Found when I Google'd 'endometriosis after hysterectomy'...

Question: I have been through several surgeries for endometriosis. The pain kept coming back so my doctor told me I should have a hysterectomy to get rid of the pain. I had the hysterectomy, but now a lot of the same symptoms, including the pain, are back. My doctor says that since everything has been removed it can't be endo and wants to send me to a bowel doctor and a psychiatrist. Can I still have endometriosis after having my uterus and both ovaries removed?

Answer: Yes, but this can be one of the most difficult situations encountered with endometriosis. It can be difficult from the patient's standpoint, because, not uncommonly, she is dealing with a medical profession, family etc. who is really starting to question the legitimacy of her pain. From a physician's standpoint, this can be the most difficult type of surgery encountered by a gynecologist and thus the most likely to result in recurrence of symptoms.

There is no question that endometriosis can be present in a woman who has undergone a hysterectomy and removal of both ovaries (even more likely if the ovaries remain). Performing a hysterectomy does not in itself treat endometriosis. It may reduce the chance of future recurrence of endometriosis, reduce non-endometriosis related cramps, bleeding etc. The key point is that endometriosis, for the most part, does not grow on the uterus, it grows behind the uterus, on the bowel, in the rectovaginal septum, in the pararectal spaces, under the ovaries, around the ureters, on the bladder, etc. If you have undergone a hysterectomy for the treatment of endometriosis there is a good chance you will have persistent pain or recurrent symptoms. The most common symptoms include constant pain, pain with bowel movements, pain with intercourse (usually deep penetration, like he is hitting something inside) and occasionally mid back pain (secondary to ureteral involvement). You can also experience the emotional changes we have seen with endometriosis including moodiness, depression, etc.

Now, assume for a minute that everyone understands your situation (your doctor, significant other, employer etc.) and your gynecologist surgeon is standing there ready to go after the endometriosis. What are the pitfalls? In my experience, by the time a patient has gotten to this point she has undergone so many surgical procedures that is impossible to tell what is and what is not endometriosis. The anatomy is distorted, fairly extensive scar tissue and fibrosis (tough leathery tissue) is present, and often endometriosis is buried out of sight in a patient who has had a hysterectomy performed. The endometriosis gets buried when the surgeon clamps, cuts and ties the tissue during the hysterectomy. The endometriosis that is present get wadded up and buried in this process. After this area heals following the surgery it can be impossible to see endometriosis without dissecting the areas in which endometriosis is known to grow. Another common area for residual endometriosis is the vaginal cuff. It is not uncommon for an area to look normal on the surface, but to have deep endometriosis when opened up.

In summary, you can have endometriosis and the associated symptoms and pain even if you have had a hysterectomy. In my opinion, a surgeon can not get all of the endometriosis and scar tissue.

I'm having a bad week.. I had a physical/mental breakdown at work yesterday, snapped at someone I probably shouldn't have, went home sick and ended up bawling the whole way out of the building. For those that don't have endometriosis and don't understand what I'm going through, I can only attempt to put it into perspective by saying I've had several surgeries, including a hysterectomy, and this pain is about a hundred times worse than it ever was after any of those procedures. I also have the luxury {sometimes it is, sometimes it isn't,} of having a disease that isn't visible, so while there are naturally a lot of people who don't know very much about my disease, there are a handful who make me feel like they think I'm making it up or something. All I have to say to that is that I wish I could still bleed so I could stain the office carpet with it, or collect it in a cup and pour it all over their desks. My husband's suggestion was to gather some pictures off the internet of what endo looks like and put them on a t-shirt that says "this is what I look like on the inside - still think I'm not sick??" I'm half tempted, honestly.

I have an appointment tomorrow with a pain clinic that my doctor referred me to. I don't know what they're going to do for me, as I've already explained I don't do well with narcotics and over the counter drugs don't work, but they assured me that there are other ways to manage pain. That's great, but I wonder if I can afford them.. if it's anything 'experimental' or natural my insurance company won't pay for it, so I'd be on my own there. Then again, I don't know everything {*gasp* the horror!} so maybe they have something up their sleeve that doesn't make me sedated, whacked-out or nauseous. That'd be nice.

Oh, and I chopped my hair today. Got tired of dealing with it, {it was down to my waist} and now it's resting comfortably near my shoulders. It's layered, and kind of cute. I just wanted something easier and to have the dead ends cut off. I also deleted my MySpace account, {not that it has anything whatsoever to do with my hair} - I've always hated that site, and I hate the way people use it as an email account or alternate way to contact me. Why can't you just call, or text message for fuck's sake? Despite what the emerging generation might think, posting a bulletin is not an acceptable form of communication. If you have news to share and you're really my friend, you'll tell me directly.

The doctor prescribed Oxycontin and another (non-narcotic) pain medication, and suggested more surgery. I give up. No one can help me.

Several years ago, I was diagnosed with whiplash and TMJ after a car accident. I've since been in three more accidents, over a period of 11 years. I've suffered more neck and back pain than any sort of jaw pain, and frequent headaches, which seem to be helped with chiropractic treatment. Recently, however, I had a filling redone, and had my mouth open for over an hour.. then, I had to go back in as the filling was way too high and my bite was horribly off {malocclusion}, causing extreme pain. Ever since that appointment, even after it was adjusted down, I still have pain every so often, and when I do, it is severe. It feels like an earache and a toothache at the same time, coupled with hot/cold sensitivity or the feeling like you've bitten a piece of foil, etc., but it doesn't go away. I took 4 ibuprofen, which didn't touch it. So, I spent the weekend resting my jaw, and downing prescription pain medication. The doctor prescribed a high powered anti-inflammatory and told me not to talk, eat cold or hard foods, no raw veggies, no ice cream *sniff*, no gum, hard candy.. and to keep moist heat on my jaw to help with the pain. I am also supposed to refrain from slouching, sleeping on more than one pillow, holding the phone between my jaw and shoulder {something I do often with my mobile while driving,} and sleeping or sitting in any sort of weird position. I am also {obviously,} not supposed to clench my teeth, which is hard for me because I often do it unconsciously when I'm stressed. I am really hoping I can make it through the day without it hurting too badly as talking is a major component of my job.

Right now I'm distracted by a burned finger from my styling iron this morning. The end broke off and my dumb ass grabbed the hot metal, not once but twice.. I am truly the Queen of Klutz.

Some things you find on the internet are just priceless:

"an open letter to this morning's physical therapist

dear [name redacted],

i realize that you've never had a tmj patient before, as you so graciously admitted at the end of our session. (you could have mentioned that fact before, so i could have known to run screaming, but thank you for your eventual honesty.) i realize, therefore, that it's possible that you didn't know where to place the electrodes for the electric stim machine, and that when i observed, "umm, it feels like the muscles over my temples are twitching, not my jaw," your response of, "oh, is the pain lower?" was probably just out of a desire to be precise. and in asking me where to place the electrodes, even though you're the therapist and i'm the patient, you were probably just trying to make me feel included.

thank you for eventually taking out the instruction manual for the stim machine to consult the chart of where to place the electrodes. my face appreciates it, even though the move did not, perhaps, inspire confidence in your knowledge.

but then you (accidentally, i know) elbowed me in the face. hard. and when i cried out, you said, "wow, your face is a lot more sensitive than most of our other clients'."

yes. yes, it probably is. want to know why? because the problem is with my face. it fucking hurts. it fucking hurts even more when you hit it.

in conclusion, please don't hit my face. also, my jaw is not up by my forehead.

thank you.

http://theseorangesilences.blogspot.com/2006_07_01_archive.html