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.

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Surgery on the horizon: bittersweet decision

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I finally had my appointment with the surgeon last weekend. Over the past few months I have been back and forth to my GP, the hospital, OBGYN and finally the surgeon. My last visit with a doctor other than my GP didn’t go very well. I wrote about that in Dear Doctor from yesterday 😦 . That visit was horrible. However, he did give a referral to this surgeon who specializes in Laparoscopic surgery. I really don’t want a large cut. I had that with the hysterectomy and it took sooooooo long to heal. I don’t want it opened again if I can avoid it.

I went to this surgeon and the visit was as far as night from day when compared to the last one. The appointment was at 8:40 a.m. I arrived a few minutes early and was immediately ushered into the nurse’s office for the urine, blood pressure and weight checks. The doctor came and ushered me into his office shortly thereafter.

I spent probably 30 minutes in his office with him. We discussed the referral from the previous doctor and then he put that aside. He was interested and invested in just listening to me tell my story. He took a comprehensive history of all my illnesses and medications, not just the pelvic issue related ones. He took the time to hear and see me. It was the most relaxing conversation I have had with a doctor, outside my regular doctor, in a long time.

We then spoke about the examination he wanted to do and why. He left me in the office to speak with the nurse and then ushered me into the examination room with the ultrasound machine. He took the time then to talk to me and ensure i was ready for the exam and then proceeded to do the pelvic exam. It was very uncomfortable but not painful. As usual it was most painful on the right, also as usual there was nothing “abnormal” about my examination.

After this was the trans-vaginal ultrasound. Again uncomfortable, but not painful. He concluded the examination and left for me to dress. He then returned and ushered me once again into his office where we spoke for just over half hour.

The ultrasound revealed that my left ovary appeared normal in size but for whatever reason he was unable to see the infamous right ovary. Trust me he did look and probe and probe. I actually asked him if something was lost while the exam was being done. It just seemed like he was probing a bit too much. However, the ovary couldn’t be seen.

Food for thought that is. Not sure what there is inside that could be hiding the ovary. Time will tell.

The doctor suggested that I go on a course of treatment with GNRH agonists. These would put me in a state of menopause. If the pain decreased then we would know for sure that the extra pain that I’ve been experiencing is due to Endometriosis. If it worked then I would have to use it indefinitely……..in reality more than 10 years.

The good thing about the visit was that although an OBGYN, he didn’t discount my Pelvic Congestion Syndrome diagnosis. He accepted that it exists and rightfully stated that there is still a lot of unanswered questions as far as PCS diagnosis and treatment is concerned.

He also accepted that surgery would help in determining and hopefully fixing the problem or at least alleviating the pain. I decided on the surgery, mainly because I had done the hormonal treatment before and it had not changed anything.

We put the wheels in motion for the surgery. I did the blood tests, made the appointment to see the anesthetist and sent the quotation to the insurance company. Due to the doctor’s schedule I will not be scheduled until May. I don’t have the date as yet but its better than nothing. I see the doctor in two weeks.

This decision is bittersweet to me. I am happy that there is some progress and we are going ahead. I am afraid though, that this op may change nothing. I am afraid to hope……….yet I can’t give up hope. Its all I have sometimes.

I accept that things may remain the same. That is the risk that I take. I am going in for an Operative Laparoscopy. While I am under, the surgeon will determine what is to be done. If Endometriosis is seen or any indicators of it they will be excised. The adhesions that are suspected, if seen will also be dealt with (this is a catch 22, this op will also potentially lead to adhesions). I also go in with the understanding that depending on what is discovered the op may be converted to open surgery. I’ve no control over any of this.

Yet, I am at peace with my decision. Like all else before, God and I will get through this together. He promised, and I trust His promises explicitly. This will get better, this too shall pass.

 

 

 

 

 

 

 

 

 

 

30 Day Chronic Illness Challenge- Day 3

 

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How did you get a Diagnosis?

Well as mentioned before I was diagnosed with Endometriosis at age 16. This was after 4 years of periods from hell. I would have huge amounts of blood and extensive pain. It got to the point where I would just stay at home for fear of “accidents” when I had a period …..because of the volume of blood. However, it was also because I was really no use to myself or anyone else at that time.

I went to a Gynaecologist and he suspected that it was endometriosis. he put me on birth control pills for a while to no avail and then suggested I try other treatments but I refused. To my mind it made no sense treating something that was not confirmed.

So at 16 I had a diagnostic laparoscopy which revealed endometriosis.

The Pelvic Congestion Syndrome was a little bit more involved.

I went on to do many types of treatment for Endo, have two children they said I would never have and eventually have a hysterectomy- all in hopes of dealing with it. After the hysterectomy and the problems still persisted my GP and I thought there must be something else that is being missed. We both started to search.

He finally came to me and said that my symptoms are like those described for Venous Insufficiency and in my case Pelvic Congestion Syndrome. he referred me to a visiting Interventional Radiologist who agreed that my symptoms fit the description.

Two days later I decided to undergo the vein embolization procedure.

The procedure revealed that I had re-fluxing veins on both the right

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and left and I had two coils inserted on the right and one on the left.

So in each case my symptoms pointed towards the illness and the surgical procedure confirmed the diagnosis.