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Diagnosis Rare But Thankful For It Diagnosis Rare But Thankful For It

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  #1  
Unread 10-17-2004, 10:09 PM
Diagnosis Rare But Thankful For It

It has been a very long journey. My LAVH was April 2004 and a hoped new beginning after ten years of pelvic pain, complications, bleeding and diagnosis of Endometriosis and Adenomyosis.

Post-Op Hematoma on the vault ensued along with continuous bleeding for about 3 months. I had a few amazing weeks and was so thrilled, until one day I noticed something just was not right. Along with the bleeding that persisted I started having suspicious leaking per the vagina and the return of daily pelvic pain. In my heart I knew something wasn't right, but it would take months and courage beyond what I knew before a diagnosis would come.

I had two more operations (Aug and 2 weeks ago) as doctors tried to make sense of what was happening. A vesicovaginal fistula was thought to be the cause and we faced a challenging road of strained doctor-patient relations and a battery of diagnostic tests. My doctor grew distant in view of suspected surgical injury, and I missed the rapport that had always been such a bright light of support to me. More surgery followed, bringing in a Urologist and a whole new set of hurdles. Thankfully we learned I did not have a vesicovaginal or ureteral vaginal fistula. I was so happy for my surgeon, and yet sad to learn we were still without answers.

For months I had ongoing nausea, vomiting and weight loss. I had tried on numerous occasions to share my concerns, but they were lost in the midst of the whole "fistula" scare. The pain persisted and my hope wavered as I wondered if an answer would ever come. But, I knew for myself and my family I could not give up.

I heard an array of explanations and listened to a multitude of comments as we all struggled to make sense of the experience. Some doctors said I was grieving my uterus, others just stunned that I could possibly hurt as much as I did. Even walking, something I loved and did every day (12 km) became difficult. I knew what I was feeling was real, and it wasn't normal to hurt so much.

Finally after the fistula was ruled out I returned to my surgeon and extended not only a new beginning, but offered my concerns and asked that they be given consideration. One of my surgeries post-hyst had revealed suspicious areas in the vaginal vault, but until that time had not been revealed to me.

As I looked at photographs of the vault it was evident that something truly was not right. Instead of taking 6-8 weeks for the vault to heal, I took 6 months. It wept and seeped and continued to become infected. How I wish someone had have understood the concerns of my heart so many months ago...and yet I was thankful that someone was finally telling me that what I felt was not to be ignored.

A CT Scan revealed a very rare complication of tortuous and varicose-type veins on both sides of the vaginal vault. Described as "birds nests" in appearance these collections explained the pain and struggle I had known for many months. Now, in learning answers we faced more questions as we found ourselves in uncharted waters. Even my doctor's colleagues had never seen anything like what I had, and that made it difficult to know what to do.

Embolization (like what is done on uterine fibroids) has been suggested for me, but as it has not been known to be performed on a vault before, carries risks of which we can not even completely understand. Ultrasounds continue to reveal moderate amounts of free fluid, of which we don't completely understand its origin. We have found an Interventional Radiologist who would consider performing the procedure, and it is expected that it will be scheduled to take place in the weeks ahead.

We face questions we wonder if we will ever find answers for. Like how did I get these tortuous veins on both sides of the vault? Was there some kind of mistake? The embolization is a challenging procedure for those who perform it and for me and my family to accept.

I am filled with gratitude that my prayers for an answer were given, and that there is something that could help me. Still, it is frightening to face another surgery as my courage seems to wean with each added experience and the feelings from those that came before are still so raw. With hope, and prayer I step forward to face what lies ahead. With faith I dream of rejoicing in complete healing in the weeks ahead. With love, I will find the courage that strengthens my heart when it seems filled with fear. And at the end of this very long journey I will celebrate the gift of the experience and the way it has changed my life.

Blessings
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  #2  
Unread 10-17-2004, 10:20 PM
Diagnosis Rare But Thankful For It

Blessings,

Thank you for your update as I have been thinking about you a lot lately. I do hope and pray that the mysteries of your complications have been found and that they will be corrected so that you can soon begin your new pain-free life.

I will continue to keep you and your family in my thoughts and prayers.

Deb
  #3  
Unread 10-17-2004, 10:26 PM
Diagnosis Rare But Thankful For It

Blessings,

What a road you have traveled to have not your journey end. My prayers and blessings of sweet success go out to you. I want to thank you for sharing your story, for here in sisterland we truely learn from each others experiences and advice. Your knowledge and experience may indeed be a very needed blessing to another.

The strength and courage of a woman can not be compaired.

Zule
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  #4  
Unread 10-17-2004, 11:26 PM
Thank You!

Thank you for your kind words of encouragement. It has truly been a journey and I feel blessed to have been able to share my story and my heart.

Thanks for your care and comfort.

Blessings
  #5  
Unread 10-18-2004, 12:02 AM
Diagnosis Rare But Thankful For It

Hi Blessings

It sure has been one heck of a journey for you!!! Let's hope you're in the home straight now. You've certainly shown an amazing strength of character to get through all this and I applaud you for keeping your chin up throughout. You're an inspiration to us all.

Sending you healing thoughts and many many s.
  #6  
Unread 10-18-2004, 05:40 AM
Diagnosis Rare But Thankful For It

I admire your courage and will pray diligently for a complete healing from this situation. Please let us all know how you continue to do. God Bless.
  #7  
Unread 10-18-2004, 08:11 AM
Update!

We have learned that we will meet with the new Surgeon/Interventional Radiologist in 10 days. After that it shouldn't take more than about 2 weeks before the procedure is performed. A hospital room would need to be available and scheduling is yet to be worked out. The procedure/surgery lists here in British Columbia, Canada can be very overwhelming and it sometimes seems daunting.

I am taking high dose antibiotics right now for a suspected gyn/pelvic infection. That would need to be completely resolved before we can move forward with the procedure. Ultrasound and internal scans are scheduled to be done prior to our appointment. Those too will determine if I am a candidate for Embolization.

I continue to pray that it will occur soon and that we will not face lengthy wait times. My heart remains filled with hope that this could truly be the end of my journey and a new beginning.

Blessings.
  #8  
Unread 10-18-2004, 08:17 AM
Diagnosis Rare But Thankful For It

Bless your heart! I am so sorry your are having all of these problems. I hope everything is resolved very soon. Try to hang in there and have faith that all will eventually heal. I am sending good thoughts your way.

Diana
  #9  
Unread 10-18-2004, 08:19 AM
Diagnosis Rare But Thankful For It

Dear Blessings,

Thank you so much for your post. You continue to be on my heart and in my prayers! I've shared your need with several of my most trusted friends and prayer warriors. They routinely ask about you!

Honey I pray for strength, healing, patience and wisdom as you wait for the answers to come. I pray your family and friends also receive strength and comfort so they may continue to care and support you!!!

Bless you and thank you for keeping your cyber sisters updated!
Amazing the bond we can have for one another...isn't it?

What a great day of celebration it will be! I want to see you dancing with your DH in that red dress!!!!!

Much love and prayer
Luann
  #10  
Unread 10-18-2004, 08:27 AM
Diagnosis Rare But Thankful For It

Blessings I am so very glad you have your answer now and I know you will face this up coming surgery with the same strength you have had all along......Your an amazing person.You will be in my thoughts and prayers for the upcoming weeks....Just remember that God will never put more on us than we can handle...

Blessed Be!!!!!!!
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