in our heads" is how some doctors view it...usually seems like male doctors. I guess we can "think real hard" and endometriosis and adhesions just appear!! My gyn is hilarious, and he was trying to explain to my husband how it feels for my ovary to be stuck down with adhesions. He said something like, "It's excrutiating for her to have intercourse because of this ovary that is buried under adhesions. See, the male testicle is a VERY similar organ. So, look at it like this...imagine me tying your testicle to your leg and telling you to RUN!! That's how she feels." LOL...I rolled!! He's a hoot.
Anyway, I want you to know I'll be praying for you! I had to take Lortab during some of my pregnancies, and it was even prescribed by my OB. If you hurt, you hurt. You've still got some good years of "trying" left, and I believe you'll be successful real soon!
Thanks again for writing. Good to know I've got another friend in the disease. There are several others on this board, too. God bless us all.