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Russian roulette

Nov 05, 2009 - 7 comments
Tags:

OVCA

,

Ovarian Cysts

,

Hernia repair

,

Pain

,

surgery



Today I am feeling so defeated. Why can't anyone give me some straight answers. I just spent another two days in hospital for pain management with this ovarian cyst, that has been controlling my life for the past 6 months. For the last six weeks I've been led to believe that at my GYN appointment in December, I was to be given a date for surgery to remove both ovaries and cysts that have been giving me excrutiating pain. I have an extensive pelvic surgery history which includes 2x C sections, appendectomy, hysterectomy (leaving my ovaries) and the insertion of a 20cm x 18cm mesh inserted to repair incisional hernias caused by a car accident, 12 months after the hysterectomy.
Well here I am at home playing the waiting game again, this time until January 14th. After more ultrasounds, and a TVUS today, I have been told that "the good news is the cyst hasn't grown any bigger", or though the pain is getting worse and worse, on a daily basis. The bad news is, that because of adhesions and mainly the mesh, that now they can't operate just yet, because from what they have been able to see, the surgeon doesn't feel that there is anyway he can get through the gortex mesh, without perforating my bowel, which would lead to a colostmy(sp) bag. He now wants to co-ordinate surgery with a bowel surgeon, so they can make enough of an opening to remove part of the cyst, and do biopsy to check for cancer. In the meantime, I have to live with this pain, and hope to god, that it isn't cancer, cause if it is, its getting a mighty long time to spread, and do whatever it wants to do. Of course i was absolutely shattered by this development, and all they could offer was that they have set up an admittance plan with the ER, so anytime I present to emergency, I am to be admitted straight away, and put on stronger pain meds. He told me my case is very high risk surgery, and he needs to make sure he has all possible scenarios in place. Was that supposed to make me feel better, I don't know!!!!!!!!!! I feel like I'm a walking time bomb, and they are playing russian roulette with my life. Am I wrong to feel like this? If my insides are so bad they can't see how to get in there, what else can be hiding in amongst the tangled up mess, that is my abdomen. Finding out I won't know when they are going to be able to help me is almost overwhelming, let alone thinking of dealing with this pain for another 2 1/2 months. Any thoughts, before I drive myself completely mental

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483733 tn?1326798446
by TrudieC, Nov 05, 2009
I am so sorry you are having to wait again in so much pain and uncertainty.  Try and find comfort in knowing that they are trying to be as careful as possible in protecting your quality of life.  I have had extensive previous surgeries as well - 2 ectopic pregnancies with bikini cut plus removal of entire large colon and then after a year with an ileostomy a rebuild of rectum out of my small bowel which they call a pouch.  It took longer to get my cyst surgery booked as well as the gyn wanted a general surgeon in there with him to deal with the adhesions and to ensure they didn't hurt my bowel or pouch.  I had requested a total hysterectomy when they were in there since it was high risk and I didn't want to do that again but no dice.  They only removed my ovary, cysts and tube because all my internal organs are glued together.  Luckily all was benign though and I was very thankful for the extra care they took.

Anyone would feel like you do going through this.  Can they give you something for anxiety as well as the pain meds?  I needed that and 2 weeks before my surgery my pain was so bad and I couldn't wear any of my work clothes due to the swelling so doctor put me on house arrest.  I worked from home but did not drive anywhere.  Can you go on short term disability if you're working?  I immersed myself in TV and movies and books in order to try and keep my mind off of everything.  I also ate too much and drank a whole lot of wine - at least it relaxed me.  

You are in my thoughts and prayers and feel free to vent at any time.  

334400 tn?1276894313
by Crochetya, Nov 05, 2009
To Russian,

The only reason for the delay would be caution not to distrub your previous corrective surgery.I had the same a year ago. I know your pain. I couldn't wait for it to be over. My surgery history is almost the same except the bowel. I have IBS and never had surgery for that.My surgeon was an Onocologist. Before the surgery I just took pain meds and stayed in bed. I was actually draging my left leg, it was more than time for the surgery. I would not have found out anything, if I wouldn't have gone for my yearly checkup. Tell any and everyone you know not to miss their yearly mamo and ob/gyn checkup.

I hope things go well for you, Good Luck!

458072 tn?1291415186
by peggy64, Nov 05, 2009
I would call him back and tell him that the pain is excruciating, YOu have been dealing with this now for months and it is time to get this done. i don't understand what is going on with the surgeons. If it were an emergency, they would not make you wait that long. Tell him this is an emergency because the pain itself is causing problems that you can't deal with anymore.


Avatar universal
by Katie116, Nov 05, 2009
The one thing I've learned is that you have to be your own advocate. Look for another ob/gyn and get a second opinion at least. My DIL got a third opinion, and it is the opinion they chose to go with. Waiting in all of this is the worst part. That may be true, because your pain may be worse than waiting.

My DIL had 'frozen pelvis' where they said her organs were glued together. After multiple chemo treatments, they became uncovered and loosed up.

I hope you will get on the phone & demand to see another gyn/onc. Immediately.

1046985 tn?1305117048
by wannasmile63, Nov 05, 2009
Thanks everyone, I have made a new appointment with my GP, to get a referral for a second opinion. I know they have to get this right first time, but as you all would know, it tends to get so draining, dealing with pain daily, especially when the end seems to get further and further away. The thought of facing my job full time seems almost impossible, as like Crocheta said, I feel like I'm dragging my leg around. I start the day ok, but slowly but surely, every hour the pressure seems to build and build, til I just need to be horizontal, oh well, guess seeing as though I work in a furniture store I've got plenty of beds to choose from. My beautiful MIL, has even offered to pay for me to go private. Taking a week off work at the moment, to try and get myself together, especially mentally.

329994 tn?1301663248
by lvfrogs, Nov 06, 2009
This is certainly a dilemma. I believe that you should not be dealing with the pain for 2 1/2 more months. That is untolerable and I wouldn't accept that. You have to be firm.  I appreciate the fact that your doctor wants to coordinate things with a bowel surgeon and that seems like a really good move considering what all you have going on but I would think they can get you in sooner. If you had to go to the ER in an emergency, they would find the doctors to do it, so no excuse waiting.  Ask your GP about going about setting that up.  
I know what it is like to wait around and to be suffering. Trust me, if it was the doctor themselves or their wives/husband, it would get done. We have to be persistent but you also want it done correctly.
Thinking about you, praying for you!
Colleen

Avatar universal
by helenl89, Nov 07, 2009
living in the kind of pain u describe is very draining menatally and physically. i agree to push the drs to resolve this a.s.a. p. Don't give up with the drs. in some cases i have gotten down right nasty with them. hopefully by then you will get results. let us know whats going on when you find out. lol

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