3.5 months post surgery

Hi all,
Sorry for the delay. A lot been going on but thought it important to update you.
 Last time we had below questions

• 1) when is the bleeding going to stop. They said in time. 
• 2) how to fix the leakage and the other 3 holes including the cuts under penis. They said with time practise and medicinal honey. 
• 3) when are my balls going to drop. Again over time and keep pushing. 

So update is below:

- I got a UTI around that time and tested for it and got standard tablets. apparently everyone gets a uni lol. also cranberry juice helped relieve pain. my uti I felt pains when I was sleeping or early in the morning my lower right back to right side would ache like crazy. it wasn't appendix as was behind at the back so that's when I decided to get tested as was worried for kidney stones or worse. (don't trust google!) so ya after the dose of uti meds I got tested again and it was gone. 

- btw I went to someone to remove my belly button stitch - the doc who tested my uti was not sore. 

- last post was at week 5 being around 5 Jan from surgery on 2 Dec. I started driving from that week I think 11 Jan but had to use doughnut to sit on and pressed front foot against the side board to lift me up - I drive automatic so just needed one leg to accelerate and brake. its umcomfy but I gat learn some time. This time I was alone no family so had to take care of myself do all errands cook clean lift move things around not by choice just had no-one around etc etc. 

- I was walking funny like a cowboy for a long time. My family and friends used to ask me when will I walk normally. I read someones post they said after two months. This is about right - just after the two mark line you wake up one day and its as if your lego leg has moved into place a bit better. Practise walking. It still looked weird at month 2.5 but then I started walking normal and legs closed not cowboy.

- the drain always used to bleed then bleeding stopped around mid jan so that's after 1.5 months or 6.5 weeks ish. 

- Started work and used doughnut to sit on as well. use standing desks if you can. 

- I tried pumping in early feb - they  made me a pump which is merely a large syringe that you pull back - but my junk was facing downwards and with the hole at the bottom it was hard to put the pump around me plus my balls were still onto of my penis so even hardly get suction let alone put the penis in the pump. Any ways I had previously bought the below pump which I used instead - it has suction with every pump then deflates so I pump over and over ranging from fast to slow for 20 mins morning and night to get traction. I didn't off course start with 20 mins in feb - I did like 5 then 10 mins. First two days I started bleeding again out of nowhere so Miro and Borko said to stop for a week. It could have been too much pressure or too blood from surgery remaining. I stopped pumping after as was too scared I rather heal then pump and started pumping.

https://www.lovehoney.com.au/product.cfm?p=14360

- I recommend buying the below cheap STP its the cheapest and one I use / helped me. I know there is EZP and transthetics that have something that looks similar. I would say find the smallest if you have the budget for the others as you will be carrying it in your pocket if you have a problem like me and also will help on flights (small area where you can't spread legs if you sit down as much as you can in comfort of your home) and as you learn to pee. 

https://www.ftmessentials.com/collections/stp-devices/products/number-one-stp-powder-finish?variant=22301125185 

- after 3 months mark I started gym so did arms day, then back day then chest day. I ran a bit but just few mins and each day gradually increase. 

Now to update you on the main things.

- my balls have not dropped - all the times dr Borko said keep pushing down with two fingers I did religiously but nothing - not even an inch! :(

- my mate who did the same surgery would stay in touch with me and he did it say 3 years ago and he found a lot of differences in the methods they used on him vs with me eg balls higher than penis and also my catheter was removed earlier than him. perhaps they changed methodology or I was an experiment. 

- I went to a specialist in my country to check up the area as well and he had been to serbia to learn about micros work so I was in capable hands. his English was good as he was local so he was able to tell me what went wrong. so I don't have a fistula. I fistula is a small hole that you can close with finger and it will close in time and sometimes if it doesn't you have a revision. The new dr said to me I have a URETHRAL DEFECT. THE CONSTRUCTION WAS NOT DONE PROPERLY AND MY URETHRA COLLAPSED - WHAT THA FAAAAAAK!! 

You guys cannot imagine my disappointment - I did EVERYTHING they said for me to do - I listened to ALL instructions - I was over meticulous and careful - did everything in my power to make sure everything was in order - I even stayed an additional week in serbia for after care and to be cautious... and after all that.. this happened!!!!!!!!

This made sense now why during my check up in serbia with Miro that mark was checking me then he called Marta then they were pulling with saline solution coz they new something was overly wrong. I could tell they were whispering to each other and it didn't feel normal to me. Then I remember when I had the uncontrollable bladder leak where I peed from down there 6 times in a row - I had told the dr to come and check and no-one came until 2/3 days later. Did they know at that time that 'oh its broken now lets leave it' how I wish they were proactive and said ok you are here for some more time we will quickly remedy it. WHY didn't they  do that? I have so many questions..

When I went to the doctor/surgeon in my country the surgeon was willing to operate me to fix the problem - but when I emailed Miro he said that its too early and we need to wait after 3 months. I get that but why is one surgeon saying its ok to operate and another thinking its not? Isn't there a standard of care? Who is delaying? If anyone knows or can advise me please comment below. 

because I put allll my trust in Miro I postponed the surgery in my country to wait till month 3. I emailed Miro as to when we can do revision then he says to WAIT ANOTHER 2 MONTHS?? is this normal to you guys? My friends and family when I told them what's going on they said why is the surgeon delaying? any delay is not good. if there is a problem you need to fix it quickly before skin grows harder and thicker over the area - as it will make it more painful and difficult to rememdy. And if Miro said 3 months to heal why is he imposing a further 2 months? doesn't make sense to me... anyone? 

So based on the above I scheduled a consult with the surgeon in my country to see if we can proceed. Now with cover 19 not sure what's happening...

I am sad, I am disappointed, I feel I can't trust anyone, I feel alone and lost. What can us trans people do? especially when you are stealth.. its sad...

TO give you an idea \:

- under my penisat the bottom of the base there is a large hole that is where I pee from and that is where the urethra collapsed. 

- I have leakage through out the day so I had to wear pads.. can you imagine how that made me feel after 8 years on T to go back to pads??!!

- then you have to buy gauzes and put as a wedge to capture urine just like post surgery and I still use gauzes to this day 3.5 months post surgery....

- I couldn't take that dysphoria of pads so in Feb and March I started wearing fucking diapers... its like an underwear for men that is disposable - it kinda does have foam padding like a pad but it makes me feel a tiiiiiny but better, its for men with bladder or urinary leaks or old men who poo in the bed. Yes this is what I wear everyday along with gauze...this is my life. I really cannot take another 2 more months...!

New doctor says I need to redo the surgery again - patch up and correct. So I will need to have a small stint or catheter in my penis - have it reconstructed and then have the urinary catheter in AGAAAAAAIIINNNN!! I hate the catheter bag.. I just am saddened by the series of events above.. sigh.. 

Now there is a dent in my penis - not sure If it is dying.. as in there is hard or fleshy material on the head of the penis and the small shaft then in the middle there is a dent where its like skin only. Not sure if it is caused from the penis pump that sometimes ends there or the urethral collapsure...

To give you a visual

- red is skin (C) and the balls are yellow at A. they are higher than the penis. they should have been placed at the bottom of the red skin (c).

- the dent in penis is the D zigzag line

- B is the head of penis. 

So s I said they took the labia and stitches together putting balls at the top. it still looks like the female anatomy except the top labia has balls. I'm really disappointed and sad. WTF. :(::::::::::::::

x

WEEK FOUR & FIVE SUMMARY

I clearly can’t count or do maths aha but the last “week 2 summary” was “weeks 2 and 3” :) this summary is weeks 4 and 5! 

1. Apparently I have two raw cuts under my penis on left and right side. Dr took a picture and it was so pink and raw and he said I need to put gauze under so that my penis doesn’t rub against my scrotum to cause friction and also for moisture removal to heal. Took a few attempts to do it but listen to docs orders. Don’t be shy to ask for help the first time if needed.
2. Bought Medi honey by comvita as per one of my mates am who went through the same surgery. Will apply this after speaking to the doctor for healing the cuts above.
3. Oh how I HATE the catheter bag!! I dread it every night when I sleep around 930/10pm and can’t wait to take it off when I wake around 8. Dr says to remove on 30th! Being 4 weeks post surgery on 2 Dec! Can’t wait! But scared and worries how the hell am I going to void!? But the good thing is I voided by mistake a few times in serbia so less worried.
4. Remember eat your broccoli et all ! Take care of your body as you just put it through so much. Now your turn to help give the body what it needs
5. My balls are still higher than my penis so still trying to push them down every now and again for ten mins. Think will increase this time.
6. Started voiding on 28th as dr said I could do 2 days before catheter is out i guess for practise. Weird at first - you need to block the catheter with the plug. I sat down for that day to practise. You have to pull back top pubic area so penis is out or straight. Mine is too tight for penis to come out but I guess over time and once cuts etc heal it will come out with practise. Then you just focus and say I’m calm or whatever mantra you use and you will feel the pee coming and you just go normally. I have a strong stream even Miro when I sent him videos he said was strong. So urine gushes all over.
7. On 29th after my shower I noticed at the Catheter site Pubic region- there was some yellow gunc coming out and it didn’t look good. Sent pic to Dr ( when I say Dr most of the time I mean Dr Borko btw :) he is the best doctor in terms of his bedside manner and compassion patience and getting back to you on concerns!). He told me best to take out catheter that day than on 30th! I wasn’t prepared but had to do it! With the help of my family who took it out for me it was done in the arvo. 
8. There is a video here for how to do it https://www.metoidioplasty.net/resources/videos/removing-suprapubic-catheter.htm
9. Even though I had just peed when they took out the tube there was a lot of pee that gushed out. I’m guessing that was stuck in the tube per say or flowing through. So have absorbent towels around tummy and under you perhaps a changing baby nappy. It does burn a little as the tube is being pulled out but bearable. I’d say 4/10 overall and times of pulling are more like 6/10 but happened maybe twice. 
10. There is a huge hole after removal. We put alcohol swabs to disinfect then covered with gauze and bandage I case of more urine or discharge. 
11. I had a stitch left in as it was grown under skin so removed next day myself with tweezer where you have to hold the knot first with tweezer and the use razor to cut knot (as you cannot pull out with knot you will rip your skin and it be more painful!). The removed knot and picked one side of the leftover stitch and pulled out through skin. Wasn't tooo painful. Just weird and scary as I never did this before! (4/10)
12. The dr said to cover with the gauze and bandage for 3 days then leave open so hole closes. Everyday I would change and use alcohol swabs. There was still some yellow discharge but it started closing day 2 then day 4 and 5 better. The pain in abdomen after removal hurt as I guess the catheter was being removed and trigger all muscles from there to the bladder so I had to relearn how to sit slowly on loo and relearn how to get out of bed and in bed etc but you and the body figure that out. That’s the beauty and power of our magnificent vehicle which I am so grateful for carrying and taking care of me so well and to the best of its ability!
13. I tried to sit without doughnut on 30th as dr said I should be sitting normal etc. it hurt and was so uncomfy like needles poking me then I read and also realised I have dissolvable stitches down there that’s why they hurt. I tried sitting for a long time and different positions and forced myself to be normal. Next day I was bleeding a lot! So don’t force yourself! Use a doughnut. Your body and you will naturally know when to force. (Like you will learn to get out of bed quicker and learn to go number 2 and push tummy muscles quicker over time as the body naturally heals) Try little by little.
14. After catheter removal I noticed my gauze was not only mainly blood. There was a lot of urine stain around. Dr said I need to push from the bottom on balls to remove all p but there is nothing at the bottom of my balls it’s hard and my balls are above my penis that’s why I need to push them down over time. So still figuring that one out.
15. Over a week of peeing (did few days sitting then started standing in the bathtub with a mirror) I noted that there are many streams and that my drain area is leaking and that’s perhaps where the urine leakage mainly comes from. Will need to msg dr on this. But back to the many streams I was initially told I had one fistualla and to hold or block it with a finger and it will go over time with voiding. But then i saw I had 4 holes where irons was coming out from 1) penis 2&3) left and right side under penis (I think from the above mentioned left and right cuts under penis) and 4) where Drain is. I emailed both Dr Borko and Dr Miro about this as this is one of the main reasons for the surgery. To be able to STP! Borko said the left and right side comes from the fistualla he thinks and miro said to try and push back the penis to block holes and void to see. Basically trial and error. I’m not going to lie I am a bit disappointed but I am going to try my best to work it out and let the body heal over time. Though I can’t even see or feel where the dam fistualla is that’s why I think it’s behind the penis. Anyways I will keep trying and figuring out through trial and error. Wish me luck! :) 
16. Dr said I should start pumping but I showed him the red left and right under penis cuts still red and he said ok wait another week and use medicinal honey. I must say my penis swelling has gone down and penis size as well. I looked back at a picture I had sent miro pre surgery and was a tiny teeny bit disappointed as it looks the same bar a little bit thicker but everything else looks the same and they just wrap the balls in each labia and stitch the bottom. Mmmmm I think I just need time for all to settle and move down and into place I reckon. Patience. More patience ... ommmmmmm lol.
17. I also noted I have a stitch in my belly button dr said I should take out. Will attempt tomorrow :/ I believe dr Marko forgot to take it out at my last check up at the hospital when he removed the rest of the stitches from the laparoscopy. Tbf it is right inside the belly button and there is a lot of black crust and I saw a small purple stitch. Hopefully it won’t be too painful *fingerscrossed*
18. My concerns right now 

• 1) when is the bleeding going to stop. They said in time. 
• 2) how to fix the leakage and the other 3 holes including the cuts under penis. They said with time practise and medicinal honey. 
• 3) when are my balls going to drop. Again over time and keep pushing.