Aug 23, 2014
Yesterday was a hard day. After speaking with me on Thursday and hearing about my lumps and bumps my surgeon wanted to see me ASAP. So I got up yesterday at 6 am (usually the time I am finally getting some REM) and got on a ferry. I saw her, and the nurse, and the counselor. She examined me. She thought I meant the lumps were inside. Since they are not, it is not her area. BUT- she is very concerned. I had just assumed they were another endo symptom and due to the extreme inflammation I was experiencing but she said NO. That every lymph node in my pelvic region is very inflamed and tender, especially in my right groin and between my vagina and buttock. SORRY TMI MEDHELP! I'm kinda an open book right now. It's scary. She said they needed to be biopsied by a general surgeon and I need another full CBC done- especially since I've been running a low grade fever off and on.
She also told me that I needed to be prepared that this surgery would not necessarily 'fix' me, as the last one did. it was merely going to be diagnostic to see what was going on. She's not certain she will find endo as my last scan in August of 2012 was totally clear. She showed me all my pathology reports from past surgeries and explained that she removed everything in 2010. The chances of recurrance are not high. Also, because of how rapidly it's returned and escalated, and because she saw a mass on my last ultrasound, she thinks it may be adenomyosis. If I don't want a hysterectomy and I want to conceive, I am going to have to find ways of dealing with this pain without any drugs.
I realize I'd made some very definite decisions in my own mind. I have endo, I need it removed, then I will go off drugs get pregnant and live happily ever after.
Maybe this is not the case though?
I have decided I am going to get more active in finding non-narcotic pain relief. I have found a series of exercises to release tension in the pelvic floor and calm things down. I have to change my tunnel thinking that this surgery is the answer and be more pro-active.
I am also going to try and lower my dose of the opiates. This will be hard but I'm not going to be working for the next 2.5 weeks and so resting more. Maybe if I change my whole mind set on this and work hard at getting things settled down then I will be able to do this.
In any case, I am going to try.
I know myself very very well. I am going to want off these drugs as soon as surgery is complete (well after a week or so anyways)
I am not good at tapering, I get inpatient.
She told me I can only reduce by 10% a week to avoid throwing my body off so much that I stop ovulating etc. Since pregnancy is my goal I need to be gentle.
I am currently taking 60 mg. That will need to go up for awhile after surgery. So if I can reduce by 20 mg that would mean 6 weeks of tapering which would be just about the same amount of time before I can begin to try to get preggers anyways.
I like this plan. I am a control freak and always need to have a plan.
But then we have the lumps. I refuse to google it as I know it's gonna tell me cancer and all kinds of other crap that I don't think is healthy for me to fixate on right now.
I am going to see my family doc on Thursday and I am going to get a referral and blood work and go from there.
I always feel better with a plan.
I am exhausted. I fell asleep in the ferry line up and slept for four hours in the car (I NEVER SLEEP IN CARS) then I got home and slept 12 hours last night and I am still exhausted. I have not been able to eat a meal in over a week, and my guts are all messed up. I do believe my Crohn's is flaring because of the stress and I need to get that calmed down too.
I NEED to CALM down. By any means necessary.
Calm. Peace. Tranquility. No googling.
I took my house off the market. I've hired other people to do my jobs. I am going to a cabin on the ocean with no wifi. I am going to do the Yoga Nidra every day, twice a day. I am going to substitute 2 of my narcotic doses a day with tylenol and I am going to stay in a horizontal position as much as possible. I am going to let Andrew do all the housework, grocery shopping, and cooking (Poor Andrew)
I am going to do the pelvic floor exercises daily.
I can do this. I know I can. I just have to shift my perspective. I've been panicking and honestly, I have been returning to old modes of behaviour-
Pushing myself too hard and then medicating.
Stopping that now before it's a train that is hard to get off.
I'm sure you will all weigh in with your thoughts and opinions. And I will take them all, and appreciate them all.