Metoidioplasty: Stage Two

Content Note: In this article I’m talking about metoidioplasty surgery. This naturally involves talking about genitals – my own and in a general sense. I’m going to use words that some transgender people might not use for their own genitals and therefore might find uncomfortable to read. 

Disclaimer: I am not a medical expert and am simply speaking from my own experience and research on the topic of metoidioplasty surgery.

In August 2018 I had the first stage of my metoidioplasty procedure – you can read all about that experience, and what this surgery involves, by clicking here. I ended up waiting 16 months between stage one and stage two.

Metoidioplasty Surgery

There are multiple different options for what the second stage of metoidioplasty surgery can entail. I decided just to have the urethral lengthening — to enable me to stand up to urinate — without going ahead with the planned hysterectomy, and without having a vaginectomy.

Note: I decided not to have a hysterectomy in the end because it doesn’t feel medically necessary for me and recovering from both procedures at the same time seemed pointlessly stressful. I have been advised by a local endocrinologist that if it does become medically necessary, then I can have a hysterectomy at a later date.

For clarity, if you are assigned female at birth and you take testosterone for more than a few months, then the clitoris will naturally get bigger. The metoidioplasty procedure then uses this growth to create a small phallus that the urethra can be extended underneath. For the remainder of this article I will be referring to the clitoris-phallus as the ‘new penis’.

Day One – December 14th 2019

On December 14th I arrived at The London Clinic in Marylebone at 10:00. I wasn’t allowed to eat or drink (even water) after midnight and didn’t have surgery until 17:00 because I was last on the list.

Mr Christopher came to see me during the day while I was waiting and explained that there was a 30% chance of a fistula presenting after the metoidioplasty surgery (a leak in the urethra). He advised me that if this were to happen, we would wait three months to see if the the issue heals and corrects itself, and if not then I would be added back to the waiting list for corrective surgery.

Waiting seven hours for surgery

It seems fairly common that people having metoidioplasty surgery opt to have a vaginectomy and that not doing so can increase the rate of complications. Also, as tissue is used from the vaginal opening to help with the urethral lengthening, it becomes necessary to dilate post-op to get back to normal sexual function (if that’s your thing). I was told I would need to wait six weeks before I could start dilating and “not to put anything inside before then”.

After going down for my surgery at 17:00ish, I was awake and back in my room two or three hours later. I woke up from the surgery in a lot of pain and was given morphine. I remember feeling very tired and my heart rate dropping down, and I was put on an oxygen tube overnight. I also remember trying to eat something a bit later in the night and vomiting.

Day Two – December 15th 2019

I felt much better the following morning and was eating normally again. The London Clinic has surprisingly good vegan options, so lying in bed eating the morning away wasn’t a stress at all.

A nurse came to explain that I had a stent catheter in the urethra, which was a short tube with no exit. I also had a suprapubic (SP) catheter, which is a tube directly into the bladder, inserted through the wall of the lower abdomen. All of my urine would come out of the SP catheter for the next three weeks.

I was given a pair of mesh pants to wear and advised to keep gauze in them wrapped around the new penis.

Although I was initially told I would have to stay two nights in the hospital, I was released after lunch on day two with a five day course of antibiotics, a box of paracetamol and a box of ibuprofen.

I was given a bag to attach to the tube of the SP catheter that also strapped around my leg, and managed to squeeze everything inside of my jeans.

My boyfriend Jack picked me up from the hospital for a walk-tube-train-taxi saga to get home. I could walk slowly but was incredibly anxious about people bumping into me. Going up and down stairs was pretty difficult and slow. I also had to take a few breaks to empty the catheter bag as I was peeing a lot more than usual.

I could get my own jeans off to empty the leg bag but Jack had to come and dress me afterwards (not ideal on the train for space reasons & not ideal in the train station toilets for fear of homophobia reasons). So, I absolutely couldn’t have done this journey alone.

I was given 30 x two litre night bags to attach to the SP catheter for sleeping. This meant I had to be conscious of not moving too much in the night to avoid tangling the tube.

Day Three – December 16th 2019

One of my biggest worries was the memory of my constipation struggle from the first metoidioplasty surgery. I was prepared for this this time with a combination of medical laxatives and fibrous foods. On the morning of day three I already wasn’t constipated anymore, which given my serious fear of popping a stitch from straining was one less thing to stress about.

The pain was pretty low by the third day as long as I didn’t put any pressure on my genitals by sitting down or moving too quickly. I spent most of the day lying in bed and just getting up to empty the catheter.

Day Four – December 17th 2019

On day four I moved from my bed down onto the sofa for a change of scenery and to allow the catheter to flow into the night bag better (my bed is just a mattress on the floor and so I didn’t have gravity on my side to help with the flow).

Day Five – December 18th 2019

On day five I was still completely exhausted. I was slowly trying to get back to work on my laptop from the sofa but mostly just eating and sleeping and staying hydrated.

I took a few painkillers and kept up with the ibuprofen to encourage the swelling to go down, but actually probably would have been totally fine without pain relief.

Day Six – December 19th 2019

Today I went outside for a very short walk with Jack and the dogs. It was very slow going and uncomfortable, but nice to be out of the house and feeling semi-human again.

Dr Finn checking in

A couple of times throughout the day I felt like I really needed to pee and this was a pretty weird sensation.

Day Seven – December 20th 2019

Today I moved from my house to Jack’s house via a five minute bus ride and a 15 minute walk. Not super comfortable but not too difficult either really.

When we got to his house I noticed that I had about an inch of urine in the stent catheter. I called the hospital to ask if this was okay and they said that it could be fine, as long as it doesn’t get any fuller.

I still kept getting the feeling of needing to pee and there was a bit of stinging, but nothing really painful.

Day Eight – December 21st 2019

This morning the urine had gone from the tube but I had about a tablespoon of yellow-ish discharge on the gauze in my mesh pants. This was new so a bit concerned but there were no obvious signs of infection (heat / smell / pus).

We took a 30 minute round-trip walk to the pharmacy to get supplies, which was a manageable amount of movement but I likely could not have done this on my own.

The discharge continued throughout the day and I had to change the gauze two or three times. The inch of urine in the stent catheter tube also came back and fluctuated throughout the day.

Day Nine – December 22nd 2019

The discharge eased up a bit today and everything looked slightly less swollen.

Day Ten – December 23rd 2019

Today I took the train back to London to have the stent catheter removed from my urethra. Sitting down still wasn’t very comfortable and it was easier to stand up for parts of the journey.

Removal of the catheter wasn’t really painful itself but the discomfort afterwards then became painful. I soon started to feel a burning / stinging sensation in the urethra and the urge to pee through it was really strong and uncomfortable.

The nurse advised me that I now had to continue urinating through the SP catheter for a further two weeks. After these two weeks I was to block the SP catheter and try to pee through the new urethra. If this happens successfully then the SP catheter can come out, and if not then I was to wait another week and then try again.

By the time I got back home to Brighton the pain in my urethra was quite frequent and a paracetomol + ibuprofen combination wasn’t helpful at all.

I was concerned that the feeling of wanting to pee through the urethra when I wasn’t supposed to for another two weeks was indicative of something being wrong, so I posted in a metoidioplasty support group to ask if this is normal.

A couple of people responded to say that this pain is caused by bladder spasms but could also be due to an infection. I didn’t understand why a bladder spasm would cause pain in the urethra so decided I likely had an infection and focused on the fact that I could get easily get some antibiotics the following day.

Day Eleven – December 24th 2019

The pain in my urethra was still pretty intense but my GP surgery was closed, so I called 111 to find out where the best place was to go and get tested for an infection.

I was directed to a walk in clinic and took a bus to go get tested. The doctor did a quick urine test and told me that there was no infection and offered no advice on what could be causing the pain. I went straight back to Jack’s house to lie down to try and see if the pain would ease.

Jack had gone to his parents for Christmas, so that evening I got a lift back to my house to not be alone. The pain continued to come in bursts accompanied by the strong urge to pee. I took some codeine but this still didn’t help with the pain.

I went back to the online support group and searched for posts about bladder spasms. The way other people described this pain was identical to what I was feeling. Oxybutynin was the suggested medication to help, so I tried to explain the problem to 111 and to request a prescription.

The call handler wasn’t really sure what to advise, and kept referring to my genitals as ‘the wound’. I was also told during this call that he was going to list my gender as female due to the nature of the problem, ‘to represent what I originally had’.

I didn’t have the energy to argue and eventually agreed that they would have someone call me back.

Around one a.m, 111 called me back and I was finally able to talk to a doctor. I told him exactly what the problem was, what it was caused by and the precise medication that I knew would solve the problem.

He disagreed with my ‘diagnosis’ and first advised I apply a warm flannel to the area. He then decided to prescribe Buscopan — a medication typically used to treat abdominal cramps.

Day Twelve – December 25th 2019

The 111 GP had faxed over a prescription for Buscopan in the night to a local pharmacy and one of my housemates was able to drive over and collect it. I was exhausted from being woken up by the pain throughout the night, and once I had this medication, spent the day in bed just waking up to take more Buscopan and as many painkillers as I safely could.

I stood up during the day to go to the bathroom and got the painful urge to pee again. I noticed a few drops of urine leak through the urethra onto the floor.

I called The London Clinic to ask the nurse for advice on the leaking and the pain. She was unsure on what to advise and had my surgeon, Mr Christopher, call me back.

Mr Christopher was confident that the pain was bladder spasms and told me to go to A&E and have them call him to confirm I needed an Oxybutynin prescription (this likely could have been handled by my GP much easier if it wasn’t Christmas Day).

Mr C said the leak could be a fistula, and reiterated that the risk of this is higher because I had opted not to have a vaginectomy. He wasn’t concerned about it and reassured me that it could be surgically corrected if it didn’t heal itself.

A&E sounded like a lot so I decided to give the Buscopan more of a chance to help first. There were a couple of moments on this day that I started to regret having had the surgery, purely because of the pain and not wanting to potentially have to cope with the pain until the SP catheter came out. I started to question if and why standing to pee was really that important to me.

I had another fairly stressful and mostly sleepless night.

Day Thirteen – December 26th 2019

The Buscopan eased the pain a little but not much. One of my housemates coincidentally works at the local hospital and dropped me off at A&E on their way to work.

The doctor I saw phoned Mr Christopher and then gave me a prescription for Oxybutynin. She also checked again for infection and asked a nurse to flush the catheter bag for me to make sure it was working properly.

Later that day the pain had eased a lot and I could walk around much better.

Day Fourteen – December 27th 2019

Today I felt much more mobile and comfortable, and the Oxybutynin was keeping the bladder spasms under control. Jack came back from his family Christmas thing, and we managed a slow walk down to the beach with my dog.

Jack & Finn, recovery bed pals

The nurse at the Andrology clinic had advised that today I could start having five minute salt baths to encourage the stitches and the scabs to come away.

Day Fifteen – December 28th 2019

Today I was fine to get out for a dog walk around the park and the pain and discomfort was still minimal.

I had another five minute salt bath and this became a daily ritual.

Day 21 – Saturday 4th January 2020

At three weeks post-op, today was time for the first trial pee through the new urethra. This didn’t feel like a vey natural thing to do after three weeks of the catheter. I drank a lot of water to make it as easy as possible but was very anxious about the whole thing.

Although the surgery was really the thing I had been waiting for, this moment felt like the most important part and I was really desperate for it to go well.

I removed the leg bag and attached a flip flow valve to the SP catheter tube. The idea being that this tube is then blocked off, forcing the body to use the new urethra.

I sat on the edge of the bath and eventually managed to pee. I had two streams, one very thin but strong stream from the tip of the new penis and a very clear leak from somewhere underneath.

I was instantly pretty sad about the leak but also just relieved that it was all semi-working.

I was advised that after the first pee I should open the flip flow valve and see how much residual urine was still coming through the tube. It was a pretty minimal amount (under 50ml) which is a sign that the urethra is working as it should.

I continued urinating through the new urethra throughout the day but the leak also continued. Also, as the day went on the amount of residual urine from the bladder seemed to increase.

I have a pre-existing condition that means I don’t empty my bladder all at once, and usually have to void in multiple trips to the bathroom. So having urine remain in my bladder after peeing is totally normal for me and confused the results of the pee test a bit.

I had two catheter disasters throughout the day, with the end of the valve coming off and leaking urine all over the place. The first time it was kind of funny but the second time it just felt like another difficult thing to deal with and I was getting pretty irritable with the whole situation.

Day 22 – Monday 6th January 2020

My flip flow valve came loose in the night (probably should have continued to use the night bags?) so today was an early start with the bed covered in pee.

Fortunately today was the day that I could go back to the Andrology Clinic to have the SP catheter removed.

When I got to the clinic the first thing the nurse asked was if I was allergic to penicillin, and then injected a dose in my butt cheek. I was then told to lie down so that she could release the water from the balloon that holds the catheter in the bladder and pull the tube out. This was totally painless and took just a few seconds.

I then explained to her that I was experiencing quite a substantial leak, and that my pee is coming out of two places. She took a look and couldn’t find a noticeable hole along the underside of the new penis. She then asked if she could have my mobile phone and took some pics to show me that there wasn’t a hole. This was all a bit embarrassing and unnecessary.

I was then instructed to go home and make a video of myself peeing so they could understand where the leak is.

The nurse advised that it would be at least ten months before I could get a correction surgery, if it was decided that I needed one. This was pretty crushing at the time, especially as I’d been mislead about the waiting times before and figured this was realistically likely to be longer.

Before I left the clinic I asked how and when and with what I should start to dilate the vagina with to get the usual width back. She had absolutely no idea and said she would have the surgeon call me with the information.

I then had to wait around the clinic until I had peed to make sure my bladder was working okay without a catheter, but I had no trouble with this and was eventually allowed to go home.

Day 23 – Tuesday 7th January 2020

Without the SP catheter I was instantly much more comfortable and felt more mobile. The hole in the lower abdomen where the tube had been started to heal almost instantly.

Peeing solely through the urethra was a bit challenging for these next few days. The stream from the tip of the penis went straight ahead, and the leak went straight down, so I always had to position myself quite far back on the toilet seat so I didn’t pee on the floor. Having to pay extra attention to continuing to sit down to pee was pretty stressful and not something I accepted easily.

Peeing didn’t feel totally natural, and every time I thought I had finished peeing and stood up, I would get an extra bit of urine squirt out from the urethra. I had to remember to pull the tip up slightly with my fingers after peeing to totally empty the urethra before standing up.

Day 25 – Thursday 9th January 2020

Yesterday I got back to running, although I only managed a relatively short distance before I was exhausted. And today I went back to the gym for a short session with a friend.

I had definitely regressed strength-wise after nearly a month out, but felt totally physically fine and grateful to be working out again.

Today – Saturday 11th January 2020

Today I’m exactly four weeks post-op.

The only really remaining discomfort is from the stitches, which I can still feel all the way from the base of the new penis up to the tip. Apparently these can take up to three months to go away entirely.

I still haven’t had any information back from the clinic about my toilet home movie or about dilating. Communication with them has been a major source of stress ever since the first surgery so I’m trying not to let it get to me too much.

I’m grateful to be one step closer to my goal of standing up to pee, and incredibly grateful for the existence of this specific surgery, which will eventually enable me to pee standing up without having phalloplasty or using prosthetics.

Managing Disappointment

I had expected that after I had healed from metoidioplasty surgery I would (more than likely) be able to stand to pee without any problems. I was gutted when I discovered I had such a significant leak, and pretty stressed out when I realised it’s likely not going to get fixed this year.

In the 16 months I waited between stage one and stage two, I thought about the surgery every single day, I checked my email for communication from the clinic every day, and totally planned my life around being available immediately should they offer me a last minute slot.

I’m trying to consciously not do any of those things this time and to just accept that it will happen when it happens. As half of my pee is leaving my body how it is supposed to, it’s really helpful, and actually really exciting, for me to be able to see and experience how it will all happen eventually once it gets fixed. I think being able to see it is helpful in managing the disappointment of not being quite there yet.

It’s also helpful that the last few weeks of struggling with recovery are still quite fresh in my mind, so I’m not keen to have any more surgery anytime soon.

What I Wish I Knew About Metoidioplasty

The pain of the bladder spasms was the worst part of healing from metoidioplasty surgery and I’m really surprised and a bit annoyed that I wasn’t warned about this in advance.

This seems to be a fairly common side effect of being catheterised and is something I feel all patients should be told about. Not knowing what was causing the pain only added to the stress and contributed to the temporary feelings of regret I felt about the surgery.

If I’d known it was likely to happen — especially over the Christmas period when it was difficult to get access to a prescription — then I could have sourced Oxybutynin in advance and totally gone without those agonising couple of days.

I also think it would have been helpful for me to have spent some time in advance preparing myself for a less than totally successful outcome. Even though I was told there was a high risk of complication because I did not want a vaginectomy, I still didn’t really believe or expect that I would have a problem. That’s on me and my tendency towards wishful thinking.

Taking Time Off Work

I work from home and mostly set my own schedule, so getting back to work was a lot more flexible for me than it will be for people who have jobs out in the real world. My metoidioplasty surgery also (somewhat) luckily happened right before the Christmas holidays, so I had some time off from most of my clients anyway.

At about three weeks post-op I felt mostly comfortable walking around and my energy levels were back to normal. However, the stitches were still pretty uncomfortable and painful at times. I couldn’t sit down in a regular seated position for too long — which would have made a desk job situation a bit of a nightmare.

If your work involves being on your feet or any kind of lifting, then four weeks is probably a realistic goal for a full time job, but obviously everyone’s experience is going to be a little different.

Sex

In terms of sensation of the new penis, I was able to gently confirm (by myself) that it was all good at just after two weeks post op. Because of the stitches and still feeling a bit gross, I haven’t felt comfortable letting my partner go near it, and likely won’t for a while yet.

The surgeon advised that at six weeks post-op I should start to dilate my vagina. This is because metoidioplasty surgery involves pulling skin upwards from inside the vaginal opening to use for the extension of the urethra. This causes the opening to become incredibly narrow.

I wasn’t given any information on how to do this and am currently still waiting to be advised on the process. I’ll likely update this section over the next couple of months when I do have the guidance of the clinic and the experience of having done it.

If you have any questions about metoidioplasty surgery or you’re thinking about doing it and want to talk it out, then feel free to shoot me a message anytime!