The Measure of Success

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How do we measure success? How do I measure the success of the surgery? Is it an all or nothing thing?

This morning I awoke feeling crampy and aching all over. I’ve got pain on the right just around the ovary and my brain is kinda fuzzy. Feels like PMS………well in my case PNothingS. Great! Just wonderful!

Honestly, from Friday I was feeling like my hormones were getting wacky. I decided to adopt a wait and see attitude. I don’t know about others but after gynae surgery my cycling goes haywire and takes some time to settle down. According to my charting before the op, I should have ovulated last week. Obviously with all the organ handling, separating and removal on May 10, I was still in post op pain and mode last week. I now need to start charting again to establish what the cycle will be.

So, what does this pain today mean? As I am writing here I have already taken some meds and the pain is between 6 and 7…………livable/ doable. Does this mean that the surgery was not successful?

I think its too early to even think that. Things need to heal first before I can truly assess the pain. Even then, if the pain levels are still as they were before does that mean no success?

I’ve thought about this, spent a lot of time on it actually. I would say no; success is not as cut and dry as pain before surgery/ no pain after surgery OR horrible pain before surgery/ less pain after surgery. I think I should look at the little things, small progresses made and see how they add up as opposed to looking for the drastic change.

So far I’ve noted success in:

  • Bowel function- I can have a BM now without intense pain, stretching and cramping and having to move from bathroom to bed and stay there for at least half an hour before I go anywhere or do anything.
  • Sleep- I am sleeping more now that being awake throughout the night from pain. I still need to wake up to empty my bladder but for the most part I can sleep.
  • All day pain- previous to the surgery I was in pain all day long. Up until today that was not the case since the op. There is pain yes but not consistently throughout the day. It will take me some weeks to work through what is happening now and see if the pain has reverted to mainly cyclical and minimal in between.
  • Mental State- the impact that chronic pain has on mental health should never be discounted. Previous to the surgery, the flare I was in had lasted so long that I was really down in the dumps. I smiled and did what I had to/ what I could to fulfill my various roles but beneath it all I was seriously struggling mentally. Right now I am in a better mental space. Partly because of the improvements  I mentioned above and also because I was able to get some questions answered by having the procedure i.e what was stuck to what, where the growths were etc. So no matter what happens going forward at least I start from a more stable space.

Each of these things is major in its own right. Each one was a source of worry for me before the op and contributed to my overall disposition. The improvement equals success to me. I claim the small victories.

If we continue to look for the big earth shattering changes, most times we miss the small but significant ones.

Yes, I’m in pain today. It may continue for a few hours or a few days I have no idea. What’s good though is that I am in a better place to deal with it now. That’s success.

As the quote above says, this is a storm that I am in. I don’t know how I get through most times (actually I do………it’s all God) and I have no idea if it is over or when it will be over. However, the one thing I do know is that when it is over/ when it wanes before picking up again I can see my growth. I can see how I have developed and how I have become stronger. The person I was going in is not the same person coming out.

This to me is success!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Post – Surgery Update

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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.

Progress?????

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…..no stretching……..no 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!

 

Thankful for friends who stay.

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I woke this morning late, bad sign. I was in pain. I struggled out of bed to help the children get out of the house but things were bad. I just took some meds and went back to bed.

Before this, I messaged my doctor and let him know what was going on. Said I would give it two hours and get back to him.

This week I had planned to get some cleaning done, change the curtains, clean the windows etc. in preparation for the op next week. I wanted to do this because I really have no idea when next the house will be cleaned to this extent. I have no funds to pay a housekeeper and I’m not sure when mummy can come and help me out.

So, back to bed I went. A friend had planned to come help with the cleaning but even before she could arrive I was dozing. I sent her a message telling her which door was open and what I was planning to do.

My friend arrived and started to work. She removed all the curtains, cleaned all the windows, dusted, swept, tidied and cleaned the entire day. Also, in the midst of all this, she cooked a huge pot of soup for my family and made sure I ate some. I just stayed in bed. I only got out of bed to use the bathroom and take my meds.

She worked for 9 straight hours; from 9 a.m. to 6 p.m. This is no small favor. She did it all simply because she loves me.

Living with the unpredictability of Pelvis Congestion Syndrome and Endometriosis and not knowing from day to day, sometimes minute to minute how things are going to be makes life difficult, to say the least.

Many good acquaintances have exited my life over the years. If I count my friends, I don’t make 5. That’s not a bad thing really. Its hard sometimes for me to be a good friend in all of this.

Friends who stick with me are treasured. I value this sister who was here today more than I can say. Its hard for others to be around me, especially when I am in pain. I withdraw, shut people out and sometimes push them away. I thank God for those who stay.

So sis, if you are reading this; I am ever grateful for your love and your friendship. Thank-you for being there for me today. Thank-you for cleaning the house and letting me sleep all day long. Thank -you for taking care of me. Thank-you for listening to me, always praying for me and always being there.

I love you!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Embrace the flat/ or nearly flat…

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Yesterday I looked at Embrace the stretch… and that was mainly about the adjustment I had to make in the type of clothing I wore. I promised to look at the changes I made in my shoes.

Let me say that I love shoes. I guess in that way I am a typical woman. I think that any day can be fixed with a sexy pair of shoes…..I’m serious here. There were many days in the past where I was in a bad mood and I just put on a popping pair of shoes and my entire attitude changed. There is just something about how I feel in the shoe. Anyway, enough of that.

I am 5ft 10inches tall. So I really didn’t need to wear heels to begin with. I just loved them from the time I started wearing them around age 12. I would wear heels between 2 and 4 1/2 inches high. To work, church and to any occasion that was not completely casual.

I realized whenever I had a period- before the hysterectomy, or whenever I was in pain- after the hysterectomy, I couldn’t tolerate the heels. I always wore flats of shoes with 1 1/2 inch heels of lower. There was just something about the angle of the heel that made the pelvic pain worse. I think it increased the pressure somehow. I’m not sure.

As things got worse I found myself less and less able to wear the heels for any period of time. I would wear to work my heels and after about 1/2 hour take them off. The same would happen at church. I found that the pain was just too much to bear.

It came to the point about a year ago, around the same time I was adjusting my wardrobe, that I had to stop wearing them all together. Standing alone was painful if I had to do it for more that 20 minutes furthermore in heels.

I was depressed over the shoe situation. Really depressed. One day I took all my heels and looked them over. Those that I could give away I did and the others I threw out. There were numerous pairs of shoes. It was a sad day.

Since then I have built up a store of flats. Nice flats. I have a few shoes that are 1 1/2 inch high but most are flat. Even those with the small heel I can’t tolerate when in pain.

So, another lesson learned. Test and adjust a friend of mine always says.

I have come to accepting that I have to do what is best for me. I have come to accepting that flats look nice also. I have come to deciding that pain will try to define me and bring me down ………………but I won’t let it.

I am stronger and more flexible than I thought.

So what, my clothes and shoes are different………….but you know what? I am still here and that to me is victory!

Embrace the stretch…

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Just yesterday I wrote about The Space I’m in….. This was about embracing and accepting where I am on my journey with Pelvic Congestion Syndrome and Endometriosis. It was about dealing with those things I cannot do right now and not stressing.

Today I had a reminder of that….how hilarious it was.

Yesterday I wore a pants at home in the evening for probably an hour and after I had my shower this morning I took the same pants to wear. I proceeded to pull the pants up and attempted to zip it. The zip came about 1/5 of the way up and ran back down. I tried again and the same thing happened. When I looked down I realized that my belly was getting in the way and the pants could not be zipped closed. I started to laugh.

I laughed so hard I had to sit down. It was immediately distressing and hilarious……….most people won’t put those two things together but I did in that moment. In my head it was better to be laughing…….really laughing…………than crying.

I was reminded of one of the best pieces of advice my doctor ever gave me. He said “Lyn, embrace stretch fabric.”

Now I am sure that you have heard of the endo belly and I have written before about PCS causing my belly to swell to the point where I can be mistaken for 5 -6 months pregnant. So combine the two.

I must say when I got the piece of advice I was taken aback but I took it and ran with it. Good thing I did. I slowly started converting my wardrobe to stretch items or to styles that accommodate a big tummy.

 

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Faux wrap

I sewed several peplum and empire waist tops and dresses as well as a few faux wrap pieces. I made sure that anyone who ever purchased clothing for me knew that I preferred stretchy stuff.

 

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Empire waist

I even looked for pants and skirts either with stretch fabric or at least the waist from stretch fabric. Right now I would say probably 90% of my wardrobe has been converted.

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Peplum

In the whole scheme of things, being frustrated over clothing is one worry I could do without. I had days where zippers threatened to burst and I had to pin between buttons and that was extremely distressing. Embracing the stretch fabric has removed that stress from my life.

At the time it seemed like giving in to the conditions but now I know its more working along with the situation. Its just like converting to flat shoes – but that’s tomorrow’s blog :).

The pants today was a pre – advice item. It reminded me of how much my life has changed but I was also reminded of how much I have grown. A year ago I would have been weeping. Today I just laughed.

Maybe that’s the secret. Some things, when we embrace them and work around and along with them; its the best fight against the diseases we can give.

It says “you can’t bring me down…..I’m flexible like that”.

Embrace the stretch!