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I got a phone call from Dr Lee’s office, on Tuesday, telling me that the next available time I can see Dr Lee (in conjunction with Dr Herschorn) would be October 22nd. I was not happy about this date – as I have been waiting for 6 months to finalise dates – so I told the assistant that I have been waiting for a very long time; I basically gave her the whole song & dance about how I have been screwed over by Dr Allen, my life is on hold, if I don’t see the doctors soon I will just give up and live out the rest of my days with a steadily decline body. A half hour later I got a call saying I could come in the next day.

Result! I knew tears could work. Huzzah!

Saw Dr Lee on Wednesday. She seemed to be highly amused by my take on my medical situation – I take a fairly light-hearted approach towards it – and my journey in trying to cajole and assert myself over the doctors. She agreed to take part in the surgery. The next hurdle, getting a meeting with Dr Herschorn.

Dr Herschorn is a very very busy man. One of the top urologists in North America and “the” specialists for adults with exstrophy in Canada…. not my words, Dr Lee said this. So such a busy man has a very overworked and stressed out assistant – she goes by the name of Franca. Lovely woman, Franca, and very empathetic… I just know she’ll go the way of the others and burn out soon. Anywho, I can’t get through on the phone with her so I go down to Dr Herschorn’s office and stalk poor Franca.

I managed to finagle an appointment for Thursday, yesterday. I saw Dr Herschorn, after a very long wait in the waiting room. The man took a much needed 6 week holiday during the summer, so all his office appointments are very behind. Franca has been scheduling office visits between his bouts in the Operating Theatre. So yesterday I was scheduled to see him at 11:45pm but he got called away. I was offered another appointment, so I could come back later. I refused…there was no way I was leaving until I saw Dr Herschorn.

Finally, after several hours, I saw the fellow. We discussed the upcoming surgery, what will be done, and what some of the long-term effects of the surgery will be. We didn’t set a date since he needs access to the OR Scheduling System. Franca is to give me a call next week to let me know the date. I asked Dr Herschorn if this means that the surgery will be in November – and told me, most emphatically as well, no it *will* be in October.

Now, the further details on the surgery:

  • the stoma will be through the bellybutton
  • the incision not be along the bikini line (it’s too scarred from prior surgeries) so it will be the vertical one that runs alongside my bellybutton
  • I will have to carefully watch for bladder stones – that’s one of the side effects of the surgery, a greater chance of developing bladder stones.. I didn’t know this, but I do now
  • Dr Lee will do an episiotomy (sp?) on me to increase the size of the “opening”
  • seems my cervix and my uterus are prolapsing (joy) so both need to be raised and anchored – Dr Lee will be doing this
  • Dr Lee warned me that with her portion of the surgery completed it will take me 10-12 weeks to recover from her portion of the surgery
  • Dr Herschorn’s portion will take 4-6 weeks to recover
  • After the surgery I will have 2 drainage tubes along the suprapubic, I will have the stoma with a tube sticking out.. the stoma needs to fully heal before the tubing will be removed.. in the meanwhile there will be another tube sticking out of my lower abdomen which will be connect to one of my urethers (I believe)
  • According to Dr Lee a small portion of women who have the procedure she is about to do for me experience pain after intercourse even several years later 
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