Hysterectomy. The Middle Surgery.

Somebody used the term “middle surgery” for the hysterectomy and I liked it so much more than simply “hysterectomy” for our purposes as trans* people.  The word hysterectomy was coined in the late 1800’s to denote the removal of the hysteria of women caused by the malfunctioning uterus.  Nothing about that word is positive to me.  I am not and was not hysterical and there’s nothing funny about it in my mind.  So from here out I will refer to it as my middle surgery.  Will there be a bottom surgery at a later point in time?  Doubtful, but I would not rule it out completely as options continue to improve in the future.

So now that I am almost a week post surgery I want to share some of my observations and experiences with others out there who may be considering this option for themselves.  First, I want to make it clear that I don’t think my surgery was typical.  Normally the procedure should take between 2 1/2 and 3 hours to complete.  Mine took  nearly 8 hours.  Going into surgery no one knew this would be the case.  Is this because my doctor didn’t take a close enough look at me before hand or was it simply impossible to know ahead of time?  I don’t know.  What she found was a lot of heavy scarring, presumably from having my appendix removed 40+ years ago and that my uterus had adhered itself to fatty tissue in my bowel area.  It took her a long time to separate it and cut through the scar tissue.  She performed the entire surgery through 3 small holes with the assistance of laporasopic devices.  I have no idea how this works and since I have an intolerance for learning about this stuff I will never know.  If you’re interested in that, knock yourself out.  The biggest problem with the length of the surgery is that none of us were prepared for it.  I woke up in recovery at 9pm after going in at noon and was very confused.  My partner, I later learned, was left for 8 hours in the waiting area wondering if I was dead or dying.  I woke up extremely grumpy and confused, in pain and unable to speak very well due to them having a tube in my mouth (to assist in my breathing I assume while I was still sleeping).

But I’m getting ahead of myself.  How did I go about getting this surgery done when I didn’t have a real medical reason for it?  Fortunately, I kind of did.  I’m 53 and had not had a period in several years and suddenly started bleeding and cramping again last year so the insurance company was told that I had “post menopausal bleeding”.  This was reason enough for them.  My insurance does NOT cover any trans related surgeries.  If yours does, then you probably don’t need a medical reason for the surgery.  I don’t know much about that side of this.  My therapist put me in touch with a gynecological practice that has a history of providing services to trans men.  It’s a big practice but one doctor there was their “trans specialist”.  Unfortunately, when I called to set an appointment they told me he had retired and they now had a new doctor handling such things.  So I made an appointment to meet with her to discuss the possibility of having the middle surgery performed with a special interest in it being done laparoscopically.  I also mentioned an issue with my bladder that was troubling me.  Once I told the person on the phone I was transgender she immediately started using male pronouns with me and made a note in my file that I was transgender so my doctor and others in the office would know.  I appreciated her efforts, yet, as we all know here, pronouns are very individual and assuming male is not always a good idea.  I just went with it and didn’t say anything but, clearly, I think some education is in order.  I find that, in general, even in the psychiatry world of gender therapists, there is a lot of out of date information that needs to be updated.  The doctor was pleasant and reassuring that she could do the procedure and that there wouldn’t be a problem with insurance due to my recent bleeding issues.  She performed a biopsy that day to rule out cancer and sent me home to get an ultrasound and a mammogram.  I wasn’t prepared for the biopsy and how uncomfortable it would make me both during and for quite a while after it was done.  To her credit, I know she was as careful and respectful about it as she could be.  Nevertheless, I had a two hour drive after it was done and felt like I was having the worst period cramps of my life the entire time.  Another thing to note here is that, since I live in a very rural area, I have to get my trans care up in the city which is 1 1/2 to 2 hours drive for me each way.  All the tests came back normal and I was good to go for surgery.  I chose to use my birth/legal name and pronouns throughout this process and did not press the transgender part of this with my doctor or the hospital.  Others of you who are in different places in your journey will handle that however you feel is best for you.  I didn’t feel it was necessary to use my chosen name or new pronouns at this time.  My line of thought was that this is a one time thing and it’s the last time I’ll have to deal with my girl parts so I just wanted to get through it as quickly and stress-free as possible.  Hopefully I’ll never need to see a gynecologist again after I’m healed up.

I hadn’t had a surgery since I was a kid, and being an anxious sort of person I felt pretty nervous about it.  Genderneutral, here on wordpress, suggested I read a book called Prepare for Surgery, Heal Faster by Peggy Huddleston and listen to the accompanying CD to help me relax and envision a positive outcome to the experience.  It helped calm me down tremendously and the day of surgery I was pretty mentally together and ready to get it done.  I did not ask my doctor or anesthesiologist to say the phrases that the author suggests in the book.  Maybe I should have but I wasn’t comfortable with it so I left it out.  I’m wondering if, because my surgery was difficult, there was a lot of negativity in the operating room and if that had something to do with my grumpy attitude when I woke up.  Also, especially for the first few days after coming home I have felt traumatized emotionally from the experience.  I feel like my body went to war.  I’ve used the phrase “epic battle” to describe the surgery.  I guess I won’t ever know for sure but I’m assuming that as the surgery went on and they struggled with me, even bringing in a second surgeon for “a fresh set of eyes” and a 3rd year resident to assist that there was a lot of negativity in the room.  I’m a sensitive person so for me to pick that up and carry it out with me would not surprise me in the least.  A friend suggested that I hug the anxious traumatic feelings like a small scared child and give it love.  That was a brilliant idea and has helped diffuse the feelings almost entirely, though I still feel it some every day.

Like I said, waking up in recovery I was grumpy and confused.  I have no idea how normal this is.  I just know that it was my reality.  I was upset because it was so late and I didn’t understand why, I was in pain, though I thought I just had to pee really bad (no, I had a catheter so that wasn’t the problem), I couldn’t speak due to that tube thing in my mouth, my left foot felt like it was broken and my left eye felt like there was something in it and kept watering and was blurry.  Also, I was thirsty and I kept asking for Candace who I was told would be waiting for me in my room.  Finally they decided I could go up to my room and it felt like some drunk guy pushed my bed into every thing in his path to get there.  I told him at one point he was a terrible driver.  Apparently this offended him.  Sorry.  Finally I saw Candace, who was totally exhausted from the stress of waiting and I started to slowly understand why it was so late and what had happened.  I was angry that they kept her out there with no word.  I’m still angry about that.

I won’t go into the hospital stay part other than to say I was only in there one night.  I hated my first nurse and was thankful when the morning came and I got a new one, who I adored.  The room sucked and I had to share it with a pregnant lady who couldn’t stop throwing up.  It was hot and I thought the bed was horrible.  So other than that, it was awesome.  In the morning several doctors came to see me, including my own and after they took my catheter out, I ate some food and kept it down, and went pee on my own  they released me to go home.  Two hours in the car was no fun but my wonderful nurse made sure to give me a nice hit of pain meds for the drive home.

Recovery has been pretty easy in general I think.  Candace had the same surgery done with an incision a few years ago and her recovery was much much harder and longer.  Most of my pain has been handled with ibuprofen for the past few days (I’m now at day 6 post op) and before that I only took percocet.  Even in the hospital I didn’t seem to need a lot of pain meds.  Mostly I feel a lot of pressure in my gut area and have to pee fairly often.  They warned me that I would experience sharp gas pains up into my shoulder area but I haven’t had any of that.  All bodily functions seemed to have come back fairly quickly for me and I did not have any nausea from the anesthetics at all.  I still have some bleeding occasionally and have to wear a light pad (sorry!) but hopefully that will go away soon too.  At this point I don’t feel healed and ready to go back to work but I do feel stronger every day.  I think if things had gone better in the OR than I probably would be feeling much more ready to resume my normal life.  My after care instructions tell me not to do any heavy lifting or sexual activity for at least two weeks or until the doctor clears me.  I see her at exactly the two week mark for a follow up so hopefully I’ll get cleared for normal activity.  Still, I would recommend taking it easy.  This is a MAJOR surgery!  It helps us heal quicker that we WANT this surgery, compared to many women who choose this as a last resort and are not happy about it.  But, it’s still a big deal and recovery should not be rushed.  The last thing I want is to end up in the hospital or the gyno table because I did something stupid so I’m taking it easy for as long as I feel is necessary.  At this point I’m giving myself a full week to rest and then I will try to go into work for short days and do light tasks for another week.  That’s the plan anyway.

So now, looking back, what would I have done differently and what recommendations do I have for those of you considering pursuing this surgery?  Certainly, having a surgeon who is open to doing the procedure with or without medical reasons is a must have as well as their willingness to treat you respectfully for your unique reason for wanting to have it.  Unfortunately, many of the steps it takes to get to the OR are not at your doctor’s office and it’s up to you how open you want to be with the other health professionals you have to deal with.  I chose to not disclose my trans status at all along the way other than to my doctor and it was ok for me.  I think finding a doctor that listens to you and is thorough is important.  Like I said before, this is a major surgery so don’t rush through it.  I feel like I kind of did that and, while I think it worked out ok, I wish I had taken it more seriously at the beginning.  Just because a doctor is willing to “deal” with trans clients doesn’t mean they are your best option.  I’m honestly not sure at this point if my doctor is a superstar or a dud.  I’m told that it’s pretty amazing that she was able to do all that without cutting me open and I am thankful for that.  I’ve had no complications to speak of and I’m also thankful for that.  But, I didn’t feel like she ever addressed my bladder issues and in pre op she sort of chided me for not seeing another doctor to address that issue if it was of concern to me.  She also got on me for not having a pap smear prior to surgery.  Ummm…she never told me to do either of those things.  Isn’t that her responsibility?  I don’t know what the heck I’m supposed to do and I would’ve done anything she asked of me to get through this with the least amount of issues.  So, I’m a bit ticked about that.  The other thing that made me apprehensive about surgery with her was her escalating uncertainty about whether she could do the surgery as I desired or if she could actually remove everything I wanted removed.  I went into the OR not knowing what outcome I’d come out with and that was a huge source of anxiety for me.  Looking back, it would have been nice to have a doctor that felt confident in what they could or could not do for me.  To tell me the day of surgery that I should’ve had more tests or consults is a little too late and, in my opinion, kind of crappy.  I didn’t appreciate it.  I wanted her to come in there pumped up to do the surgery full of confidence in the outcome.  I guess sharing her insecurities about it made her human but it also left me feeling insecure.  Part of her initial concern was over the fact that I’ve never had a baby and have not had a history of vaginal sex so everything is really small and tight.  Yeah, yuck..sorry again.  I understand the concern that there just simply may not be enough room to work.  But again, I feel like she maybe could’ve done some testing to figure that out ahead of time.  Find a good doctor that you feel confident in.  That’s really important.  I’m not sure I did that.  Do the tests they require and don’t sweat them too much.  Most of them are not that bad.  It’s better that they have as much information as possible.  Take it easy on yourself and give yourself plenty of time to recuperate.  I can’t stress that enough.  It is major surgery but it’s also a very routine surgery that most doctors have had a lot of experience with.  Our bodies are all different so results and experiences will vary widely.  Go in with a good attitude and confidence in your surgical team and all will be well.

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13 thoughts on “Hysterectomy. The Middle Surgery.

  1. Glad that you are feeling better and are getting up and around. Fortunately you shouldn’t need to use that surgeon again.

    I had an open cut hysto, and found walking to be the best cure for me. The only problem I had was trying to sleep face up (same problem post top surgery) and for about a month I had some pain every time I had to get up (from the dinner table, from the toilet, from the sofa,from my desk, etc.). But the pain was well worth how much better I felt having no bleeding and no cramps.
    I think it is really hard to find a surgeon who has surgical skill and good bedside manners and keeps the family informed. But you sound good all things considered, so keep the focus on healthy healing.

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    • Thanks Jamie. I do feel better everyday and am still taking it pretty slow. Fortunately I can sleep on my side if I want to. I’m very glad I didn’t have to deal with the big incision.

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  2. Thank you for sharing, this post is really helpful for me!

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  3. Poor Candace and poor you! Hugs to you both and happy healing.

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  4. This will be Useful for other trans guys considering a hysterectomy. I’m glad to hear your recovery is going well. Considering what happened, I’m surprised they were still able to do it laporascopically.

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  5. Pingback: Hysterical Man: 4 Lessons Learned Preparing For Middle Surgery | Today I Am A Man

  6. woah. sending love and healing light. cyberhugz

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