12 Week-Recovery, 12-Month Relapse… & Uncelebrated Anniversaries

About 13 months ago I wrote a euphoric post about my gender reassignment surgery. I do remain extremely pleased about the physical result, it looks like it should, and not half bad at that… but the ongoing overall recovery has been a total disaster! One is lead to believe that the recovery for this type of operation will be around 12 weeks, and this is the length of the sick note one is given before one hopefully then returns to work. Except that, over 13 months later, I have yet to return to work having had what I can now quite accurately state to be a 12-month relapse in my health 😦

My relapse started following the standard follow-up visit to the hospital that performed my surgery, where they check that everything has been healing okay… which visually it was. Now I am not for one minute suggesting that the hospital concerned caused my relapse, because I don’t believe that this was the case at all, it was more the combination of (1) the exertion of actually going over there and back and (2) having to cope with taking a carry on bag with me, even if I did on the whole ask other people to carry this on/off planes, up hotel stairs, etc and did have wheelchair assistance at the airports. I packed it lighter than I would usually do, but I think I was just too fragile after my recovery to cope with that trip… as it turned out.

In mid March I felt quite positive about my recovery, and remember a weekend or two where I felt physically much more capable in my recovery, though I did take it carefully. I remember going to house viewings with my now ex-boyfriend (git), doing a bit of shopping, and being able to drive reasonably okay. But the drive from the airport to my home after the hospital trip was noticeably more painful than the drive to the airport before it… perhaps naturally (?) due to having travelled earlier in the day. But the weekend afterwards I was doing a treasure trail with my now ex-boyfriend (git) in his home town and after a while I got extremely sore. This soreness became a daily occurrence – every morning I woke up with noticeable discomfort but moderate soreness which both always markedly escalated as the day stretched past midday into afternoon and evening. As days and weeks carried on things got gradually worse and worse in my new clitoral area; sitting at all for very long was very painful, driving became very bad where I could feel every bump, lump, and dimple on the road through my clitoris, I would get very sore just getting ready to go out. I phoned the hospital at that time and they just said I should try the painkiller Amitryptiline (sp) in what turned out to be ever-increasing and consistently useless doses. By the end of May I really felt things were not really right at all, suffering throbbing soreness, stabbing pains so bad that I was doubled over in pain, and my soreness getting worse just bending down to pick something off the floor. After many long emails of woe from me, I was eventually given an appointment at the end of June by the hospital.

For the June appointment, I travelled VERY light!! This was because I was still at the post-appointment state whereby I could lift nothing much heavier than a 2-litre carton of milk. I was also helped by a superb spell of weather, so all I had to take was my handbag, with a change of top and knickers, a few toiletries, and my little teddy bear to keep me company. I didn’t even need socks, as it was so warm I travelled in sandals! By the time I arrived at my hospital I was in agony, not helped by the bone-crunching ride up in the bus, where every bump went through me and caused agony to my clitoris. The surgeon gave me a rather brutal examination, causing me to bleed in the op area (which was rectified with silver nitrate), and then told me to get dressed and we would discuss options. Except that I was only given one option… painkillers, and pain management. I tried to discuss further surgery, but was told that that option was considered to be destructive (which, in an ideal world, I agree with) and also that he’d never had to do it ever before… to which I think (but did not say) that there is a first time for everything, given the right circumstances. His parting words were “I’d be surprised if you’re in this much pain in twelve months time” – how reassuring 😦 But essentially, I was diagnosed with having a bad case of over/hyper-sensitivity.

Less than a month later I had more new symptoms! The first was that I started with two sore spots, one on each side of, and above, the op area… which have turned out to be, uh, the severed plumbing that I was unfortunately born with; the left side has been sore pretty much every day since, to some degree. Another symptom is that when my soreness elevates to a certain level then when my body is then subjected to further jolts (such as a big bump in the road, and especially those rumble strips to make people slow down) then my clitoris goes into spasm! I’m not talking just the typical isolated stabbing pains of healing but something much, much worse, essentially a severe warning sign that things are critical in the pain department.

After further emails and calls with the hospital, in September I was put on Gabapentin, a neurological painkiller. During a conversation with the hospital it was implied that Amitriptyline was used first as it works for some people and it is the cheapest drug; great! The nurse I spoke to also admitted that surgery could at some point be considered as a last resort, but that other avenues are best considered first, including long term pain management… for which I am on a 44-week waiting list. The Gabapentin dosage was ramped up from an initial starter dose of 300mg a day to 900mg… with the only obvious effect being some horrendous side effects! These included nausea, feeling like my arms and legs were made of jelly, dizziness, and at times severe disorientation… to name just the main ones. My dose was increased further… to 1200mg a day… then 1800mg… then 2700mg (so nearly three grams!!!) – the benefit of this huge dose was minimal, with only the very edge of the pain dulled just slightly.

Since the start of this year I have been on Pregabilin… starting at 2*25mg a day up to my current dose of 2*150mg a day. Any change? Yep… WORSE side effects, some similar to Gabapentin, such as nausea and dizziness, but also my arms (and face) feeling like they are tingling as well as being jellyish, problems with coordination (I can change direction and end up losing my balance), cold symptoms, problems with blood sugar whereby when I start to get hungry it can fall off a cliff and I get to feel really quite odd, and sudden attacks of side effects in the middle of the night. But I have no benefit at all in terms of pain reduction… and in fact I think only when I take a cocktail of this drug with ibuprofen and cocodamol to things moderate just very slightly… except that my symptoms are now worse again, with some new and quite worrying new developments.

Since Christmas, my clitoris has actually started rubbing on the tissue inside of me!!! My clitoris is also swollen ALL the time! Some days I can barely walk more than 2-300 metres before my swelling and soreness go through the roof… and then when I pause to recover my clitoris actually feels like it is deflating!!! My sore spots have also got significantly worse. And I could go on…. but how can any of this possibly be right!!

For most of last year I would visit my Gender Identity Clinic and tell them about these issues, and they would say “Andrea, you’ve had major surgery, it could take quite some time for you to be fully healed”… except that things have steadily got only worse and worse, and have not actually improved at all. Since about November time though, I would visit my clinic and tell them about my new, or worsening, symptoms and they would say “Hmm, I don’t know” or “That sounds odd”! In my December appointment they admitted that it is just not possible for me to function normally and at the start of January, when things had worsened further, they agreed with my request to take up the communication responsibility with the hospital.

So after all of the above, at the start of March I flew to the hospital again… and, once again, by the time I got there I was in agony. This time the surgeon and his assistant seemed a lot more receptive to my issues, and I was allowed to go through all of my various issues, pains, and discomforts that I have to cope with. After an examination, which was so painful that I was soon reduced to tears, the appointment concluded with the surgeon admitting that surgery was the only option left… and this is what I want, because my body has been telling me for some time that nothing is going to improve until my clitoris is gone. Although this is not ideal, my situation is almost as far from ideal as I can imagine at this stage. I am quite happy to do without it, I feel that I am a loving person and not a sexual one. Some may say that would reduce my chance even more of finding a man who would want to have a romantic attachment to me… but I need this further surgery for ME, I have spent far too much time listening to other people in my lifetime and doing what they want, or think is right – that’s why it took me so bloody long to sort myself out in the first place! I even remember wondering if when I made my operation choice of the cosmetic option almost two years ago whether I should have challenged more the possibility of not having a clitoris… but I was persuaded that it would be best to have one to avoid closing down future options too much. At least, as it turned out, I have another reason that has meant that the cosmetic option was best for me… which is that if I had the full option then I frankly would not be here now because I would not have been able to cope with carrying out dilation with all of the pain that I am experiencing now; I have found life difficult enough to cope with as it is!

So I finally have further surgery to look forward to at some point… and I sincerely mean that, because my life feels fairly pointless at the moment and I hope that this surgery will finally resolve the majority of my pain issues and enable me to lead a ‘normal’ pattern of life and enjoy the things that I like doing. I just need to wait for a decision to be made on who will fund this surgery…

As you might imagine, I have not just had to cope with all the different issues of pain but also exhaustion (coping with both pain and medication) and mental issues of depression (wondering when recovery will ever happen), loneliness (where many weeks I don’t see a friendly face for six out of seven days in a week), and suicidal thoughts that have flitted through (but not lodged in) my mind. I have cried a lot these 12 months, sometimes while out and about, in shops or on the street 😦

I haven’t written any of the above in the hope of extracting any pity from anyone still out there reading my blog. I tell you all these things for two reasons:

  1. to update anyone that I know (but don’t meet up with at this stage) who reads my blog so that they are aware of my status should they be interested, and
  2. for anyone who is intending to go for gender reassignment surgery then some or all of the different issues that I have experienced are a possibility, however extremely remote, for you too – it is best that you are prepared for this eventuality, because I don’t feel that the hospital sufficiently emphasised just how debilitating the possible pains might be. However, in their defence I suppose, the hospital has said that they have never known anyone in their history of performing this operation who has suffered as much pain and discomfort as I have, and so perhaps some of what I have experienced is new even to them. So I am the new benchmark for pain!

Since I wrote my previous post I have lived another year full-time… and although it has passed without incident from a real-world perspective, it hardly feels like anything to celebrate. In some ways it feels like a wasted year. Similarly, it has been another year without meeting up with my daughter… and she has implied by text that she made a decision at some point that she doesn’t want to see me ever again.

Hopefully, whenever I have the mental strength to blog again, it will contain more positive news…

2 thoughts on “12 Week-Recovery, 12-Month Relapse… & Uncelebrated Anniversaries

  1. I know you don’t want pity but I’m sorry for your experiences. I had my GCS just 10 weeks ago and I have my own versions of remaining pain. I stayed in the vicinity of the clinic for 9 nights after surgery, and they saw me a couple of times in the stirrups to see how I was progressing. All was okay and normal so I flew home.

    At home I was in a lot of pain doing about anything. I fell into bed instead of laying into it to minimize the pain. I tried loose clothes, snug clothes, anything. Via email the clinic advised I was just going through normal recovery but I finally went to see my local doctor about 4 weeks ago. She looked inside and immediately saw that I had granulation tissue in there that wasn’t healing normally. Another doctor then started swabbing silver nitrate onto the area every week to cauterize it. Yesterday he said it’s 99% okay.

    But I still have other pain, especially in my labia and perineum. This doctor is highly experienced with trans people and calmly advised that it might be a year before all is settled down there. I sure hope he’s right. We’ll see.

    Adding insult to injury I’m having FFS tomorrow. I just want to get these surgeries behind me. I’m 62 and wish to just live my life so I have some urgencies. The doctor said that facial recovery is much much faster because of the higher blood flow. We’ll soon know more about that too.

    I’m so fortunate and grateful to be able to have these surgeries and given a choice I wouldn’t choose to be a cis male instead of a trans female. That said, it’s quite a journey!

    • Hi Emma,

      Thanks for reading, and for commenting.

      I hope your FFS has gone well; I know of people who have had this, and they reported quite quick recovery and good satisfaction.

      You are very lucky that your doctors are experienced with dealing with trans people, because I am the first at my local surgery – whenever I go to GP they say “it looks okay but this is all new to me” or “what did the hospital say”?

      I have some pieces of advice for you:
      1. Don’t spend most of your time just lying, try and get about, even if it is just a bit at a time. Moving about will stimulate blood flow in the body, and this might help you to heal better. You need to push just a bit, without overdoing it, to get your body slowly back to a mode of normal activity.
      2. In the longer term, do not be fobbed off with one type of medication after another. Recovery will be slow, but if you see no sign of recovery in time or in fact if you see things deteriorate like me then demand to be reviewed.

      Best wishes

      Andrea

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