The Doctor Appointment
Posted on Sat August 29, 2009 in Endometriosis
Tags: chronic pain endometriosis
Views: 239
Before the appointment, my husband kept reminding me that the pain wasn't going
to be solved in the doctor's office. We were just going to discuss the next
course of action. But I expected something different than what occurred.
Dr. Nath asked me what I had been feeling. I told her that I was back to
daily pain, distracting fatigue, and pain with intercourse. She listened,
paused, and said "I think you need physical therapy."
I
blinked. What? Did I say anything about back pain, muscle pulls, or pinched
nerves? I said that my girl parts are causing me pain. And you want me to go
do some stretching?
Then she said the sentence that made me cry,
and that she restated much better later in the visit: "I don't think that
the pain you're having is from endometriosis."
I think all of
the air was sucked from the room. I was crying, my husband looked shocked, and
I felt we had been whisked back to January of this year, when no one knew my
diagnosis. Then we let her continue to talk.
She said that the
pain cycle certainly started with the endometriosis. But then my neural
pathways became programmed for pain, and when the endometrial tissue was
removed, the messages to my brain were still sending pain messages. So the
physical therapy would help reset my neural pathways. She knows of a clinic
that specializes in chronic pelvic pain.
If the PT didn't work,
then she suggested we try accupuncture. If that didn't work, then maybe some
Chinese medicine. But she is convinced that my hormones are suppressed by the
Lupron, and that the endometriosis tissue has not grown back. She thinks we
need to widen our view from the narrow window of western medicine.
Ok. I am totally willing to try PT. I will try anything that will help the
pain. But what I hear when she says that my neural pathways are confused is
this: "It's all in your head." I know that is not what she said. I
know that's not remotely what she said. It's just what I hear.
Also, I did have three months free from pain. What was going on with my
pathways then? And I have a psychiatrist friend who says that six months of
pain doesn't re-program your neural pathways.
She did order
bloodwork, to find out if my hormones truly are suppressed right now by the
Lupron. We should know Monday if my hormones look like a menopausal woman or
not.
Anyone out there have experience with this? Do you buy it?
Am I just looking for an "easy" fix and so am disappointed in her
answers? Or do her answers leave you puzzled as well? I welcome any feedback
you have.
UPDATE: Ok, so Dr. Nath called me on Saturday
(impressive) to tell me that my estrogen level was 13. That is definitely a
menopause level. So the Lupron is working, my hormones are suppressed, and
there shouldn't be any endometriosis.
Also, I forgot to mention the
other day that she recommended I drop the add-back from my treatment. That's
the hormone supplement I'm on to help ease the menopause symptoms. So I've
dropped that, and last night had full-on night sweats. Woke up freezing and
sweating at the same time. What fun.
I really appreciate all of
your comments. I'm going to do the PT, but am considering a second opinion, as
well. I respect and appreciate Dr. Nath, but need to see what else can be done.
SO: do you know a great Ob-Gyn in the bay area?
About me
35 / Female
Member since Jul 2009
Profile Views: 935
Journal Views: 6485
regular
About Me: I spent five months in daily pain before finally being diagnosed with endometriosis. I understand the frustration of chasing a diagnosis, and the hopelessness that comes with daily pain. I'm still fighting the endo, as it has no cure (YET!) and I'm trying to share information as I get through treatment.
Location: Mountain View, CA
Interests: Reading, writing, wine-tasting, spending time with my husband, dog, and friends.
Medical Conditions: Endometriosis, depression, severe food allergies, migraines
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stephwebb98 says:
on August 29, 2009 at 01:27 PM
That doesn't sound right to me, either. Not buyin' it. Trust your gut, Sandra.
Carrie says:
on August 29, 2009 at 07:25 PM
has she done xrays and a CAT scan to assure that there was no damage done to the intestines or the digestive tract to cause the pain?
removing endometriosis is tricky because it is so close to other organs especially the digestive tract and a small nick in this area can cause damage and pain.
stacy says:
on August 29, 2009 at 09:59 PM
I hate to say it but I don't buy it either. I have been through the hell of misdiagnosis and that sounds so familiar. I was told for nine months that I had esophagitis. The doctor kept adding meds to my regimine and further restricting my diet and alluding that I must not be complying thoroughly with his rules and implying that 'some people are just more sensitive to pain' or that I had develop some kind of pain cycle. It sent me into a deep depression and I felt utterly hopeless. Doctors are particularly reluctant to change their diagnosis once they've declared something. Once they had finally rediagnosed me and removed my gall bladder, all my pain completely evaporated and never came back. The doc never even acknowledged the hell he had put me through or that he was wrong. I'm not saying your doc is being opaque on purpose but it could be time to ask for more tests or get add another fresh perspective to the mix. I am so sorry you're discouraged and I hope you get resolution soon.
Kailey says:
on August 30, 2009 at 08:30 PM
I know what its like when YOU know yourself better than anyone else and you know how you are feeling and the pains you have are REAL. Doctors have the tendency to "offload" you when they can't think of anything else. The fact is, most of the specialty doctors that treat you, never have the issues they are treating so they have no idea what it really feels like to have it. Going through this whole ordeal as you have and then having the same symptoms with no further answers is frustrating. My sister has gone through 3 doctors, all with the same specialty, for 2 years, to finally get a diagnosis for something that was so obvious. It's crappy, but it happens.
Anna says:
on August 30, 2009 at 10:47 PM
having some knowledge with neuro-phys, there is this thing called "referred pain" that's when you are used to having pain from a certain area for a long time and the synapses ( nerve connections) for that particular pain pathway are highly developed. If there is pain elsewhere in the body, sometimes the neuropathways for the area that normally feels pain is activated, therefore, the pain is being perceived in the wrong area, thus "referred". Her suggestion for a PT is weird ( maybe she meant pain therapist? pain clinic?) either way, there needs to be some sort of "new" pain that would kick off the referred pain and the likelihood that the "other" issue causing the same exact pain, as often as it is, is questionable.
You are right to question why they pain was not there for the first 3 months - one explanation may be the medication, maybe it masked it for a while? also, when your body goes through a shock such as surgery, there will be changes ( sometime lack of feeling pain). Anesthesia can also have side affects months after the surgery.
I would also ask her to do a CAT or MRI of the area to make sure nothing else was damaged during the surgery that can cause the pain. Also, get another gastro dr and evaluate the possibility that the pain can be comming from somewhere else, such as the digestive tract ( I know you'd been through this before but sometimes it takes a few doctors).
I've had endo and laproscopy and I still get the pain once in a while, its a sharp pain on my left side. My periods are also very painful still so I will take a Vicodin during the first day but otherwise, I do not have daily pain. Even before they found endo, I did not have daily pain. It was the exact type of pain I get now, even with the endo removed. I can't imagine having to feel the pain as often as you do and will be just as skeptical and frustrated. You have the right to damand answers, GOOD answers!! hopefully, the endo was not found by default for something else thats going on =(. big hugs Sandra
stacy says:
on August 30, 2009 at 11:28 PM
Wow. Anna gave some good advice there. Good job, Anna. Really great insights. I hope they help, Sandra. I forgot to say that I'm very sorry that you're facing another round of guess-what's-wrong... It's horribly demoralizing and depressing and I'm so sorry the last round didn't give you the relief you had so hoped it would. One more thing... Is it possible that your body can develop a need for a higher dose so soon? I know there's only so much wiggle room with lupron but there are other ways to supress the hormone cycle, aren't there? Mabye it's just as simple as needing to explore a different dosage/medicine to achieve the same basic concept.
sandra says:
on August 31, 2009 at 03:26 PM
Please check out the update. My estrogen level is absolutely low, which means the Lupron is working.
stephwebb98 says:
on August 31, 2009 at 04:01 PM
DR. LANI WARREN! She is a dream, Sandra. L-O-V-E her. In Mountain View across from El Camino Hospital off Grant.
stacy says:
on August 31, 2009 at 05:51 PM
I am a big fan of my OB, Dr. X. Kirby Tran. She is located in the new Orchard Pavillion (at El Camino). She's amazing and very approachable.