Born with the wrong organ

[FairyEve]

I have been struggling with my body for a very long time now. It really hit me when I was put on treatment for endometriosis (at that time nobody knew I had this disease at all, but they gave me the treatment plan anyways) and was put on a drug called Lupron. It went well other than I gained weight and was in menopause at the age of 21. I was in pain management, on drugs, pain killers, and nothing was helping me. I finally saw a specialist and he agreed to do the surgery to explore further into my pain. I was on Lupron for a total of 1 year. The surgery itself which I received at the age of 23, they found I had stage 1 endometriosis and removed it and tested it, which of course came back positive. I was then put on a drug called, which I am currently on, Visanne.

I have issues taking medication, pills, it's not that I can't swallow them, it's I forget to take them and my life is busy.

I go back to see him for a check up and I express that if I miss taking Visanne I am left with blood clots and pelvic pain again. I asked for my options.

When I first met the surgeon I asked him if he could remove my reproductive organs as I do not want them and they've already caused me issues nor want to have children/reproduce. He wanted me to basically try all options and see if I feel the same way. Fair point. (but that's not going to change anything)

He told me the option of having a hysterectomy. He offered this to me because I have expressed this to him before and the day of the surgery they went over the paperwork telling me if they medically need to do a hysterectomy I understood. I think I told him I was completely fine with that because I don't want it. So, I am there and he is offering me a surgery that most have declined to do for me, he is willing to do for me. I have exhausted my options and I don't want to reproduce. He mentioned that the hospital board will ask him questions about it but he said he will explain that I have done X, Y, and Z and that this is what I want done. He explained he would leave my ovaries so I have constant natural hormones.

I have a follow-up appointment with him next week. 6 months ago was the last time I saw him. I get to finally find out the date of the surgery.

Since this is a huge deal for most people and I have been struggling with others not accepting this, that I am doing this, I brought it up in therapy with my therapist. We've talked a lot about it and explored really deep into it yesterday. I explained I started my period at a young age, 9 years old. That my mother told me that I can now reproduce since I started my period. I was confused. I thought everytime I was bleeding I was killing a baby. Not until I learned that wasn't true. It then became this cleanse for me every time I had my period, that I was healthy. Then I found out when someone becomes pregnant they stop their period, so my thought was bleeding inside and the thought of not having a period was distressing for me. I remember thinking why I should give up having a period for a baby? The bleeding was this pride for me, it made me feel healthy. At a young age I never wanted to reproduce or have a child.

I then expressed I was born the right gender but with reproductive organs I didn't want to have. I just want to be able to have a period not have the uterus. I am not sure if this is common? Born the right gender but with organs I don't want to have.

Part of me feels a little alone because no matter what, this surgery is happening but I wish people in my life would be accepting and stop putting judgemental conversations. I have stopped talking about it to many people, it is just sad that I have to basically hide in a closet over this. It is not going to affect them, it is not their life, I just want someone to understand and stop saying those phrases of, "don't you want children, you will regret this, you wont be able to keep a relationship" just really hurtful things. They don't understand I am doing this for me, not anyone else. It's unfortunate that I have to remain silent about it.

I guess what I am asking, is there such a thing in regard to what I explained? Born the right gender but with the wrong organs (uterus)?

Anyways, thank you.

[Karyn]

Hi, FairyEve. I'm not sure that there's a term for what you're describing, and it isn't something I've run across before. Your feelings about your uterus are certainly understandable, however, given that you don't want to get pregnant or give birth, and that it's been a cause of significant physical pain for you.

It sounds like your therapist is a great source of support, but is there anything in particular you're looking for from us around this? (If you just wanted to let all this out, that's okay too!)

[FairyEve]

Thank you for the reply.

I am not sure what I am really asking for.

At the beginning when I told my friends about the news to get the surgery and I am on the waiting list, they reacted the way I thought but after explaining, it became this guilt trip. After telling a family member they reacted horribly telling me, "no" and "you better not" asking me what I was doing, that it was the way to go, that there's other methods.

Regardless of those reactions, it's not their body and it is my choice. I am the one living in it and they don't control me. I know when the surgery date comes, it's like I need to hide it from them. It feels like, I am in the "closet" completely, which is how I feel now.

I have kept the aspect of having a uterus hidden from myself (before I ever had or was diagnosed with endo), I was in denial, that I like being a female but having a uterus made no sense to me. I even went ahead and called surgeons when I was 18 asking them to remove it, most responses, got hung up on or laughed at. But, it feels I am living in a body that I am stuck to deal with something I don't want, I never asked to have a uterus but I have one because it comes with the entire package of being a female.

I am scared what others will think. I mean I already heard it all and to the worst of it to the point I just stopped telling or talking to my friends about it.

I just feel alone. That I am different.
I am not sure what I am asking. I feel alone. Trapped in something that I want out of me but also trapped around people who do not support me that I need to keep a secret.

I want to be happy and being happy comes at a cost.

[Jacob]

Hi FairyEve,

I've been thinking of having some non-reversable procedures too and it's true there can be some really strong reactions from a society which underneath it all still kinda sees our main purpose as being merely to reproduce sexually.

Essentially it's a similar thing to some reactions to ANY birth control... whereby people on the extreme right treat any decision a woman makes to be temporarily (or permanantly) infertile, is 'wrong', or whatever. But as with all of those things the important thing is that you can make your own decision and have the right information.

Lots of the literature I've read for my own decision making has really stressed "This is irreversable, don't do it unless you're 100% sure. Make sure you know the facts." That is true too.

But in terms of having the 'wrong' organs... I don't really think that there is a 'right' way to have organs too! Correct me if I'm wrong, but this sounds to me like a decision about your reproductive choices and bodily freedom more than anything to do with being trans?

[FairyEve]

Thank you for replying, Jacob.

I am not trans, it is about my reproductive organs. I quite enjoy being a female and having my body parts, just not my organs that are able to reproduce.

I saw my surgeon today (last week I need to reschedule) I signed some consent forms and he went over the procedure and what will happen. He seemed a little pressured by the hospital over that he is doing the surgery because he wants to exhaust every other possible treatment. He asked me about the depo shot and I agreed to do that and for me to stop the pill treatment. He thinks I shouldn't have issues without any medication but I feel the pain will come back. I promised that I will try it without any medication and that I have the depo shot available.

I don't know when the surgery would be. He asked me about a "support person" and I told him that a family member reacted badly when I told them and most of my friends don't understand me and ask me judging questions. He told me I need a "support person" in order to have the surgery. Someone to be there to take me home and watch me, basically. I am at a loss, I am not sure who that would be.

Why is it that I am so close to what I want and I need someone there in order to have a hysterectomy? I know I can find someone but I am scared to bring it with friends at this point. I don't need that, that stress in finding someone because barely anyone is in my corner. I can only think of one person, I am not sure if they would be available.

It almost feels I am having an abortion because most don't tell anyone about this and many don't really know they were pregnant and had a procedure. It feels like I will need to get this surgery done behind a lot of peoples back, like family members and act like I still have my reproductive organs.

What type of world is this coming too?

[Alice O]

I am hearing you say: You are not trans. You feel comfortable in your gender, and in most your anatomy. But you do not feel comfortable with your uterus, and you have not for many years. Your uterus has caused you much pain over an extended period of time, you do not want to reproduce in the future, and have overall felt having a uterus didn’t “make sense” for you. You have tried other options, and still feel that a hysterectomy is the right choice for you. And you have found a doctor to perform this procedure for you.

It sounds to me like you have proper information, have done some serious thinking, and have made the choice that is right for you! So, congratulations For what it’s worth, I totally support your decision.

I am really sorry to hear that others have not been accepting and supportive. Like Jacob said, there is still a lot in our cultures that “underneath it all still kinda sees our main purpose as being merely to reproduce sexually.” I am guessing that is influencing some of your friends and family’s reactions…Which is not to excuse the guilt-tripping and unsolicited advice-giving and judging!

As you said, it is your body, you are the expert on your experience, and only you can make the right choice for you. But I understand it's difficult to not have those around us support a decision

You mentioned many times that you feel alone, like you have to remain silent, like you have to “hide in a closet over this.” You absolutely do not need to talk about this procedure with people who you think (or know) will be judgmental or unkind. There is nothing wrong with keeping the choice private! But, if you are comfortable or interested, you are also free to share your experience and decision with someone/some people. I think that might help with feeling less alone. Have you looked into any forums for women who have had hysterectomies to talk to each other, in person or online?

Also, logistically, to have this procedure done you need a support person. This support person will hopefully be both a physical and emotional support before/after the procedure. It sounds like there is at least one friend who you think might be supportive and good for this role. How do you feel about reaching out to them?

[al]

Hi FairyEve-

I just wanted to jump in and echo some things real quick. When I read your first post my face lit up because you and I have had some very similar experiences.

I've been struggling with very painful periods and chronic pain ever since I started menstruating- in high school I was put on every form of birth control known to man (and woman), with no success, and in college I was convinced by a doctor that I probably had endometriosis and that Lupron would solve all of my problems. About two years later, all Lupron (along with tons of pain meds, hormone replacement, hospital trips, physical therapy, etc) has done for me is decreased my pain slightly, stopped my periods, and made me feel weird and sweaty most of the time. So around a year ago I brought up the idea of a hysterectomy to my family/friends/doctors, because at that point, I was feeling like my life was being taken over.

And, lo and behold, I got a similar reaction that you described - lots of people being dubious, talking (almost mournfully) about the possibility of me having biological children one day, talking about how young I am, etc. And my doctor said almost the exact same thing - that there were "many other avenues" we'd have to take first. I couldn't believe that there were several options in front of me, but I wasn't allowed to have the one that I wanted because of how permanent/drastic it is and how young I am. (I wanted to tell him, semi-jokingly, "What if my quality of life continues to decrease to the point where I lose my will to live? How acceptable would that be?") I had to keep advocating for myself over and over again, and only now, a year later, has he decided to approve the surgery (and when he did, he said something about how "it's been long enough").

I found it incredibly frustrating that providers were denying me a solution based on what they prioritized rather than listening to me when I said that a) I didn't think I wanted to have biological children anyway, and that b) I'd rather seriously improve my quality of life right now rather than suffer and keep an organ around for something that I may not even want 10 years from now. This was even more infuriating because of a lot of the implied gender stuff - nothing that anyone said outright, but an underlying current of "you're a woman and poopin out babies must be your one true goal". I personally identify as genderqueer and as a woman, but I certainly don't include carrying a baby around as part of that identity, and it would be really helpful if other people could understand that and reflect it back to me (especially when it's a professional helping me get medical care!). Even close family members have responded with a similar, almost disappointed tone when they realize that this precludes my ability to have biological children one day, with no thought about what this means to me as someone who desperately wants a long-term solution to a persistent problem.

I've taken this gendered assumption/erasure and responded by doubling down - I'm telling as many people as possible about this hysterectomy because I want to normalize it, and I want friends and family and people around me to learn about the different ways that bodies (assigned female, genderqueer, trans, chronically ill, and otherwise!) can exist. I'm even hoping that they'll let me keep my uterus when all is over so I can show it to people during my sex and reproduction workshops.

I'm sorry that things feel as isolating and frustrating as they do. It sucks that it's taken this long and continues to bring up confusing and challenging feelings, but I am really glad that you've been able to advocate for yourself and that you're on your way to getting the care that you need. It takes a lot of strength and courage to be where you've been and where you are.