fistula

Likely fistula 25 years later- but can't find!!

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fistula

Postby zinnia » 26 Mar 2017, 17:10

So- the saga: three days after child was born 26 years ago a surgeon lopped off a large thrombossed hemm. As the natural swelling of my body went down incision slipped inside and ultimately tore- leading to 9 mos of abscesses on outside and surgeon poking and draining-frequently- and I drained myself when I had to. no talk of surgery- and I was a pretty alone mom , hard to get to doc, and nursing so couldn't leave for surgery/Finally had a fistulotomy.
Flash forward- last year I felt a lump in same area, but it went down. Came up again New Years and a surgeon said it must be related to old scar tissue, but lets get it out- as it could be a cancer. He took out a nodule of of old chronically inflaming scar tissue. Looked around and saw no fistula.
It has been 12 weeks- hard to heal a deep cavern from inside out- and no reference- not really an abscess, not really a fistula- at 9 weeks post-op I was nervous and he ordered an MRI which showed a possible small transphincteric fistula in area where I had just had surgery. Doctor kind of threw up his hands saying he had looked and looked, that I heal weird, he had never seen anything like this etc. It was unsettling. I asked if the enhanced area could be the new scar and he couldn't say. He did not look at MRI, just read report and referred me on. (He had not told radiologist that I had had surgery recently and even though I wrote it down, no one acknowledged that.)
I have met with a new surgeon- who seems more knowledgable, but saw me at end of day as he was dashing to a meeting, so he didn't look at scan either and said he preferred doing an ultrasound and dye test as fistulas could be really hard to find. Currently I get a hard lump in area- but he poked around and it it draining again. He said by now, 11 weeks, it should be healed. I also have an fissure over my old fistulotomy scar.
I am pretty undone- this brought up horrific memories of a hard time many years ago, and I had this lump taken out early January so I could get on with life, but now I start again. This was year to finally have a vacation alone w/husband first time in over 30 years, celebrate daughter's graduation, etc etc. Have had a few rough years with losses and illness and this just sucks. I guess I am going back in with new surgeon for EUA- and he will see what he can see- he rushed me out so fast that we didn't review, so I hope I can call first- I waited at home all day Friday for his call and admissions testing call and no one called. I do not do well with that! Mostly my fissure hurts for simply reason of faster stools. We didn't even talk about that- Will I have a moment with him to ask those questions before being knocked out? And anyone have have ultrasound for diagnosis?
I am having a hard time feeling like ever doctor is rushing and not really listening to my story, so I just want to get this right. Sorry for lengthy rant- I used to be signed on here but it must have been cancelled so I had to jump thru some hoops to reconnect! :oops:
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Re: fistula

Postby zinnia » 26 Mar 2017, 21:28

now the clear seepage seems to be whitening... not a good sign!
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Re: fistula

Postby zinnia » 27 Mar 2017, 14:15

If anyone has any words of wisdom for strength and calming I would appreciate! I am losing it waiting for doc to call (since Friday ) and knot is hard, fissure over old scar screaming and internal hemm also upset. Terrified I will get a seton and this will continue. Feel like last three mos was a total waste of time. :-(
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Re: fistula

Postby patience_and_healing » 31 Mar 2017, 22:38

Dear zinnia, this sounds like an awful situation. But just remember, you'll get through it the same way you've gotten through the other difficult events. I've recently read up on the body's response to pain, and we feel additional pain when it triggers painful memories or future fears. This is not always in our control, but try to be aware of the difference between your body's response to pain, and your mind's reaction to it. Keep your mind on the present, and you'll get through this. You can do it!
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
Currently in pelvic physical therapy
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