March 2018: I’m 1 in 10….Oh the Irony!

1 in 10

March is Endometriosis awareness month. Right now, all around the world, women are lobbying, campaigning, telling their stories and getting ready to participate in the worldwide Endometriosis march.

So, I should really be writing an empowering, disease busting, Endo warrior blog post today….Yes?

Sadly, all that I can write is a frustrated, confused, miserable post ……. through all the tears I am not allowing to fall.

Its difficult to look at my Endometriosis on its own. Since I have both this and PCS. I can distinguish the differing pains; I can identify particular symptoms that are specific to one and not the other. However, just as my treatment cannot be isolating of one illness in favor of the other; neither can my posts.

Today…………right now…………. I am pissed….but you know the Psychology and my being all in my head…all the time. I know that anger is a secondary emotion. When I unpack this I am deeply hurt, I am sad, I am scared, I am frustrated. I told someone today that I feel like I am sinking and am unable to thread water. I feel helpless.

Since the surgery last year, when my left ovary, bowel and pelvic wall were separated I have felt some relief in terms of the stretching, tugging ………………constant pain. So, the surgery helped in that regard. However, I am still battling the pain…………………….each and every day. The Endometriosis pain and the PCS pain. Each constant, each debilitating and each unwelcome.

I know we try to be optimistic and not call trouble and issues but all of us who live with these conditions know full well when things are spiraling downward. So I knew, I know…..I just wish I didn’t.

Over the past month or two the pain has been extending over more days and I have had less good days ……..but you know me, I push……and push……….and push. Last time we made love I got the distinct impression that something was different inside. Remember, I wrote about the sex or lack of in Sex………Love to Hate to Love It!!! So, any sex is welcomed for us both. What I felt wasn’t anything that made me stop but it was enough for me to take note.

As usual, when the plateau ended and my endorphins fell, the pain began. I expect and accept the pain…………..well once the sex is good….or better than that 🙂 . So, I took my meds before and have been consistent with them ever since. The pain is not responding to the meds as it should and that made me wonder what else was amiss.

Sidebar: Did I mention I got a TENS unit? Don’t think so. It’s absolutely amazing! I’ve been using it and it does help loads. It gives me hours in my day with reduced pain. Where I would have to take fast acting morphine, layered between my prolonged release daily prescription; I can use the TENS instead.

Anyhow, when I assessed the situation, I initially thought that I had developed a cyst that had become problematic. Since, I developed the poly-cystic challenges, I have had a few of those cysts that brought extreme pain and then ruptured on their own………..with enough intensity to drop me to the floor, unable to do anything. So, I thought that was the case.

Then, I stopped everything and really connected with what I was experiencing………………it was at this point I realized that the pain was the same I felt before the surgery last year. The same stretching and tugging when I shifted in a particular direction, the same sharp pain down my legs, the same issues with even the slightest amount of urine in my bladder…………………..every-thing that I knew…………what I thought was gone………….it’s back.

Rationally, I know this, I understand Endometriosis and scar tissue and adhesions and just about everything else about my  illnesses. Yet………….I still hope/ hoped that at least the improvements would last longer.

Truth is surgery causes adhesions and surgery “fixes” adhesions.  I knew going in that This was the likely outcome……….I still spent the thousands and had the op done……just hoped for at least a year.

March 2018, Endometriosis Awareness Month. I am the 1 in 10. I say this not with pride or dread………….it’s just a fact. It is what it is.

Right now however, I wish it wasn’t 😦




Post – Surgery Update


I arrived at the hospital just after 10:00 a.m. and was immediately processed in by the staff nurse on duty at the time. She informed that the doctor was already in theatre with another patient and that she had been looking for me earlier.

We went through the usual review of all documents and anaesthetic checks and then I changed into a gown, anti embolism stockings, booties and head cap; got the IV attached along with the blood pressure cuff and waited until I was to be escorted into the theatre.

I walked into the operating room and proceeded to lie down and prepare for all that was to come.  The last thing I remember was the Anaesthetist saying that they were just about ready to proceed because I was going under and the oxygen mask being put over my nose and mouth.

The next memory after that is being pulled from the most exciting dream by people calling my name and becoming aware of the most intense pain and feeling as though I was about to freeze.

Sidebar: This is always my experience coming out of anaesthesia. I am always dreaming and not immediately aware of being in hospital and I am always cold; cold till it hurts.

I tried to talk but my teeth were shattering and my legs hurt like I could not remember them ever hurting before. The nurses covered me with the electric blanket to get me warm quickly and the doctor came over to examine my legs (they had told me to bend them and I could not get it done, I tried but was unable to move them).

Looking back, my feet (legs) were placed in stirrups for the entire procedure, which was around two hours. Not your ordinary GYNAE office type. these ones held from my knees down in a special boot to keep circulation going. I was positioned as in the photo….my boots were a bit longer though.
933267_dMy thighs were rebelling from the pressure placed on them for such an extended period. After another 15 minutes or so I was able to bend my knees and move my legs however I chose. Despite all this progress the pain was not easing enough for me to rest and I was just too groggy to be discharged anytime soon. I ended up being admitted to the ward and spending the night in hospital. I didn’t sleep much since I was monitored- vitals taken etc. and medication given every few hours or so.

The Results??

Well the doctor’s words ” we didn’t find much in the way of Endometriosis”. No surprise for me there. That should be he didn’t find much that he can identify as Endometriosis. What he definitively identified was excised. However, he did say they found numerous “unknown” deposits throughout my pelvis. Those were also “cleaned up” but most sent to pathology for examination.

Secondly, my ovaries were left intact…yeah (NOT)…sigh….because all the cysts had disappeared and they looked fine.

My left ovary was stuck to the bowel, which was then adhered to the pelvic wall. There were also numerous other spots of adhesive tissue/ bands which were cut and the scar tissue removed.

In effect, there was more to be done than I anticipated.


Well its been just about 7 days and I am slowly improving. The 5 incisions are healing but they still hurt. I am able to walk around the house but tire quickly. I have been mainly just resting and taking my pain meds.

It will take a few beats for me to really gauge the success of the procedure and improvements. However, I can say that the separation of the ovary, bowel and pelvic wall has been immediately noted on my end. Whereas, before the op I would have  a BM and feel the stretching and most times have cramping and have to lie down for a bit; since the op I have not had that experience… stretching…… cramping….no pain. So, that’s one positive!

Beyond that, I am hopeful and I do believe that overall things will be better……….especially with the pain.

I have no delusions. Whether Endometriosis of Pelvic Congestion Syndrome; both are chronic, progressive and degenerative. I take whatever I get from the procedure and move on. Continuing to fight, advocate, research, learn and grow. I know that whatever happens God’s got this …………..and that’s good enough for me.

Painsomnia x 10

03ee38f1975521f2744a718f7a3dc10aWhat I would give for a good night’s sleep!

These past few days have exceeded my expectations once again as far as the levels of pain and challenges I have experienced goes.

Last week I had this delusion (will have to call it that now because that’s apparently what it was) that I was going to be able to just set this house/ life in order in prep for my surgery on Wednesday May 10. Well I wrote what happened on Wednesday last week in Thankful for friends who stay.

I never mentioned the blacking out from the pain- good thing I was in bed. Neither did I write about the doctor coming to the house on Thursday and setting up the IV- I was at my wits end- actually I haven’t said much because it has just been too much for me.

Since Thursday I have gone to bed each night with the absolute maximum amount of pain meds in my system that I am allowed outside of a controlled environment like the hospital. Each night I have tossed and turned. Hubby says I was groaning- I’m not even conscious of that. The pain has been just constant.

Really, in the dead of night, there’s not much that can be done. Well, that’s not completely true; there’s loads I could do if I were  not in pain. I can’t exactly engage hubby in conversation …or anyone else for that matter. Most people are asleep. To be honest though, even if there was someone to talk to I probably won’t want to talk anyway.

So I tossed and turned; sat up in bed; sat on the end of the bed; got water; sat in the chair; went from side to back to tummy to side…..just made it through the night with little snippets of sleep.

While all this was going on I was wondering how many others are out there just tossing and turning and praying for morning to come?

I decided to look at it this way: This is the last pain before the ease that will come with the surgery. I fully believe that life will be better after.

So, on Wednesday I go in for an operative laparoscopy. The intent is to deal with adhesions- separate the ovary from the bowel, excise endometriosis, deal with the cysts in the ovaries and remove them if need be. Time will tell what actually is done.

I look forward to the sleep, a full nights sleep.

This is my last post until sometime thereafter when I am able to sit up enough to type. Until then I keep on keeping on and continue believing that just as my sleep is around the corner, so is morning.

Joy comes in the morning!


Downward Spiral



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…… 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.