Today I cried….

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Today was a bad day as far as bad days go. I have been feeling under the weather for the past three days and have been taking pain meds to lessen the pain and help me through the day. On my 1-10 scale the days before this one were 6-7.5; still tolerable for the most part.

Last night I went to sleep and to be honest don’t really recall sleeping. I guess that is how it should be since you are asleep . What I really mean is I don’t think I really slept. I am aware of tossing and turning, shifting and moving pillows around to support my back and my pelvis. I didn’t find a comfortable position until about two hours before I expected to get out of bed.

I awoke to pain so intense I was crying and did not even realize until I attempted to sit up and it instantly multiplied and I felt the tears on my face. I think  I was in a state of shock, trying to process it all quickly. The pain was mainly surrounding my right ovary and down the right leg. I felt it all across my abdomen and into my back once I attempted to sit up.

I lay there just crying for about 10 minutes. It was still pretty early in the morning; my husband was already out for his morning run and the children were still asleep. For all intents and purposes I was alone……I felt alone. I started to wonder how would I get out of bed? Would I have to wait until hubby returned to get help? As I lay there my doctor messaged me (good support that he is) and I chatted with him for a bit. Recommendation: take the pain meds and remain in bed for about 1/2 hour. Great!!! Just how would I get the meds?

I crawled off the bed (that should really say walk but honestly I crawled) and took the meds and crawled back in. Yes they did kick in about 20 minutes later and I was able to walk…actually walk this time….rather slowly into the day. Doc recommended I keep meds and water near bedhead for moments like this one.

I dragged into the day still in intense pain but with enough edge knocked off to look to the average person as though I wasn’t that well but not as horrible as I felt. Upon arrival at my workplace ( I was driven) I took some more meds, tried to sit and keep quiet.

The pain peaked and waned (no less than 7 out of 10) throughout the morning. When it peaked I would start to sweat and with it I would start to cry. I sat with my feet up on the same level as my hips and just tried to breathe, but I cried.

I cried because of the pain; I cried because I was frustrated; I cried because people saw me and asked what was wrong; I cried because I had a plan for the day that I could not achieve in my present condition; I cried because I was miserable….I just cried. It brought an emotional catharsis but did nothing for the physical pain.

If I could’ve chosen I would have stayed home and wallowed. I hate days like this where the pain seems to define my every thought.

After lunch I took some more meds and did what I could for the afternoon….I then came to a point where I just said “I’m done”. I was done for the day. I knew I had tried all I could but nothing else was achievable.

On the way home, I dozed in the passenger seat. I arrived at home, did an extra quick supper for the family and I (so I could take some more meds) and just got into bed.

Here I am now, exhausted and spent. No energy, just pain and still I cry. I’m just praying tomorrow will be better.

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It hurts my heart….

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Last post I was trying to figure out where acceptance and resignation end and where giving up begins. Many times  in life we have a hurt or a challenge and sweep it under the “carpet” and move on as if it isn’t there. In the early stages of PCS I did that as well.

I think the biggest challenge was not being able to fully explain what was taking place in my body and people….doctors even not believing that I was actually in pain. I even started to doubt myself.

I mentioned I’m  a Psychologist. I studied Psychopathology and read all about various disorders in DSM IV and now V. On many days I said to myself “you must be a hypochondriac” or “you must have Munchhausen”; you must have something wrong with your head because there certainly is nothing wrong with your body. Then I would answer back “but there is something wrong with your body, you can feel it. No matter what anyone tells you there is something wrong!” Then I would go on for a few more days and do the same thing all over again. then I would say “girl, stop talking to yourself!”

I’ve found that in the midst of the most horrible physical pain the emotional pain becomes more intense. It hurts when I have to constantly say no to my children OR I can’t do that with you now OR  I just don’t have the energy; then I see their expressions and it breaks my heart. It hurts to see them crying out of pure frustration with a situation they don’t and can’t understand. Then I begin to cry as well.

It hurts when I look at all the things I can no longer do or am afraid to do because of the anticipated pain. Case in point, for the last few years I participated in several 5 km walks and had decided last year that I was going to run this time around, whatever the race, whatever the route. This decision was made in the 6 “good” months after the first embolization where I thought “wow, this procedure really worked; it’s miraculous!” Well 6 months passed and I started to realize “worked…..not so much”. So since then I have been struggling with exercise. Truth is I love to run, I love the adrenaline rush and the burn. I can still run on the “good” (I use that word extremely loosely) days. I have the capacity to run. Running is not the problem. Its what will happen after. As soon as the levels of adrenaline and endorphins drop in my body the pain sets in. Most days I have 10-15 minutes tops after any physical activity before I’m struggling to walk or “running” for pain meds. Then people will say ” you really need to exercise” OR “you putting on some size though”. I fake smile and keep moving but it cuts me to the core. So I can exercise but the fear of pain cripples me….in more ways than one.

Even when the physical pain is somewhat under control the emotional is ever present. I can sweep it and cover it and pretend not to see it but I know its there under that carpet.

My doctor always says “chronic pain isn’t easy”. Its true because most persons focus on the physical aspect but for whatever reason neglect the emotional.

So what do I do? I cry, I stay away from people, I mope, I wallow and then I go to therapy myself. I go and talk it through with someone who does what I do; knowing full well that for me its not about what they say but just about getting it out, about “speaking my PEACE”

I do the things I like doing when I can. I make memories with my children and I focus on whatever positives I find. Then I start from the top again. It’s an everyday struggle, what works one day doesn’t necessarily work on another. I handle it how I can and that’s enough for today….it has to be; tomorrow will take care of itself….

Pain

Have you ever had a period where you thought you were going to die? Really, I mean die. The pain was so intense that you figured this was the ultimate/ Nothing could be worse? Then it got worse?

Its difficult to quantify the pain I experience with PCS. Many people have said to me ” nah it can’t be that bad” or “that’s all in your head”. They say this because they cannot fathom pain to the extent of which I speak.

Let me separate the pain into sections: back, legs, pelvis and periphery.

I have constant lower back pain. Interestingly enough I’ve had this issue for years before the PCS diagnosis. I always knew it was tied to my pelvic pain but couldn’t quite figure it out. I realize how acutely aware of the model and make of chairs I have become. I examine each chair as though it is on trial for murder and I am the prosecuting attorney. I know all about the slant of the chair back, the angle of the seat and arm rests, whether the two together will make a right angle and have the sitter upright or not. Most days I sit with a back rest to ensure that the angle at which I am sitting is one that causes least pain. When the back hurts sitting, standing, lying down…its all problematic.

My legs get weak and feel as though they are going to give out beneath me. There is a radiating pain through each leg that causes me sometimes to just stop walking or moving for fear of falling with the next step. This happens most often at work when I am moving from one point to another and most times in the afternoon. I literally stop and stand in one place; most times against a wall; and pretend to be looking at something so I don’t look totally weird just doing nothing.

The pelvic pain is akin to childbirth contractions. The difference is that I knew the contractions were for a time. I was not going to be in labour forever. Just as its near impossible to walk around as contractions intensify in labour, so its impossible for me to move when the pain intensifies. There is really no first day vs third or fourth day pain; its all the same. Cramps akin to contractions that cripple. Without some pretty strong meds I am confined to bed, need assistance with walking or moving. just lying there in a ball.

The periphery is everything else. The headaches, nausea, mental fog and confusion. Put all of the above together and most days I am of no use to myself or anyone else. The thought alone of doing is too much. My children look at me and say “mummy is ill again” or “mummy needs a break” and just go on about their day.

My doctor would usually ask me to rate from 1-10 with 10 being the worse. Actually he can look at me and see 10. That’s when my husband all but lifts me into the office. 8-9 I can walk in albeit slowly but still need the intravenous meds. Most days I am between 4 and 7, I can live at 5; there’s some pain and discomfort but it’s controllable with meds and not too many. The pain never goes below 3, so 3 for me is like 0. Its been this way for a long time now. I accept it…which is not necessarily a good thing…I guess…… but there’s a thin line between being resigned to a reality and being hopeless. Sometimes I am not sure which one it is .

 

Symptoms?

 

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So I have these really big veins in my pelvis that are stretched and filled with blood that should have been on a continuous path to my heart but my one way door (valves) swings both ways. Basically varicose veins inside and not outside.

If I had to choose the symptom I mention most, ironically its not pain, although believe me the pain can be off the charts (I will give pain its due and give that a post all its own). The symptom I mention most is the strangest and most difficult to explain fatigue and heaviness.

Most days I awake feeling relatively ok- well days outside of ovulation and menses and a few others in between….so not most days but let say 14 out of 30. I launch into my day doing mummy, wife and work. As the day progresses I grow increasingly weary, by late morning / early afternoon I am exhausted. There is a literal heaviness in my pelvis. It feels like there is something very heavy there pulling me to the ground. This is accompanied by a dull ache, not sharp pain but like a bruise that is healing so the outside isn’t sore to touch but layers down there’s an ache. It causes me to drag along, sometimes feeling like I am just going through the day by rote. The more I stand or walk around the heavier the weight. Relief only comes when I have the opportunity to lie down.

The heavier the weight, interestingly enough, the bigger my abdomen gets. The later in the day the bigger it gets. So I have had the experience of leaving home for work appropriately attired and by afternoon my clothing is too tight. I have had the experience of clothing fitting one day and the next can’t be zipped or fastened.Sometimes its so bad that people look at me an assume I am pregnant. I smile at this because from another perspective it would be hilarious. To me its just sad and frustrating.

It is this same heaviness that saps my energy and causes me to just stay at home in bed sometimes. The effort to leave home, drive, do; is just too much on some days. My mind may be ready to go but my body says no. I have no option but to obey. It is this heaviness and fatigue that causes me to avoid all nighttime activities, by evening I am finished. I arrive home from work and have to rest before attempting to focus on anything else or do anything else.

When anyone asks what is wrong or how I am feeling I usually just say tired, because its the truth. Any explanation beyond that takes effort I don’t have and those who don’t live it have a hard time processing what I say so I do not bother.

Its somewhat difficult for me to process myself. How the incompetent valves can lead to my abdomen bloating. However at least from my lay person’s standpoint, if you try to stuff too many things in a small space that can’t hold it all, something will push out.

So fatigue, heaviness and a dull ache. This is the most prevalent symptom. The most difficult for me to handle because most of my days its there. Just one symptom of many!

 

Lowdown on PCS

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Okay I am not a doctor but I will explain this the best I know how. Let me say I never knew any of what I am about to say until the diagnosis.

So our veins have valves in them which to my understanding are like swinging doors that should only swing in one direction. So they let the blood flow towards the heart but not backwards. Those of us with PCS have what are known as incompetent valves….they swing both ways.When this happens blood flows backward and pools in the veins.

Imagine if you will a juice box straw being filled with liquid and stretched to the size of a straw one would use with a smoothie or protein shake. As in the photo above the veins get huge….well as far as veins go.

I am always amazed at how so many organs are packed into such tiny spaces. The pelvis is one such space. If you can picture then these swollen/ engorged/ stretched to capacity veins in that space I think you can begin to see the challenges. The space quickly becomes congested…..hence Pelvic CONGESTION Syndrome.

The general term for the damaged or not working valves is Venous Insufficiency. So Pelvic Congestion syndrome is also known as Pelvic Venous insufficiency.

I have been researching since I was diagnosed, but as much as I have found, it still seems to be a very misunderstood, misdiagnosed and under-diagnosed condition. This aspect of it can be quite frustrating especially in a small island like Barbados where most of the medical fraternity have no idea what you are talking about when you say PCS. Those who may know of it still lack understanding of the many challenges faced. Its only us who deal with it day in and day out who understand.

Why This? Why Now?

This is the post excerpt.

Hi

My name is Lyn, I am a 38 yrs old wife and mother of two children, boy and girl aged 10 and 8. I live in the beautiful Caribbean Island of Barbados.

I was diagnosed with Pelvic Congestion Syndrome (PCS) two years ago after having it for many years I believe and being misdiagnosed.Since then I have found that PCS is somewhat an enigma……very little information available about it. Many persons (physicians included) have no idea what it is or how to treat.

I believe that as women share their experiences with this disease we can offer strength and support to each other as well as give valuable insight into how to cope.

So ladies, let’s talk! What is your PCS story? How were you diagnosed and by whom? How do you handle the day to day? These are just a few of many questions and discussions yet to come.