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A New Road Perhaps? A New Road Perhaps?

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Unread 02-18-2005, 08:29 PM
A New Road Perhaps?

I had a LAVH last April for longstanding history of endometriosis, and Hysterectomy pathology found Adenomyosis. I was first diagnosed with Endo in 2000 after many years of challenges in finding a doctor in whom my concerns were taken seriously. After that I had further Lap surgeries and a Presacral Neurectomy. Infertility followed my husband and I for years+ before we were blessed to conceive. Pregnancy and delivery were complicated. I had post-partum hemorrhages, and retained placenta requiring D&C both births. Infection and Endometritis followed, with ongoing bleeding complications for many months. The resumption of my cycle brought with it all too familiar severe pain, nausea, vomiting and weight loss. The decision to go through with my Hysterectomy was a difficult one, but I knew that I wanted a better quality of life for myself and my family. As an elective surgery, it was my choice, but by all accounts it felt little like a choice at all. My LAVH was two weeks after the consent was signed.

Surgery went well and in the days that followed I felt like I truly had a new beginning. I began to dream and then implement many of the things I had for years only thought about. But early in my recovery things would begin to change, as I had significant vaginal bleeding that lasted several weeks. I also had severe pain that left me unable to stand up straight and crumpled on the floor. It was suspected to have been a vault hematoma, but we will never know for sure because the ultrasound was done very late after the onset of my symptoms. It took me a long time to heal, months instead of weeks.

Three months later I started having leakage of unknown origin that the doctor suspected was a fistula. In my heart I really did not think that it was that, but I trusted completely my surgeon's perspective on this. I endured a retrograde pyelogram, EUA, two cystoscopies, and unfortunately complications that came with all of them. Despite all of that I was thankful that it was not a fistula after all. The experience put a considerable strain on my rapport with my surgeon though, which was difficult. Even when I had been told it was almost a certainty that I had a ureteral injury of some kind I felt no upset towards my surgeon. The loss of rapport was one of the most upsetting aspects of that time truly.

When I had ongoing pelvic pressure and pain I had another Laparoscopy a few months after my LAVH. The Lap revealed the vault was vascular and "full" having pockets of unknown contents. My surgeon decided it was too risky to expose these and closed the surgery without having fully examined them. I had an adhesion from the ovary to the vault which was also taken down. No clear explanation was given as to why I may have had such intense pressure and pain. A CT Scan done to look at my kidney weeks later would reveal our answer as varicose type clusters on both sides of the vaginal vault.

In November I underwent an Embolization procedure to occlude the ovarian veins that were not functioning as they should. But once again there were complications. Some who cared for me that night were certain I had developed septicemia, but we would never know because blood was drawn late after initiation of IV Antibiotics. Our family was once again left reeling with few answers and many questions. I remained in the hospital on IV for three days. Thankfully the embolization was successful and enabled me to regain much of my mobility again but it wasn't a complete resolution.

Because of the infections that I had and the long term Antibiotic treatments I had been given I developed a potentially life threatening intestinal toxin called Clostridium Difficile. Once again I was in the hospital and fighting hard to get through. Thankfully I did recover and am now making a steady recovery, regaining my strength from the infection that left me notably weakened.

Despite the good that the embolization did I continue to struggle with pelvic pain in the right and left lower sides. Now I am going back to my Gyn Surgeon to explore why I am continuing to have bilateral lower pelvic pain. It radiates into my legs so much so that it is difficult to sleep at night and when I do drift off it wakes me. I wonder if it could be my ovaries, more adhesions, or even Endometriosis...right now there are many possibilities and none are certain.

Sometimes it feels like I have gone full circle. Perhaps I have. I will see my doctor this coming week and have some understandable apprehension about it. Much has happened these past few months and I hope that in that sense the time will have been healing. I want so much to move foward. Even if the pain I am experiencing does not have an answer, and I don't get the resolve I seek, I can accept that easier if I know there are options in dealing with it. I know that I don't want to have to struggle to be heard nor do I want to take long term meds. I would like to consider alternative treatment modalities. I am hoping that my surgeon will be receptive to that and help me to discern direction. It has been a long journey...but I have a lot of hope.

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Unread 02-18-2005, 11:09 PM
A New Road Perhaps?

((((HUGS)))) I hope you get the answers you seek and that your pain will be resolved totally very soon.
Unread 02-19-2005, 01:36 AM
A New Road Perhaps?

Wow!! I'm speechless...............I dont know what to say except that I'm really sorry that you have had such a trying time with this. You must have a wonderful support system to help you through all of this. I pray that you will have peace with your body soon and continue with such a positive attitude. You are truly an amazing person and an inspiration to all of us!!!

Peace, Cheryl
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Unread 02-19-2005, 05:11 AM
A New Road Perhaps?

What a long and difficult road you have taken. Your mental attitdue is to be marveled at! I hope things will improve rapidly for you.
Unread 02-19-2005, 09:11 AM
Thank You

Sincere and heartfelt thanks for your encouragement. It means a great deal. I look forward to one day upon resolve being able to reflect and see how much was overcome.

Perhaps one of the hardest struggles right now, as it were in previous months, is being heard and understood by my care providers. Because the complications that I have had and the course of recovery my body has taken things just don't fit "into a box" so to speak. That makes for a challenging interaction with physicians because there are few answers.

Right now I struggle to be heard once again because the symptoms that I am having don't fit a mold. Because I have had a history of Endometriosis it seems easy for some of my doctors to pass my symptoms off as chronic pain. What is even worse than that is the insistance on medication, almost a push, when there is yet to be a diagnosis. For me personally that is not a road that I wish to travel down. Not for me, and not for my family. I can not bring myself to take an array of medication for which my doctors can not even give me a clear explanation of why I should take it.

Despite this, I am determined not to loose faith and to press on. I know my body and I know that in my heart what I am feeling is real. As it has been each and every time in the past, despite the resistance of my doctors to act and the comments that I had to endure. I know my body and I believe the signs that it exhibits in the face of something not being right. I have seen this time and time again, and if I were to have not trusted that feeling I would not even be where I am today. Sometimes it was the difference between receiving help or not, and other times my life was at risk had I failed to act. I have been in so many situations whereby if I am so glad I listened to my heart even if doing so was hard.

Sometimes it doesn't make sense that we have to struggle in the midst of our pain to get the help that we need. It just shouldn't be. But, I trust that the strength that is gained in character and personal growth will far outweigh the struggle. It isn't a journey that you would wish on anyone, but when in the midst of it, I always believe there must be something good that can come of every challenge. I know that I can't give up, because one day the women who walks a similar road may be in the same position I am right now. If only one could be helped it would be worth everything.

Unread 02-19-2005, 07:38 PM
A New Road Perhaps?


I've been following your 'recovery' story for months now. You're an amazingly strong and resilient woman, and I just so hope that your journey back to good health is nearing an end.

Many many s to you.
Unread 02-20-2005, 09:02 AM
A New Road Perhaps?

Hello Blessings

I have also been following your story for many months now. I just want you to know that I hope your long journey is coming to a end and that you are about to enjoy the healthy life promised to you after your hyst.
You are such a courageous sister.

s and ers

Unread 02-22-2005, 10:44 PM
A New Road Perhaps?

Dear Blessings, Your courage and hope are a great inspiration to all.... good thoughts and prayers are with you.
Unread 02-24-2005, 08:28 AM
A New Road Perhaps?

Hi Blessings,

Wow! You have certainly had a tough go of it!!!! I was just wondering if you have lower back pain with your pelvic symptoms? I've been on a long road to find the source of my pain and I have found since my hyst that my lower back and pelvic pain has not only been caused by adeno/fibroids but an MRI of my lower back showed degenerative disc disease that has caused stenosis (narrowing) of my spinal canal and pinched nerves that go to my pelvic region. The pinched nerves from this condition could warrant the pelvic pain. I also had pain that went down into the backs of my thighs and sometimes into my calf and feet. Since this news I have been seeing a chiropractor and am pain free in my legs. The jury is still out in my pelvis, although I do think there has been a little improvement....it's a good day/bad day sort of situation at this point - I'm very early in the treatment stage. I'm also scheduled to see an ortho doc next month to get his opinion. With my symptoms I completely thought that everything was gyno related and some was - I did experience much relief after my hyst - but I found that I still had considerable pain post-op and just "kept digging".

I may be way off base.....but perhaps it could be something for you to look into too. The fact that you mentioned the thigh pain made me wonder. I have read and my chiro has confirmed that you may have back problems and not even know it - whether it be from past traumas early in life or age - and even though your immediate back area may not hurt, nerves in the area where the back is suffering from misalignment, pinched nerves, etc. may transmit pain to other areas of the body because of our complex nervous system and this can make it very difficult to diagnose.

Just a thought. I'm CERTAINLY not a doc. I do pray that you find the cause of your pain and that you don't have to "live" with it. Keep searching and keep the faith and I'm sure you will.

's to you....you most certainly deserve a BIG one!
Unread 02-25-2005, 11:33 AM

Thanks for your care and kindness.

I think that discernment has come, and we now are one step closer to the answers that we have sought for a long time.

As shared in the above new post: Update

I am awaiting surgery to help correct bundles of vessels (vascularity) on both sides of my LAVH vault incision. The surgery has not been done before, so my doctor said it is truly "being made up as we go." It is risky because of bleeding, but is looking like my only option. Each vessel will be ligated, or tied off. The clusters will not go away on their own and it has been almost a year. I am understandably apprehensive about another operation, especially given the risks associated but thankful that I have an answer. I know that my surgeon will be guided and though I may be fearful I will be watched over during the procedure.

We pray for a surgery date to come soon, as the wait list is currently lengthy.


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