Post-Op Visit

A doctor conversing with a black female patient

I went for my post op check on Friday. I spent quite a bit of time talking with the doctor.

First, my pathology report was back. Remember the unidentified deposits? Well biopsy confirmed Endometriosis. Not sure why those looked different to all the other identified Endo and apparently all that he had ever seen in the many years of practice. Anyway, no surprises there, right?

The incisions are all healing well, save one hard tender lump next to the navel incision which I was just told to watch and see. It could be an infection; could be blood/ pus gathering beneath the surface; could be sutures beneath the surface; part of the body’s natural healing process or just as a result of the trauma from the laparascope. I did my own research and all that is correct………….if it starts to ooze or gets bigger then antibiotics, if not it will resolve on its own.

Doc suggested that I wait a few weeks to gauge the success of the surgery and the extent of my pain and then if its as it was before we try Zoladex. Now I’ve used GNRh agonists before and I can’t say that we are on friendly terms. These medicines basically shut down the ovaries and put you in a state or menopause…….with all of its wonderful gifts.

After the hysterectomy, my ovaries were in shock for a while. I had hot flashes and night sweats galore. I also had some of the vaginal dryness (dry doesn’t quite cover it. It was like walking with sandpaper between my legs) 😦

Doc says I will have “add back” estrogen as well. This is apparently to protect against osteoporosis and all the other issues that come from shutting down the ovaries. For me this is tricky because Endo is estrogen dependent so it will be a delicate dance.

The other thing is that we still need to treat the Pelvic Congestion Syndrome. This I have to discuss on my next visit as well. Since I have both things I need to work on them both or I will be getting nowhere.

The PCS is responsible for the physical heaviness, dull aching pains, challenges with standing and walking etc for a long time, increased fatigue as the day progresses and the lower back and leg pains. The Endometriosis is more the sharp and intense pains and cramps that are more cyclical. They both cause bloating, problems with bladder and bowel, painful intercourse/ after intercourse pain, nausea and vomiting, brain fog, depression and so many other things.

Truth is in the midst of the pain I don’t sit and separate one from the other. They both hurt and affect my day to day, period!

So they both need to be treated.

We will probably have to continue the PCS treatment from the venous angle using the medication to shrink the varicosities, which should in effect reduce the level of congestion.

Yes, so much more research to do and so many more battles to fight. We do what we must; this is my life…………no one better to fight for it but me right?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Downward Spiral

8b579087b4fff861bd3c7ae53f5055f6

 

I googled downward spiral and lots of doom and gloom images came up. This one is the most apt to my situation. I feel like I am spiraling down…..

As you know the last few weeks…..probably 8 or so……have been one pain episode after another, after another. Usually, I can say I have about 8-12 weeks without needing to rush in to the doctor or have IV meds although during that time I am in pain and may stay in from work etc.

In the past four weeks since I have been back to work I have been at home a total of 4 days, including today, because the pain was more than I can handle at work. I have been on constant pain meds……….codiene and tramadol, stopped the codiene but still using tramadol as prescribed right now. I usually use the meds as needed as opposed to everyday as prescribed. I have also had some less than optimal days at work, where although I was there and working it was not nearly what I am accustomed to doing. My office staff has been holding my slack, taking my classes, doing most the running around and driving to visits etc. that I would do; just to help me get through the days.

So, things don’t seem to be really improving.

I am heavily impacted by the estrogen levels in my body and both illnesses are worse when the levels are high. I have been in “full hormonal drama” as I call it for the past two weeks. I can feel it all over and the pain confirms it.

I am waiting on and petitioning the doctors to agree to remove my ovaries. I need to shut this down. They are still at “38 = too young”. Yes removal of ovaries so far from menopause has its challenges. I know there is greater risk for heart disease and Osteoporosis is a consideration. I also am aware, that when I have the procedure done I will wake up in surgical menopause which is said to be quite harsh. I also know other women have done it and managed, they lived long, happy lives. They found a way.

However, at what point is quality of life the consideration? At what point do they say that I am missing too much work and my productivity is too low because of the illnesses? At what point do they see that I am worn thin and will soon break? At what point do they acknowledge that I’ve done the analgesics and outside those that I am allergic to I have few options left? At what point do they acknowledge that I’ve done the herbal medicine and acupuncture to no avail. At what point do they acknowledge that yes my gluten free diet helps and works for me but does not make the level of impact that I need it to? At what point do they acknowledge that I have done the Provera, Lupron, Mirena, Hysterectomy, Embolization x2 and still returned to this point after each one? At what point do they acknowledge that I would not elect to have this operation if I had not done all that was suggested and more…………to no avail?

It is only March and I have already used all my sick days for the entire year from work.  I can have more time off but the probability of my pay being docked is very high. That is not something I can afford. That would lead to more stress and illness because creditors will be calling when payments aren’t forthcoming. Its a catch 22. I am trying at work but I know I will have to be off again soon.

A few months before I had the hysterectomy, I became ill to the point where I was off work for weeks; even before the decision was made to go ahead with the surgery. My body just could not do all that I needed it to.

I feel that same way now.

I am trying and working to the best of my ability but everyday it is looking like it is not enough. My brain is functioning well but my body is broken. I don’t prefer staying home but I am exhausted. Most days I get in from work and just go to bed. I have no choice. I need to rest before I can attempt to do anything else. Today, after I saw the children through the door to school, I slept for 5 hours straight after  sleeping the entire night. I’m tired.

I feel like things are getting worse each day instead of improving…….slowly spiraling to……..surgery I hope.

Thankfully, I am not depressed, more-so frustrated. I am not seeing this situation ending in death or hospitalization (outside of surgery). I just believe that the time for delay and questioning has passed. Everything is saying to me that the decision has been made……just have to get the doctors to see it.

My next appointment is March 5, a few days away. I am hopeful that there will be good news and that sometime soon I will be able to have the surgery and have both cyst filled ovaries and adhesions dealt with.

So can this downward spiral be a positive thing? Can it have light instead of darkness at the end? Guess it depends on how you look at it. Yes things are getting worse but it is that fact that may lead doctors to acknowledge the need for surgical intervention.

I will look forward to the light. Regardless of what is said on March 5……there’s no room for darkness………….I will continue to be positive because I acknowledge that the majority of this battle will be won in my mind.