Scheduled TVH Trading heavy bleeding for problems post-hysterectomy? (have factor v leiden, hole in heart, MTHFR gene mut, clot probs) | HysterSisters
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Trading heavy bleeding for problems post-hysterectomy? (have factor v leiden, hole in heart, MTHFR gene mut, clot probs) Trading heavy bleeding for problems post-hysterectomy? (have factor v leiden, hole in heart, MTHFR gene mut, clot probs)

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  #1  
Unread 01-11-2015, 08:03 PM
Trading heavy bleeding for problems post-hysterectomy? (have factor v leiden, hole in heart, MTHFR gene mut, clot probs)

So many times I have read don't get a hysterectomy unless you are dying or no other alternative at the very least. This TVH in my mind is more elective than necessary. I am 35, no kids, have had 7 mini-strokes and take a blood thinner (Xarelto) every day.

My periods, cramping, etc are overwhelming and most months it isn't just during my cycle, it's throughout the month, unpredictable so that makes me not a candidate for ablation. (Why? Because the abnormal bleeding throughout the month, it would be hard to determine post ablation if it's cancer or just the blood thinner.) I can't take birth control or have any hormones for the stroke risk-so no hormone therapy for me in the future. And I did try the Mirena, but that little torture device caused me months of agony before I begged them to pull it. My body rejected the fishing line (threads) that hung down. It felt like I had a yeast infection constantly and like having twigs shoved up there. Wow that was bad.

Back to the ablation, I was very fearful of the post ablation syndrome, too, that could ultimately lead me to hysterectomy later on. I guess it comes down to I'd rather have a major/semi-major surgery in my 30s than my 40s because my stroke risk will only go up with age. In case anyone else reading this has the same medical conditions, I have factor v leiden, a hole in my heart (PFO), MTHFR gene mutation and newly discovered SLE (lupus). My doctor calls me a walking stroke. I am 5'7", 128 lbs, non smoker (ever) and basically those stats right there are what has kept me from a major stroke...according to doctor.

I fear I am trading horrible, painful, uncontrollable and overwhelming periods for a permanent bladder problem or early menopause or whatever else is out there. The doctor isn't planning on taking my ovaries (she wants to bc she thinks that'll reduce my risk of stroke) but I just want to enjoy my life, not end periods for menopause. But she said she'd look at the ovaries and if there's anything shady about them, she's yanking them.

It is scheduled to be a vaginal and I hope it's a vaginal, but she said because I have no kids she may have to start vaginal, then go 3 holes in the abdomen and then if things still aren't moving, do a full abdomen. I guess that's like a c-section. Oh joy. It'll be a surprise when I wake up and take inventory.

The thing I fear most (short term) is the catheter. I already have had issues with my urethra from a trauma 14 years ago...so I am going to take Pyridium and hoping I don't get a UTI. That would be the ultimate cherry to the sundae when it comes to pain. (And yes I fear having a major stroke on the table because I'm off my blood thinners...but positive thinking. Let's see how far that gets me.)

I'm not going to miss the uterus. The uterus doesn't mean I'm missing out on our purpose for being on this earth-to procreate. I don't care about that. My uterus is my nemesis only there to torture me and make me risk my well-being further to deal with it, so good riddance.

I wasn't going to post, but hopefully someone else is in my same boat....wait, that came out wrong....hopefully someone else that's young and unfortunate enough to be in my boat will get some help with their clotting disorder by reading this. I know this whole thing is rare, but you aren't alone.
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  #2  
Unread 01-11-2015, 08:49 PM
Re: Trading heavy bleeding for another problem post hysterectomy?

Hi dancing247 to HysterSisters!

I am sorry you are going through so much. And I know this can be a difficult decision to make. I cannot answer your question if you are trading one set of problems for another. It sounds as if you have tried multiple avenues before coming to this place.

Hopefully you can keep your ovaries, and that you will not have to have abdominal surgery. Obviously your doctor knows about our stroke issues, so they will take measures during surgery. And you are right... positive thinking.

And you are not alone either. We have many women on this site. Hopefully one with similar experience will see this post and respond.

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