Hi everyone,
I'm 3 weeks away today from my GCS with Dr Christine McGinn. I'm a feeling a bit melancholy because I should have been just a week away today. Unfortunately, on February 26, I ruptured my Achilles Tendon playing basketball with my team. Although, the plan had been to go ahead with the surgery on April 3, despite the injury, Dr McGinn has since reconsidered after considering my Achilles surgeon's concerns. The increased risk of DVT after GCS from one of my legs being in a cast was too significant to ignore. Kristal says it is crucial that I'm weight bearing with that leg by the time of my surgery. My calf muscle needs to be able to work to lower the risk of clots developing. The calf would be too immobilized if I were still in a cast. I should be fully weight bearing in a walking boot the day before the surgery so I'll be good to go, but we're cutting it close!
Having my mobility hampered while recovering from GCS is going to present some unique challenges. Rehabbing from my Achilles surgery while recovering from GCS, will present even more challenges. Just this morning after talking to a friend, I realized that my bowel prep could be complicated because I certainly won't be able to run to the commode if necessary. UGGH!
There will other complications I won't be able to anticipate. I'm still having the surgery next month though, as long as Dr McGinn is willing to perform it. Delaying any longer would be too devastating to contemplate. I will try to post about how my recovery goes, the good and the not so good. Reading about the experiences of others has helped me so much to prepare for what to expect, and I'd like to share also if it could be of benefit to others.
I hope I'll be able to show that you can still have GCS while recovering from a lower extremity surgery and successfully get through it. I'd like to share how my recovery progresses despite this added complication. I've been mentally preparing for the added challenges for 3 weeks now. Although I'm feeling disappointed that this happened and for the delay, I am more determined than ever! Hoping and grateful for any positive thoughts, vibes, and prayers leading up to and for my April 17th surgery!
Thanks so much!
Julie
Best wishes for a speedy recovery.
Post-op weight bearing is very important, as there have been a few deaths from deep vein thrombosis. Post-op DVT is not common, but it does happen. I trust you are not a smoker, because that is another risk factor for DVT.
Sorry to hear of the delay but sounds like a wise decision. Dr. McGinn is one of the best.
You are right about recovery being more difficult without full use of both legs, but since you were playing basketball I bet you're in excellent shape and that is key. I was surprised how physically challenging the first couple weeks are - I'll never forget how much effort those first few steps across the room required - although I found it most important to have good upper body strength. Things like getting into or out of a chair were much less painful if I supported my entire body weight with my arms.
And there is an upside. With your leg recovering and your surgeon ok with your updated schedule, once you're finished with both recoveries you are really done and not about to start another one. That's why I scheduled all my surgeries for this year, so I can get past all the recoveries as a batch.
Best wishes for April 17. You'll do great.
Kendra
I know how much you want the surgery, but you also want to be safe as DVT is serious. Good Luck to you
Thanks Dani, Kendra and mm for the well wishes!
I have a lot in my favor to help compensate for the added challenges. I'm a non-smoker and I am very fit and active at 49. I'm a courier for FedEx so I have been able to retain more of my strength than I would have expected after being on a transition level of HRT for almost 2 years now. Often in my job I'm kind of self conscious that I'm strong but I know I will be grateful when I need to gently set myself down onto a chair!
An other issue I already need to deal with that differs from most other patients is that of my HRT. Dr McGinn already requires her patients to stop HRT except for Spiro 2 weeks prior to surgery. My Achilles surgeon strongly urges his patients to be off of HRT until after their cast is removed. My HRT is Estradiol Valerate by IM injection weekly and progesterone daily. I have never taken an anti-androgen as my protocol was able to suppress my T with Estradiol only. So when I found out I needed surgery for my Achilles, I had to stop the HRT. It would have been 9 weeks until I would be cleared to resume! Can you imagine going that long! I asked Kristal if she knows of any patient of Dr McGinn's going without for that long leading up to and after GCS and she said no. Although my risk of DVT has been greatly decreased by my use of a parenteral method of HRT administration, DVT risk is greatly incresed by the type of surgery I had over many other surgeries. If I got DVT or a DVE I faced a reality more horrifying to me than a possible stroke in that I would not be getting GCS until after at least 6 months of taking some kind of blood thinner!
I managed to make it 3 weeks off my HRT. I became so despondent, withdrawn, and irritable, and just a wreck. My skin and hair fairly quickly became oilier and I felt very dysphoric especially when I could see new dark beard growth begin. I knew and everyone around me knew I needed to find a way to resume my HRT. I went back to the surgeon with research in hand to argue that I was willing to accept the still slight risk of a DVT. I remember saying to the PA that if I get a clot then I guess it just wasn't meant to be! She said they aim for more certainty than leaving it to fate. She was understanding to a degree, although by her questioning it was clear that she felt this was more in my mind than anything biological that was making me feel so horrible. She eventually agreed that a negative mental state or depression would likely significantly hamper my recovery. She then asked me to consider taking Lovenox, a blood thinner that is taken daily through a subcutaneous injection in the abdomen. After confirming with Dr McGinn's PA Kristal that this would be okay until 2 weeks before my next surgery, I was cleared to resume my HRT for the time being!
The Lovenox is like Heparin and the shot is painful and sometimes burns for like 10 minutes afterwards. I dread it to be honest, but I have less than a week to go now until I am done. The good news is that within hours of resuming my HRT I felt my body and mood return to what I have come to know as normal! Unfortunately, the Lovenox makes me more susceptible to bleeding. Simply banging my head could be fatal. My spouse joked about me wearing a bicycle helmet when using my scooter! Lol I also have a horrible and painful bruise from one of the injections on my side. It worried my spouse and I until I googled images of Lovenox bruising. There were pictures of women who had bruising that was identical to mine from their Lovenox usage during pregnancy. It reminds me of Jupiter's Great Red Spot! Lol
I begin PT for the Achilles on Monday 4/2 and will have 4 visits before my GCS. This should help quite a bit in getting me to a weight bearing state. My physical therapist plays basketball with me sometimes and knows my story so I'm so relieved! She was actually there playing on my team the night I injured myself, and knows how important it is for me to come back from this! She says that being mostly bedridden after my GCS will actually help in my Achilles rehab. She will give me exercises that I will be able to do while in bed! I'm not sure how long I will need to wait before I resume PT with her after my surgery but I'm hoping for maybe 15 days after GCS? Might be overly optimistic, but a girl's gotta have goals!
Twenty days and counting!!!
Cheers everyone,
Julie
I just wanted to give a quick update. With just six more days to go, it seems my Achilles won't be an issue after all! I'm one week ahead of schedule with that recovery and have already transitioned into a walking boot! No more, crutches! Yay! Getting around is not difficult at all and I'm pain free. Stairs have not been a problem. DVT risk is significantly less of a concern, now. So for all my worries, my recovery should be no more difficult than it would have been had this not have happened. Postponing the surgery until I could be off crutches was definitely the right decision. I'll still wear a removable cast for the surgery, just to protect the tendon, but that won't be an issue. I stopped HRT last week and so far this time around I'm tolerating it much better. :) I'm happy to be done with those Lovenox injections, too!
I hope to resume physical therapy the week of May 1, which is 2 weeks post-op. We'll see if I'll feel up to it. Well that's it for now. I feel ready and Tuesday really can't come quickly enough!
I had my GCS yesterday afternoon. Dr McGinn was ahead of schedule so we had to rush over to the Barix Clinics. In the end the Achilles wasn't much of an issue. My removable cast would not fit into the stirrups properly so I wasn't allowed to wear it.
What we did instead was wheel me in to the operating room fully lucid and awake. There was an orthopedic nurse in the OR who helped in placing my recovering limb into the stirrup. It was surreal being strapped to the table with my legs up and in position. I thought I'd get claustrophobic but I was calm and ready! The mask was put on my face and sleepy time followed.
The surgery had no complications and Dr McGinn told me I have a lot of depth, but I won't find out the measurement until Monday. Everything is going very smoothly. I am getting ample relief from IV Tylenol this afternoon. I think I may be done with the morphine. I've been out of bed standing while in my walking boot. I'll do this again later tonight. Tomorrow I take a short walk!
I've been getting the Zaps in my new parts followed by muscle spasms in my pelvic floor. It's a bit uncomfortable but feels good too! It certainly reassuring to have sensation in the sensitive areas, So for now it's just try to relax and let my body heal. I should be discharged on Friday. I'm hopeful that things will continue to progress smoothly, but I realize there's a lot more steps to go. I'm on the right road, though and blissfully happy with the new scenery.
Yay!! Congratulations!
Awesome news Julie! I'm glad to hear all is well and you're able to move about comfortably.
Julie,
Congratulations! I just found your thread. I am a McGinn Girl too. I am so happy for you and glad the leg didn't delay you further. Are you staying at Gaia when you get out of the hospital?
Moni
Hi Julie,
Congratulations on Having GCS, I am happy for you. I had GCS with Dr. McGinn 11/2016 and revision surgery two weeks ago. Dr. McGinn did awesome work on me. I now have a beautiful vagina.
Follow the doctors instructions. She has your best interest at heart.
It's been a few days since my last post. Everything continues to go fairly smoothy! We're now at the Gaia House and I'm settled in. Still no issues with the Achilles. This morning I managed 3 laps around the floor before being discharged. Gaia House is comfortable and I'm glad we chose it. The only issue I'm having is with my catheter. Basically Dr McGinn has it capped before being discharged. To go to the bathroom you have to uncap it in front of the urinal and go standing up. Some urine leaks around my catheter and makes a bit of a bloody mess. Dr McGinn said not to worry about it so I won't. It's coming out on Monday with the packing. Monday can't come soon enough! Pain is easily controlled with Tylenol I'll take the stronger stuff before my visit on Monday, though. I understand that it may be a bit uncomfortable. We'll see, but everyone is different. Prepare for the worst, hope for the best! ;)
Julie,
I am glad to hear you are staying at the Gaia House. Bill makes a great breakfast, plus he is very nice. When I was there I had the basement room but couldn't do stairs. Some of the other girls came down and we partied in my room and we have kept in contact ever since. It is a good way to commiserate with others and compare notes. I recommend it.
I think each in our group had a different issue, but Dr. McGinn will take care of you. I hope you can concentrate some on what this means in your life and not focus too much on the pain. I look back on that period of my life and the pain is barely a memory. The change in what that surgery did for my life is what will stick with me forever. I do hope the pain and discomfort are not bad for you though. I am very happy for you.
Monica
Thanks Monica!
You are so right and I feel like pinching myself to see if I'm dreaming! I'm fortunate that the pain has not been an issue so far. We are on the second floor and the stairs weren't too much of a problem, thank goodness! I just took them slow and steady. I'm sure all of us ladies here at the Gaia House will get the chance to mingle. For now it's just bed rest with bathroom breaks. :) Looking forward to Bill's famous breakfast tomorrow! Thanks for the reassurance!
Julie
Quote from: Julie Agnes on April 20, 2018, 06:31:04 PM
It's been a few days since my last post. Everything continues to go fairly smoothy! We're now at the Gaia House and I'm settled in. Still no issues with the Achilles. This morning I managed 3 laps around the floor before being discharged. Gaia House is comfortable and I'm glad we chose it. The only issue I'm having is with my catheter. Basically Dr McGinn has it capped before being discharged. To go to the bathroom you have to uncap it in front of the urinal and go standing up. Some urine leaks around my catheter and makes a bit of a bloody mess. Dr McGinn said not to worry about it so I won't. It's coming out on Monday with the packing. Monday can't come soon enough! Pain is easily controlled with Tylenol I'll take the stronger stuff before my visit on Monday, though. I understand that it may be a bit uncomfortable. We'll see, but everyone is different. Prepare for the worst, hope for the best! ;)
Hi Julie,
Another McGinn girl here, had mine back in February.
Yes, catheter was a pain, amongst other things. If I recall, I just sat on the toilet, pinched the tube, uncapped, and pointed & released. That way anything coming out around the catheter went in without mess. I always had leak by, but managed.
Ended up getting Poise pads to deal with mess. Yes, they were huge, but they kept everything contained, and I never worried about any urine or blood leakage.
Here if you have any questions or just need a buddie :-)
Emily
Thank you Emily!
That's some really good advice! What I've found also is if I don't wait until I'm desperate to go, like at the three hour mark, there is only very minimal or no leakage around the catheter. I drink a lot of water, so three hours during the day just isn't realistic right now. I've been making it 2 to 2.5 hours and it's working out better. Went the whole night, also which was nice. Just two more days to go! Blink of an eye! :)
Thanks again,
Julie
So Emily, Rachel, Kendra, are we gonna tell Julie how wonderful dilation is? How we just couldn't wait to do it that third forth or fifth time each day? Oh, and what a joy to clean those dilators after each dilation. I almost cried when I could only do it three times a day instead of five. (Come on ladies, we can lie a little bit, can't we?)
How was breakfast? Meet any other ladies yet? We had quite an age range from 17 to 60. Sad to say I wasn't the 17 year old. lol Well, I hope you concentrate on resting. It is the best thing you can do for recovery. Hope you keep us informed.
Moni
Good morning, Julie!
Congratulations for all you have achieved, for SRS is a long, hard road. For now, relax and enjoy it. The food is great and the scenery idyllic.
Getting the packing and catheter removed is no big deal. I didn't find it painful at all. In fact, none of the first week or so was very painful, but I made ample use of the morphine pump in the hospital and was using Vicodin afterward. I thought, "This isn't so bad!" But it's not like getting FFS. That was severe pain for a few days, and then it was more discomfort. SRS is more discomfort... that never seems to stop.
I was not typical in that I had constant pain for weeks. I had to go back to work after five weeks, and that was tough. I couldn't function without Vicodin. I had an open incision that was draining and had to have it packed at the six-week follow-up. McGinn told me, "You're the first patient I have refilled a Vicodin prescription for in three years." Great. It took me five months until I could sit down without pain.
In my opinion the scariest thing about day five, your first visit to McGinn's office post-surgery, was getting a look at your new parts. Stitches and angry red scars, plus I had some necrosis at the bottom of one of my labia as well, so it looked black and awful there.
Funny memory: the morning of surgery I was getting ready to leave the hotel for the hospital, and I had to pee. I stood before the toilet, thinking, "Last time I'll be peeing standing up." Then, of course, after you leave the hospital you have to pee - standing up - only through a catheter. How ironic.
Again, congratulations!
Blessings to you,
Terri
I discovered the first few weeks of dilation is about as enjoyable as cramming a carrot all the way into your ear (https://www.susans.org/forums/index.php/topic,230213.msg2085718/topicseen.html#msg2085718). But you will get through it, and it does get better. ;)
Gee Kendra, can you make it sound any more fun than that! Yes this is what I longed for. BTW: Great analogy.
Thank you ladies!!
I really appreciate the advice and the anecdotes! I agree that the pain isn't as great as in FFS, which I had last July. Recovery from GCS feels to be more of an emotional and mental challenge so far. There's just more to keep track of and more steps in trying to achieve the best possible outcome. Dealing with my Achilles adds an other layer to all the challenges. I need to consider that limitation in all that I do, right now and it can be frustrating. For example, I can't even put the walking boot on by myself. I can't walk without the boot. I do much better just trying to stay in the moment. Difficult to do, but if I worry about all the possible complications, I begin to feel overwhelmed. I've taken this step and it is a wonderful feeling, blissful even. For better or worse I'm committed to continue upon this path. It's a beautiful path I'm on, too. Just one step at a time. :)
Quote from: HappyMoni on April 21, 2018, 08:27:31 AM
So Emily, Rachel, Kendra, are we gonna tell Julie how wonderful dilation is? How we just couldn't wait to do it that third forth or fifth time each day? Oh, and what a joy to clean those dilators after each dilation. I almost cried when I could only do it three times a day instead of five. (Come on ladies, we can lie a little bit, can't we?)
Not sure if McGinn changed this for everyone, or if it was just me. I only had to dilate 4x daily. After my checkup at 7 weeks, I'm down to 3x daily, and can use just 2 dilators (smallest & #3).
I could get orange in at 6 weeks, but am not going to try again for a bit after being treated for granulation last week. Need a little time, as #3 takes a little getting fully inserted.
Yes, dilation is a total time sink. Hint: don't read or watch anything funny. Seriously.
:-)
Quote from: Kendra on April 21, 2018, 09:23:32 AM
I discovered the first few weeks of dilation is about as enjoyable as cramming a carrot all the way into your ear (https://www.susans.org/forums/index.php/topic,230213.msg2085718/topicseen.html#msg2085718). But you will get through it, and it does get better. ;)
You had a carrot? I had a baseball bat and it was in 6 inches of snow!
Quote from: HappyMoni on April 21, 2018, 10:35:58 AM
You had a carrot? I had a baseball bat and it was in 6 inches of snow!
I swear the packing felt like a tree trunk growing out of my bottom. I'm serious!!
Just ask Bianna and Crystal about tree trunk girl Monday :-)
p.s. dilating right now :-)
There's a scene in a stargate sg1 episode (season 4 ep 16, "2010") where a tour guide says "and we're walking!" in such a chipper sarcastic voice.
So..... and we're dilating!
Congratulations :)
Having seepage around the catheter is good. It means the swelling has gone down.
Dilating 5 times a day is very draining and I was so happy when it was reduced to three times a say and then 1 time a day.
Getting the packing out was very cool. I had a thought when it was being pulled, is it ever going to end and will a rabbit come out of there. The pain was greatly reduced and walking was so much easier.
I had a revision with Dr. McGinn on 4/4/18 and was given a catheter with a valve. I liked the much more than the red stopper.
I had heard other girls say the unpacking and dilating was painful but that was not my experience. I did not take any narcotics outside of the hospital when I had GCS. I took narcotics 3 day after the recent revision.
I have to say Dr. McGinn does nice work. I am very happy with the revision :)
Reading about everyone's different perspectives is so helpful! Anyone have a post surgical gout flair up? That's what I'm dealing with right now. :( It's not the worst flair up I've ever had but it's painful enough! The last gout attack I had was 5 years ago, after a surgery. I had two surgeries after that with no issues until this one. I'm taking 1000mg Tylenol every 6 hours to try to manage the pain along with ice. Some of the common treatments for a gout flair up such as nsaids and steroids aren't really allowed during this surgical recovery. Hard to say exactly what caused this but excessive protein intake can bring upon flair ups as well. It's just another added challenge that makes walking more difficult. Got some black cherry juice this morning too, so that should help. I really hope it's feeling better by my appointment tomorrow.
So far, the only GCS issue I'm dealing with is the leakage around the catheter. It could very well be due to the lack of swelling which would be awesome! It's just annoying because it saturates the dressing and gauze down there and seeps for awhile. More uncomfortable than anything and hopefully it doesn't cause a rash. I feel pretty confident that I will be able to go with no problems once the catheter is removed, so there's that. :) My spouse took a peek down there and she was so impressed how good it all looks just days after surgery!
Julie,
I have heard others describe their first look down there in terms of Frankenstein like Frankengina or some such thing. Be prepared, it ain't purty to start with, but it changes pretty quickly. I look back at some of my first pictures and kind of go. "Wow, I looked like that?" Now I can't remember what my penis, Clyde as we called him, looked like or even where it would attach. It is wonderful!
Moni
You're right. I couldn't even look as I get sick at the sight of open wounds. As it quickly healed I was pleasantly surprised how "real" I looked. Monica I can't recall the former appendage either. It seems like long ago and far away.
I'm sorry to hear of the gout (I had to look that up) but hopefully it will pass soon. Thanks for the update. You're doing well!
Quote from: Julie Agnes on April 22, 2018, 09:27:48 AM
So far, the only GCS issue I'm dealing with is the leakage around the catheter. It could very well be due to the lack of swelling which would be awesome! It's just annoying because it saturates the dressing and gauze down there and seeps for awhile. More uncomfortable than anything and hopefully it doesn't cause a rash. I feel pretty confident that I will be able to go with no problems once the catheter is removed, so there's that. :) My spouse took a peek down there and she was so impressed how good it all looks just days after surgery!
Yes, it felt like forever from surgery day to packing removal day, with each bathroom break an incredible challenge. We're grown women after all, and here we are leaking out like geriatric patients!
Yep, leakage soaked the packing all right. Don't worry, when the catheter & packing are removed, you'll have all new stories to tell about peeing with your new old bits!
I will be at Papillion tomorrow at noon. I know GCS patients are first thing at 9:30 so I will miss you.
With my revisions I look fantastic down there. My initial GCS was a challenge and Dr. McGinn did what she could at the time. Now, I have a beautiful clitoris, minora and the bottom of my vagina is perfect. I am super happy :) .
Sorry I missed you, Rachel! The office waiting area was so packed when I left! Hope you don't have too long a wait. Thanks again everyone for sharing some of your experiences from those first few day! Today has been a day of firsts for me.
Started this early this morning with a BM. So glad I didn't go to the Vicodin because of the Gout pain! I was very tempted. Appointment was great as well. No "frakengina" here! Lol Very little swelling and no soreness. Seems like all of that went into my big toe! ;) Dilation was very easy, too this first time in the office. I got over 6" of depth. Hopefully my first time solo goes well, but I'll just take my time. Got back to Gaia House and downed a liter of water and a big glass of Cranberry juice. Ten minutes later had my first pee. Thankfully, no issues or mess. It just went straight down! Couldn't believe it. Just went again a few minutes ago and the stream was much stronger and again straight down. I'm guessing it's because I have so little swelling so far.
Well I'm off to my first shower, and then my first solo dilation. After all my worries of this weekend, I really needed today to go well. Thanks again to all who took the time to share in this post! It was so helpful to me and I'm sure it will be helpful to others!
Julie, I am glad everything worked out for you. You must be so reliever (LOL).
My appointment was at noon. I was seen at 2. The waiting room was packed is right. I had a very good visit and am pleased. My next visit if all goes well is in 1 month. it will be on a Thursday. Mondays are busy.